Two became one! Hurrah! Well, apart from the deeply annoying Spice Girls earworm typing that has created. I'd throw in another hurrah but my brain is currently in some sort of mid 90's flashback. After tuesday's visit to an outpatients department that felt like walking through the door into the 1970's* this is probably a fitting, NHS inspired tour of the decades.
So, yesterday morning sense prevailed and a nice admin lady phoned to explain that not only was there no way of getting my notes to the two hospitals as patients are still absolutely not allowed to go anywhere near their own notes without applying in writing, but that they'd also booked me in with the wrong consultant so did I want to rearrange. I did and now I've got an apppointment with the nice rheumatologist in about three weeks time. The difference in the way the NHS performs when poorly paid, and generally poorly treated admin staff have the freedom to use their extensive knowledge and common sense organising skills is astonishing. Focusing on that kind of issue from the bottom up, allowing these excellent and dedicated staff members to suggest practical, locally based improvements would certainly improve both NHS performance and experience. However, no-one in government actually listens to me, or anyone else floating around the 'bottom' of the system because it's really far to important to impose top down, opposed by almost everyone, 'we promise we won't do this' reorganisations.
Only having to get myself to one appointment made a big difference to my day. I was able to fit in an early nap, cope with scooter hoisting in the rain, and having previously met Dr Breathe I wasn't overwhelmed with "they think it's all in my head" anxiety.
The other big difference was that yesterday's staff demonstrated how to communicate well with patients, in complete contrast to tuesday's experience. It's important to say that Dr Heartsink wasn't in any way unpleasant and although he said some rather odd things, there was clearly nothing behind that apart from a need for some communication skills training. In many years of accessing healthcare, both here and for a short period in the USA I have seen my fair share of outright crueltly to patients. Cruelty crosses a very obvious line, often created by understaffing and poor leadership, but its also very distinct from someone saying things that are really no more than a bit daft.
So, back to the 'how to communicate with patients' experience. When I arrived at outpatients yesterday there were a few people waiting, and shortly afterwards a nurse appeared to explain to people and write on the board that clinic was running 55 minutes behind. Anyone who's spent much time in hospitals knows this is either because the clinic is in utter chaos, or because it's running brilliantly and the consultant is choosing to give each patient as much time as they need, not the alloted time. Several people in the waiting room grumped and snarked about the delay, but I'd found the open staff wi-fi so was quite happy.
A nurse came to take me off for the weighing, measuring, blood pressuring ritual. When we got into the room there was no lock on the door and my sleeve wouldn't roll up enough for the blood pressure cuff, so my top had to be lifted over my head. So, without being asked, the nurse popped out, found another member of staff and asked them to stay outside the door. Just in case I was accidentally exposed. I was very impressed. When I had my bloods taken on tuesday the guy spent quite some time extensively scratching his balls before picking up the torniquet. My dilemma of whether to vomit on him or say something was solved by him putting a glove straight onto the scratching hand, but still. It's not really what you want to see a hand doing before it shoves a needle into your arm.
Measuring and examining over the nurse walked me the few steps back to the waiting room and continued with her work, part of which seemed to be popping back occasionally to check on the mood of the waiting room and keep people updated on the wait. The staff were keeping the waiting room updated after each patient came out, and at one point another nurse offered to make me a cup of tea. If you're a 'not yet disabled' person who's sat in a hospital waiting room and wondered why the occasional patient gets brought a hot drink its because well trained, caring medical staff can spot the patients who aren't able to go off and get their own drinks and often look like they could do with a good meal. Or patients who the staff don't want to let go off alone because it'll make them more poorly. Outpatients is a bit of an odd place to work as a nurse, you get judged by ward nurses as it's perceived as 'easy' but the potential for patients shouting is just as high as on a ward. What outpatients don't tend to get is the experience of much continuing care, so the nurses usually know any of the long term patients. In Dr Freak's clinic, the outpatient nurses usually greet me with a big hug, because of the gap between appointments they get to see patients conditions fluctuate in a way many other staff don't and so delight in any progress made, however minor.
There is a point to all this NHS fluffiness - I wasn't particularly anxious. And a patient who's not anxious doesn't carry that anxiety and negative expectation in through the consultation door with them, for it to then be projected onto a doctor derailing a consultation before it even begins. No doctor, however well trained can deal with decades of anxiety caused by other doctors being projected onto them, particularly when they don't even know the patient is anxious in that way.
So, eventually I saw Dr Breathe. We had a bit of a chat, well, one of us spoke, one croaked but you get the point. Unsurprisingly all my test results are ok. I can tell from the measuring results that Dr Breathe has a slightly relaxed definition of ok which is great, because it means not endlessly investigating things that are miniscule measurements away from the defined 'normal' in someone who's body doesn't do normal. Chest x-ray is clear, breathing tests mostly clear, and bronchoscopy was fine. I'd expected all that as Dr Breathe had been looking for something obvious affecting my ability to breathe and speak such as a stricture. So, that left us back where we started; laryngeal malacia issues caused by hypotonia. In normal person speak that means my larynx is collapsing on itself and my muscle tone is so poor the structures of my throat aren't properly held in place, move about alot and then interfere with my breathing when the soft tissue spasms as a result. Although there is nothing wrong with my lungs per se, the infections are caused by my chest muscles being too weak for me to breathe properly most of the time. When that happens all the natural secretions sit and hang out having germ parties in the bottom of your lungs. Its dangerous because if your muscles are too weak to breathe properly, they're often too weak to sustain coughing properly. The laxity of my tissues and obvious gap when I swallow witnessed by ENT means I'm also prone to aspirating food, liquid or saliva which is the preferred way for bugs to organise illegal raves in your lower lobes.
