The not so glamorous side of chronic illness part two

I had to leave some distance between my appointment with the specialist nurse at the Bladder and Bowel clinic, so that I could gain some perspective on it. All that has done has made me more annoyed, which be explained in more detail as you read this post.

The clinic was held at the local hospital, so no long trek into the city with a full bladder. It wasn’t until 45 minutes before the appointment that I remembered that a full bladder was a prerequisite. I downed two cups of tea and a 250ml bottle of diet coke to ensure the job was done well. I then squealed as we went over every bump in the road as I was busting to spend a penny.

I was seen right away and ushered into a room with an examining table a few chairs and a desk. The nurse introduced herself and seemed on first appearances quite reasonable, if a little wet. I was trying my best not to come across as hostile, I have built up this defence mechanism over the years as it leads to less disappointment. I handed over my questionnaire that I had been asked to complete prior to coming including the results from operation “measure my piss”. I had fully expected that my bladder would be scanned on arriving then I would be allowed to relieve myself and be scanned again but no this didn’t happen for what seemed like an eternity. We went through my questionnaire until in the end I had to tell her I was about to wet myself. She seemed surprised, which alarmed me because after all this was her job to look after people with bladder problems, who had come to the clinic with a full bladder as the letter had informed them they had to do.

I was handed a diamond-shaped cardboard dish and told to produce a sample and come back. I managed to fill the receptacle with ease however as normal the flow of urine stopped. I could have strained, changed position as I would normally at home but I decided this was pointless if they were going to scan my bladder to see if there was any residual urine. When I returned she scanned my bladder – roughly pressing down much too firmly for my liking, to the point where I was concerned that I would wet myself. She turned at this point from someone who had been reasonably pleasant to someone whose feathers had been ruffled. She snappily announced that I had 350ml left in my bladder although the scan couldn’t be as accurate once the amount passed 250ml. She made me feel like I had done something wrong by proving I did indeed have issues with my bladder.

The next thing on her hit list was the amount of fluids I consume. This was all done under the guise of it would be knocking out my electrolytes. Had she bothered to read my notes at all or have read my prescription list she would have seen I take salt tablets and Fludrocortisone. Again I felt like I had to defend myself, explaining one of the main symptoms of Dysautonomia is excessive thirst and I had drunk like this all my life. 

During the preamble before I had been allowed to empty my bladder she had informed my husband and I, that her husband had Postural Orthostatic Tachycardia Syndrome – like it was a badge of honour. She also told she had been diagnosed with Chronic Fatigue Syndrome, although I am left wondering to this day what relevance this had to my own issues. It’s not that I wanted to be star of the show but when you attend a medical appointment you expect to be discussing your own issues not that of the medical professional and their spouse.

During the appointment I found out that her husband and I shared a hospital consultant. Her husband had been given the advice to drink 3-4 litres a day. She announced quite proudly that he was on 3 salt tablets – a day. Again I didn’t understand where the competition element was coming from and explained that I was on 6-8 salt tablets a day and that the consultant had never set a limit on how much I could or couldn’t drink. She couldn’t get her head around the fact I didn’t solely have PoTs anymore, my condition had worsened. She never really let me explain about my condition as she was too busy interrupting me to tell me about her husbands awful fatigue and chest pain on exertion. It’s almost as if she couldn’t see me sat in my wheelchair slumping further and further down as I could no longer hold myself up. I came away thinking I am sure this was my appointment where I was supposed to talk about my issues.

When she had informed us that her husband had PoTs both my husband and I were relieved that we wouldn’t have to explain everything as we assumed that she would have done some research into the condition. How wrong we were, this was worse than having an appointment with a medical professional with no clue. It became clear that when I rattled off a couple of well-known websites for those with PoTs or Dysautonomia she had never heard of them. She was clueless and could only go on her husbands symptoms which with it being a syndrome and the fact that mine own condition had progressed past that of PoTs were largely ignored. I had described my condition on the questionnaire as Severe Autonomic Dysfunction, she understood what the autonomic nervous system was but couldn’t get to grips with how the disorder affected me. Perhaps if she had listened she might have done. She admitted she had heard of Ehlers Danlos syndrome but had no knowledge of it, despite her happily telling me I was the third person on her books with the disorder. Maybe I am being a little hard on her but if I was a nurse looking after three people with the same condition, I would have done a little research about it so I would be more able to understand the challenges those patients face. 

I was becoming irked by her lack of knowledge and the constant comparison between myself and her husband. I felt by the end of the appointment if I heard one more mention of her husbands fatigue I may swing for her. She has no clue that on returning home from the appointment – the first time I have been properly out of the house since the 19th December, I went straight to bed such were the levels of my fatigue. Her opening line in the appointment when going through all my medical issues had wound me up – “Oh it’s not much of a life for you” said in such a way that it was assumed that I had a choice in the matter. I responded with “life is what you make it” because I believe that to be true. I live for the good days and manage the shit in between. Maybe I am being too harsh on her maybe she was trying to be empathetic and compassionate. It wasn’t doing anything other than rubbing me up the wrong way and I had to play nice as she was the gateway to me receiving additional treatment.

Have you ever been made to feel guilty about drinking 250 ml of diet coke a day? I have, the way she banged on and on about my diet coke habit you’d think I was drinking 25 litres a day not 250ml. She just wouldn’t let it drop I was quite amazed at how she let rip. Then next came my tea consumption, now I admit I drink quite a bit of tea 8-10 cups a day but as I am awake from 3.30am most days I don’t really think its excessive. Just to shut her up I told a lie and said that they were decaffeinated, all she did was go back to attacking the diet coke again. I couldn’t win with her, it was kind of “mother knows best” vibe I was getting from her. My husband and I have now labelled diet coke as “the devils juice” and laugh hysterically every time I drink it.

It was obvious that she has the same line of patter for each appointment, that caffeine is the work of Beelzebub, along with fizzy drinks and artificial sweetener, all three of which I consume. I was made to feel again that I had brought my bladder problems on myself. My chart was showing her I had an overactive bladder as I was passing less than 250ml on occasion and going 3 or 4 times in an hour. Overactive bladders are caused by a variety of reasons. Some people ( note not all people ) do find relief when they avoid or reduce their caffeine, fizzy drink and artificial sweetener consumption. I was told that I must stop these immediately. I also had to retrain my bladder so I needed to ignore the messages of needing to urinate and try to increase the length of time I hold on. I also needed to start doing pelvic floor exercises at least 4 times a day.

I did manage to squeeze into the conversation that a close relative of mine has Fowler’s syndrome and has ended up with a sacral nerve stimulator. The nurse again was a bit prickly informing me that if I had that then catheters wouldn’t work on me. I pointed out to her that whenever I have been catheterised nothing passes into the bag. I have to take copious amounts of buscopan to relax the valve on my bladder, walk about, drink, cough etc all in all it can take anywhere from 10-40 minutes before my bladder valve will relax enough to let the catheter work. I almost ended up in surgery in June 2014 when my bladder failed to drain for nearly an hour. It really annoyed me that she seemed to dislike me for having more knowledge than her. I guess she wanted someone who would just let her witter on and not interrupt or challenge her.

However she did concede eventually that there was something neurological going on with my bladder due to the acute urinary retention I keep getting. I have been referred to the hospital for urodynamic testing – which maybe a problem as I am allergic to the dye they place in your bladder, I did mention in my questionnaire I was allergic to it. I am also supposed to be being taught at home how to self catheterise so that I can empty my bladder fully before going to sleep and any time that I feel it hasn’t emptied completely. Most days then. I can look forward to having to see her again after being taught how to self catheterise as she will scan my bladder to ensure that I am doing it properly. I am looking forward to being treated like a naughty school girl again no end.

The funniest part of the appointment was when she told my husband if it was easier for me he could learn how to insert the catheter for me. Both of us recoiled immediately. Why on earth would I want him doing that? I can’t think of anything I would like less! He can’t even be in the same room as me when I am injecting my medication. How on earth would he manage to do it without passing out? A firm “No thank you” was uttered by him and seconded by me. He then added “We like to keep our hobbies separate”. I could tell when he said this he had reached the end of his tether with her also. He went back to playing Angry Birds on his phone. 

During the appointment because it was about stuff that makes hubby feel sick (and who can blame him), he kept his concentration focused on playing Angry Birds so he could block out what was said. Unfortunately the nurse didn’t seem to understand he wanted very limited participation in the appointment and kept trying to engage him in conversation. He really wasn’t being rude, he is very supportive of me, he just isn’t so great in a medical setting which is absolutely fine as I can advocate for myself.

