A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.


I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.

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.



“Trust takes years to build, seconds to destroy, forever to repair”

Author unknown

I love this saying because it sums up the issue of trust so eloquently and so much better than I ever could.

Trust is  an intrinsic part of any relationship. In romantic relationships we trust the one we love will be faithful and love us completely despite our flaws. In friendships we trust our friends will keep our confidences. Employers trust their employees to follow the rules. 

The chronically sick have to build up a trusting relationship with those medical professionals that provide their treatment. Without trust in this relationship you end up with a noncompliant patient. 

So many of us within the world of chronic sickness or disease have had our trust in the medical professionals that treat us sorely tested or even shattered. Doctors need to think carefully how they treat their patients as this affects the way that the relationship builds trust. Fail to gain or simply lose the patients trust and the words the medical professional utters will never be believed again.

Due to the way I have been treated in the past by the many doctors I have seen, from gp’s to consultants, my trust in medical professionals has been completely destroyed. I have been told one thing to my face and completely different things have been written in my notes. I have been diagnosed with somatoform disorder but not been told about this diagnosis or been given treatment for it. The diagnosis was not made by a psychiatrist but a neurologist overstepping his boundaries. I have also been placed on medication that there was no clinical rationale to back it up other than to keep me quiet.

How is that building a trusting relationship with your patient? I warily trust the two doctors I deal with now but I know at a moments notice that one false move by either of them and I will be back to square one, trusting no one who treats me.

When you lose the trust you have placed on your doctor, it breaks your heart a little bit. You initially held such high hopes when first meeting them in a state of wide eyed innocence. I have yet to meet anyone who has taken the familiar road of chronic illness, who hasn’t endured the same kind of treatment I have and unfortunately it’s usually at the hands of neurologists. On this journey the next time you meet a new doctor you are just a little bit wary, by the third / fourth doctor you are positively jaded.

When trust is lost you become angry with those who are supposed to be helping you. When you meet the 4th/5th/6th doctor (delete as appropriate) you are positively withdrawn during your meetings. Keeping your answers to simple yes or no’s, you’ve already learnt that an intelligent / informed patient is a threat. Acting either just below or of average intelligence will get you by, it feeds into their superiority complex. ( Apologies to all the good doctors out there as I know there are some.)

My trust in my doctors is being tested at the moment and has been ever since I left hospital in April. There has been what can only be described as a mammoth debacle in my care since then. I like my doctors and I think that they like me, as much as any doctor can like a patient.

In April as those of you who follow my blog know I have been trialling Octreotide which is administered by subcutaneous injections. I am supposed to inject myself daily, 40 minutes before my lunch. However due to repeated bouts of cellulitis and an ongoing issue with my supply of needles and syringes I haven’t injected octreotide since the start of June.

What should have been the issue, obtaining the octreotide (because I am using it off label to treat postprandial hypotension) has been an absolute breeze. I have glass vials of the stuff in my fridge waiting to be used. The issue is the method of delivery.

On leaving hospital I was given ample supplies of needles to draw up the drug and needles to inject the drug along with copious amounts of syringes. All went well initially until I started to run out of needles. Then the games commenced.

My drs surgery informed me that they were not able to supply me with the same type of syringes or needles issued by the hospital. Those size needles / syringes were simply not available on the NHS for prescriptions in the community. I explained that I only had a few needles and syringes left and then I wouldn’t be able to use the drug and was issued with an emergency supply whilst the prescribing team tried to sort the situation out. This was at the start of May 2014.

A few days later after the emergency supply dried up again I was left with the situation again of having no needles or syringes. I got my consultants secretary, the hospital pharmacy, the prescribing team involved and all that happened was that everyone just blamed everyone else for the situation.

Blame is fine once a situation has been sorted, perhaps you can apportion blame when you look at the root cause of the issue. However everyone blaming everyone else has got me no further. I have 200 drawing up needles, 200 injecting needles and ten syringes and its now July 2014. 

I need to start taking the octreotide again the postprandial hypotension is wiping hours out of my day. After my evening meal, an hour later I am in such a deep sleep I can not be roused for several hours. It means that I am very rarely actually spending an evening with my husband.

Octreotide comes with side effects that after a few weeks rapidly decline. However if I only have ten syringes what’s the point of putting up with them if after ten days I will have to stop taking the drug again. It seems to be an exercise in futility.