Some more croaking ensued about what to do when the muscles spasm so badly it cuts off my airway. I explained my clear preference was to hide at home avoiding hospital at all costs. Dr Breathe conceded he didn't have a better plan. There is no medication or surgery which can treat this problem apart from antibiotics for acute infections. The only possible source of help and improvement is specialist Speech and Language Therapy (SALT). I've been on the waiting list for that specialist intervention since Christmas, and without normal speech since October. Had I been in work say as a teacher or call centre worker and had to sign off sick after a week or so of this new problem I would now be six months into my twelve months time limit for contributory ESA, with no real sign of when treatment might be. Dr Breathe did say we could if I wanted try various inhalers but that he didn't think they would make any difference. Neither do I, and as I don't require the only difference they might make, which is the psychological semblence of having some control over the situation we both decided not to bother and Dr Breathe said he'd chase up SALT. Again. SALT was under funded during the New Labour years and not subject to the same kind of targets as being seen by a consultant, so although it's the only potential source of help for me the waiting list is indefinite.
What we did spend some time discussing was the requirements of the DWP to know about this particular problem, in black and white, preferably in triplicate. Not only do the DWP need to know what the problem is, but they also need to know that there is no medicine or surgery which can help it, and that its not going to get better. Hopefully it will improve, but with EDS there isn't an actual 'better' point and improvements tend to fluctuate over time back to not improvements. Dr Breathe is going to explain everything in a letter for my GP and rheumatologist so will include the DWP details and send me a copy to keep it on file for the next time my benefits are looked at.
I said my thanks to Dr Breathe and we parted company. I don't have to go back to see him unless something changes. Despite negative tests and the usual medical bafflement a bendy body causes, at no point did Dr Breathe make me feel disbelieved or negatively judged. He also understood the need to provide information for the DWP in writing. This means that I won't have to use up my time or his contacting him for a letter to provide to the DWP in a year or so's time when I'm no longer his patient and he's forgotten all the details.
Unfortunately just as I've shaken off the respiratory department I've fallen into the clutches of gastro-enterology and I don't think ENT are in much of a hurry to release me either. I'm very relieved Dr Heartsink thought it was a bad idea to stick tubes up and down a bendy person, but I do have to go through a barium meal and ultra-sound. I'm negative about this as I have previously been through the barium meal, ultra sound, head shaking, referral to dietician merry go round and have learnt as much as is possible from the experience about how to manage symptoms and maintain my weight. If it wasn't for the insistence of the DWP on reassessing everyone endlessly I might have had the confidence to have that conversation with my doctors and some of these tests might not have been needed.
What I do have is the confidence of almost a decade as a diagnosed EDS'ers, the knowledge and understanding that brings in terms of symptom management. I've had lengthy periods of time in this type of relapse, where I'm so extensively hypotonic that my body struggles just to perform basic functions. I've previously lost speech for a period of time, although in a very different way to this current problem I have managed to relearn to talk myself without support from SALT. It took several years of drudgery before I could see any realistic improvement last time, and this time round I can take comfort from not having to learn anatomy, physiology, medicine, physiotherapy and speech therapy alone, from scratch myself. This time I knew how to avoid becoming so weak that I had to spend months using a wobble cushion, adding 30 seconds on each day until I could learn to take one step more a day, and cope with the crushing disappointment on the days the steps only went backwards. This time I know I can do this, because last time I did it too. This time I know not to worry about being 'better' or 'fixed' because there is no such thing for people with EDS, but that there are improvements to be made, that eventually with enough time and effort life will get a bit easier. This time I know that just pushing myself harder and harder will never work, and that as much as I don't want to, I have to make this my day to day priority. That's dull and dreary at the best of times, but particularly galling at a time when finally potential opportunities to work may be on the horizon. This time I know that wanting to focus on writing, speaking and campaigning so much that I can't even bear to type out the alternative won't help. That I have to suck it up and spend alot more time looking after myself. That despite all my protestations of campaigning being just from home in my pyjamas so it's fine and not damaging my health, that I can somehow figure out how to work in my jammies from home floating on an oramoprh cloud...well, wanting something to be so does not make it true.
And really, that's why I don't want to have to go through more tests and hospital trips. With a long term degenerative condition such as Ehlers Danlos Syndrome, this is just the card life dealt me. I'd prefer to spend my time playing that card to the best of my ability, not having to go through hoops mostly to satisfy the Department of Work and Pensions insistence that people like me will be repeatedly and regularly reassessed. At the end of each of those hoops I get issued with exactly the same card, and life is just too short to keep going back, fruitlessly asking for another one. I just wish those making welfare policy actually understood that, but they had the good fortune to be dealt a winning hand in the game of life, and that winning hand means you can never understand what it is like to be issued with a losing card.
*In a nice way - it's a little on the tired side, but clean, small, friendly & staffed by very long term volunteers.
Yesterday was a long and busy day. I had three hospital appointments to attend, fortunately all in the same hospital and then an interview for a documentary. Which is probably why I was grey, shaking, whining and sporting a heartrate of 120 whilst sat down by teatime.
I saw the hand physio and specialist hand OT yesterday to get another custom made splint and decide upon the supports we need to order for my wrists. The physio and OT are concerned about 'joint preservation', in layman's terms making sure I don't destroy my joints 50 years before their 'use by date' The NHS spends a fair bit of time and money on this kind of thing, the understanding that money spent early to save more later having worked well in some services. The problem is, whilst the NHS is spending all that money ensuring my condition deteriorates at the slowest possible rate, all our hard work is undone by the lack of support in the social care sector, which means, however hard I or my NHS therapists try, there is only so much we can do to preserve my future function without practical help on a daily basis.
