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.

 

Happy New Year!

Happy 2015 everyone!

Normal service will be resuming next week Thursday 8th January 2015. I hope you have all had a lovely Christmas and managed to spend some time with the ones you love.

I can’t wait to get back blogging properly but I think for the time being I am going to keep it to just one post a week on Thursdays. I have found life a bit less stressful with only having the target of one blog post a week!

It really made my 2014 to have my blog recognised with it being nominated for a Wego Health Activist blogging award. Just being one of the nominees is massive. I also set myself the target of hitting 30,000 views when I started blogging again in February. In early December I smashed that target. It has been a great year blog wise and that is all down to everyone who reads my blog and shares the page.

I couldn’t have done it without you all so thank you and Happy New Year!

Rach xx