I am in a very difficult situation. I am within my rights to make a formal complaint about both my gp and my hospital consultant for the way this has been totally mismanaged from the start. Thank goodness I am not diabetic because with the follow up care I have recieved I would be dead by now.

Complaining is difficult due to the fact that my gp is the first doctor who has believed me when I inform him of my problems. It is the same one that came and saw me when my bladder decided to go on strike and instead of getting me carted off to hospital ( a place I hate ) got the district nurse to insert a catheter. He knows what EDS is and he knows what PoTs is. My hospital consultant is the one that gave me the tilt table test which proved I wasn’t the basket case I was being made out to be by the neurology department of the same hospital. I have a good relationship with him ( or I thought I did as I am yet to hear from him since April, no follow up appointment to find out how I am doing).

Making a complaint about either of them could land me in the position where I have no one to treat me or who believes in my conditions. You heard how well I got on in A & E recently. What the hell do I do?

I have an appointment with my gp on 30th July where I will be bringing up the stupid situation I am in where I have the drug but no way of administering it. I will also be bringing up my long standing issue with my back and I will be refusing to leave until both situations are resolved or have more than a casual “I will sort it out”.

My trust in doctors is being tested yet again. It won’t take much to shatter it. I wish medical professionals realised that destroying a patients trust means it colours every future doctor patient realtionship.

My hospital stay – part two

I am well aware in my last post that I didn’t even touch upon the whole point of my admission which was the octreotide trial. If you’ve read the last post you will understand why!


My admission for the octreotide trial was planned, although the first admission date had been cancelled it went ahead the following week. My understanding of a “planned” admission is that all medications, tests, and the like have been ordered and are ready and waiting and that staff have been briefed about why you are being admitted and given a clear view of your medical condition so that you receive optimal care.


Maybe my expectations are too high, I come from a retail background where daily we did things like handovers, planning and contingency plans. Everyone (99% of the time) was briefed, knew what role they had to play in the endeavour and someone was responsible and accountable for the plan being executed. If any part of the plan did not deliver, we would look at the root causes of what went wrong and ensure the same mistake didn’t happen again. Sometimes events happen that you could not have foreseen but this is how a business operates and to a large extent ( I am not saying the NHS should be carved up by private companies I am 110% against that) the NHS should be operating ( where it allows ) along these models. By not doing this it means its opening itself up as a target for those who want to do away with this magnificent organisation which is a tragedy. There does need to be serious reform, layers of management stripped away, investment in frontline staff and not the closing down of local emergency medicine units  but what it needs the most is communication between staff / departments and between medical professionals and patients.


Why is it people set so little store by communication? It amazes me, as communication is key within any organisation, the NHS even more so when failing to communicate can lead to serious mistakes costing lives.


The first major obstacle when arriving on the ward was the staff, although having had access to my medical notes, clearly had very little understanding what severe autonomic dysfunction was or how it affects me. They talked about my condition in front of me but at no time actually asked me. All they perceived the problem to be was low blood pressure and an increased risk of falls, if only! This lead to the ridiculous situation where they insisted I was escorted to the toilet (which never happened, due to me making my own way there and back) and insisting that I was accompanied and watched whilst showering but that was the extent of my care. 


Yet at the same time when they made my bed the following morning they were quite happy to leave me standing whilst I waited for them to finish as they had placed all the clean linen on the chair. Leaving me the only option of sitting on my wheelchair, whose brakes had been left off when they had moved it, so I rolled back into the bedside cabinet. Face Palms!


It was agreed that the octreotide trial would start the first evening of my stay. However the pharmacy seemed reluctant to give the medication to the ward. Despite being notified of my admission and being chased up from 3pm onwards the octreotide did not arrive until 18:45. My dinner had been served at 17:00 so I had to sit and watch it slowly congeal as the drug needed to be administered before I ate. I also had the domestic staff popping their heads in every ten minutes asking why I hadn’t eaten, “did I not like it?”and “did I want something else?” I can’t fault them for this approach, on a dementia ward it can be a battle to get some patients to eat. I was bloody starving having not eaten through nerves, so inside I was crying knowing that I would have to wait until the octreotide arrived.



Congealing baked potato with baked beans and a yogurt warming to room temperature!