The main appointment was Freak Clinic. Dr FC has been my doctor since just after I was diagnosed with EDS. He's not a rheumatologist, but in the absence of continuity of care in that specialty he has overseen my care, and despite claiming he knows nothing about EDS now has a better understanding of it's impacts and how to deal with it than most rheumatologists do. But he's always had an EDS specialist he could call upon if needed, until now. Since Professor Bird retired there have been rumours of a dedicated EDS clinic in the north, but they still remain rumours. Dr FC feels, quite understandably that as a district general hospital they are out of their depth attempting to manage a patient like me, without an expert they can more readily call upon.
It was a depressing appointment. So depressing I don't want to talk about it, as that'd be acknowledging the reality of what was said. I like it better in Egypt. It's warm and they know how to throw a good revolution so I'm staying there. Writing about it to the entire interwebs however weirdly remains in the Nile territory and so is acceptable.
The words 'there is only one way this can go' were uttered. The look on my face must have prompted the clarification that actually there could be a second way, one where we keep things stable. I like that one better so we're all sticking with that and no comments to the contrary please. I explained that I'm having choking episodes more frequently and that I point blank refused hospital last time because I was scared A&E won't know what to do. An opinion that unfortunately my consultant agreed with, they won't have a clue. I could see how nervous that was making Dr FC and so that made me nervous. My reassurances that if worst came to worst I can hook out my larynx and put it back myself didn't seem to improve the mood much.
So we agreed upon a plan. The reason I haven't been seen on the three monthly review basis my new rheumatologist wanted is because the PCT (Primary Care Trust) have been refusing to fund three monthly reviews, since long before the election. The drive is to push care back on the GP's, regardless of whether the GP's have the expertise to cope, and the logical conclusion of that policy may explain the lack of funding. Maybe. My GP cannot cope with this, nor should he have to. He does a great job of being my GP, keeping track of my general health, prescribing and referring as needed while he oversees the situation. My consultant doesn't feel he or the hospital can or should have to cope alone without specialist input, he is not trying to push me off to be someone else's responsibility, the local hospital will always care for me, but they need back up to do so, even if that backup is only advice at the end of the phone. The plan is that Dr FC will talk to my rheumatologist and they will see if they can find anyone else to advise and work out some sort of plan for A&E to follow should I have to be admitted. They will also investigate whether anything is available for me to use at home, the neighbours most likely to be called upon in a breathing emergency are medical professionals and had enquired about the possibility of using something like IM diazepam to reduce the spasms. The potential problem with that is that it relaxes me so much none of my muscles work and so I stop breathing that way so specialist advice is desperately required.
And now you see why I'm planning on staying in Egypt. It really does look nicer there.
Yesterday I went to see the gastro specialist at the local private hospital. Despite my discomfort at the blatant queue jumping I felt I had no real alternative as the NHS list meant waiting until June to see the same consultant, something the consultant looked depressed and resigned about when he was told. Realistically this is the only one of the gastro consultants at the local hospital with enough experience of complex cases to see me. Whilst I could put up with the stomach symptoms for a few more months, they and the lack of sleep are having a major impact on my overall condition. So, private appointment felt like the only choice, particularly to allow the kind of time needed to go into the complications EDS causes.
The private hospital phoned in the morning to ask if they could bring the time of the appointment forward by 20 minutes. The neighbour who was giving me a 'Big Society' lift managed to rearrange her work schedule and her daughter's college project plans so she could fit in with the last minute change the hospital asked for. We arrived in plenty of time for the appointment but I wasn't seen until after the original appointment time, something which would be expected and understood in a busy NHS clinic where lots of doctors see multiple patients but less so in a private hospital with one consultant running a well spaced list.
Unfortunately the consultant had not received a referral letter from my GP although the practice had promised they would fax it last week. That always creates a difficult situation for a doctor, so wasn't the best start. I explained that I had Ehlers Danlos Syndrome, that I'd had these particular problems before and then we started to go through a routine set of questions about symptoms. I didn't realise until later that the first alarm bell for me was that the consultant didn't ask what type of EDS I have. A question which might seem unimportant but is vital to ensure the patient doesn't have the vascular type of EDS which typically proves fatal in middle age and carries with it far higher risks for any surgical procedure, however minor, than even the increased risks the other types of EDS produce.
The consultant ran through his checklist at a pace which would have alarmed me in an NHS clinic, but infuriated me in the private sector, the whole point of paying a consultation fee being to allow time to go into the much wider range of problems that having an underlying condition creates. There was no insight into the impact on my other symptoms or how I might be managing as a disabled person. No questions about whether I live alone or have support. All of which I have learnt to expect as standard lines of enquiry from NHS doctors.
The most common gastric problem in EDS patients is probably reduced motility due to stretchiness of the tissues. I currently have a grossly distended abdomen which is markedly worse when I'm standing up, in fact after a few moments upright breathing becomes noticeably more difficult. I've had this problem on many occasions in my life and it always fluctuates along with my overall tone. It's been a particular problem over the last year or so as I've had increased spinal instability in the thoracic region meaning my physio is having to manipulate not just my spine on a regular basis but also do lots of work on my diaphragm which bulges down and out as a result of the spinal instability.
Having raced through whether I had reflux, D and/or V, pain, constipation, etc, etc it was onto a quick physical examination with me lying on the examination couch and no comparison made with standing, something that's particularly important to look at as laxity is the primary cause of these problems and that alters depending on posture. I'd mentioned not eating gluten during the questions and that I get a strange, blistering rash on my feet when I do eat wheat or gluten. That was dismissed as dermatitis herpetiformis 'only' occurs on the legs. I have no medical training and am certainly not qualified to say what kind of rash I have, but this was another alarm bell for me. If there's one thing we EDS patients are reliably good at it's having bodies which do things that are far outside the 'only'. Hips or larynx's generally don't dislocate without severe, extreme trauma such as a blow or car crash, except in people with EDS who don't require any actual trauma to dislocate pretty much anything. A doctor unable to cope with the leap in thinking required to understand how a body does things that are supposedly impossible is not a good doctor for EDS patients even though they may be exceptionally skilled in their own particular field.