There is one thing that keeps going around in my head that really annoyed me (and yes there were some parts that didn’t) which was when I jokingly mentioned that one time when measuring my urine the jug had overflowed making the measurement way past 700ml, she immediately snapped back without a moment’s hesitation “well I have passed 750ml”. I just thought, Jesus you must be an absolute barrel of laughs to live with. Not only had I been entered into competition with her husband, I was now in a real pissing contest with her. What the hell was going on here?

I will be completely honest I have not ditched the devil drinks, why? Because I only get an overactive bladder on the days leading up to urinary retention. I have however started holding on longer rather than going the moment I feel the need to go, which at the moment is working fine. I had got myself into the habit of going frequently because in the past I have found holding on leads to me contracting UTI’s or having bladder spasm or finding that I am unable to urinate properly. If I find the new regime on holding on leads to UTI’s I will go back to not holding on. Had she given me the time to explain any of this maybe her advice would have been different. 

It was disappointing that the session was dominated by her and her husbands own health issues, not my own. I would have liked the opportunity to properly explain and discuss what was going on with my bladder and bowel. I wasn’t given that opportunity. It is a shame that the skill of listening to the patient wasn’t employed during this appointment.

Looking back on it now I consider it one of the weirdest and most surreal appointments I have ever attended. Should I have been in the position where I would never had to see her again, I would have happily written a complaint about her. My hands are tied at the moment with her being the one to refer me and organise me being taught how to catheterise myself.

UTI – Urinary Tract Infections

PoTs – Postural Orthostatic Tachycardia Syndrome

The not so glamorous side of chronic illness

On TV and in films being chronically sick is always presented in such a glamorous way. The protagonist always has perfect hair and makeup, tonnes of visitors and there is never any mention of bodily functions. My blog intends to be a real insight into my life with chronic illness. So that is your graphic content warning. This is nothing like the Hollywood blockbuster portrayal of chronic illness.

This week I shall be checking my dignity at the door when I visit the Bladder and Bowel clinic. My appointment has been set up because I need to be taught how to self catheterise due to ongoing issues of being unable to urinate for hours at a time, only to then end up in acute urinary retention. Apparently one can not simply be taught to self catheterise – even after being referred by two district nurses and a general practitioner, you have to attend a clinic where before you even set foot in the door you have to answer a highly personal questionnaire and measure input and output of fluids.
I understand the need to ascertain why I am having problems in this department however I would have preferred to be taught how to self catheterise first so that I could avoid the painful bouts of being unable to empty my bladder first. Maybe I expect too much but I would have thought reducing someones pain would be the priority not prolonging it.
I received the letter inviting me to my appointment between Christmas and the new year along with a humongous questionnaire and a sheet for me to write down (for three days) how much I drank and how much I subsequently urinated. For the uninitiated you can’t simply guess how much you have urinated but actually have to measure it…..in a jug. I was not impressed with how the information was presented to me the covering letter made no mention of filling in the questionnaire or the pink sheet that I needed to fill in prior to the appointment. I did wonder how many patients turn up to the clinic having not filled out either and it’s a simple fix just to include a few lines stating the paperwork enclosed needs to be completed before attending.
I ended up having to buy two plastic jugs for operation “measure my piss”, one for our bathroom upstairs and one for my chemical toilet downstairs. I also had to get a notebook to put beside the toilet upstairs so that when I measured my urine during the night I could write the time and the amount. It also involved me wearing a watch for the whole three days so that I knew in what hourly gap I could place my latest offering. I guess if you are a “normal” person who visits the toilet to urinate up to seven times a day (link) then it is not too arduous but yes you guessed it I am not normal!!
When I first saw the chart I laughed like a drain – I would have said pissed myself but it didn’t seem appropriate. The boxes in which I was supposed to record the relevant information seemed a little small. I found over the course of three days if I wrote in very tiny writing I could get in my multiple visits in the minuscule space. Nothing like highlighting the fact that your toilet habits aren’t normal than receiving a form to fill in that barely gives you the space to record that fact.
I found out very early on there were certain things that needed to be avoided during this measuring phase for instance wearing anything with toggles or that could dangle down and accidentally find themselves floating in a full jug. Not to give you too much graphic detail (but I am sure this exercise is easier if you possess a penis) for us ladies it involves contortions of which it has been one of the few times I have ever been grateful to have Ehlers Danlos Syndrome. Holding a jug under ones lady parts is difficult enough whilst attempting to go, then bringing the jug back out again without spilling a drop is something I would have paid to see on The Generation Game – now I am revealing my age! There were so many occasions where I nearly spilled the contents of the jug over myself the theme tune from Mission Impossible kept playing in my head.
Thankfully it never happened but I did have an incident where a dog came barging into the bathroom and displayed far too much interest in the contents of the jug. As I batted it away its nose bashed the side of the jug nearly sending its contents flying. It was a nerve-wracking three days. I am relieved (no pun intended) that this is now over.
It did produce some interesting results on average I pee 25 times a day, Drink 6.8 litres and pass around 5.9 litres. Considering I am on salt tablets and fludrocortisone to hold onto fluids and boost my blood pressure I was surprised to find how little fluid I was holding onto. I don’t really know how much I was expecting but to be drinking so much and holding onto so little was a real surprise. I do wonder how much of that fluid is retained as I have been having such horrific night sweats of late that I am having to change my pj’s half way through the night as they are drenched, as are the bed-clothes.
I have always drunk a lot, even as a baby I liked nothing more than guzzling on my bottle which lead to me tripling my birth weight in record time. No one at the time realised it was my constant thirst I was satisfying not hunger. It is only since I received my diagnosis of dysautonomia that we have been able to piece together why I have a constant thirst. It is also one of the symptoms of dysautonomia which I now believe I was having symptoms of throughout my life and it didn’t just suddenly appear in 2007.
My bladder problems surfaced in 1998 after major surgery for the removal of bowel adhesion’s. Twelve hours after the operation I was still unable to pee, I had gone into acute urinary retention and needed a catheter fitted. Not at all uncommon after receiving a general anaesthetic. The nurses at the time told me it was because the surgeons had bruised my bladder during the operation. How true that was I will never know. What I did notice after this hospital stay was that I was unable to hold on when needing to go without leaking. Only a small amount but enough for me to feel self-conscious. In the job I was doing frequent toilet trips were frowned upon so I just had to manage the best I could. Things like Tena pads weren’t as freely available back then when I was 25, so I would rely on pant liners that I changed frequently.
Because of my age I was far too embarrassed to seek help and for the next 15 years I suffered in silence and as you all know if you are a regular reader of this blog the bladder issues have become much worse. I now have problems initiating urination, I have to strain to get my bladder to empty completely and I still leak. In the last twelve months I have been catheterised twice due to going into acute urinary retention. So now it has been decided by the medical professionals that treat me that I need to be taught how to self catheterise.
I didn’t realise how much my frequent toilet trips were impacting my life until I was chatting with my husband about wanting to see the new Star Wars film. He said to me “I would love to take you but you couldn’t sit in the cinema for two hours without needing the loo” and he was right. I can’t watch an hour-long TV programme without getting up for the toilet at least once. At the cinema you can’t pause the film like you can on Sky. This was a bigger problem than I was admitting to myself. It is funny how you adapt behaviours to accommodate your problems without realising, a few years ago I stopped drinking for an hour before leaving the house so I could avoid constant trips to the toilet. When I need to go I can’t hang on because it gets quite painful quite quickly. So a trip to the cinema is definitely out.

I was planning in this post to let you all know how my appointment went however I have been hit by a wall of fatigue and it really deserves a post all of its own!

Dear 2015

This post was nearly ready to be published last week when we had the devastating news that Willow had a tumour in her breast, should the X-rays showed that it had spread, we would have to make the hard decision to let her go. Due to the intense emotional distress this caused both hubby and I, we decided together that I would skip a week of the blog until we knew what the future held, life with or without Willow.

 I am happy to report the tumour hadn’t spread and it was successfully removed. The tumour was a mixture of benign and malignant cells so from now on we will keep a close eye on her. So here it is the post I prepared before even knowing that 2015 was going to be a roller coaster.

