Making an Effort

All week I had rested, most of it under duress thanks to the catheter but our annual pilgrimage to the NEC for the Autosport Show was here and Andrew really wanted me to attend. All week I was saying that I shouldn’t go and it would be the safest thing to stay at home, not only for me but for Andrew and his back, for him to push me round the NEC would probably reverse all the healing that had taken place over the previous couple of weeks.

The day before Andrew announced that the best decision would be for me to hire a electric scooter and that way he wouldn’t need to push me especially as I can’t self propel at the moment, problem solved. Now booking wasn’t a major issue, the cost was really cheap, only fifteen pounds for the whole day BUT I was concerned because I have never ridden one before and I was mindful that there were lots of expensive cars all over the place now this could go very wrong. I don’t “love” my chair but it is MY chair, I’m comfortable in it and it is an extension of me, so I wasn’t feeling comfortable about using this piece of equipment. Plus when someone decided to “take the mick” the day before I just went into meltdown, it wasn’t what I wanted. Again I questioned actually going, maybe I should stay at home and let Andrew have a weekend away, I was the dead weight here and it made me incredibly sad. I was talked into going and after a very quiet journey up the M40 we made it to the NEC, I was put into the scooter and nervously started making my way around the halls. It was the worst couple of hours of my life in that thing. I couldn’t manoeuvre it, get close to anything, I ran people over, kids jumped out and I struggled to stop jarring my back and hips I was in agony, Andrew could see me getting more and more stressed, it was just too busy for a vehicle of that size. The nail in the coffin was at the Williams stand I couldn’t get close enough to the barrier to get some cards that they were handing out, I was trying to catch the man’s eye but was failing, in the end Andrew came over and had to help me. I was near tears, as we walked away I just said ” I want MY chair back please” and with that I went back into my chair, I was so relieved.

The rest of the day I was fine, one of our very good friends helped me, to save Andrew’s back and I couldn’t have done it without him. With my chair i got onto stands, I could get up close to the cars and look at things I wanted to buy, I could turn round with no effort and most of all I was comfortable, I was in MY chair. Never again will I put myself through something where I make myself feel awkward, it is bad enough being disabled, let alone being ridiculed and that was how I felt on Saturday.

After the show we went to our hotel and the whole thing had totally worn me out, I laid down and fell asleep for over an hour, I was just stressed out and exhausted, I did make the effort to go out for dinner but it wasn’t quite the crazy night on the town that everyone was planning. Being a zebra isn’t quite all it is cracked up to be, let alone one with wheels.

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The Day “This Morning” Got it Wrong

Now I don’t tune in to daytime TV, I find it inane and mind numbing, so please don’t tell Holly and Phil.  So you can imagine my concern when Twitter and Facebook started going berserk because of a phone in that seemed to have gone awry because of a comment that had been made by Dr Dawn Harper in relation to “sick notes” for children.   I was so concerned with the chinese whispers that may be happening I spent forever locating the clip and listened intently to what had happened, to make sure I got the right end of the stick.

A mother called Sarah had asked about her son struggling with pain and explained that he had Hypermobility, she didn’t say clearly during the call whether he had Hypermobility Syndrome or was just Hypermobile, she did say he suffered with pain and especially when the weather was cold.  Now all of this I can empathise with, as a child I struggled with PE, I used to ask my parents if I could not do lessons because of the pain, obviously not knowing I was hypermobile!  As an adult the cold, the pain and if I have had no sleep can just trigger flares so this parent had called for advice and support, not a dumbing down by the Doctor.

The so called expert, then decided to suggest that Hypermobility or to simplify it for the audience “double-jointedness” was nothing to be concerned about and basically if he could do PE he should do PE.  You could see Phil feeling awkward about her response, he mentioned disability but she pushed on about gymnastics and with a gung-ho approach basically managed to upset the whole Ehlers-Danlos community within her 90 second response.