There was much mention of stress, depression, anxiety, upset and IBS and no mention of the things that are most likely at the route of the problem, laxity and motility. Well, no mention from him. He did know that people with EDS often have problems with the valve at the top of the stomach not closing properly though, but didn't seem to make the leap to the broader understanding that the laxity affects the entire gastric system not just isolated valves.
His initial opinion was that it could be gall bladder, inflammation, or IBS but that bloods, ultrasound and cameras up and down would be needed. All sensible investigations to make, but in an EDS patient who's as lax as I am reporting that this is a lifelong problem it's approaching the problem from the wrong angle. I gave the name of the specialist gastroenterology Professor at Barts who sees lots of EDS patients but that wasn't noted down. The consultant asked if I had a specialist for my EDS and I explained that Professor Bird had recently retired, and that I was now being seen by a local rheumatologist, but that he had only had the chance to meet me once. I thought it best to omit the local rheumy had looked like a rabbit in the headlights his 'oh crap I've never seen a patient like this' fear was so obvious. The consultant insisted he'd be able to get everything he needs to know from my local rheumatologist which is again worrying as the local rheumatologist made it very clear that a patient with my severity of EDS is far outside his realm of experience.
And that leaves me with a problem. I actually have complete faith in my local rheumatologist; his lack of knowledge is not an issue as he's the type of doctor to enjoy learning and capable of rapidly thinking outside the box. This particular gastric consultant is considered to be expert in his field. I have no reason to doubt that, he saved the life of a friend many years ago, and were I a 'normal' person I would have complete trust in this consultant. However, what I doubt is his understanding of the potential for an EDS body to behave in ways supposedly contrary to medical science and adapt rapidly and accordingly. In the past I've been on the receiving end of too much failed surgery compounded by too much surgical ego* which first blames previous doctors, then equipment, then the patient before labelling them as 'mad' whilst never considering the problem might be with the reasons or methods for performing the surgery and I'm not willing to ever be placed in that position again.
The biggest problem caused by going without a correct diagnosis and becoming a 'heartsink' patient is that it destroys the ability of the patient to trust their own instincts. Medical students are still taught that the patient will tell them the diagnosis if they ask the right questions and listen well, for good reason, the clues to what the cause of a problem is are almost always there in the patient's answers. We all know the difference between when we are really unwell and when it's just 'manflu' as it's something our bodies tell us, but years of being told there is nothing wrong regardless of what symptoms are reported undermines that natural instinct and creates a confusing situation where the patient doesn't trust what their body is telling them or what the doctor is saying so loses the ability to report the correct symptoms in an appropriate manner.This leads to a vicious circle where it becomes far more difficult for the doctor to sift through the reported symptoms to prioritise as the patient doesn't know what's normal or not and leads to much frustration and difficulty for both patient and doctor.
I've been diagnosed long enough now to start having the confidence to trust my own instincts again, and right now they are screaming at me that however excellent this particular consultant is, he is not the right kind of deductive thinker to treat someone who's body works contrary to the norms. I need to be treated by someone like Dr Freak Clinic who says he throws away all his taught medical knowledge and uses logic to work out how a body which is built differently to 'normal' might be going right or wrong.
Which basically means I'm fucked. Going privately again is out of the question, at least for now. I still had a little extra DLA money from the months I didn't have to pay gas bills and that will be used to pay for this consultation. If Professor Bird were still working within the NHS it would be relatively straightforward to get the local consultants to write or phone him for advice, but that is much more difficult now he has retired and not been replaced at Chapel Allerton. Fortunately a wise friend has suggested I could ask my GP to write to the expert Professor based at Bart's which is excellent advice as the local consultant is definitely not the type to accept a high level of expert knowledge from a patient but will hopefully be more open to that insight from a fellow professional.
*to be fair to the surgeon in question, he was the only doctor involved in my care to give me any kind of apology after I was diagnosed with EDS and would admit in private if not public that he let his ego get in the way of the patient's best interests. He has also drastically altered his surgical practices and particularly eligibility for surgery based on the mistakes made in my care and now does 95% less of that type of surgical treatment. A result which is far more important to me than any compensation payment could ever be.
I went to see my GP on Friday. Lovely GP has gone on her maternity leave. This could get confusing because my GP is lovely too and that's altogether too many lovelies. It's his practice though, so Top Dog GP it is. The name confusion is apt as I had to go and see Top Dog GP to sort out the inevitable hospital appointment inspired confusion. This lot of confusion is particularly complicated as it's arising from at least three different hospitals.
Top Dog GP started laughing as soon as I mentioned the hospital inspired confusion so I knew he'd had at least one letter. When I said I'd seen the registrar rather than consultant at Freak Clinic he said that explained it all and suggested it might perhaps not be the service to medical education I'd thought I was offering as the registrar won't have slept for at least 5 nights due to his 'OMG complicated patient' induced terror. I'm just counting myself lucky for only having lost an armful of blood in the name of medical education. Top Dog GP is yet to have the latest missive from Leeds but that should keep him giggling for at least half a day...the bendy specialist is known for his unique style of letter writing.
We went over the whole Oxycontin thing and Top Dog GP also expressed concerns about the long term viability of my 'No Oxycontin' plan. He's right, as plans go it's not up there with the best, but doctors urging pain relief upon me is such a novel concept after all those years not being diagnosed that it perhaps doesn't register with me quite as it should. Still, I got the prescription I needed to continue with the 'No Oxycontin' insanity. I'd originally declined the strongest dose codeine and paracetamol because I wanted to see if the lower dose of 15/500 mg was effective enough. It sort of was but has been out of stock for weeks now so 30/500 mg it will have to be.