Eventually I got my injection and a cheese sandwich was located for me. I have found a cheese sandwich is the safest option for a vegetarian when in hospital. (It probably doesn’t contain vegetarian cheese but I am not that strict when it comes to cheese etc). People still seem to struggle with the concept of vegetarianism. Once when admitted on another “planned” admission I was given a baked potato with Tuna and mayonnaise as the vegetarian meal. The nurse was quite miffed when I pointed out this wasn’t a vegetarian meal. She hastily scrapped the tuna off my baked potato and handed it back to me. I managed to piss her off again when I said that I wanted something else, opting for a cheese sandwich that was prepacked and had no meat surreptitiously scraped off it. Eating off the hospital menu is much safer as it accommodates for all, however arrive in the afternoon when the person who vacated your bed prior to your arrival, has ordered from that days menu and that’s what turns up as your evening meal, vegetarian or not!


I still had a small postprandial episode, I was expecting as much due to not having eaten all day. Plus a sandwich is pure carbohydrate and that makes it much worse although with me any food group will do it. I did notice that although I ended up falling asleep for 20 minutes I didn’t wake up as confused (for some reason though I woke up and thought I was back in my bedroom at my parents house, where I haven’t lived since 1996!) and the tachycardia that preceded my doze wasn’t as forceful. This was exciting stuff as it meant the drug was working. I did have a small amount of gall bladder pain and a bit of bloating but it was minimal.


My octreotide was being used in an off label way to treat postprandial hypotension by stopping the blood pooling in my abdomen. The staff were familiar with the drug having issued it to patients before just never in this context which became abundantly clear the following morning.


At 6am I was awoken by the nurse that I had argued with about pain relief and bedsores. She was brandishing a hypodermic needle and telling me it was time for my octreotide injection. Having been in hospital more times than I care to remember, I knew that breakfast would not be served until at the earliest 8am. The injection was supposed to be administered 20-30 minutes before food. So we had a problem. I asked quite casually if breakfast was coming shortly and was informed no. I pointed out the injection had to be done shortly prior to food, I was informed breakfast would be in the next few hours and was that ok? The obvious answer was no. I have to give credit here to the nurse, although we clearly didn’t get along, she suggested she got me some toast and a cup of coffee and then she would do my injection. Disaster averted.


In my notes the time given for my injection was 6am, which had been written up by either a doctor who hadn’t seen me, doctor nice but useless or someone who had forgotten the purpose of my stay. Another error of communication, or staff ignoring the instructions of others. This was starting to grate on me that my case wasn’t being handled properly. It was only the fact that I was alert enough and strong enough to advocate my own care that this injection was not administered without food. Which I now know through accidentally forgetting to eat after giving myself an injection would have sent me into a full on hypoglycemic attack.


Injection administered I happily ate my toast and slurped my coffee. I noticed that after my injections I was getting a strange headache in the base of my skull and a strange feeling in my tongue accompanied by a metallic taste. I hadn’t had the horrific reaction I had feared which is usually projectile vomiting and profuse diarrhoea. Hence why I had packed numerous pairs of underwear and pajama bottoms!


My consultant popped his head around the door at around 9am, I had a frank discussion with him about the fact that staff were trying to give me the octreotide injections without food and that my pain wasn’t being managed. He told me that he thought that I would be better off at home where I could look after myself, administer my own pain medications etc and that he would keep me on the same dose that I was recieving now. As we were coming up to the Easter bank holiday he also gave me his own private mobile (cell) phone number to contact him If I had any problems. A&E or an emergency doctor, which would be the only healthcare accessible over the bank holiday weekend would be unable to deal with my case. Far better should things go pear shaped over the weekend that I should be able to contact him directly. I was touched by this gesture, some people may say its just good doctoring and whilst yes it is, this level of care or compassion had never been shown to me before in a hospital setting. With most hospital doctors I have found its a case of out of sight out of mind. Dr B would surprise me again in a few days time.


I would only be allowed to go home on that day, if I had been shown how to inject the octreotide. I was told that a nurse would come and show me how to do the injections and would make sure I was happy with it before I would be discharged. That was the theory, in practice the only words to describe it adequately are piss poor.


At 12:30pm my nurse came in with all the kit ready to show me how to subcutaneously inject my octreotide. I asked if lunch was on its way as the exercise would have to be abandoned if it wasn’t. I wonder how many of you have guessed what happened next…



An arty shot of the injection kit left in my room because you guessed it lunch wasn’t coming!


