Another Hospital Adventure Part Two

Last week I wrote about just the first 24 hours of my three-day hospital stay, if you missed it you can find it HERE. This week’s blog post will be about the remaining two days.

Day two

I woke up happy in the knowledge that Jay would be coming to visit me, we had feared had we not been able to arrange a sitter for the dogs he wouldn’t have been able to visit (thank you I.C).

Quite early in the morning one of my neurologists came to see me to give me the MRI scan results (which were negative) and to advise me that an anaesthetist would be coming to speak to me, he told me I needed to convince her to do the epidural blood patch. I should have realised then that she wasn’t on-board with it but it went over my head. He also discussed occipital nerve blocks (injections in the base of my skull) to see if that made any difference. If they didn’t it was more proof that the leak was real, he told me for the moment we wouldn’t be doing the caffeine infusion if I was getting a blood patch the following day.

Within about 30-40 minutes the anaesthetist popped around to have a chat. We spoke about my various medical conditions, the pro’s and cons of an epidural blood patch, the procedure itself and the protocols for recovery. The meeting seemed very positive and it felt like it was a go. Halfway through the meeting Jay turned up and he was able to give his input on how incapacitated I have been etc.

After she left we decided to have a coffee downstairs in the restaurant but as we were about to leave the neurologist came to see us and asked how the meeting had gone. We told him she had gone away to do some research ( and I had pointed her towards CSF Leak Association ), she would get back to me and that we both felt the meeting had gone well. He then asked me to go back to the ward as he wanted to do the occipital nerve block injections.

He did say the usual “short scratch coming” which at the moment still feels like the understatement of the year. I pride myself on my high pain threshold after having a lumbar puncture when the local anaesthetic had worn off, putting up with the most horrendous bowel adhesion pain for 6 months before they operated. Nothing prepared me for how painful this was. The doctor felt around the base of my skull asking which part was most painful and then injected local anaesthetic into that area. I was injected 4 times, the worst bit on the following three was knowing how sore number one had been. The pain made me sweat almost immediately and tears pricked my eyes. I have very colourful language and was mindful that we were on the ward, so managed to limit myself to the odd “Jesus Christ” and “Shit the bed”. I have no idea where shit the bed came from it’s not something I use ever but it helped.

The feeling of numbness was exceptionally weird, the back of my head felt like it was missing and the tips of my ears went numb. I was determined to go and have a coffee (and a fag to be honest) so immediately after the injections were administered I left the ward. As I had spent so much time lying flat I knew I would get an hour or so upright. My days are spent lying down so I can get the odd hour here and there to get stuff like having a shower done. It’s not a great way to live but it works for me at the moment and you have to play with the cards you have been dealt. At the moment I have an extraordinary bad hand but I am just waiting for a fresh deal.

Jay could only spend a few hours with me and they raced by. The times when I had visitors (my parents visited every day) went the quickest. The ward I was in was classed as short stay, essentially you were there until they could get you a bed on a proper ward, so patients were always changing over. By Thursday afternoon I was the only original patient left from those I was in with on Wednesday.

In the afternoon the anaesthetist returned, she caught me wheeling myself back from the toilet. Her opening statement was “You look better after those nerve blocks”. I didn’t look better, I didn’t look any better than I had done that morning. The only difference was the back of my head was completely numb. My head was still pounding every time I was upright. I knew with her opening gambit the news wasn’t going to be good.

She had decided that she wasn’t going to do the patch, she blamed the fact I had EDS (something I hate because ever doctor who refuses to treat me does this despite all the literature telling them the only difference in surgical approach is the closing of wounds. I find it incredibly lazy and insulting). To be fair I don’t really remember much of the conversation as I was crying so hard. She told me she thought the best thing I could do was be referred to pain management. She seemed to think that this was the perfect solution, me lying down for the rest of my life stoned off my bonce on pain meds.