That, and a depressing conversation about the costs 'elf n safety have added to the new practice building was pretty much that. £220 for a sink that's not allowed to have a plug in it because of some mysterious health and safety, no plugs in consulting rooms concept. The ConDem government could've had that £220 to help with the budget deficit if health and safety let the NHS order from B&Q like everyone else.
A few weeks ago I initiated divorce proceedings against my hips. Fortunately the orthopeadic version of Relate, the physio terrorists, have been doing their job and both parties are at least willing to enter discussions. A unifying subject is disgust in being given the medical kind of corset instead of the pretty kind.
Disgusting or not the corset thing is also doing it's job and attending all death walks. Even if it does mean multiple dislocations putting the stupid thing on. I did think it might be a sign not to go death walking when I heard the unmistakable 'pop, pop, pop' as multiple joints hurtle in and out of their sockets but then got really distracted by my urgent need for chewing gum, and then I was moving anyway and had to stick to the rule that it is only acceptable to be so stoned mid afternoon if it's in aid of something unpleasant. So off I went.
It was indeed unpleasant, but at least it didn't rain. Pirouetting whilst wildly windmilling your arms is somehow even less cool in the rain, if it is even possible to be less cool than spinning uncontrollably on the spot in a public place.
It's working though. I'm not telling my joints it is as they'll immediately go on a strike so stubborn even BA wouldn't know how to break it, but it is. All that walking face first into doorframes and excruciating pain is worth it for increased function, even if my muscles have yet to get the message. I knew using Royal Mail to send it was a mistake...
For some reason all my hospital appointments appear like a rash across the same part of the calendar every year, so yesterday saw me head off to Freak Clinic and later to my GP. I can't quite work out where the year since last appointment has gone, but fortunately this time the parking situation was slightly better and I didn't need to accost any builders to help me up stairs. Probably why my blood pressure was considerably more healthy this time.
As I'd seen the consultant last year I saw the registrar this time. As Ehlers Danlos Syndrome is a rare condition I believe those of us with it have a responsibility to allow medical professionals to learn from us. It may not always be what is in our best interests as individuals but it is in our overall best interests. Although it is too late to rectify the physical and psychological damage done to those of us only diagnosed very late in life, it's not too late to stop that happening to more young people. The registrar was lovely and spoke English to a far higher standard than many of our native speakers, but he also shared the kind of indecipherable accent common to many of our native speakers so I found it rather difficult to understand him. The harder my body is having to work to get me around the harder I find it to take in information, my brain is too busy concentrating on sit up, move forwards, stay upright, breathe dammit, breathe, to focus on anything more complex. The first thing to go tends to be my ability to comprehend so add in a strong accent and all bets are off. I'm not sure if the overly energetic concentration skills are the reason I've developed another ptosis but the registrar was the second person to point it out, and the second to notice I can't tell my right from left. Perhaps that's why I had to donate another armful of blood, but that thyroid function test several people suggested a few months ago is finally being done. I'm sure this is all just part of the relapsing remitting part of EDS though.
Part consolation prize for having reached the weight of 50kgs, heavier than I've ever been, and part only thing I could think of to stop the fatigued muscle shaking I went to McDonalds on the way home. The real prize was the toy lightsaber I got in my Happy Meal. All kinds of awesome. Who says women aren't easily pleased? Well, this one anyway.
Then it was home for a few hours before heading off to see lovely GP. I know. You're so jealous of the excitement of my life you just can't contain your envy. I get that way myself. If it helps I became near homicidal when one of my neighbours woke me from a much needed nap about 30 seconds after I'd fallen asleep which meant that was the end of that. I could've cried.
Usually I'm a bit more emotionally robust* but withdrawal is really dragging me down at the moment. I spend lots of time fantasising about possible ways of getting inside my skin to scratch the terrible Oxycontin induced pain in the fascia. At least I think it's Oxycontin induced...it's quite different from the kind of pain produced by multiple spinal and rib subluxations which for some reason I'm having as soon as I reduce the last set at the moment. Really envious now aren't you!
The consulting rooms at the new GP practice are upstairs, accessed by a flight of stairs for most and a supposedly DDA compliant lift for others. As I went towards the lift one of the other patients asked why I was using it as I looked so fit. I think she thought I didn't know where the stairs were as she was mortified when she realised I wasn't able to use the stairs. It always amuses me how instinctively people equate slim with fit. Lovely GP is fortunately more switched on about my abilities as she came out of her consulting room to find me, knowing full well the delay meant I would be stuck in the lift. I was...sort of halfway up from the waiting room, feeling a right muppet as everyone on the ground floor looked at my legs through the glass door and lovely GP tried to figure out the problem from the first floor. The problem was that my fingers just aren't strong enough to keep the lift button fully depressed and it must have some safety shut off feature if the button is pressed intermittently. Really annoyingly it's impossible to press the button with the side or heel of your hand as there's a 'safety' rail in the way so I confidently predict more 'stuck in the lift' moments in my future.
I needed to get some 5mg tablets of Oxynorm prescribed ready to take the next step down in the withdrawal process and some Co-codamol, a put on prescription as it's expensive to buy on a frequent basis and only the lowest dosage of codeine is available over the counter. We had a bit of a chat about whether there are any medications which can help ameliorate the side effects of withdrawal but other than diazepam there aren't. Lovely GP is quite happy for me to use diazepam for a couple of days each time I drop the dosage but agrees it's less than ideal considering it makes me even more floppy and carries such a potential for dependancy itself. Fortunately a fellow blogger explained to me how to make tea from cannabis leaves, which is excellent both for improving circulation and sleep. It's also a more socially acceptable way of consuming cannabis than smoking a pipe in the middle of the day, and happily cheap as most people consider the leaves of the plant useless. The only downside is that you need to find someone who is growing their own plants, but if as I have, you can do that then they'll be only too happy to donate the leaves as they aren't a part of the plant which can be smoked. That, and be prepared to fall asleep for several hours, which with any luck is what I'll be doing before too long...
