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.

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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 hypotension 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 hypo-tension (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.

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Many thanks

Rach

 

“Do you work?”

“Do you work?”

 

It is a question I get asked frequently, usually by medical staff. I feel embarrassed when I have to answer, admitting to not working these days . It leaves you feeling that you are in some way a scrounger dependant on others for your means to survive.

 

The truth is I would love to work and I think its great that medical staff see past the wheelchair and my long list of medical complaints. Disabled people are more than capable of being part of the work force, however the issue is not that disabled people are lazy or unwilling to be “productive” members of society, there are usually a whole catalogue of reasons why they find themselves without gainful employment.

 

I was recently asked this question by an old school friend that I hadn’t seen for over 20 years. It is a natural question when you are chatting to someone when you first meet them or haven’t seen them for a long time. I hate this question because it automatically put me on the defensive. I feel like I have to justify the reasons why I can’t work and excuse my inability to be a normal human being. That wasn’t implied by the questioner but it is how the question made me feel.

 

I understand why medical staff ask the question, they want to know if there are environmental factors that could be at play contributing to your condition. They want to assess what it is that you are capable of doing. However when asked I feel like I am being asked to justify my very existence.

 

You see I would love to work, I worked from the age of 16 to 34.  I was very good at my job and my colleagues will still contact me to ask my advice about things even though I haven’t worked since 31st May 2008. I had never had a disciplinary, my capability to do my role had never been questioned, I never imagined that at any point during my life other than retirement that I wouldn’t work ( unless I had a winning lottery ticket ). I never thought that I would become so sick that I wouldn’t ever be able to go to work again. I never imagined that if I did become sick that my employers would be unwilling to make the reasonable adjustments required by law under the 2010 Equalities Act or when I was working the Disability Discrimination Act. I never in my wildest dreams believed that any of this could happen to me.

 

You may read my blog and think she sounds like an intelligent person, her blog posts must take her ages to write etc etc. I would agree that yes I am above average intelligence and my blog posts are time consuming and exhausting. Hence why I only publish twice a week, I would love to have the ability to write full time. However I am only viable for a few hours each morning, after that I struggle with any task that demands mental acuity or physical expenditure. My days follow the same pattern 365 days of the year.

 

I get up each morning riddled with pain despite still being inside my 12 hour slow release dose of morphine. Pain wakes me up every morning and is much more reliable than any alarm clock. Just because I don’t squeal, shout or cry on waking doesn’t mean I am not in pain, it just means I am used to it. I sleep on a memory foam mattress topper, yet I still wake every day feeling like I have slept on a concrete slab. If I wake up lying on my side the pain will be from my face down, whatever part of my body has been in contact with the bed will hurt. If I have been lying on my back the pain is from the back of my head down. The first thing I do every morning is take 5ml / 10mg of oramorph to dull ( notice I say dull because to actually get rid of the pain completely I would have to take such a large dose I wouldn’t be able to function) the pain until its time for my next lot of pain killers.

 

I make my way downstairs and put the kettle on for what will be the first of many cups of tea that day. I have polydipsia – excessive thirst which is part of my dysautonomia symptoms, this is day and night (at night I will go through 3 litres of fluids). This also means a lot of bathroom breaks because I do not hold on to what I drink regardless of the sodium and florinef tablets I take. I also have my first cigarette of the day ( I know thats a hanging offence and I know its not healthy). By the time I sit down for my first cigarette of the day my orthostatic intolerance kicks in and I will have the first of many pre-syncopal episodes of the day (in varying degrees of severity) some days I am lucky and my vision will just grey out and I will feel shitty, other times I am left working out very quickly which direction it would be best to faint in (for the least amount of physical damage). For the casual observer you wouldn’t notice this because if you were talking to me I would just carry on the conversation, not because I am some sort of hardcore hero but because I am so used to it now I try to prevent it being a big issue ( that works fine until I actually do black out / faint).

 

Once my cup of tea is made I then make my way to the sofa and this is where I will stay until it is physically safe for me to climb the stairs again to have a shower (helped by my husband). This will take several hours to achieve, again to the casual observer nothing appears to be wrong with me other than the fact I look like a lazy bitch. You see my illness gives you no outward signs, no clue as to what is going on inside. Its easy to make assumptions by just looking at me.