I cried on and off for the rest of the afternoon. It was a mixture of anger and frustration, I knew I couldn’t tell Jay at this point because he had left thinking that the blood patch was being done the following day and that potentially I would be fixed. I rang my mum, who talked me out of self discharging, I can say truthfully if she hadn’t had been on the end of the phone I would have just packed up my belongings and got a taxi. I was so frustrated with it all that I couldn’t see the point in being separated from the dogs and my husband any longer. My parents drove across the city to come to see me and to give me the medical information they had printed off about CSF leaks and epidural blood patches.

I didn’t see any other doctor after the news that the blood patch wasn’t going ahead. I want to think it was because they were as frustrated as I was although the thought has crossed my mind that they had heard about me losing my shit with the catering staff and were in hiding.

I rang Jamie later in the evening to tell him that the epidural blood patch would not be going ahead. I managed to hold it together and not cry whilst I was talking to him. We were both exceptionally angry as we had been sold the hospital stay on the premise that I would have a blood patch, that I could possibly get better. He had lost a week’s holiday pay taking the time off. It was such a blow to both of us that we are still angry about it. I should never have been admitted if they didn’t have the anaesthetist on-board.

Day Three

I woke up in agony with my back and spent the usual amount of time begging for pain relief. I wish I was allowed to administer my own medications in hospital but as they are controlled drugs I am not allowed. So I am at the mercy of the nurses and how busy they are. My head was also really bad as I had spent too much time upright the previous day. I couldn’t lift my head of the pillow without intense stabbing pains. My eyes were also extremely sensitive to light so from 6am I was wearing sunglasses.

My back never copes with hospital beds and always causes me lots of problems. Quite often it will take me a good 48-72 hours to get my pain levels back under control after a hospital visit, which is simply ridiculous. In hospital I had been confined to my bed as I couldn’t sit in the chair as my head wouldn’t allow this. At home I can lie down on the sofa or on my bed and the changing surfaces stops my back getting too angry. However today I could quite happily rip my spine and surrounding muscles out as I am in agony with muscles that are in spasm. Pain makes me emotional and tired, which is not a good combination. Any tears in front of a doctor and you are immediately labelled as depressed.

I saw a different neurologist first thing in the morning who advised me that the caffeine infusion would be going ahead. In my notes the pharmacist had left a message informing the doctors I would need an ECG before the infusion. To which this doctor said I didn’t. Without a definite yes or no on the ECG my treatment was delayed further. All I was concerned about at this point was getting home and I was getting frustrated that no one was taking any action. By 10am I was washed, dressed and packed, that is how serious I was about leaving. I was also beyond exhausted, although I had been sleeping whilst in the hospital I was constantly being woken up by people being moved into the bay. My bed was right beside the door and no matter how careful the porters were my bed ended up being bashed by the door as they wheeled a bed through. It would hit the end of my bed so hard that the whole thing would shake. People were in and out constantly so my no matter what time of the day or night it was my bed was being knocked.

Between approximately 10-11am I saw my usual neurologist who apologised for the change in plan, he was as surprised as I was that the anaesthetist had refused to do the epidural blood patch. He assured me that he and the consultant would come up with a plan. (I have now been home two weeks and have yet to have had any correspondence with them.I know things move slowly in the NHS and I am one of many patients, it’s just life is particularly tough at the moment). The plan for today was that I would have an ECG and as long as that was normal they would go ahead with the caffeine infusion.

Our bay was being looked after by the dream team today and I am not being sarcastic. The two nurses we had and the health care assistants were brilliant, really funny, got stuff done quickly and were in and out all the time. In the two days prior to this we were lucky if we saw anyone at all for hours at a stretch. One of the nurses was the lovely lady who had come to my rescue on the first night when I had the issue with food (Cottage pie, Fish pie anyone?) and we had a male nurse as well. I don’t know who was more unlucky, me or the male nurse as he was the one going to be doing my ECG. If you have never had an ECG, they basically stick a bunch of sticky pads on your body in various places. It can be a bit embarrassing for all involved if you have a large chest (that’s me) as a lot of the stickers have to go around and under your bosom. Years ago I had a very embarrassed male nurse putting the stickers on and he could barely bring himself to touch my breasts to put the stickers underneath. Now when I have an ECG I grab the bull by the horns and grab them myself cupping them out-of-the-way to spare both our blushes.