*I did only say a bit.
Last week saw my six monthly check up at Freak Clinic. Much is being said in the medical blogosphere about the state of the NHS, but seemingly little of that is originating from patients. Proper patients I mean, not the kind who are paid to write by the mainstream media about how GP's are not needed in the age of Dr Google. That's probably because proper patients know far too much about the real problems facing the NHS, so like the medical bloggers no-one wants to listen to us.
In common with most suburban areas public transport is not much of a feature in my part of the world. Even were it accessible to me, it is cheaper to drive. Easier too, apart from the parking. There is a nice park and ride service provided for free by the hospital. It's a great idea, except it's not exactly accessible either, and particularly not at the moment as the drop down step to alight the bus is broken*. The fact that you can't get a bus back to the park part after about 4.30pm is also a bit of a problem. It's close enough to walk, but only if you're fit and able. Funny thing about hospitals though, is that they are mostly needed by those not fit or able. So, driving is the only realistic option. Like many hospitals there is a charge for the car park. It's £2, which for a one off visit like I make every few months seems quite reasonable. It's not if you have to go every day, or twice a day like many people do, then it adds up PDQ. The hospital must have money to burn though as despite the additional revenue from all those £2 either the machines are broken or the car park staff are too busy doubling up as porters and security guards for the car park to be manned. No attendants+no barrier=no charge. I often wonder how much the barrier cost to install, and how many parking spaces were taken away to make room for it.
There are some disabled bays right outside the main entrance which are exempt from charging, they are always full though and people queue waiting for one of the consultantssomeone to leave. This is the same hospital which saw fit to block off all the disabled bays bar one outside it's physio department for months last year when it parked a portable something or other there. There were numerous complaints but the Trust insisted they'd made provision for disabled people to park elsewhere. As they forgot, neglecteddidn't specify where elsewhere was it's safe to assume elsewhere didn't know either. It's also safe to assume that lack of parking may or may not have had a detrimental effect upon incapacitated patient's ability to attend their vital rehabilitative treatment and that inability to attend may or may not have had a beneficial effect upon the hospital's physiotherapy budget.
I spent 30+minutes driving round and round the car park trying to find a space, initially one that was within my walking distance, then just a space. Eventually I got lucky and found a disabled bay outside the shiny new fracture clinic. Which would've been fantastic if fracture clinic was anywhere near the main outpatients entrance and there wasn't a big flight of concrete steps in between the two.
I parked up, already late for my appointment and gritted my teeth for the walk. Once I got to the concrete staircase I spotted some nice young builder men with shiny yellow hats wandering about. I didn't ask but I'm fairly sure the nice young builder man I co-opted, forced, gave no other option to asked politely to help me up the stairs was called Bob. Far better looking though. Although I asked the nurse specialist getting into the lift next to the stairs if the lift went to the next floor, she told me it was going nowhere near main outpatients and closed the doors. Bob and I reached the top of the flight of stairs just as she got out next to us, grinned and said never mind. A sad example of dumbing down as a doctor would've been taking my blood pressure and calling for assistance with one glance.**
I still had another couple of hundred meters to trek to get to outpatients, and as I was so late I was trying to hurry. Big mistake.
By the time I actually arrived at Freak Clinic I was struggling to control my breathing and not far off greeting the floor face first. The outpatient nurses are lovely and know the regular attenders so one went to get me a drink of water while I tried to recover. I was shaking too much to get up and be weighed so the nurses left me to rest for 10 minutes or so before attempting to take my blood pressure. They were most concerned that despite the rest it hadn't gone back to normal but I'm used to the kind of autonomic nervous system dysfunction which can go hand in hand with EDS and huge swings in my blood pressure or pulse rate don't cause alarm unless it doesn't settle with rest. The nurse asked whether I'd prefer to see the consultant or registrar, and as I said that I thought the registrar would need to consult with the consultant I was taken in to see him after a few more minutes rest.
Unfortunately I was still shaking a great deal and not recovering too well. Dr FC asked what had caused the shaking but I was too fatigued to be able to give him a decent explanation. Particularly in the more severe cases of EDS, the high levels of laxity mean we tire very easily, because our muscles are weak and have to work incredibly hard just to carry out basic functions (digestion, breathing etc) they can respond poorly to exertion. In my case that means I may mentally be able to push myself hard enough to temporarily get through a situation but there will be physical consequences which may be quite severe. Once I've gone past the point my body can tolerate my muscles fatigue so much that I just shake and swing between shivering and sweating while I struggle to get control of my breathing.
Dr FC was concerned, but knowing me well he knew that autonomic nervous system problems are common in EDS. He wanted me to have some caffeine and sugar and so asked one of the nurses to make a very milky, very sweet coffee. As I was still shaking so badly when it arrived Dr FC very firmly told me there was no way I was getting my hands on the cup and held it up for me to drink from. I couldn't help but think of the irony of a highly paid NHS consultant providing the kind of care social services will not fund, or of the difference proper social care and funding would make to the NHS. Bizarrely for the public sector no-one had to fill in a form requesting the coffee, sugar, milk and health and safety assessment prior to application.
The government are trying very hard to persuade the public of the importance of 24/7 access to health care whilst keeping very quiet about the standard of that health care. One of their biggest plansmistakes is to create polyclinics and break the traditional doctor patient relationship. What they fail to realise is that not only are polyclinics completely surplus to requirements, but that they will also cost more money than the traditional doctor/patient model of health care. The Jobbing Doctor's posts on this subject are vital reading, but for anyone who's not convinced the real reason we must protect the doctor/patient relationship is for our own sakes.