I took to Twitter and Facebook and joined the fight because we need to stand up for what is right, yes she is slightly correct, if we can pace we do need to exercise, but the right sort of excercie, not cross country in the freezing rain, or gymnastics (that has now been proven as bad for us bendies) but she missed the point this little boy was struggling with pain and the cold so how could he do the PE classes outside in the winter, should he not be excused with his medical condition/disability?  The complaints rose on both Social Media platforms but no response were received from either the show or the Doctor, until earlier today when suddenly a statement came from the show first.  A small victory to begin with but was it what we wanted?  Not really we wanted awareness, we wanted a slot on the show to explain about EDS, to make our invisible, visible, why is that not possible?

Then this afternoon a written apology from Dr Dawn Harper herself, who claims she has Hypermobility, now call me cynical but for a woman who is meant to dislocate and experience the pain that we all suffer, would you not expect some level of understanding and camaraderie?  Well I would?

So for now I assume This Morning think, that is all done, dusted and put to bed, but I am not so sure, I think they have upset the wrong set of people, zebra’s are of strong character, we have to go through so much, we fight a good fight most days, so please Holly, Phil and This Morning, help us raise awareness and make our invisible visible.

Medical Contradictions

I was chatting to one of my online buddies and I explained that I’ve got to the stage where I’m almost ready to self manage my condition.  When she questioned my reasoning I explained that I was sick to death of the constant contradictions I have been receiving of late from a lot of the medical profession, every time I see a different Doctor they change the decision or even tried  to change the diagnosis from a previous specialist.  To be honest I’m sick of it!!

When I was diagnosed with Ehlers-Danlos Syndrome, my doctor at the time gave me some X-rays of both my hands and feet and then wrote to me with a diagnosis of “marked osteopenia”, I then saw a doctor a few weeks ago for pain management who poo pooed that as rubbish.  Who was he to question the EDS specialist at the Stanmore and say her diagnosis was wrong?  It left me scratching my head, what was going on did I have it or didn’t I?

Then there is the gastroparesis diagnosis, I’ve had one doctor say yes I do have it and one say no I don’t!!  I do have slow motility, I can wake up the next day and still feel full up from a previous day’s meals.  I have lost eight stone in weight without even trying, I have the constant battle with fluctuating bowel problems and then I go for the most horrific test which show there are issues “down below” and suddenly I have another Doctor say it’s all down to my pain meds, which I actually don’t take, however he has written a letter saying I am dependant on pain medication.  These doctors just don’t listen!!  It’s just too frustrating for words.

Another prime example my shoulder, when I hurt it last June I went to A&E and was diagnosed with a rotator cuff injury, I was told how to care for the issue and did my best, a couple of weeks later we headed back to the hospital and it had changed to bursitis.  OK that is just the next step so no major problem but the arm was slung and I had to take it easier.  Fast forward to my physio sessions and suddenly the diagnosis was changed I had a frozen shoulder, the Orthopeadic GP looked he was sure it was frozen and I was left with a three year plan of pain and management.  I headed to the Stanmore to see my consultant for a routine follow up for my EDS and she wanted to get it checked “just in case” she wasn’t convinced and I am glad she did, it was not a frozen shoulder it was still the original rotator cuff injury that had been left for too long and now needed surgery.  So that now shows that another set of contradictions had caused a delay in treating my arm and will now cause me to have an operation, not happy with that outcome at all!

Then the bladder issues, a year ago I was scanned, I had explained I thought I had a problem and felt it needed investigating.  They all shook their heads and said no it was all normal, despite a slight retention of 30mls, a year later suddenly I go into full retention and it’s all my fault!!  The reasons they were pinning it down to were ridiculous and not one doctor understood that EDS patients can experience this condition due to the lack of collagen in our systems, I felt I was teaching them in A&E on Saturday night.

I see my GP regularly and feel my condition is degenerating but he assures me I’m doing ok and just keeps passing out pain pills and sends me on my way, how is this any good to me?  I hate popping pills and all I get it nagged at by every other consultant if I take the medication.