 

During my enforced sofa time, depending on how mentally with it I feel I will check my emails, facebook, twitter and if I am ok I will attempt to write one of the two blog posts I write every week. Some weeks I don’t manage to write two, thankfully I have used the good weeks to put together some what I call back pocket posts, ones I use in an emergency. However my emergency posts are not always fully formed and need some work done to them, in those situations I usually just post my apologies.

 

If I am not up to writing then I will watch TV, due to my enforced early bedtimes – anything from 4pm onwards I have to record a lot of programmes that I follow in the evenings. I haven’t seen evening TV for so long I couldn’t tell you what happens after the 6pm news on BBC1. I follow a lot of TV far much more than I will ever admit to. Somedays I can’t even do that because my memory is so poor I can’t remember what happened in the previous 15 minutes and the plotline is making no sense.

 

If I manage a shower and there are many days that I don’t, I need to have an hour or so of rest to get over the physical exertion. Things have changed dramatically from my pre sick days. I used to wash and blow dry my hair everyday, I wore make up – even on my days off. I never left the house without make up. I wore nice clothes and believed that sweat pants were for gym bunnies or obese people that were just kidding themselves. Its easy to be judgemental when you’re not in others positions. My favourite piece of clothing now is a pair of yoga pants and a sweat top or pajamas. I used to be well put together and took pride in my appearance. All of that takes far too much energy these days and the energy I do have I want to use for other things. I still make an effort for special occasions and doctor appointments ( sometimes doctor appointments are special occasions as it maybe the first time I have been out of the house in months). 

 

I have learnt that you need to be properly dressed and wearing a full face of makeup for doctors appointments otherwise you get accused of being depressed. The fact that the journey to see them is going to take you days to get over, even though it was only a 15 minute car ride is neither here nor there to them. Anyone who doesn’t take pride in their appearance must be suffering from depression after all thats what they learnt at med school. I also learnt not to wear a lot of black to these appointments, black is one of my favourite colours with very pale skin and blonde hair black is dramatic on me especially if I go for bright red lips. Unfortunately doctors aren’t that fashion forward and all black is another indicator that your sickness is all in the mind. Anyway I digress as usual!

 

As the day ticks on by the less and less energy I have. I struggle to keep myself upright even in a seated position. Due to Ehlers Danlos Syndrome affecting my spine as the day progresses my spine takes on the shape of a letter C and my neck starts to struggle to hold my head up, it lolls towards the top of my back. This is not comfortable but as I try to stay out of bed as much as I can I will lie on the sofa or sit propped up by cushions. I have difficulty thinking clearly and have difficulty finding the right words. I know the word I want yet it cant seem to make its way from my brain to my mouth. It hasn’t been just once that on my personal facebook page I have asked friends and family for the word I am looking for. To know that you are an intelligent person and to fail to be able to articulate is soul destroying. It is one of the symptoms I find hardest to deal with.

 

My sight deteriorates throughout the day as well with varying amounts of double vision or ptosis (which can affect one or both eyes). Using computer screens becomes more and more difficult. Dependent on what level my health is at on a particular day I may have to use my oxygen concentrator to supplement the amount of oxygen circulating in my system.

 

Bed can never come soon enough and it’s not uncommon for me to be so exhausted by the mornings activities that I need to sleep for an hour or so in the afternoon.

 

I realise now I haven’t even mentioned the other ways in which my dysautonomia can impact my day. I never have a day when my postural orthostatic tachycardia syndrome does not play a part. On a bad day every change in posture (which can mean as little as turning over in bed or moving my head) is accompanied by the feeling of my heart racing to the point it seems as if it will burst out of my chest. I become short of breath and can feel at times that I am having a heart attack such is the severity of the pain in my chest. Again to the casual observer it would only be on a very rare occasion that you may notice that there is wrong with me. I am the master of disguise and to admit to you that there is a problem means that you are in my inner circle, the only people I tell the truth to when you ask me how I am.

 

Next time when someone asks me “do you work” I am going to answer “Yes, I am a professional sick person. Such is the level of my expertise you will never realise the sheer shittiness of the hand I have been dealt!”