*  *  *

Dear 2015,

I know that you are just a few days old but I wanted to give you a heads up, 2014 was a bit shit health wise if I am honest and I would sincerely like it if you would give me an easier 12 months. Although with awful PoTs symptoms starting on New Years Eve, I think its clear what your evil intentions are.
2014 was going swimmingly until I had a glucose loading tilt table test to confirm the diagnosis of postprandial hypotension in February. However it also changed my diagnosis from PoTs to severe Autonomic Dysfunction making my diagnosis even harder to explain to the myriad of medical professionals I would encounter during the remainder of the year.
Following the TTT my health took a massive decline. Just five days after the tilt table test (TTT – for short) I was bed bound and hooked up to my oxygen concentrator 24 hours a day for a week. I was inducing stress levels in my husband that I didn’t think were possible to survive without provoking a heart attack. No one had any answers, all my gp could suggest was going back onto fludrocortisone (florinef for you in the USA) and increasing my fluids. My hospital consultant was on holiday, so my gp and I were winging it. As always my main aim is to stay out of hospital because dealing with idiots when I am unwell drives me nuts, even well-meaning idiots. When I say idiots I mean the ones that although well-meaning presume they are experts in my condition after 5 minutes on google.
Thankfully that time I avoided a hospital stay, the next admission in April 2014 was planned. This was for a trial of the drug Octreotide to see if I could tolerate it and if it prevented my postprandial episodes as I refer to them as. The drug worked but the whole trial was farcical, with me being discharged after only injecting the drug once myself and arguing continually with the nursing staff who kept trying to give me the drug hours before meal times which as I later found out due to my own mistakes would have produced horrendous hypoglycemic attacks. I was also discharged with very little information and with my gp having no way of ordering the syringes or needles I needed to inject the drug because they weren’t available on the pharmacy list which gp’s can order from. This took several months to rectify, oh and I have failed to mention that I had no information regarding the disposal of the sharps bin either. As I said farcical.
May and June 2014 saw repeated bouts of cellulitis and I was very lucky not to need I.V antibiotics to sort it out. I had blood tests and antibiotics coming out of my ears but no cause for these repeated infections was ever found. I am just lucky I guess. I had no appreciation before hand how ill cellulitis can make you feel. The first bout started with what we presume was a spider bite on my knee, the second bout started after I had a manicure and the third and fourth bouts happened after I was bitten repeatedly by mosquito’s. I was very poorly but as always I chose to ignore it as I have found burying my head in the sand always works well. Spot the lie.
The end of June was equally dramatic with Acute Urinary Retention occurring on the 20th June resulting in me being admitted to hospital on the 21st June with a blocked catheter. If I thought I had lost my dignity when having a smear test (PAP test in the USA) in the past I was in for a rude awakening when having catheters fitted and subsequently removed. By the time a catheter becomes necessary you no longer care what it will take to relieve the agony of an overly full bladder. I have very little recollection of these events and I kind of understand women who say they forget the indignity and pain of childbirth. I think I have blocked the memories from my mind. Only to be remembered when I read the blog posts these incidents are contained within.
So six months in and 2014 had been one of the most eventful years of my professional sick persons career. So 2015 I would be grateful if you could keep the drama to a minimum. I don’t mind drama as in I have a winning lottery ticket or a National Newspaper wants me to write a regular column for them, that’s fine. I just don’t want the health drama for me or any of my loved ones. There is too much drama in the world already without adding a whole new level of shitty health problems.
The following six months weren’t remotely better, they just presented different challenges. From March onwards the back pain I had been suffering with since 1999 decided to ramp up a gear. I found out in September I have arthritis in my spine and a flattening of one of my discs. My palpitations, feeling faint etc have been worse for the last six months which has meant me staying on the dose of 3 fludrocortisone tablets a day. The steroids help but the bring other issues such as sleep problems and constant hunger. My weight has gone up and down like a yo-yo in the last 12 months. An outsider may think “weight should be the least of your problems” and I agree it should but I am so unhappy when I can’t fit into my clothes. I can cope with my health being awful as long as I don’t put on lots of weight. My weight seems to be the final straw. With my back pain being as bad as it was I spent much of the summer in bed in vast amounts of pain. With further reduced mobility I ended up putting on weight.
One good part of 2014 was finding out the answer to why my back was painful and discovering that gentle Pilate’s could strengthen more core muscles enough to alleviate that pain. I found joy in completing the exercises and used my Pilate’s time as me time. I could relax and found myself feeling calmer…..until my knees really started to hurt. I think the strengthened core muscles changed my gait which then altered the pressure on my knees or maybe the pain in my back was masking the pain in my knees. It doesn’t matter because in December 2014 I could add early onset arthritis in my right knee and  possibly all of my fingers.
December 2014 was eventful due to another bout of Acute Urinary Retention and a urinary tract infection to boot. So again 2015 I beg of you don’t meddle on the health front please. The last 12 months was hard to deal with and I am no longer bouncing back like I used to. My husband really can not continually cope with this level of stress. As a result of my declining health he has now put on several stone in weight as he is a stress eater. I want him with me for a long time, so please lay off me for a while so that he feels he has some kind of control in his life.
Last year I made a huge list of New Years Resolutions, it was the first time I had done so for many years. Looking back at the list I realise I didn’t accomplish any of them due to the health issues. That was a bitter pill to swallow.
One of my resolutions wasn’t affected by my health, I wanted to get back into creative writing…..I didn’t, I got back into blogging after an 18 month break. It has been one of the most rewarding things I have done. I have made a very special friend who I would never have met without my blog. I was nominated for a Wego Health Activist Blog award and I more than doubled my readership in the space of ten months. Something I am extremely proud of.
So if I maybe so bold 2015, I have provided you with my personal wish list for the next 12 months. I know you can’t cure my numerous medical conditions but you can be kind.
– I feel its time you gave me a break on the health front, just keep me ticking along with the conditions / symptoms I am used to. Don’t go throwing me any curve balls because I really don’t think I have the energy to cope with them.
– Please limit my exposure to idiots in the medical field. I have been worn down by the constant exposure to them last year. Let someone else have them for a change or just educate them a bit better before you release them on the general public. I can’t be the one to educate them all the time.
– Before one of my well-meaning acquaintances sends me the link to a blog where someone cured their PoTs through adopting a sugar-free, Vegan diet may you give them a change of heart or make their Internet connection go down until they decide I have probably already seen it several times.
– If they do send it let me receive it far more graciously than I did in 2014 but then again maybe not a little sarcasm never hurt anyone.
– If I do go into Acute Urinary Retention again can you make it on a day when I have shaved my legs and waxed my bikini line? It just makes me feel better to know that these are done if someone is going to be rummaging around in my lady parts.
– Please don’t let it be this year that my smear is due for the reasons above plus it is painful due to my retrograde cervix and dislocating my right hip when I adopted the “position” last time.
– If any insects or arachnids bite me this summer please let me avoid cellulitis and high dose antibiotics. By attack number 4 it got quite boring and the medication made me feel really nauseous.
– Please get my gp to admit fully that I have arthritis in my fingers. Seemingly them swelling up, being stiff and painful just isn’t enough proof when I already have arthritis in my spine and knee. Please stop him holding onto the belief that its my stretchy ligaments causing the problem and admit it is EDS causing early onset arthritis.
There are lots of things I could ask of you 2015 but I really don’t want to appear greedy. If you could just make it a smoother ride this year for me and my loved ones it would be greatly appreciated. I know there will always be bumps in the road so let me face them as I faced the ones in 2014, with humour and wit.

 

Acute Urinary Retention …..again…….

So just when I thought my health was settling down again after being attacked by a nasty virus, I managed to go into acute urinary retention again this week. Oh the joy!

On  the evening Wednesday 10th December I noticed ( well I couldn’t fail to notice) I had a lot of pain in my abdomen. It was one of those pains that you know you have had before but you just can’t place it. I ran through the list of usual suspects adhesion’s, menstrual cramps etc but nothing fitted the bill. All day I had been having problems urinating but I just didn’t realise that this was the source of the pain.

I spent Wednesday evening covered in hot water bottles. My back ached, my abdomen hurt and I was in an evil mood. I am usually quite a relaxed laid back person, so this change in mood was quite unusual. Normally when I am in pain I go very quiet and withdrawn yet with acute urinary retention I become the devil incarnate. I snapped at both hubby and the three dogs. Eventually took myself up to bed so that I could try to get rid of this awful pain and mood.

Thursday morning things were much worse. I could still urinate but it was just a trickle and I wasn’t emptying my bladder. I needed to really concentrate on the procedure – something that should just happen and I was having to push (almost like having a baby) to get anything to come out. After a few hours of this I was completely exhausted. As I had woken up at my usual time of 3am – that’s a surprise, I rang the doctor’s surgery the minute it opened at 8am. Unfortunately the receptionist wasn’t one that I normally deal with and was very annoying. She may not have been irritating under normal circumstances but it took all my self-control not to unleash my pent-up fury on her.

 After immediately introducing myself as Rachel Morris, I  asked very politely despite the rage bubbling under the surface if I could speak to my own GP rather than the duty Dr as my medical history is very complicated. The duty doctor was a locum. At the time I believed I was suffering from a UTI not AUR, so even though it was a simple infection it is not something I would have asked a duty doctor to deal with. Not only is the duty doctor dealing with calls like mine he is also seeing patients. I needed someone who knew my complex medical history. I tried to explain this to the receptionist but it seemed we were in a “computer says no” situation.