The scenario I've described above has happened on many occasions and will continue to happen. Prior to my diagnosis of EDS I was either given a few sharp words about attention seeking or given further investigations. Expensive investigations, MRI scans for example. Fit, healthy young women are not supposed to be unwell in that manner for no good reason so tests are done, consultants consulted and referrals made. It all adds up very quickly in economic and personal terms. I expect it would have been what happened had Dr FC not known me well enough to realise this was a part of my overall condition. Imagine that multiplied by millions and millions. Now remove that doctor/patient relationship. Replace it with a polyclinic, and a health care professional who's never met you before and doesn't have the depth of education or training to attempt such difficult, potentially negligent, career ending, life threatening decisions. They insist on referring you for all those tests. Immediately. Just to be safe. It gets very expensive, very, very quickly and has no real benefit to anyone. Except those who stand to make financial gain from such situations, and they do not include the likes of you or me.
*A fact I was informed of by the nice volunteer man sent to push me back to my car and prevent me attempting to climb any more mountainsflights of stairs.
**It's called taking the piss to make your point people!
Life is a bit hectic at the moment, and yesterday was no exception. Freak clinic day. I can't believe it's been a year! Actually, it hasn't, I went to freak clinic six months ago but I don't think I blogged about it.
Freak clinic went well. Dr FC said how pleased he was with my mobility and commented on how much physio I must have been doing to have gained this kind of control. Especially as he feels (as do I) that it is highly unlikely I'll ever be able to keep my hips from dislocating with each step. It works a bit like a sublux or partial dislocation as I weight bear, in that my femur returns to the socket on it's own, but is a more full dislocation in the distance the femur pulls out of the socket each step. With the strange sensations I've been experiencing recently along with some increase in palpitations Dr FC wants me to have a 24hr ECG, but said he thinks I am right in my theory that the sensations are caused by spinal instability and the palpitations etc I'm experiencing are because the heart is a muscle and affected by the defect in my collagen in the same way my other muscles are.
Dr FC also wanted to run some blood tests. There is a very good reason that the medical profession don't like the government plans for things like polyclinics, and yesterday's appointment was a perfect example of why continuity of care is so important in medicine, and in ways that politicians just don't seem able to understand. I first met Dr FC when I was newly diagnosed with Ehlers Danlos Syndrome. Since then he has been able to get an overview of my changing condition, been able to build a picture of how much my body shape has altered, the symptoms which accompany it, and because he knows me, he also knows I can and do dislocate my thyroid gland regularly. That's the kind of insight it's impossible to get when you only meet a patient once, and the kind which gives doctors the ability to judge when further tests are or are not needed. It's what will be completely destroyed if polyclinics are pushed for, and ultimately I believe will only cost more taxpayers money as patients will return for multiple visits with different 'health care professionals' whilst they try to get to the bottom of a clinical picture of which no-one is able to take overall charge.
I went to get blood drawn after my appointment. Now, every woman likes to be given compliments. It's like, in our genes or something. Next to the 'light blue touch paper and stand well back' strand of DNA I should think. There's a time and a place though. So to the phlebotomist who told me he'd never forget a face like mine, then looked directly at my breasts, laughed and said he'd never forget parts which looked like that either I'd like to say whilst it's lovely to be appreciated, I'd prefer you didn't do so whilst your colleague is sticking a needle into my arm. Thanks all the same.
Once I was home the BYM (long overdue for a name change so from this point on known as Roland) popped round for a cuppa. He was in a car accident a few days ago where someone skipped a red light and smashed into the side of him. He's very lucky as the car is a write off, and he went to A&E on a spinal board, but fortunately is just very stiff and sore now with nothing broken. As he left, Jenn turned up and we sat and chatted for a couple of hours.
By the time Jenn had gone and I'd managed to get nothing,a few things nothing done it was dinner time and although I had enough spoons to eat, I didn't have enough to sort anything out for myself. So, Fruitrock and I went to a local pub which does buy one get one free meals. Pretty much a heart attack on a plate, but still, cheap and put in front of you. I think we managed to clear the area around us with our discussions about whether it would be better to become a dominatrix or sell used underwear online to make money. Our conclusion so far is that the used panties idea, whilst a good one is flawed by the actually having to wear them part. Don't you just love the recession?
We then returned to mine to ask google whether women really poo themselves in childbirth, discuss my teenaged theory that having sex was no different from using a tampon and the 'slug' Fruitrock found on her leg and showed her mother in utter horror. During that conversation the knowledge that there was no slug seemed to distress Fruitrock greatly. Her slug theory being way better than my tampon sex one....vaginal mucus anyone?!
I go to freak clinic every six months. Ehlers Danlos falls within the remit of rheumatology but there are only two centres in the whole of the UK where they specialise in us bendy bod's with one or two other consultants floating around who specialise in EDS because of an interest in genetics or even dermatology. For an accurate diagnosis people have to go to either Leeds or London, where they are in favour of the day to day management being done locally which sadly all too often causes major problems with all sorts of things from primary care trust funding to the ego of the local rheumatologist.
I do have a local rheumatologist, who on the one occasion I met him seemed quite nice but has the most horrendous work load and as Dr Grumble has just described so well, those pesky government targets only apply to new patients not those of us who need to be seen on a regular basis. No target to be met means waiting lists that can be endless. Situation summed up by this exchange yesterday
Dr FC : "Are you still seeing Dr X"
Bendy Girl : " who's Dr X? Oh no, I don't think so, but maybe in time, is that my rheumatologist, ooh I met him once?"