 

You know you have EDS when …..

As this is the last Monday in May this will be the last post on a Monday dedicated to EDS. Thats not to say I wont ever write about EDS again on a Monday it just won’t be a deliberate act!

 

On many of the groups that I am part of on facebook every so often someone starts a post along the lines of “You know you have EDS when…?” and others are invited to take part and effectively fill in the blank. Its always prefaced with “lets make this a positive post” or “just for fun” , I find this highly irritating. EDS seriously affects me and impacts the way I live my life from the moment I wake from the moment I sleep. I struggle to find anything remotely funny about having this condition not because I am an old sour puss but because I think these kinds of posts trivialise other peoples suffering.

 

I am not saying that I never laugh about the craziness that EDS has imparted on my life its just those laughs are few and far between.

 

I accept that EDS is a syndrome where people will be affected to a greater or lesser degree. However some of these groups are mainly people who are on the lighter end of the scale and when others start talking about the more serious side of EDS like wheelchairs, gastroparesis / intestinal failure or multiple dislocations they are told that they are scaring people for telling them how EDS affects them. Its a poor show when you can’t be supported by the community you belong to.

 

For EDS awareness month a UK EDS charity released a short video highlighting some aspects of EDS. It showed a gymnast showing off her flexibility by contorting into various positions and it also showed some teenage girls who were being fed via a nasogastric tube. On one of the groups this was heavily criticised for being unduly negative about EDS. I thought it was well balanced but I guess some people like to live in denial, that the bad stuff won’t happen to them. They themselves are guilty of not accepting this is a syndrome which affects individuals differently.

 

So I am going to give you my version of “You know you have EDS when ….” and hang the consequences! 

 

Warning this post is dripping with sarcasm!

 

You know you have EDS when despite sleeping on a memory foam mattress with a maternity pillow and special neck pillow you wake up feeling like you slept on a concrete slab. Every joint is stiff and sore and depending on whether or not my stomach is working, the painkillers I have just taken may or may not work.

 

You know you have EDS when easily getting down on the floor ends up taking 45 minutes to get back up. Its become such a regular occurrence in this house that I am now banned from getting down on the floor without supervision. The last time I got stuck on the floor I was there for over an hour. My arms wouldn’t take my weight pushing me back up and my legs were refusing to cooperate. It wasn’t remotely funny because yet again it showed me how much my body has declined in the last 7 years.

 

You know you have EDS when you can dislocate your hip rolling over in bed or dislocate your shoulder by flicking your hair out of your eye. My hips can and do pop out with tremendous ease along with my shoulders. If they don’t fully dislocate they will sublux (partially dislocate) leaving me with a horrid grinding sensation in the socket of the joint.

 

You know you have EDS when lying on the sofa not moving you hear a loud pop and you know that is a disc in your back. You daren’t move because you know what kind of pain its going to cause. Instead you lie still in the hope whatever made the pop resolves itself.

 

You know you have EDS when the pain is so intense you can’t even stand the dogs gently knocking you and you have a massive sense of humour failure.

 

You know you have EDS when you lose a stone  (14lbs for those of you in the USA) in weight in 3 weeks because you can’t eat more than 6 jacobs cream crackers in a day. Any more than that and you are projectile vomiting so hard you start to bring up blood.

 

You know you have EDS when despite not being constipated and knowing that you need to go for a poo your muscles won’t coordinate to get the damn thing out. You resort to all sorts of weird things to encourage the muscles to wake up but nothing happens and it gets more and more uncomfortable. Later you feel like you have given birth to what is termed in this house as a “Poo baby” as it feels like you have carried it inside you for 9 months!

 

You know you have EDS when you randomly choke on your own saliva. There is some argument that the issue with swallowing could actually be down to dysautonomia rather than EDS. It doesn’t matter I am still a world champion when it comes to this!

 

You know you have EDS when you have more supports / walking aides  in your house than the local chemist. Wrist supports, knee braces, crutches, walking sticks, ankle braces wheelchair and frames. I need a whole room in my house just to accommodate all the things I use on a daily basis to help with pain / mobility.