To give him his due the duty doctor rang me back within 30 minutes. I have previously had to wait hours for such a call. However I am never straight forward. UTI’s tend to have the textbook symptoms of foul-smelling urine and burning when urinating. I have never, not even when I have been hospitalised for a kidney infection had foul-smelling urine or discomfort on urinating. You see my body just doesn’t do text-book. My urine sample I had produced because I knew the duty doctor would insist on testing it before giving me antibiotics was slightly cloudy and was an absolute nightmare to gather. The doctor was very nice but clueless when it came to Ehlers Danlos Syndrome and Dysautonomia and I wasn’t in the right mind frame to use this as a teaching opportunity.

Fast forward a few hours and the pain in my kidneys / bladder is much worse. It’s now a 9 out of 10 on the pain scale. I am unable to produce any urine when I try to go, so things are pretty dire. Hubby was working a late night, as he has taken so much time off for me this year and practically zero time off for sickness himself, I really didn’t want him taking the day off. So I pretended everything was ok in the hope that it would be. That backfired spectacularly when I had to ring him just as he had just pulled into the car park at work and tell him to turn the car around.

Before ringing hubby I had rung the doctors so it was all systems go.On my notes it is written that if I am in urinary retention the district nurses have to be called immediately so that they can come to fit a catheter, to avoid having to go to hospital. There were no questions asked as this plan was put in place after the events in June, as if you have gone into AUR once you will more than likely do it again. I had been lucky and managed just under 6 months.

Within 5 minutes the locum doctor who had been a bit of a nightmare earlier rang. He told me he had called the district nurses and they would be coming to me this afternoon. He also gave me a 7 day course of antibiotics. Now normally patients are restricted to a 3 day course. This is never enough for me and I end up having to battle for a 5 day course. A 3 day course just means that the infection won’t clear and I will be contacting the doctor again. So despite my confused state it was in shock to learn there would be no battle.

It took over 3 hours for the District Nurses to arrive (not their fault as they have many patients to see and I was an emergency squeezed onto their list). In that time my mental state started to deteriorate. I was sleeping because that was the only way I could escape the pain but on waking I was terribly confused. By the time the nurses arrived I hadn’t urinated for 4 hours, not even a dribble despite drinking and self medicating with buscopan. I was so relieved when they walked into my bedroom I could have cried.

 Having a catheter fitted means a complete loss of dignity with someone rummaging around in your lady parts, whilst they play hunt the urethra. It is very easy to insert the catheter into the vaginal canal rather than the urethra so hence the rummaging. As I have said on other blog posts I am an intensely private person when it comes to my body. I never flash the flesh and am not comfortable parading around in a swimsuit, let alone having two strangers messing about with my privates. The nurses were lovely at no point did they make me feel uncomfortable and they did everything they could to put me at my ease.

During the catheter insertion I kept getting the giggles as every time the nurse lent over me, my knee hit the iphone in her pocket and it would start playing music. I don’t know why it made me laugh so much but it really did. It turned what could have been quite a humiliating experience into a surreal one. Its difficult not to giggle when music is emanating from your nurse.

My previous experience of catheter insertion and removal has been incredibly painful so I was quite hesitant to have it done again. These two knew their catheters and it was completely painless. I was aware that there was a plastic tube going up my urethra but it wasn’t agony like it had been in June.

It wasn’t plain sailing though once the catheter was in, my bladder valve clamped itself around the tube and refused to release any urine. Much to the consternation of the nurses who had never seen that happen before. Unfortunately I have, it happened when I had the first catheter fitted at home and it happened again in hospital the following evening when a new one was fitted after the first one had blocked. For the next 10 to 15 minutes the nurses and I tried everything to get my bladder to empty. It wasn’t playing ball and then out of nowhere I started to get bladder spasms. If you’ve never had bladder spasms thank your lucky stars. I am good with pain but these little buggers will drop me to my knees in an instant. They also increase in intensity. After much muffled screaming, I begged for the catheter to be taken out. It was removed and I shuffled as fast as I could to the bathroom.

After a bit of hesitancy the valve opened and I did the biggest wee in history. I shouted to the nurses that I was going to be some time, which was met by them with cheers and clapping. As soon as my bladder started to empty the bladder spasms subsided. Both the nurses and I have no idea why after not going for hours or releasing any urine into the catheter, my bladder decided to kick into action again. As I have said before though, none of the illnesses I have had in my life have ever followed what is written down in medical textbooks.

 

The district nurses are contacting my GP to insist that I now get taught how to self catheterise so that I can to avoid needing an indwelling catheter fitted. Self catheterisation would be a good thing to be taught as I am having more and more days where my bladder refuses to empty properly. Hopefully if I was taught this I could avoid going into acute urinary retention and hubby wouldn’t have to take emergency leave for this issue.

 

It took from the Thursday afternoon until the Sunday for my bladder to finally get back to normal. I have been left once again feeling very drained by it all. I have  been sleeping during the day (pretty much unheard of for me unless it’s a postprandial episode) and have zero energy. This has left me stressing out something stupid over Christmas which is rapidly approaching. I am trying to calm down a bit and stop making everything into a big deal.

 

As this is my last blog post before Christmas, I would like to wish you all a Merry Christmas and a Happy 2015.

This too shall pass

This too shall pass

 

 

I have been repeating this quote over and over in my head since February when my health first started to decline. Its the one thing that has kept me going through a year which I can honestly say is the toughest one I have faced.


In February I took a tilt table test, this was to look at my body’s reaction when I ate or drank because I have postprandial hypotension. Before the test I had to consume 250 ml of lucozade which is just pure sugar and tastes like syrup. Once they had their base line measurements I was then tilted. According to my consultant it was the most impressive one yet. However for some reason the tilt table test triggered off my symptoms in a way no one could have expected or anticipated.


My previous tilt table test in 2011, the one that got me diagnosed with postural orthostatic tachycardia syndrome had left me bed bound for around 5 days. I had been expecting the same with the one in February. This time I was fine for a few days and the wallop! I ate my lunch and then felt my heart rate increase (which is totally normal for me) however after several hours my heart rate had not come down and I was feeling short of breath. Having been in this situation before and knowing that the local hospital would admit me but then do nothing I saw no point in panicking….just yet. I rang my gp the following day and went back on fludrocortisone.


My husband ended up taking a week off from work to look after me. To ease my symptoms I used my oxygen concentrator and ended up staying in bed for well over a week. Since then I have never got back to my pre tilt table level of health.


As those of you who read the blog regularly and follow me on facebook on my The Myasthenia Kid page will know this year I have battled cellulitis 4 times, I have been admitted to hospital because my bladder decided to stop working and I needed to be catheterised. My autonomic nervous system symptoms are still pretty awful. As I write this my head is swimming as due to the heat I am continually feeling faint and dizzy.


Putting all the dysautonomia symptoms aside (I have kind of got used to them horrific as they are) my major battle at the moment is my chronic back pain. Bad backs seem to be a family legacy. Obviously my mum is waiting for major spinal surgery (as written about in Democracy in Action part one and two), my father has also been diagnosed with back problems and needs to have steroid injections but is refusing them at the moment much to the rest of my familys (mum, sister and me) annoyance. My sister suffers with awful back pain and I have been slipping discs in my back from the age of 16.


The pain in my back and the referred pain is so bad that it is depriving me of sleep and making me feel sick. Its not massively high on the pain scale, I wouldn’t rate it much above a 5 -6/10. However it is constant there is no relief.


On a good day I have a burning sensation down my left leg and an altered sensation, my leg feels wet and my foot can feel like I am wearing a wet sock. I also suffer with iliac crest pain – it took me years to work out what this pain was. I can push through this and enjoy whatever I happen to be up to. 

 

I have whats called leg dominant back pain, which means I have very little pain in my back, most of my pain is caused by the nerves that run from my back down my legs.

 

On a bad day (and unfortunately I am now having more of these than good days) the pain is down both legs, my knees throb. My buttocks and the backs of my legs ache and burn and I have a small amount of back pain. On a very bad day the back pain is awful and any sudden movement will trigger a wave of spasms. I have also noticed that my legs will feel heavy and I feel like it takes a real effort to move them. Keeping a diary of the pain I have also noticed there is a connection between the bad pain days and decreased function of my bladder and bowel.

 

Nothing has happened so far to make it a medical emergency such as double incontinence or not being able to go completely for hours. Other than that incident at the end of June when my bladder packed up completely and I ended up with acute urinary retention. 

 

To be honest I have been living with this nerve pain in my leg since 1999 when the original back injury occurred and I never really gave it much consideration until the lyrica (pregablin) I have been prescribed stopped working and my mum found out what a terrible state her back is in. 

 

My back symptoms ramped up at the end of March and I decided to do what I always do which is ignore them. However the pain has increased to such a point now where I can no longer do so. Due to it being nerve pain my opiate pain killers have zero effect on it. Doubling the lyrica dose at night worked for a month or so but I have now had to double that dose and double my morning dose. 