An hour elapsed before lunch arrived and no sooner had my plate been set down my nurse arrived to “teach” me how to inject. I have put the word in teach in inverted commas as it was a joke. No diabetic patient who injects multiple times daily would have left hospital with such a brief teaching session on injecting themselves. I was handed a syringe asked to load a certain amount into it and check for air bubbles. All of which I did ok. I was then told to pick a spot on my stomach, pinch the skin and inject myself with the diamond shaped side of the needle pointing upwards and push the plunger down. Again I did all of this ok however I wasn’t told to release the pinched skin and count to three and then remove the needle. I removed it with the skin still pinched so a large amount of what I had injected oozed back out again. That was it, that was my teaching session on injecting myself. No oranges to practice on, no question and answer session, the nurse just packed everything up and left the room.


Injecting myself was no big deal but once I left hospital I actually learnt more from asking questions on facebook than I was ever taught in hospital which shouldn’t have happened. I found out that the gastrointestinal symptoms are much less if you leave having food until 40 minutes after the injection. I also learnt that octreotide injections can be drawn up and stored at room temperature for two weeks which means the injections sting less. 


In hospital one dose was taken from each octreotide vial and then it was thrown away. This meant 75% of an expensive medication was simply tossed into a sharps bin, thats criminal! I get three doses out of one vial, I lose 25% of the meds due to it being drawn up through one needle and then I change needles to carry out the injection but I am not throwing away 75%. This stuff doesn’t have to be kept in a fridge if being used in the next two weeks. So only one vial of the medication needed to be used during my stay instead of three. I know that this drug in Australia costs thousands of dollars a month to be on. Its expensive stuff, to not load other syringes up with it when you open the vial seems lazy and not cost effective. When I discussed this with my gp over the phone I could literally hear him rolling his eyes! When the NHS and the country is in a period of austerity why was this drug being thrown away? I could have been sent home with the preloaded syringes. They wouldn’t have gone to waste.


I managed to get home that night after a lengthy wait for the pharmacy to get the octreotide dispensed. The nurse in charge of my medications on discharge was the most miserable person I have ever had to deal with and I’ve met lots of miserable people over the years! She didn’t crack a smile once and answered any questions with as few words as possible. When I asked for a sharps bin to dispose of my used needles at home you would have thought I had asked for a bar of gold bullion. I had to remind her constantly to get my opiates out of the wards controlled drugs cupboard and also my steroids from the fridge.


I couldn’t wait to escape, just as we were about to leave a healthcare assistant that I have got to know over the last few years as she helps at Dr B’s clinic popped her head in to say hello. I was greeted with the usual hug and kiss from her which I could see from nurse ratchets expression did not go down well! After a brief chat with S, the lovely HCA we made a break for it, narrowly avoiding being crushed by the doors on the way out.


At home injecting was fine if a little nerve wracking. The first day I did it without my husband in the house my hands shook! Having heard how nervous I was he suggested that I draw 3 doses worth of octreotide up at one time and store them ready for injecting. That way I wasn’t putting pressure on myself to load up the syringes and then inject. A very sensible idea which has helped me loads!


In hospital I had been having two doses of octreotide a day so I continued with this. By the Sunday I had become very cocky and upped this dose to three, big mistake! I was up all night being hideously ill.


On the Monday ( Easter Monday) at 930am aprox my Consultant rang completely out of the blue, to check how I was. I told him things had gone ok until I upped it to three times a day. He told me not to inject that day and start again on the Tuesday at one injection a day.


I am still all these months later stuck at one injection a day as I can not tolerate anymore than that, which is a shame as it works so well. Presently due to the bouts of cellulitis, I have stopped my injections as the antibiotics I am on really mess up my innards. I am also loath to give myself an open wound every day when the cause for my two bouts of cellulitis in a month is unknown. Once I have stopped the antibiotics and been free from infection for a few days I will start them up again. Without them the postprandial hypotension has been a nightmare. 


My kit including the worlds smallest sharps bin (sarcasm alert!). And yes thats a dog biscuit tin that I am storing my needles and syringes in!



My hospital stay – part one

I have to bite the bullet and write this post. I have successfully put off writing it since my hospital stay in April 2014 but its time. 

I’ve been reluctant to write it as there is so much NHS bashing in the media and I don’t want to bash an institution that has brought me into the world and saved my life but like any large institution there are things that could be improved and my hospital stay was far from plain sailing. 

So if any of my readers are part of the NHS this isn’t an attack on you but please take a look at the points I am raising and look at the departments you work in. Are there things you could be doing better? Are there things that are happening that are wasting precious resources? Try and look at it as if you were a patient because if you forget that the patients are at the heart of the NHS that’s where things will go wrong.