 

You know you have EDS when daily from 3pm onwards you are trying to work out in your head how early you can get to bed without annoying the husband. Exhaustion / fatigue is a real issue for people with EDS. It is estimated that due to our lax muscles, ligaments and tendons we can use as much as 5 times more energy than normal folk just doing the basic things like standing, walking etc. The fatigue we suffer isn’t cured by ” a good nights sleep” ( you don’t sleep very well with EDS), it is constant and crushing. Some days you spend the whole day in a fog and other days it just creeps up on you during the day.

 

You know you have EDS when sleeping in ill fitting nightwear causes bruises. I have slept in an oversized t-shirt before and ended up with arms that were black and blue due to the material bunching up and pressing on my skin.

 

You know you have EDS when you can not walk through a door without smacking into the frame. You can not miss an opportunity to get your fingers caught in drawers or doors. You poke yourself in the eye flicking your hair out of the way! EDS sufferes struggle with Proprioception we can not identify where our body is or joints are in relation to other objects or even other parts of our body. We are often thought of as clumsy due to our constant tripping over our own feet or walking into things.

 

You know you have EDS when in the height of summer you have a hot water bottle or heat wrap clamped to part of your body.

 

You know you have EDS when you have to write a list like this!

 

Thanks for reading!

 

EDS information

As promised every blog post on a Monday throughout May 2014 will be about EDS to raise awareness of the condition or to simply help fellow sufferers. Over the last few weeks I have received a few questions / comments on www.themyastheniakid.com and www.themyastheniakid.blogspot.co.uk  asking for further information regarding the different types of EDS  after people had read

If you think you have Ehlers Danlos Syndrome  / (wordpress blog version of the same post) this has been one of my all time most popular posts and after all this time weekly can receive more views than my new posts combined, so clearly there is a need for this information.

I am not a doctor nor an expert on EDS and I can only provide links to information sources or tell you about my own personal experiences. I have had to reach out to my friends in the EDS community to pool some information together and my eternal thanks must go to Anna who has helped no end putting this post together.

Firstly I wanted to provide a link which explains the different types of EDS. ehlers-danlos.org provides a quite easily understood outline of the different types of EDS, their symptoms, how they are tested for and the way that they are inherited. Sometimes I find sites provide too much information for the “beginner”, I get lost as soon as they start talking about genetics my brain just can’t cope with it. This site explains it as simply as possible which is good for when I have those information overload issues!

My blog mainly focuses on my “flavour” of EDS which is hypermobility. I do have friends with Classical EDS but I can only write from my own perspective of how it affects my own health as each type of EDS can present with its own unique symptoms. As I have stated in previous posts EDS is a syndrome so people are affected differently, no two EDS patients are the same. So the blog is very much my own personal story and can not be claimed to represent the whole HEDS / EDS  community.

Having spent a while researching good sites / articles for EDS I came across this piece of advice on ehlers-danlos.org  How to prepare for your doctors appointment . This takes you through step by step on preparing a medical history  and how to approach the subject with your doctor. Many doctors seem to be working under the impression that EDS is extremely rare – it’s not that rare its just under diagnosed and that all cases of EDS are picked up in childhood ( again not true!). Having lurked on forums and from my own personal experience many of us are diagnosed in our 30’s and 40’s (my dad was diagnosed after me at the age of 61!) after years of being fobbed off and being told that we are suffering with anxiety, somatisation disorder or are just reading too much on the internet.

I think a lot of the problem in the UK is that health professionals work in isolation. As a child had my dentist and doctor spoken to each other red flags would have been raised (as I showed clear dental signs of EDS and my constant complaints of leg pain to my GP),  they may have seen the bigger picture. By the health care professionals working in isolation it meant I spent many years thinking it was my unique problem and there was no name for it.

I have found this link thanks to Anna EDS information it is the most comprehensive journal article that I have ever found and if you believe you suffer from EDS or have the EDS diagnosis I sincerely recommend that you print this article out (perhaps lose all the references as its 23 pages long in total!) and keep it, to shove under the noses of any doctors that you come across. I have had my diagnosis since 2011 but I have found information out that I had no clue related to EDS! It is an absolute gem of an article and one that I will read and reread because each time I do something else pops out at me!