 

My back has got so bad that I am unable to do the things that I want to do. Combining the dysautonomia and the back issue I am no longer able to complete the small tasks around the house that I have always done. Things are starting to build up and get on top of me. 

 

On Friday I realised that I can’t do this anymore and had to ask for help. So I now have a cleaning lady who will be coming for 2 hours a week to help me keep things straight. I can’t keep on asking my husband to do more and more as its just not fair on him to be working full time looking after me and the dogs and then expecting him to do a massive clean as well. At least this way his days off will be spent spending time with me instead of impersonating Mrs Mop.

 

I find it hilarious that I am so house proud now, before I got sick I didn’t do housework unless someone was coming to visit. I was working full time and we were always going out somewhere cleaning seemed like a real drag. Let me be clear my house was never like something off hoarders but it was dusty and things weren’t always put away. Sheets and towels were always washed once a week its just what I call the finer detail was never attended to. 

 

 

One of my fondest memories is my mum coming to visit me in my flat and her saying “you don’t iron your sheets then?” I replied “when I don’t work full time it will be top of my list”. I will be honest ironing my bedding has never made it onto my list of things to do even though I no longer work. To me ironing bedding is as pointless as ironing underwear, life is just too short (and obviously I am physically unable to be stood at an ironing board long enough to iron 2 sets of king size bedding!).

 

As I say my house could never have been described as something out of Hoarders (one of my favourite shows that I like to watch and feel smug. I do know these people have a mental illness before anyone decides to give me a piece of their mind!). It was dusty and well lived in. I had a friend once come over and write clean me on the dust on the TV screen. So I wasn’t exactly on top of the cleaning back then. Plus hubby wasn’t into it too much either having the old fashioned impression that housework was my job. Thank goodness that outdated attitude of his has now gone. I always find it amazing when I look back and see how much both of us have changed from before I got sick.

 

 

 My attitude to cleaning changed when I was at home 24/7 I wasn’t prepared to sit in a mess all day everyday. Over the years I have become obsessively house proud which in turn has made hubby more so too. I am guessing some of the reason for my obsessive attitude towards keeping the house tidy was that I didn’t think it was fair on hubby to be working all day and coming back to a mess. It was all about what I could contribute to our relationship now I wasn’t working. Despite the fact that I would suffer enormously trying to keep on top of things I still felt that being at home all day meant I was responsible for everything in the home. It was never something that my husband demanded or expected it was an unrealistic expectation I placed upon myself. He didn’t care if things weren’t done as he would sort them out when he had the time. 

 

I always felt things had to be perfect. I am guessing that controlling my environment was a way of having some control in my life. I cant control my illness or how I will be feeling hour by hour, so by controlling how our home looked soothed me psychologically. Now I can no longer do this it troubles me and makes me feel guilty as I am yet again contributing less to our relationship. My mantra “this too shall pass” is continually on my mind.

 

Hubby actually told the cleaning lady she won’t have much to do. I beg to differ, hubby still doesn’t see the finer detail and I am fed up with the battle of getting him to hoover the stair carpet and the bedrooms. At least this way I know that they will be getting done and without argument!

 

It was a very bittersweet moment when I realised that I could no longer manage the little household chores that I had completed to ensure we kept on top of things. I am sure if we didn’t have the three dogs there wouldn’t be as much mess but as I could never part from them admitting I needed help was the only solution. It does compound the sense of failure I feel. I am unable to work and now I am unable to keep the house tidy. It makes me ask myself what can I do other than just survive at the moment. I will admit I shed a few tears over this decision.

 

Its going to be very strange for me having our cleaner in the house doing the jobs I used to do (and more). I am already getting anxious about it, what if the dogs scare her – they can be quite noisy on first meeting people, what if she thinks our house is really dirty, should I clean before she arrives? Its all down to a fear of being judged. She has already text me to reassure me that its ok to ask for help. It doesn’t stop the anxiety though, if there is something to worry about I will find it.

 

So here I am the day before my cleaning lady starts trying to distract myself from the anxiety that I am feeling. I have to create a list of the jobs I want done tomorrow…..which I still haven’t started because I feel guilty that I need help.

 

I know that “This too shall pass” however I am beginning to wonder when this year from hell will end. I have never been one to wish the year away but this year is one that I wish would just go. I want a do over and get back to how things were.

 

Emergency Admission / Weekend from hell part two

*WARNING*

 

As with part one of this post I am going to warn you now, it will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


If you want to know what an absolute bitch of disorder EDS can be and you aren’t afraid of the mention of lady parts continue. 

 

 

 

*    *    *    *

 

After the doctor had finally cannulated me and got the blood she needed she got the nurse to draw up three different drugs. The first was Zofran (generic name Ondansetron) an anti sickness medication, the second was oramorph and the third was buscopan. As soon as the nurse started to inject the Zofran my arm was on fire. I have had IV meds that had stung / burned before but she had given no warning this would do so. As she then put the buscopan in the burning got even worse and I started to scratch at my arm. As she got halfway through administering the morphine I told her to stop. She told me “morphine can make you itchy” I told her “I take morphine regularly but it doesn’t make my arm itch, it makes my legs and abdomen itch”. She then said she would flush the cannula to see if that helped at all, it made it worse and I begged her to stop. As I looked at my arm every vein had turned bright red and the underside of my arm from the wrist to above the elbow looked like it had been scalded by boiling water.


The nurse promptly checked my blood pressure which was fine (actually a little high for me at 114/80 but I was in pain) and then left the room for 20 minutes. Now as I always say I am not a medical expert but if someone is having a violent reaction to a medication and has nearly been in anaphylaxis before, would the “safe” thing to do be to leave them in a room with the door shut and unable to call for help if the reaction got worse? My answer would be no but apparently thats a perfectly safe thing to do at my local hospital.


I kept setting off alarms on the monitoring equipment, when I am very tired or in pain I stop taking breaths. Its not deliberate but its like my body forgets to breathe. My oxygen saturation did not drop below 100% (which as a smoker and sometimes heavy smoker I was pleased about) but I was now going for over a minute without taking a breath, the alarm sounds at under 8 breaths a minute. This isn’t the first time I have set monitoring equipment off in this department and every time it provokes no response from the medical staff. Thats a little disconcerting when you are in the middle of an allergic reaction!


Eventually the nurse came back into the room with a porter and I was informed I was being moved up to a ward. The nurse that had been “treating” me, seemed to have a compulsion to pull on the catheter tubing at every available opportunity, despite me telling her that this really hurt.


I have no pain at all when a catheter is fitted (which is odd as on some websites the pain associated with this is on a level with a lumbar puncture). My pain starts as soon as the balloon which keeps the catheter in place is inflated. After that for about 12 hours I can’t sit down without pain and any slight tug or knock of the tube is excruciating. Despite telling the nurse this it seemed to be her mission to mess about with the tubing at every opportunity. So yet again I was in agony due to someone else either a) disbelieving what I was telling them or b) she just didn’t care.


I thought I would be heading for EMU (emergency Medical Unit) which is an awful ward to be on. The nurses are terrible on this ward, having been on it on several occasions, I can tell you a crash course in empathy, compassion and the basics of nursing is needed. Instead I was going onto a “proper” ward with proper nurses you know the caring kind that Florence herself would be proud of.


I was seen by the nurse on this ward within minutes of being admitted. I am really sorry but I can’t remember her name. She was a bubbly blonde woman with a lovely brummie accent. She did everything properly, I was asked about my mobility, how they could help me (with toileting, washing and dressing), who my next of kin was, religion, diet and how my bowels worked etc. This is how it is supposed to be done, by someone who asks probing questions and assumes nothing. This nurse and the other nurses and healthcare assistants on this ward are a credit to the hospital and if I am honest had I not had that kind of nursing care I would have discharged myself.


I probably sound like a stickler for rules and possibly a person with aspergers tendencies. I am not that person, I do however get infuriated by laziness and assumptions. Laziness and assumptions don’t provide good medical care. As a medical professional you need to listen and understand your patient. If they don’t do that I start to lose faith in their abilities. A patient is a person, not a condition or a plaything for you to practice your skills on. Treat me with courtesy, respect and that I am not an idiot and it will go a long way. Treat me as if I am below average intelligence and without respect and you will have a hostile patient on your hands. Its a shame more medical professionals don’t apply that approach, yes they have medical knowledge but learning about a disease or condition does not make you the expert. Living with it 24/7 does.