My Consultant, a very hard working, caring, diligent man, a little caustic and with a dry sense of humour that can be hard to “get” unless you’re me and find him hysterical, is in essence a specialist in Geriatric Medicine / General Medicine. Which means whenever I speak to someone who has not come in contact with me before it leads to some confusion when I give my date of birth. I am one of his youngest patients. I came to him through being referred to the completely wrong clinic, initially he suspected that I had somatoform disorder – after all that’s what my notes said from all the other doctors that had ever seen me since 2007. He either took a chance on me when he agreed to a tilt table test or just did it to shut me up. Either way I am grateful that he listened to me when I produced my list of blood pressure and pulse readings at our first meeting.

Lets call him Dr B, I have given out so many pseudonyms in the past, I apologise if I’ve used this one before. Dr B is in charge of the ward I stayed on and its a locked ward due to the majority of his patients having dementia. Its not locked in the sense you can only escape by stealing the keys but unlike other wards in the hospital the doors close automatically and you have to hit a discreet button to get the doors to open. I have no problem with this, after all if your loved one is suffering from any form of dementia the last thing you want is to find they have absconded from the ward and are wandering the corridors. 

I’ve never been on a locked ward before so that was a little weird, plus it was a nightmare to navigate the doors for my husband who was pushing my wheelchair. There was a very small window of opportunity once the button was pushed to get me safely through without being crushed by the door.

On arrival we were informed that my bed wasn’t currently available and that we should go to the restaurant and wait for 30 Min’s. Again I don’t have an issue with this. A patients discharge can be held up for a variety of reasons and on the majority occasions its not the wards fault. When we came back we found the bed still wasn’t ready and we then had to wait in the staff room for over an hour.

 90 minutes or more later, my bed was ready and I was shown to my room. I had a small private room with a wash hand basin but no toilet facilities. This wasn’t ideal as it meant I would have to struggle to the toilet myself or call for a member of staff to help. The amount I drink due to excessive thirst meant if I called them continually for help I knew I would rapidly become their least favourite person.

As I have written in a previous post “Permission denied” I was swabbed for MRSA / C Diff – intimately. I had to provide a urine sample as because I am a woman I have no control over my reproductive system so I maybe pregnant. I know that people can be pregnant and not know about it but with zero maternal instinct contraception has always been high on my list of priorities. I understand they are covering their arses but it irritates me. I feel its like, you have a womb so therefore you have a reduced mental capacity. Do men have to provide a urine sample every time they rock up to A&E or when admitted to hospital?

 A short while later Dr B popped his head around the door and within the space of 5 minutes had dropped the bombshell that I would be in hospital for a week. My husband and I had planned for two days – the two days that we had been told in the previous November. I was furious as I had emailed Dr B and Dr B’s secretary in the weeks leading up to this admission asking about the length of stay and asking other questions. I never received a reply. I managed to bargain the stay down to three days. My husband had taken a weeks holiday the week before as that was when I was supposed to have been admitted. Because that was cancelled he had to take emergency holiday from work to be able to take me to hospital now. I explained that my husbands work were accommodating but this was unacceptable, that life existed outside the hospital, a life where there is a mortgage to pay, an economic downturn and employers making staff redundant. 

I understand that Dr B is a busy man, his clinic is expanding all the time. However this could have all been avoided if someone had just taken the time to communicate what would be happening during my hospital stay and the length that it would be. What if I had children and needed to sort out childcare etc, I had to sort out people to sit with my dogs as they can’t be left. So it threw all of our plans out and meant my husband had to contact his employer and tell them he may not be in work for one of the busiest weeks of the year (after Christmas).

I then had a nice friendly doctor come in and take a medical history ( again another colossal waste of time when you are resting on my vast pile of notes whilst taking it). This took over an hour and a half and I should imagine this doctor thought her visit to me was going to be a quick in and out. I had to spend the majority of the time explaining my conditions – now I could understand this if my admission had been an emergency but this was a planned admission, perhaps a perusal of my notes and a quick session on Google would have been quicker? It was also clear that she had no clue about EDS or Severe Autonomic Dysfunction, nice interpersonal skills but that won’t save my life in an emergency. I hate saying that on first impressions she was a really was a lovely person but like everyone else on the ward she was clueless about my condition.