I  have never done this before with any blog post but this post is being dedicated to Skye in Australia who was the inspiration behind this post and told me her story. Her questions also pointed to the need for my blog to contain more information about EDS that would be useful to those searching for a diagnosis and those already diagnosed.

EDS is a multi-system syndrome and needs to be treated as such rather than just being seen as flexible joints and pain! Our doctors need to be educated about it and so do we, otherwise how can we be our own health advocates?

EDS and Pain

As promised as part of EDS awareness month here in the UK I am dedicating each Mondays blog post to the subject of EDS. However due to being hideously poorly this is being posted on Thursday instead. 


EDS to me equals pain. Some people are really lucky (after all EDS is a syndrome with people affected to different degrees) and have very flexible joints and no pain. Others like me have a great deal of pain and others again have the added complications of gastroparesis and intestinal failure. Despite my pain I still consider myself one of the lucky ones.


I’ve had pain in various parts of my body for as long as I can remember. I don’t recall a day in life where I wasn’t experiencing pain of some description or another. As a child I assumed that everyone suffered with these types of pain and that it was normal. I limited discussions on it not wanting to appear weak, if no one else was mentioning it then there must be something wrong with me if I had to mention it. When I did mention my pain it was brushed off as growing pains or that I was just saying it to get out of something I didn’t want to do

From the age of 16 I had problems with my back, I regularly slipped discs up and down my spine. It wasn’t until I got much older that things took a turn for the worse with my life long companion EDS. 


In 1999 I managed to injure my back quite badly, slipping two discs and I was in excruciating pain. I knew when I heard a very loud pop that I had done something bad. I didn’t make a fuss though as I was in an exercise class and we were lying on the floor stretching out after our workout. Yes I managed to slip two discs lying down. That is how much fun EDS is! I took myself off home after class, dosed myself up on painkillers and went to bed. The following morning although I could barely stand and the pain was so intense involuntary tears ran down my face, I sucked it up and went to work. My boss was not a pleasant person and saw any illness or injury as a personal failing. At every available opportunity he / she would bitch at me calling me a hypochondriac or saying ” they had never met someone with such bad health”. This person never had an ounce of compassion for another human being in their life. When I rang them and informed he/she I would have to go home as I was in too much pain the phone was slammed down on me. The previous attitudes I had encountered when I mentioned I was in pain were still alive and well.


Over the next few years I had a few more slipped discs. I regularly visited a chiropractor who practised the Bowen technique. I confounded her as the manipulations never held. She told me at the end of one session that she knew that there was something wrong with me she just had no idea what it was. She had never come across it in all the years that she had been practising. 


I started to regularly pick up injuries plantar fasciitis in both feet at the same time, bursitis in both hips at the same time. All the time I carried on working with these injuries despite being in pain. My back was getting worse and worse. I could no longer stand in one spot for more than a minute without it seizing and locking up. Despite numerous visits to the doctors no investigations were done, occasionally I would be sent for physiotherapy but most of the time I was just given pain medications. The pain medications never worked they barely took the edge off. If I was using prescription medications I would be self medicating with over the counter drugs. It got to the point where I couldn’t not take pain medications, such was the intensity of the pain I was enduring. I wasn’t addicted to painkillers but without them life was miserable due to the pain being under medicated for years. 


I never got on top of my pain until 2011 and I finally got my diagnosis of EDS. I had to fight to get a referral and even then I had to pay to see a doctor privately. Although this doctor did diagnose the EDS she didn’t appreciate the smallest amounts of movement above the limited activity I did perform daily would have me in agony. She objected to the fact I was using a wheelchair ( something I had used since 2008 as walking caused so much pain in my back, hips, knees and ankles on top of the dysautonomia I was also suffering with). Her reasoning was I needed to be more active and this would reduce the pain, what she didn’t take into account was the severity of my postural orthostatic tachycardia syndrome / dysautonomia. At the end of the appointment she made me walk from her consulting room to reception. A distance I hadn’t tackled for years. She walked behind my husband and I ensuring I didn’t get back in my wheelchair. I should have stood up for myself and told her to —- off but so pleased was I to have a diagnosis I was not going to let anything change her mind about what she was going to write in my official letter of diagnosis.