At around 1am I saw a student doctor. Now normally I enjoy interacting with student doctors, they are young, enthusiastic and eager to absorb any information they can about a condition they haven’t come across before. This one seemed to have a language processing deficit, not ideal. Again despite telling her the catheter had only been fitted the day before, the conversation seemed to be a little like the film groundhog day. I dont know why it was impossible to believe that it had been fitted on Friday, it was now the early hours of Sunday. But she was insistent the catheter had been in for a week. I wish that I had brought in the paperwork from the district nurse when I set off to hospital as clearly as a patient I was unable to distinguish 24 hours from a week. Maybe she had the assumption that as I used a wheelchair my disability was mental rather than physical?


As a good patient and a professional sick person I had brought all my medication with me. Yet despite all this the student doctor added medications that I don’t take to my drug chart and got the dosages incorrect. Despite having all the pharmacy labels on them. How that is possible? I am at a loss to understand.


She was very through in her exam, my abdomen was palpated and my chest was listened to. She then did a basic neurological exam, checking the power in my legs and my reflexes. It startled her that my left leg was cold whilst my right leg was hot. Again having repeatedly told them that my autonomic nervous system is screwed, I couldn’t understand why this would be so “amazing”. 

 

I am interested in medicine I always have been. Plus without this basic understanding I would never have discovered what was wrong with me. However she nearly died of shock when I told her that I knew she was checking for cauda-equina-syndrome. I knew that this check would culminate with a finger being inserted into my rectum. Having had numerous operations on my bowels no hospital visit would be complete without this examination!


She disappeared outside the curtain and then returned with a nurse. I asked “are you selling tickets?” the nurse laughed but the joke seemed lost on the doctor. As I assumed the finger up your bottom position, the nurse tried to explain what was happening, I interrupted explaining this wasn’t the first time I had been subjected to this examination. The weirdest thing about it was you have to grab the inserted finger with the muscles of your anus. It takes a little bit of thinking about as its not something one does on a regular basis. I passed with flying colours, although I am a little unsure if thats something to boast about?

 

Doctors that treat me are always obsessed about constipation due to the opiates I take. I rarely suffer from constipation I can open my bowels up to four times a day, despite all the morphine I take. I am coming to the conclusion that this annoys them as I should be on a diet of laxatives like most people would be when they take opiates. The only thing that does make me constipated is codeine.

 

 As she whipped her finger out of my rectum she said ” Your rectum is completely empty, you’re not constipated”. Now having informed the doctor of the fact I don’t suffer with constipation, this wasn’t a surprise to me. My bowels are so regular you could set your watch by them. Sometimes like on early Saturday morning when my bowel had switched off on the Friday as my bladder had done, it went into freak operating mode and I was stuck on the toilet for 90 minutes. Again the doctor wouldn’t believe me that I didn’t have diarrhea, it was normal stuff. I wanted to place a bet with her that at 8am I would have a normal poo but as she hadn’t listened to anything I had said previously it would have been a wasted effort. And yes bang on 8am I had a poo (in case you were wondering!).

 

As this student doctor was on a surgical rotation I expected her to have a little knowledge about surgery – silly me. She had clearly read my notes as when she saw the scar on my stomach she asked if that was from the intussusception at age 3. I told her no, that was a scar from having adhesions removed in 1998 and subsequent exploratory operations, the last one being in 2002. She then spent a couple of minutes looking at my abdomen. She said to me “I can’t see any scars form laparoscopic surgery”. 

 

Despite it being gone 1am, I knew I was dealing with an idiot (or if I wasnt writing a blog a FW – you work out that abbreviation!). Surgery increases your risk of adhesions by about 50%, I had already told her I had adhesions removed in 1998 – so thats 2 surgeries. Once you have bad adhesions, as I do, laparoscopic surgery isn’t possible. A student on a surgical rotation should know this, its a basic piece of knowledge. Plus if she had felt my scar and  around belly button you can actually feel the thickening of the tissue and the bottom of my scar is tethered meaning it goes through the skin and has stuck to the abdominal wall. Maybe it was her first day but I wasn’t the one pretending to be the expert. Which is what annoys me about some doctors, they poo poo (pardon the pun!)  what you tell them as they can’t stand it when the gaping holes in their knowledge are exposed.

 


As we were going through my medications the doctor asked me if I was allergic to IV morphine. I nearly choked, I asked her why she had said that, apparently the nurse from A & E had written in my notes I was allergic to it. I angrily pointed out that as I had been taking morphine for two years ( shoved the packet under her nose) and buscopan all day (that packed was waved at her also) didn’t she find it more likely that the reaction I had suffered would have come from an IV medication that I had never had before? To me that seems logical but apparently not for this doctor. I asked her to write the name of the anti sickness medication down to ensure that I am never given it again, which she did.


The ward was noisy and sleep was elusive. I came to the conclusion that I would have had more sleep had I curled up on the floor of Paddington station. Patients  were in and out all night. Doctors were taking medical histories at 3 in the morning. It was a hive of activity but a place of sleep it was not.


Overnight I had drained 1800ml into the catheter bag, another impressive feat. I had less pain, no spasms and was in general feeling a lot better. When I am feeling better I want to go home and not linger. 


As no one had secured my medications in the bedside locker, I self medicated my morning tablets. I had already missed my evening ones and due to that my back was throwing its usual hissy fit when it comes into contact with a hospital mattress. Yes you heard right on this ward controlled drugs were not confiscated on admission. On this ward the nurses gave me the “self medicating” disclaimer form to sign and then put my medications into a locker. They checked through my drug chart to ensure that I had taken everything and thats when we discovered the student doctor had entered medications on my chart that I didn’t take. I explained to the nurse the error, it didn’t seem to come as a surprise to her, which was worrying. She asked me what doctor I had seen “was it the one with the red hair?” Obviously her reputation precedes her.


Breakfast was served just after 8am and as it was the first thing I had eaten in close to 24 hours I then promptly fell asleep due to a post prandial hypotension episode. I was woken up by the sound of voices, my case was being discussed whilst I slept. As a patient it was quite clear my actual presence wasn’t necessary. 


On seeing that I had come to the Surgeon in charge introduced himself. Then the idiot student doctor continued her patient presentation. I watched her and as she said “This patient has been diagnosed with Ehlers Danlos syndrome hypermobility type, the patient states she also has autonomic nervous system dysfunction” she paused and rolled her eyes. 


As she was stood to the side of me, I think she thought I couldn’t see what she had just done. I don’t state I have ANS dysfunction my medical records do and the medical tests I have endured prove it. If they don’t believe the diagnosis how on earth can they look after me? This was like a red rag to a bull and I hoisted myself up so that I was no longer lying flat on my back.


The surgeon then said ” right we are white carding you to urology, who you will see tomorrow and then we will go from there”. I then responded with “I am sorry, I am sure you’re a lovely person but I am not staying. I dont play the hospital game of lying around waiting for a department to fit me in. My plan is you take the catheter out, I prove I can urinate and then I go home.”


There was a collective gasp from the junior doctors who had accompanied the surgeon to my bedside. He responded with ” You can’t go home, you are in urinary retention”


Me: ” No you don’t seem to understand me, the catheter is coming out and I am going home”


S: ” You are being stupid, you’ve had two bouts of urinary retention in 48 hours”


To which after being called stupid I said 


” The catheter caused the last bout of urinary retention by causing my bladder to go into spasm. I want it out and I am going home” 


By this point I was incredibly angry at being called stupid, I don’t think a doctor has ever called me stupid before, well not to my face, possibly hidden away in my notes somewhere. Had he actually asked my opinion and explained his position instead of presenting it as a fait accompli I would have listened. But he was an idiot and continued


S :”You’re being stupid, I will let you go home but you have to keep the catheter in”


Me :” No I am going home, you are taking the catheter out and then you are referring me as an outpatient to urology. I don’t do hospitals and I don’t feel safe here” 


S: “You’re being stupid, you won’t be able to urinate once the catheter is removed”


Me: “If the catheter is removed and I can’t urinate, I will stay. If not I am going home.”


At this point the surgeon, who I believe had never had his authority questioned before gave up.


“Get the catheter out and she can go home” He then flounced off taking his minions with him.


I will state for the record here I am not a doctor and I am not suggesting I know better than the doctors caring for me. If you are in acute urinary retention you need medical help and you need it quickly. I take responsibility for my own actions. I strongly urge you to follow your own doctors advice.

 

 

However lets look at the facts 

 

– my bladder was no longer in spasm


– the catheter had drained 1800 mls overnight and was continuing to drain, therefore I was no longer in urinary retention.


– the second bout of urinary retention had been caused by the catheter either a) being blocked or b) the valve at the base of my bladder clamping down on the catheter.


– The student doctor had written my drugs chart incorrectly


-The medical staff had no basic understanding of EDS and the fact my bladder can stretch well beyond the size of most individuals making it floppy when emptied and likely to block the catheter again, leading to more painful spasms which I wanted to avoid.


– I had suffered an allergic reaction to IV Zofran and it had been ignored.