Also after I left hospital I found that she had been a little creative on my discharge notes. As part of the history taking process she was supposed to examine me. This never happened however my discharge notes did not admit this omission. It was covered up with “on examination her abdomen was found to be soft and her lungs clear”. My lungs or abdomen had never been checked as she had never come back to check them. This is bad doctoring and is inexcusable if it is compounded by essentially lying on my hospital notes. So the “nice” doctor had lied another reason why I find it so hard to trust the medical profession.

As usual I asked if I could self medicate – I hate having to wait for my tablets when I am in pain. This isn’t a pop at the nurses, in the ward there clearly weren’t enough nurses or health care assistants and they were rushed off their feet. If I self medicate it means you don’t have to answer my bell and it saves you a job and it means I get my medications on time. I manage them perfectly well at home, I am not an idiot patient.

As usual because I take opiates – morphine slow release and oramorph, these have to be stored separately in the wards controlled drugs cupboard. Again I understand its for safety and its the rules but its highly irritating when you are allowed to administer these at home unsupervised. It also meant throughout my stay that my pain wasn’t well controlled as my slow release morphine tablets were given to me 2 hours late on the first day and then an hour late the next and I had to continually battle with the nurses administering my oramorph to give me the correct dose.

I am allowed to take 5ml / 10mg of liquid morphine every four hours at home should I need to. I never have because at home I stay on top of my pain. I can go days without taking oramorph as long as I stay on top of my pain. Its my last resort medication, when every other pain relief option has been exhausted. When I take it I take the prescribed 5ml / 10mg dose. It was written in my notes that this was the dose I should receive yet for some reason every nurse that I administered the oramorph when I asked for it decided to half the dose. When I asked why they wouldn’t give me the full dose I was told “you can wait an hour and see if you need the other half”. Like every patient, I know my body, I know that a half dose won’t cut the mustard, especially if my other pain medications haven’t been given to me on time.

In a lot of pain at 8pm the first evening I ended up losing my temper with the nurse on duty. It wasn’t her fault she had only just started her shift, she sat with me and explained that nurses always try and administer the lowest dose of oramorph first. I understand that’s their approach but nowhere in my notes did it say reduce my medication by half, they didn’t give me half my contraceptive pill, or one paracetamol instead of two, or one slow release morphine tablet instead of two so why ration the oramorph – it was being administered from the bottle I brought in so it wasn’t costing them anything! 

Being in pain when there is no reason to be is a horrible situation to be in. I spent my entire hospital stay chasing the pain trying to get on top of it. For the 24 hours in their care the pain was horrendous and it took me 48 hours once I was home to get back on top of it. It was a situation that didn’t need to happen and clearly none of those administering my medications appreciated the level of pain I was in.


My pain is triggered by hospital beds, I either get a memory foam “style” mattress which means my joints have pressure applied on them that they don’t usually have or a mattress that is too soft. I know many people with EDS find memory foam mattresses a real help, I like to be different. I have a memory foam topper but underneath my mattress is hard because my body finds it so hard to support itself when I am asleep.

I clearly wasn’t her favourite patient ( she was also the nurse that I told I wouldn’t be having a bedsore check) which was made abundantly clear when she told me the lady that had been in the bed before me had the same illness as me but was much worse and had been sick 10 years. I felt like telling her “Its not a bloody competition” I kept my mouth shut as I was still waiting for my slow release morphine!


I think the situation was difficult for both nurses and I because they were used to compliant elderly patients who didn’t speak up for themselves. This was more than evident when I had to complain about the mess the shared toilet was in when I went to use it. The patient two rooms up from me was having explosive diarrhoea and wasn’t always making it to the toilet bowl. Despite me informing the nurses of the toilet situation and the fact I was desperate for a wee, 20 minutes later the toilet was still a no go area. I couldn’t wait any longer and I knew I would be waiting longer still if I asked for a commode. I tiptoed through the path of destruction found some toilet cleaning wipes and cleared up the other persons mess so that I could use the toilet. I shouldn’t have had to do this and it made me angry. The staff were well aware of my limited mobility and the fact I couldn’t go clean toilet hunting.


I chatted to the matron of the ward the following day after leaving less than positive feedback on the card the ward administrator had given me. I was told that the nurse looking after me had point blank refused to clean the toilet feeling it wasn’t in her job role. By the time the matron inspected the toilet she couldn’t see an issue, I set her straight and told her there was no issue because I had cleaned it up. Something as a patient I shouldn’t have had to do.