She proved her point with difficulty I could walk that distance however what she didn’t see was the three weeks I spent in bed recovering from her “wheelchair intervention”. Bursitis flared in both my hips, plantar fasciitis in both feet and my back has never been the same since. In tears I contacted my gp, who after trying me on every drug he could before starting me on morphine reluctantly had to admit defeat and write the prescription. 


We had both held off from that day for so long. Once on this road there was no turning back. There is a lot of emotion about opiates, some people seem to think that if you take opiates and aren’t dying from cancer or some other dreadful disease then you are a junkie / addict. Let me assure you this is simply not the case, I do not and never have taken morphine to get high, I don’t get high with it. What morphine allows me to do is get out of bed and have a bit of a life. Without morphine I would be in bed unable to move due to the severe pain in my joints. I would have zero quality of life. I do not intend to spend the rest of my life staring at four walls because of peoples ill informed attitudes towards opiates. After taking the medication I spent the first time in as long as I could remember without severe pain.


People may argue that I could have tried various different things before “giving up” and taking an opiate painkiller. I would respond with “don’t you think I have tried?”. Here are just a few of the things that I have tried over the years acupuncture, osteopathy, Bowen technique chiropractors, massage, Tens machines, exercise, Yoga, applying heat and using distraction techniques. You see it wasn’t that I didn’t try, it was that nothing worked. I still use applying heat pads / hot water bottles and distraction techniques daily to manage my pain. I will always use these first before resorting to taking more medication. Its never a case of popping more pills I use my medication sparingly. I plan to live a long life and I don’t want to get 20 years down the line and be out of pain medication options.

 

Sometimes I get asked “what joints hurt?” its easier to reply with what joints are not hurting that day. Every joint in my body causes me pain. For the last few days every joint in my body has been burning. The pain has been so intense it’s been difficult to get comfortable as even the duvet ( comforter in the USA I believe) touching my feet has hurt. Its not always this bad most days its a 5-6/10 which is a level I can deal with. At the moment my back and hips have decided they would like to be the centre of attention, next week it could be something else! Some days its a constant battle to keep on top of the pain to stop it spiralling out of control other days I don’t need to touch additional pain killers however those days have been few and far between recently.

 

Like anyone with chronic pain there are days when the pain alters my personality. On a bad day I can become quiet and withdrawn. I can get really snappy, losing my temper at the slightest provocation. A dogs paw placed in the wrong place can leave me writhing in agony. I have a couple of these days a week and they are usually preceded by a night of poor sleep. Poor sleep is the chronic pain sufferers worst nightmare, for me it doesn’t only affect my pain levels but it also exacerbates my dysautonomia. 

 

Over the years I have also noticed that changes in the weather can also lead to increased pain. There is a joke amongst the EDS community that we are human barometers. I have an increase in migraines and joint pain when the weather is stormy. Cold weather is the absolute worst for my joints as it makes everything feel tight and sore. If my legs get cold ( even just a draft on them) it can cause me agonising pain. They don’t change colour like in Raynauds phenomenon but they do go pale and until I get them warmed up the pain can be very intense. 

 

EDS causes me a great deal of pain but I still try to get as much out of life as possible. One day when I was visiting my consultant I said ” I wish I had known sooner that I had EDS, I could have tried to protect my joints”. He replied “would you have lived life any differently?” my answer was “probably not.”

 

Me in bed on a bad pain day!

Hello and welcome!

If youve suddenly discovered this blog on wordpress.com dont be alarmed! It has existed on Blogger since 2008 at http://www.themyastheniakid.blogspot.co.uk. I decided over the last few days to blog on dual platforms to create a wider audience as I am now blogging more seriously and it gives me something to do.

I am still finding my way around wordpress so please bear with me whilst I get used to the set up. All my blog posts that appear on Blogger are here also – except this one.

I hope you enjoy my blog about the crazy world of dysautonomia / PoTs / autonomic nervous system dysfunction/ Ehlers Danlos syndrome Hypermobility type and all the other myriad of conditions I have been diagnosed with. The blogs name comes from the fact I was initially diagnosed with Myasthenia Gravis back in 2007 and depending on which doctor I see its still in the mix.

Enjoy!