– They wouldn’t believe me when I told them the catheter had only been in since Friday.


– I had been left in excruciating pain for over an hour in A & E. When it was actually a quick fix.


– And the one that sealed the deal, they didn’t believe that my ANS is screwed


Ask yourself if you would feel safe in that environment? Would you want to stay?


I know I am not a medical professional but I knew that there was nothing to be gained from staying in hospital other than back pain.


Within minutes of the doctor leaving my bedside the nurses had removed my cannula and my catheter. As the nurse was removing my catheter she whispered ” I don’t think anyone has ever stood up to him before, well done. You manage your illness brilliantly and we know that you can go home safely. Just promise me if you can’t urinate, you won’t go home”


I solemnly promised her that I would let her know if I couldn’t wee and wouldnt leave the hospital if that was the case. I also promised that If I had any issues at all that I would return. I told her I wasn’t stupid but I wasn’t staying either.


A weaker more vulnerable patient may have been intimidated by the surgeon and his groupies. Unfortunately the older I get the less impressed I am. Having dealt with surgeons before I know that unless they can cut it out and play operation, they rapidly lose interest and then you are palmed off to another ward. Or left without a treatment plan for days on end. I wont play the hospital game anymore. I maybe coming across as  rude or arrogant but I know my body, my body doesn’t follow the rules laid out in medical textbooks and until I meet doctors who actually believe in my illness and have taken the time to educate themselves, I don’t trust them, its as simple as that. To me it would be like treating a diabetic having no knowledge about the disease / condition process. The outcome wouldn’t be good, well my condition is the same.


I did not feel that my condition warranted a hospital stay, most of which would have been massively unproductive as I have since found out my local hospital has no urology cover every other weekend. The earliest I would have been seen was sometime on Monday. At home I can manage my condition and I have a treatment plan as I consulted my gp first thing on Monday morning. Who agreed with my decision to leave – in case you are wondering.

 

I escaped from hospital with the aide of the nurses by 1020am. I didn’t wait for my discharge papers as one of the nurses had warned me they would mess me about producing them. They would either be emailed or sent to my gp. Having been in this situation before I knew it could be 2pm before I received them due to the doctors doing their rounds and writing up any orders for the nurses for all the patients they had seen. 

 

I got a hug and a kiss from the nurse who had been looking after me. I know I wasn’t there to win a popularity contest but I think it speaks volumes when a nurse treats you like this.

 

I have emailed a complaint to my local hospital and they now have 45 days to cover it up,  investigate it.

 

I am home and now living in fear of it happening again. Every time I struggle to urinate or get the burning pain at the top of my pubic bone I wonder if its starting again. Its not a fun way to live.

 

I have included two links below which I have found incredibly useful and they explain a bit about acute urinary retention and the catheterisation process. As acute urinary retention doesn’t happen that often in females (other than post operatively or due to infection) it was difficult to find information relative to me.

 

Thanks for reading.


How a catheter should be inserted, protecting the patients modesty during a deeply invasive procedure

 

The journal article I used on Saturday afternoon so I knew how to treat the initial bladder pain



Emergency admission / weekend from hell part one

I’ve just had the weekend from hell, in a less than great month. 2014 is officially shit. Two bouts of cellulitis (3 if you count the fact the one on my knee came back) and then a rather dramatic Emergency admission to hospital. The last 4 weeks have been far from plain sailing.

 

*WARNING*

 

I am going to warn you now this post will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


If you want to know what an absolute bitch of disorder EDS can be and you aren’t afraid of the mention of lady parts continue. 

 

*    *    *    *

 


There has been a joke in our house since 1998 that I can not go through a Football World Cup without an emergency hospital admission. Just as England were putting the final nail in their coffin on Thursday (19th June 2014) I thought I may have actually broken the curse. Then my body went “yeah right” snorted, rolled its eyes and sent me on a journey to pain a level of which I didn’t know existed or that you could live through.


As the football match drew to an end my insides had already been hurting for a few hours. I had a pain low down in my abdomen that felt a bit like period pains. It was burning, uncomfortable and just shouldn’t be happening as I take a contraceptive pill that stops all that nonsense. I did what I always do and tried to ignore it, figuring it would sort itself out.


 By 2:30am Friday morning I was considering calling 999 for an ambulance. I was now blacking out for brief moments with the pain and realising this wasn’t  my period. Had I been fully conscious at this time I would have called 999 but I couldn’t so I lay stranded on the couch in a daze.


I don’t know why it took me so long to work out what was causing the pain. It was the pain itself that was confusing me as it was diffuse and felt like the whole of the inside of my abdomen was on fire and there was a rhythmic quality to it. It wasn’t adhesion pain as that is sharp and colicky. It was the absence of passing urine that alerted me to the fact that my bladder had effectively gone on strike. Not wanting to panic my husband I grabbed a hot water bottle and tried to ride it out. I have suffered short periods of time where my bladder has walked out on me demanding better pay and conditions but it had always seen sense and resumed work without any fuss. My bladder tried in vain to work releasing pitiful amounts of urine but by 7am I had to admit defeat. I woke my husband and told him I needed him to stay home from work because I believed in the next few hours I would be travelling to hospital.


As usual not wanting to go to hospital I used delaying tactics and asked my husband to ring our doctors surgery for a home visit. At 1230pm my gp rang, I explained my symptoms and he asked me how I felt about having a catheter. My response was “I don’t care anymore just stop this pain”. I laugh at this statement now because  a little over 24 hours from that statement I would be enduring the kind of pain where if you told me the only way you could stop it was to kill me, I don’t think I would have given it a second thought.


By 2pm my gp was at my house. I don’t believe he was on the rota for home visits that day, he had cleared a space in his schedule and nipped out to see me. As soon as he walked into my bedroom (I was confined to my bed as I couldn’t walk. My bladder was so distended at this point the pressure made my vagina feel like it was being turned inside out) I burst into tears. Since leaving work I rarely cry (now that speaks volumes doesn’t it?) and I think since 2011 when I first met my gp I’ve cried on him on only one previous occasion. 


He was an angel, he informed me that urinary retention makes you extremely agitated and emotional and that along with the pain in my abdomen I was showing text book symptoms. He rang the district nurse and the conversation went ” I am with Rachel now and she needs a catheter, when can you be with her?”. He was so organised he had spoken to the district nurse already and had her primed and ready to go.


By 2:50pm my shiny new catheter was fitted however relief was not instant. Initially it didn’t drain a thing, the nurse was most perplexed as she had never had that happen before. So she asked me to stand up and take a drink. With that it started draining and although uncomfortable, in the couple of hours after it had been inserted it had drained 2 litres, by morning it had drained over 3.5.


Saturday morning I felt fabulous (compared with the previous day) my fashion forward accessory was working like a dream. I lost count of how much I emptied but it was several more litres. Around 2pm in the afternoon I started to get that familiar burning feeling again in my abdomen. I also noticed that the catheter was no longer draining. As the pain wasn’t bad, just uncomfortable I googled my symptoms. It did indeed appear that my catheter could be blocked or that I was having some bladder spasms. The treatment of these involved opiate pain killers and buscopan ( a muscle relaxant usually used in the UK for the treatment of irritable bowel syndrome) as I had both of these to hand I took some and tried to get some rest.


All afternoon I soldiered on, hubby was working, doing a reduced shift as I didn’t want to be left alone all day dealing with a catheter and not feeling great. He arrived home at 6pm and by then the pain was getting a little unbearable. By this point I had only passed 100ml of urine in six hours and had drunk more than 2 litres. 


I am a great believer in distracting yourself when in pain and trying not to acknowledge it. I don’t like giving into pain as once you do its very hard to get it under control. I had hung on so that hubby could work, now he was home it was like the dam had been breached and I couldn’t keep up the charade any longer. It was getting ridiculous so I rang 111 the number you ring in the UK for out of hours medical help.


That call was useless, despite acknowledging that I was indeed in a lot of pain, I was informed the minor injuries unit doctor didn’t feel confident enough to deal with catheters and the nurses were busy. Whilst speaking to the doctor I broke down and with that the pain increased ten fold. I was told that I would have to make my way to the large hospitals A & E department a 15-20 minutes car ride away. 


At this point I considered looking on YouTube to see if they had a video on removing a foley catheter – thats how much I didn’t want to go to hospital.


I didn’t want to call for an ambulance as I knew my call would be coded as green call, meaning non life threatening and if they were busy I could be waiting 4 hours or more. So some how I made it to our car and we set off. Every bump in the road felt like someone had inserted barbed wire into my nether regions. To the casual observer I probably looked like I was on my way to the maternity hospital with all the puffing and panting I was doing!