Having been a manager of people, which essentially this matron was I found it startling that her request for my nurse to clean up the mess was ignored. Perhaps this is where the problem lay in the ward that those working for the matron ignored her and essentially there was no management actually taking place in the working environment. I want to say again the matron struck me as a lovely hardworking person but her time was being used doing the jobs those working for her were refusing carry out. In a previous life when I worked staff (including managers) could be disciplined for failing to carry out a reasonable request, I would suggest that clearing up bodily fluids is reasonable set in the context of nursing and if you don’t like it perhaps nursing isn’t for you?


I realise I haven’t touched upon the point of my admission, the octreotide trial and that’s because that was beset with disasters also. I am saving that for part two.

Why is sorry the hardest word for me?

This has been another hard post to write and its been lurking in the draft section of my blog for a few weeks now. I haven’t wanted to offend people that have genuinely reached out to me and stayed in contact. This post isnt about people who stay in contact with me, it’s a post, well you will work it out from what I’ve written what sort of people its about! (Especially if you have been chronically sick for a while).

Since I’ve become sick a lot of people (and I mean a lot of people) have contacted me to say “Sorry”, they’re “sorry to hear my health is so bad”, “sorry they didn’t know I was so ill”. Its very nice of them to contact me and say that they are sorry however I find it very difficult to respond. I mean what are you supposed to say? Being chronically sick doesn’t come with any sort of handbook, faced with a “I’m sorry” leaves me desperately short of appropriate responses.

I really dont want to sound ungrateful, its very kind of people that I’m not in everyday contact with, to go out of their way to contact me and tell me how sorry they are that I am ill. So far so good, however I have found that once I’ve responded to their message, that’s usually the end of any direct contact they will have with me. That’s the part that leaves me scratching my head and wondering why. “Im sorry” seems to have turned into code for “I can’t deal with chronic illness, I’m running away now!”

It leaves me perplexed as to what purpose it served to send me this message, if that is all you’re going to manage? Again I don’t want to sound ungrateful and unreasonable but why bother with all the fuss of making contact, if you have no other agenda than to ease your own conscience? I suppose having continued contact with me might be seen as daunting, as I now have a chronic illness and that my conversational skills must solely revolve around that topic. However if you think that you really dont know me. Yes having a chronic illness has changed me but it has changed me for the better not the worse. See the linked post below for a fuller explanation!


I suppose other situations also seem to warrant this quick message approach such as a bereavement / divorce etc. Unless you’ve been in this situation you probably think I seem like an ungracious spoilt _____ ( you fill in the blank!) but when you live in social isolation it can be very hard to accept that you are just a fleeting thought for someone. Once messaged you can once again be out of sight, out of mind.

I do have massive problems with the word sorry, it makes me feel that the person thinks, that they are in some way to blame for me being sick, which of course isn’t true and isn’t what they meant at all. I just wish I knew why their messages make me so uncomfortable and if I could just come up with a better response than “thank you for your kind words” or my other tactic of minimising my health problems. That’s probably a very British trait I have innately acquired, you know not wanting to cause a fuss!

Or is my aversion to the sorry message more due to the fact that I know thats as far as it will go? I will receive their message of sorry only for them to disappear into the ether again. Even when I first became ill I found the “sorry” conversation a difficult one to deal with. I dont want people to feel sorry for me, I want them to understand what life is like for me. To appreciate that yes my life is dramatically different to what it once was but essentially I am the same person, just with vastly different life experiences. So perhaps its a mixture of not knowing how to respond to the message and knowing that its all our contact will entail, now that I’m seven years down the line with this illness?

I sometimes wonder if I have become too cynical when dealing with others? So many people disappeared from my life when I had to give up work that I am now very cautious when new people come into my sphere. I have become a lot tougher and sometimes less forgiving about the way people treat me. I think its a kind of self preservation thing, I will save myself the pain and frustration of being badly let down again. For further information on this please see my blog post entitled Friends and Chronic illness.


It may amaze some of you (especially with the fact that I write this blog) that I am incredibly uncomfortable being in the spotlight. In a group of people I am always the loudest and the one trying to be the funniest but the attention isn’t directly focused on me, my words are what is captivating the audience. My health problems or anything personal are not in the spotlight then, I am just Rachel. I sometimes wonder if I regard my ill health as some kind of personal failing never to be mentioned in company? Is that why the sorry messages are so hard for me to accept?