As expected my ECG was normal and half an hour later the caffeine infusion was started. I was warned prior to it starting that if I got palpitations, felt weird etc I was to call for a nurse. I really didn’t think I would feel anything as I drink so much coffee these days as caffeine boosts CSF production. Some days the coffee helps a lot and other days it makes no difference at all. The infusion would take about two hours to run and after that I would be free to leave the hospital. It was a very long two hours!

Just as the IV was started lunch was served to our bay. The catering staff out did themselves, managing to give 5 people the wrong lunches and I ended up without one. When we tried to get the catering assistant to sort it out, she left the bay without speaking. We ended up calling a nurse to then get hold of the catering supervisor to sort the cock-up out. I eventually got my vegan curry, however the lady across from me who suffered from Coeliac disease couldn't get a guarantee from the catering staff that her meal was indeed gluten-free. I on the other hand never ever want to eat curry again.

Initially I felt nothing as the drip started. It was only on the 30-40 minute mark I started to feel strange. I felt like every muscle in my body was twitching or vibrating and I felt really buzzy. I started to get palpitations which I thought were more to do with postprandial hypo-tension or reactive hypoglycemia. I did call for a nurse and my observations were taken, my blood pressure was just bizarre 121/66 ( a wide pulse pressure of 55 should be nearer 30) and a pulse of around 75. So there was no need for concern and the infusion could continue.

As time went on I noticed that my head pain had reduced and I was now able to sit up without grabbing at my head. This effect lasted for 5 hours, believe me to be headache free for 5 hours was absolute bliss. It also reduced my head pain for the following 5 days. By the time the infusion finished I was sat up and no longer had to lie down. I had my sunglasses off because my eyes weren’t light sensitive and they remained that way for the  following 5 days.

I managed to leave hospital at around 3:30pm with a diagnosis in writing of Spontaneous Intracranial hypotension (SIH) or in layman's terms a cerebrospinal fluid leak. I suppose even though I hated every minute of being in hospital at least I have that diagnosis, which has been backed up by the occipital nerve block injections and the results of the caffeine infusion.

We are still raising money via Help me walk the dogs again for a new wheelchair and power trike attachment so I am able to get up to Woodbury Common and walk the dogs again. We have now raised £1400 of the £5000 we want to raise. Hubby is getting his back waxed on 31st July and as you can see from the picture he is pretty hairy! You can sponsor him via my go fund me campaign. The waxing is being recorded and it will be released on YouTube and via my blog.

Many thanks

Rach

And Breathe part two

I am exhausted, I have been "normal" and been out of the house two days in a row and not for completely medical reasons.

For regular blog followers who don't follow the The Myasthenia Kid on Facebook, my mum's operation was cancelled on Monday 12th at 3pm, she has now been booked in on 28th April. So fingers crossed it is third time lucky. It is quite stressful waiting for her to have this operation. She needs it so desperately and the pain is so bad for her. Every day I worry she is going to have a bad fall and end up breaking bones. So we wait and hope that it will happen on 28th.

I had my dermatology appointment today for my dodgy mole. I had two dermatologists look at it and they are not concerned at all. I have been discharged from their service however if I have any concerns in the future I am to contact my gp. I have many raised moles on my body so I don't think it will be the last time I will be seeing them. The consultant I saw was really lovely, the registrar was not very welcoming - not rude but you could tell he was either shy or just felt out of his depth with my medical history. Before even looking at the mole he was panicking about local anaesthetics as they don't work very well on me. He asked me how I manage to have dental work, I told him most of my dental work is done at the speed of light as I burn through locals very quickly. He went quite pale.