So instead, I have freak clinic. A consultant who wears all sorts of hats. Maybe years ago he would've been called a general physician, but these days he has to be called all sorts of other fancy things instead, though admittedly freak doctor is probably not top of his CV.
Instead of seeing this as a bad thing like so many I know do, as not being able to see a rheumatologist locally, I see freak clinic as a good thing. Dr FC was the first consultant I saw after I was diagnosed. I was scared and scarred from so many previous negative interactions with doctors. He treated me with the respect and dignity I'd never known before from a doctor. He was willing to help me when no-one else would. He was willing to learn about a condition he'd never come across before, and had only a vague idea about from text books. Once he started learning about that condition through my body he was willing as he put it "to throw everything he'd learnt in medical school out of the window when I came into the room". The most amazing thing about Dr FC is that he believes whatever my body presents to him. However bizarre that may seem. Understands that it might be pretty difficult for non-bendy people to say dislocate a rib by sneezing, but throw that collagen defect that causes EDS into the mix and anything's possible.
So yesterday was a big day at freak clinic. Smiles all round. When Dr FC started to see me just after I was diagnosed I was sporting the dangerously skeletal look, with slurred speech and a drooped face for good measure. Unable to support myself. (on my feet, not financially!) Now I'm at a healthy weight. With very noticeable boobs. Not a hint of slurred speech and only a droopy eye when I'm so tired I shouldn't be awake anyway. Walking well for someone on dislocating hips.
On the way in the lovely nurse who always tells me how glamorous I look even when I looked like Nicole Ritchie on a fat day told me I looked glamorous and voluptuous. Dr FC just wanted to know how I'd done it. I said it was as simple as it was impossibly difficult. I had a choice. I could either get really fat and end up in a wheelchair full time just getting more ill and more fat, or I could do what I'd done. Dr FC tried to control his laughter. The nurse in the corner didn't bother. Dr FC wanted to know how I'd done it though, and as everyone in the room was laughing so much by that point all I could really say was that I'd done it because I'd seen it as having no choice, the alternative was so unacceptable to me.
How was that I started by sitting on a wobble cushion for just 30 seconds a day, at first that was all I could manage. I built it up really slowly. After all, it wasn't like I had anything better to do. That was the bit that made it sound simple. It wasn't. Every second was a fight against excruciating pain and a body that wanted to do anything but what I wanted it to do. No physiotherapy. No occupational therapy. No pain clinic, they wouldn't take me on when I was at my worst, and when they would I was managing so well they got in a strop, not being keen on patients who've already done everything they would suggest and more. Dr FC knows that. He was there through all this. Just him, my GP, and me. With the true EDS specialist at the end of a phone if we needed him and a 10 minute appointment once a year. They've had their funding cut too. Being rheumatologists. Besides, there's plenty more people out there needing to be diagnosed.
Thing is, I might have done all this myself, but I'm pretty sure I couldn't have done it without the support I've had from Dr FC and my GP, and I know they've been scared. They did their best to hide that fear from me, but I always knew. It's got to be frightening being the person in overall charge of a patient with a condition you know nothing about, unable to get that patient any of the help they need, while those who control that help the social workers, the occupational therapists, at times the physiotherapists turn their backs on you and ignore the situation.
So I suppose that makes it even more gratifying when, despite everything that person gets so much better. Yes, I should have had access to rheumatology locally, at minimum every six months. I still should have that, but I realise that I can't see my rheumatologist because he's too busy trying to meet government imposed targets that tell him to see all new patients like yesterday while the fuckwits in the Dept of Health fail to realise these new patients are mainly grossly overweight and moaning that their back/knees hurt, instead of those of us who actually have complex conditions that need medical management rather than someone to say 'no shit. lose half your bodyweight then you might find your knees hurt less'. I can do that without going to medical school or needing a six figure salary, but then the department of health never like to include real patients in their stupid surveys.
I made the best of things with the help of Dr FC, I couldn't have done it without his support and the support of my GP. My GP couldn't have supported me without Dr FC and neither of them would have felt confident without the specialist to call upon, but we've all done it in spite of, not with the help of. My big concern is that with the changes going on in the health service there won't be a Dr FC for the next person who needs him, and that would be even more tragic than the lack of rheumatologists.
So in answer to your question Dr FC, I'm not really sure how I've done all this, but I do know I couldn't have done it without you and I thank you for that. You are part of my how.
And yes, after everything I think you should say sod the GMC and go ahead, write "patient now has big boobs" in the notes. We've all worked damn hard for me to be here with any boobs at all.
...already, it is isn't it? As predicted, yesterday was a long day (for me!) but not as people had thought in the comments because I would have to wait ages to see my consultant.
I'm going to write up the appointment separately when I'm less tired, but in contrast to all the crap that gets spouted about the NHS, I have nothing but good to say about this consultant and his clinic. I didn't even take a book or magazine to read because I know its so well organised that by the time I've given my name, been weighed and had my blood pressure taken, I won't have had time to drink much of the cup of tea I buy on the way in to the appointment before I get called in to see the consultant himself. On the occasions I've seen his registrars they've been superb too. This time was no different.
I was still knackered though, I had to get something done about my hip afterwards, it was stuck in a funny position after I'd fully dislocated it a couple of times on monday. Toes and I went and pootled round some cheapy shops ending up with me collapsed in a heap on the pavement outside the butchers. Toes made me laugh so much I dislocated my hips and flopped down, starting the whole laugh at each other til we couldn't stop cycle off again.
Throw in a hair cut, a trip to the vet and a rather heated committee meeting this morning and that's the week so far.
Hospital appointment this morning at what I call freak clinic, my consultant tries not to laugh and be strict whilst attempting to ban me calling it that. He fails and cracks up every time.
Its going to be a long day, wish me luck!