I am not only uncomfortable with the messages about how “sorry” people are but even worse are the ones that say “you’re so brave” or “I don’t know how I would cope in your position” I’ve even had the unfortunately worded phrase “I would kill myself, if I had to lead your life” said to me. How on earth am I supposed to respond to that ? I mean telling me that you would rather commit suicide than live my life makes me feel like you think my quality of life is worthless! My life is far from worthless. I do understand, well hope really, that it isn’t what you meant. What you meant to say was “Rach I don’t know how you do it, I don’t know if I possess the inner resources to cope with everything that’s thrown at you”, however to be fair to them I would still probably feel uncomfortable with that one as well but it does sound better!

I did however accept a message of “you’re so brave” last week, because for the first time ever I actually felt like I deserved that acknowledgement. I was home from the hospital and I was injecting octreotide without supervision. I was hand shakingly nervous and thats not a great place to be when you are trying to get up the gumption to stick yourself with a hypodermic needle! When I received the message I had just injected on my own, hubby was at work. The message made my day because I felt brave. I felt I warranted the praise. I wasn’t just living my life as I normally do, I was doing something above and beyond that.

Please can someone tell me how are I am  supposed to respond to the sorry messages and the I don’t know how you cope messages? Because I really don’t know how to.  I cope because I have to! I figured out a very long time ago that I could waste the rest of my life wailing about how unfair it is and why me? and I decided that I wasn’t going down that path. Yes I still have days where I do wobble but I try to remind myself that whatever is making me wobble is transient.

On the whole I want to believe that people are well meaning. The sorry messages are sent to let me know that they have been thinking about me. The other type of comments I will regard as badly executed compliments. Even if they both leave me feeling uncomfortable and at a loss for words.

The world of chronic illness would be so much easier if there was a handbook that explained how to respond to these situations.

My boy – Frankie

Octreotide Trial one week on.

Sorting my syringes for the day.

I’m one week into my octreotide trial and things have not  been going swimmingly. Over the course of the last week I have been developing some nasty side effects of the gastrointestinal kind. Last night I was awoken at 230am and over the course of the next 6 hours I barely left the bathroom.

Over the last week I have been managing to inject myself 2-3 times a day. I was struggling with it initially, not because of having to inject myself but the issue with eating regularly. I learnt years ago to avoid post prandial hypotension to avoid where at all possible eating lunch. At school I would struggle to stay awake after lunch. At university I would regularly fall asleep in the lecture theatre and snore, loudly. This issue followed me into my workplace and to avoid falling asleep in front of a room full of new employees, avoiding lunch was the only thing I could do.

My post prandial hypotension could almost be described as a kind of narcolepsy, I can’t keep myself awake. I have no choice in the matter but to go to sleep. Fighting it makes me feel extremely ill. My eyes roll to the back of my head, my speech becomes slurred and I can not put off the inevitable, I go to sleep. My blood pressure drops so low I awaken confused, not knowing where I am. Nine times out of ten I will initially believe I am back at my parents house, a place I haven’t lived in since 1996. My confusion can last a few minutes to an hour and it is terrifying. Out of all the horrid symptoms I endure this is the worst. It will reduce to me to tears on a regular basis.

As you can imagine, after last night, I was deflated ( pardon the pun) , exhausted and in pain. However due to the amazing results I had experienced I wasn’t ready to throw the towel in just yet. I was wobbling psychologically and feeling a bit sorry for myself but I was determined to carry on.

After what can only be described as a hideous night, out of the blue my consultant rang me to find out how I was doing and to make arrangements for the tilt table test I was due to have on Tuesday 22nd April. On hearing of the disastrous night I had endured, he decided a tilt table test wasn’t going to be a good idea. I have been advised to halt the injections today (Monday 21st April) and resume tomorrow starting off again with one injection a day. I am to continue with one injection a day until I ring his secretary on Friday and let her know how I am doing and a decision will be made from there.

Some of my cyber friends are on this medication for PoTS alone and have been advised not to take it at meal times as there is an increased risk of side effects – wind (gas) , bloating, diarrhea, constipation and nausea. With post prandial hypotension the whole point is I take it with meals. However I am suffering with all but one of the side effects – constipation. How last night I wished that I was suffering with constipation!

I will see how the week goes and maybe if there is no joy I will use the drug to treat my PoTS rather than post prandial hypotension. As the drug works so well I am happy to currently persevere as long as I don’t have a repeat of last night.

It maybe that I can only tolerate one injection a day without incurring the wrath of the octreotide god. If thats the case my post prandial hypotension is always at its worst at lunch time for some reason. If I could obliterate that symptoms with little or no side effects that would be an enormous leap forward.