He seemed quite unprepared as one of my moles I needed checked was in an intimate area. He asked me to undress but provided no blanket or gown for me to cover myself with. When I told him I wasn't going to sit half-naked unless I had something to cover myself up with he quickly went and got me a gown. I was really surprised that he thought this was ok, when moments earlier he was asking me if I needed a chaperone, despite my husband being in the same room. It seemed he was more interested in keeping himself protected than protecting my dignity!

As both my moles were ok we were in and out in around 15 minutes. I had booked a dog sitter for 4 hours - just in case, so hubby and I were furbaby free (furniture would not be eaten and the dogs would not be serenading the neighbours). We headed off into the city to have a mooch around the shops. It was the first time we had been out of the house together for a non medical reason for probably 6-12 months. No that wasn't a typo that's how long its been. I actually can't remember the last time we were out together alone.

I also went out yesterday for non medical reasons (as in no gp or hospital appointments). My friend H took me out to the local garden centre. It was quite a big deal, as previously when friends have taken me out I have used crutches or my sticks rather than my chariot. I have a really big issue about my friends seeing me in my wheelchair or me needing them to push me. Yesterday marked the first time ever that I had been out in my chariot with a friend. I was very nervous about it. H needed a crash course on assembling the chair and she picked it up like a pro. I decided that I was going to propel myself as doing that means whomever is with me can walk along side me and chat rather than have me have to turn around and speak to them. You don't think about these things until you are in a wheelchair.

As its been a while since I have been out in my chair I had forgotten exactly how wheelchair unfriendly the outside world is. I managed to leave a nice black line down a newly painted white plinth because it was just a few millimetres too small for me to get past comfortably. I also managed to destroy one Wellington boot stand. Normally that would leave me mortified but for some reason it drove me to hysterics. I wasn't even embarrassed that I had knocked it over. Poor H had to hurriedly pick them up whilst I negotiated an even tighter right turn. Luckily that was the extent of the damage caused.

I stayed out for 2 1/2 hours (go me!) it left me utterly exhausted. I went to bed for two hours when I got home but as usual when I have been out I return wired tired / amped. My head is buzzing from the excitement of being out of the house my body is wanting to melt down. I battled on until 7pm and then crashed spectacularly, falling asleep, well actually it was more of a horrific postprandial episode that I didn't come around from until 10pm and then it was only briefly.

For some reason the postprandial collapses are worse than normal and due to one starting right now I am going to leave this and come back when it's over!

Ok so I am back its is getting a bit boring now having to rest / collapse every time I eat. It has been really awful since yesterday. My heart pounds so hard in my chest it feels like my ribs are going to shatter. I become unbelievably tired as my blood pressure drops, today I recorded 79/40 just before I had to go to sleep as I couldn't stay awake any longer. It seems to start my heart off in a funny rhythm where it pounds in my chest for the rest of the day grrr!

Anyway I digress both yesterday and today I have had a lovely time in the outside world. It makes a change from the four walls I normally view. I am beyond exhausted and I feel like I am having an out-of-body experience.

My own hospital appointment for a week of tests has been pushed back until May at my request. There was just too much going on this month for me with mum's operation, my dermatology appointment and my sisters scan for her baby. There was no way my blood pressure was going to be my normal low, it would be raised with the stress of it all.

So I am a very tired but happy bunny today. 

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.

Octreotide:

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.

B12:

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.

Emergency Admission / Weekend from hell part two

*WARNING*

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

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

*    *    *    *

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To which after being called stupid I said 

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

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

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

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

S: "You're being stupid, you won't be able to urinate once the catheter is removed"

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

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

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

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

However lets look at the facts 

- my bladder was no longer in spasm

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

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

- The student doctor had written my drugs chart incorrectly

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

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

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

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

- And the one that sealed the deal, they didn't believe that my ANS is screwed

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading.

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

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

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.