Accident and Emergencies  was packed out we couldn’t get parked outside so we had to make use of the drop off zone. Reception has glass in front of the staff and a very high counter. Meaning when sat in my wheelchair I can only see the top of the head of the person sat behind the glass. I asked the receptionist if she could move to the wheelchair access desk as I couldn’t see her and was told ” No the computer isn’t switched on and I can hear you so its ok!” Well it wasn’t ok for me to be shouting at the top of someones head and I will be writing to the CEO of the hospital. 


Whats the point of having a wheelchair access desk if you refuse to use it? Its just a window dressing and apparently as a disabled person I am not supposed to be able to speak for myself or access that department. Wherever possible I speak for myself and to be denied a face to face conversation at your first point of access in hospital is degrading.


I had to wait for about 20 minutes to be triaged. Normally I would say that was ok. A cut hand with pressure applied (as long as its not an arterial bleed) can wait, when your bladder is in spasm and you can’t speak through the pain 20 minutes is an eternity. Especially when you know that you are waiting to be triaged and you will have a longer wait once through into the magical area known as minors or majors.


Once through into minors the luxury of a bed wasn’t forthcoming. I was forced to remain seated in my wheelchair, when I needed to be lying down or curling into a ball. The spasms were gaining in their ferocity and I was forced to sit and watch as 7 nurses and healthcare assistants stand around chatting for 20 minutes under the guise of a “handover” oblivious to my suffering and the woman next to me who in her 70’s had dislocated her shoulder and was screaming in agony. 


Having witnessed her cries go unnoticed I knew shouting and screaming was going to get me no where. I dont tend to shout and scream when I am in pain. So I surprised myself when I began to sob uncontrollably. My body was shaking with the pain and I was beginning to be unable to keep myself in my wheelchair. Even now I don’t know how I remained conscious, I didn’t think it was humanely possible to endure that amount of pain. Even now I am finding it hard to find the words to describe the ferocity and the sheer agony of it.


With the prospect of my pain getting under control seeming hours away, I am not proud but in a moment of sheer desperation I told my husband to tell the nurse that I had bypassed my catheter and was now sitting in a pool of urine. Nothing gets a nurse or healthcare assistant moving like the prospect of having to deal with body fluids. There was a small element of truth to what I said, I was bypassing my catheter but it was more of a dribble than a gush and although my trousers were not wet, my underwear was soaked. Within 2 minutes I was on the unoccupied gurney that stood less than 5 foot away from me. However as I was trying to climb up on it the worst spasm to hit me came and I was shrieking in pain.


To an outsider it must have seemed that the dislocated shoulder lady and I were in competition with each other, as no sooner did I start wailing like a banshee she started as well.


The nurse was talking to me but what she said I had no idea. All I can remember saying to her was “I’ve had a partial bowel obstruction and I can tell you it was a fucking cake walk compared to this”. Which was followed by more shrieks of pain. I was on the gurney for less than 5 minutes when a doctor came in.


For some reason everyone (medical staff wise) kept assuming that I was a long term catheter user. They didn’t seem to understand that it had only been placed the day before. When they did get that I wasn’t a long term user they kept saying it had been in a week. When you are sobbing, screaming and swearing having to keep correcting medical staff because they just won’t listen to you it is not an ideal situation. Its bad enough having to explain my medical condition when I am not in the throes of a bladder spasm but when you are your most vulnerable and your life is in their hands its not reassuring.


I was f’ing and blinding the whole time I spoke to the doctor. I must have seemed like a woman possessed.The doctor explained that they would take the catheter out and put a new one in, which was greeted with my shrieks of “no just take this fucking thing out and let me have a wee (may have said piss can’t remember exactly)”. She explained to me that they had to get the urine out that had accumulated inside me and the only way to do that was to put a new one in. I wasn’t a happy camper, it didn’t seem logical that you would replace the thing that was causing so much pain. I acquiesced hoping that this would stop the pain. As the spasm wore off I apologised to the doctor she told me there was no need to apologise, this was an extremely painful condition and if she looked up bladder spasms and urinary retention in a medical dictionary my picture would be there. For once in my life I was presenting in a text book way, if I hadn’t been in agony I would have cracked a smile.


Whilst we waited for the treatment room to become free a wave of nausea hit me. I had nothing to be sick in, my husband was standing beside the bed. All I could say was “watch your shoes” as I projectile vomited onto the floor. Hubby and I haven’t stopped laughing about this since it happened. It was bloody awful at the time. As I hadn’t eaten for hours the projectile vomit was pure bile and then I dry heaved for the next few minutes. The dislocated shoulder lady seemed to sense the competition on the noise front and started to scream again. My husband was losing his rag, his wife was in agony, throwing up over the side of the bed and next to us was a lady begging him to get a nurse. It was an awful situation for him to be in. He told her she would have to wait for me to stop being sick before he could help her and get a nurse.


A really lovely nurse, the one that rushed to get me on the gurney and tried to comfort me when I was acting like one of the ladies giving birth on “One born every minute”, popped her head around the curtain. She stroked my shoulder whilst I apologised for the mess on the floor. She assured me that she had seen worse, she knew I was in agony and they would be sorting me out as soon as the room was clear. As I was in between spasms I was able to ask her to help the lady next door out. She was clearly in so much pain, when you watch “24 hours in A & E”, shoulder dislocations are identified as extremely painful, people are given morphine and gas and air. They aren’t left in a chair and ignored for over an hour. 


Despite the pain I was in, her cries hurt my soul. Hearing such distress coming from an elderly lady broke my heart when her pain could have been brought under control and she could have waited in relative comfort for her shoulder to be realigned. Whats the point in putting posters up on the walls of A & E departments telling patients to let their nurse know they are in pain, when they are ignored. Its a waste of paper and a waste of the blu tack sticking it to the wall. It wins the emptiest gesture possible award.


Welcome to David Camerons vision of the NHS, where old ladies scream in pain because there are too few doctors in an accident and emergency department to prescribe morphine.


I was wheeled through into the treatment room and within 10 minutes the old catheter was out and a new one placed. Only much to everyone’s consternation there was no urine draining into the bag. I wasn’t surprised for a while I have suspected that I suffer from Fowlers Syndrome. My sister suffers with this condition and has just had a sacral nerve stimulator fitted. 


With Fowlers Syndrome the neck / valve of the bladder is too tight and will not relax (as it would do normally) to allow urine to flow from the bladder. Sometimes when you catheterise a patient with Fowler’s syndrome you can place the catheter but then the valve slams shut around the tube so it stops urine flowing and that is exactly what happened to me ( and it had happened to my sister in the past). Unfortunately along with Ehlers Danlos syndrome and Autonomic Nervous system dysfunction the doctor and nurse treating me were completely clueless. As the catheter wasn’t working I was now being admitted under the surgical team. 


Although the doctor never said it, I knew that if the catheter failed to work I was facing an operation to have a suprapubic catheter fitted. I hate it when doctors think you are an idiot. All she would say to me was “well the surgeons deal with catheters” I wanted to say “no they don’t urologists do” but over the years I have found to my cost that doctors don’t like it when you know more than they do. I had already presented them with three medical conditions they had never heard of.


I stood, I drank but the urine never dropped into the bag. I had released all of 100mls and of course that was taken for the obligatory pregnancy test and dipped to check for infection. You know my feelings about pregnancy tests!


With the catheter not working and my admission onto a ward reasonably imminent I was swabbed for c-diff and MRSA again. However this time it was only my nose and throat. I dont understand why I was intimately swabbed on my planned admission and not on this occasion but hey ho. Then the fun and games began with finding a vein to get a cannula in.


I will never understand why doctors or nurses (but not phlebotomists in my experience) don’t believe patients when you tell them your veins are shite. If I am ill my veins will shrink away and be difficult to find. Add in Ehlers Danlos Syndrome and you end up with veins that have the consistency of an elastic band. As the needle approaches them they shift away. Medical professionals that have never come across this then proceed to dig around until they blow the vein or cause such pain that you pull away. Despite me telling the doctor my veins would be hard she gave it a go. I stipulated that she could stick me with the needle as many times as she wanted but she wasn’t to dig around. I also said that there was no shame in calling the vascular access team. In my experience you have to be patient with my veins. You can’t stab at them wildly and expect them to play ball.


Taking this on board she put the tourniquet around my forearm (I am still bruised) made me hang my hand over the side of the bed and she placed a latex glove filled with hot water on the back of my hand. She did listen and I am grateful for that. It took well over 5 minutes to get the needle in, whilst she was doing it she kept saying “does this constitute digging?” as she gently probed the vein. She was very patient and calm whilst she was in fact digging and it didn’t hurt. She got the needle in and then as usual my vein wouldn’t give up any blood. Eventually after re-applying the hot water filled latex blood we had some joy. When she finished she exclaimed “oh my word, I have never seen veins behave like that”. Thats the fun of EDS I told her.


To be continued……..