My OT at the Stanmore is hopeless, she doesn’t know whether she is coming or going, it took a face to face appointment and three phone calls to complete one form to try and get me onto the inpatient rehabilitation program, that I can’t be put on because of my damaged shoulder, if only she had asked my consultant first!

Why doesn’t anyone “get” Ehlers-Danlos?  I’m sick to death of going to A&E and spelling it to the triage nurse, I’m sick of telling the doctors I’m collagen defficient and this is my “normal” why don’t they know.  They are the doctors not me!!

I don’t know what to do?  I am totally reliant on the NHS and their care but they are letting me down so badly at the moment I feel I am floundering.  If there was a magic pill I would take it, or a simple way out I would  jump at it, but for now I’m stuck on this tricky path of medical contradictions and difficult doctors.

OT Home Assessment 

The home assessment has been months in the running, sadly this is due to budget cuts and very long waiting lists.  So once the referral is completed it is just a case of sitting and waiting for something to happen, it could be a case of thinking I had been forgotten about but eventually a letter arrived and just before Christmas a lovely lady from the Council attended our home address and worked out how I was coping (or not).  She then worked out how changes could be made to make my life easier, and to relieve the burden from Andrew, so he could head to work and I would be able to just look after myself.

It wasn’t one of my best days so she assessed me back to front, starting from the bedroom and working our way downstairs.  She could see all the small adaptations that had been made so far, hand rails up the stairs, bed guards etc but my EDS seems to have outgrown some of these and now it’s time to think ahead. 

She asked about how I managed bathing and we explained that the bath lift that had been provided was not a great use mainly due to my severe weight loss.  The bath needed to be filled right to the brim just so I could even touch the water now so showering was the only option, she explained that changing the room to a wet room would be the way forward.  We headed downstairs and once I had made it down, bottomshuffling again, she felt that now the only options would be a stair lift.  I was mortified, at 47 I didn’t want one, couldn’t a downstairs toilet be added?  She explained that the costs would be too high so a lift would be the cheapest option for the council.  I reeled at this news, it was all down to money!! The only other thing would be to widen all the doors downstairs so I can use my wheelchair in the house on my really bad days, that would be the most positive thing that came out of the meeting if I’m honest.

Firstly they will rip out our bath for me but what about Andrew?  After a long day at work if he wants a soak he can’t have one, yes this is about my independance but there are two people in this marriage and why is only one person being considered?  So whilst I would love a wet room to make my life easier, I don’t want to make my husbands worse, if that makes sense?  

She explained that grants would need applying for and then plans drawing up but the wheels were now in motion.  Hopefully once I see these plans I can discuss my concerns and explain that this isn’t just about me, this isn’t just my home and ultimately if they won’t consider us both then I would rather say no, I mean there is nothing worse than not being able to climb into a bath after a terrible day at work, is there?  I’m not selfish, this isn’t all about me!!

Another Low Point

We were just getting Andrew back on his feet and I think by totally overdoing it my body decided enough was enough!  I had spoken to a good friend, who is a nurse and fellow EDS sufferer and she had warned me, I was trying to pace, I wasn’t cooking meal’s from scratch, no housework was being done, I wasn’t leaving the house unless it was really urgent, so my days were generally taken up with being in the house and looking after Andrew.

On Thursday night last week I noticed that my bladder decided to stop working, I thought nothing of it, maybe I hadn’t drunk enough that day, I had been busy with Andrew after all, I curled up and went to sleep.  I got up the next day, still nothing!!  I just muddled through the next day and started to develop a niggling pain but refused to alert Andrew he was in pain still and upset he was letting a friend down with work and we had to somehow do some running around the next day.  I went through the whole day with nothing by the next night I did mention it in passing to him but didn’t say how severe it was by then.  Saturday morning I felt awful, the pain was indescribable and I had by now checked what I should do, I had tried and failed to “go” it was like a little switch couldn’t be flicked in my brain.  We headed off to do the running around and even at that point Andrew wasn’t aware of the urgency, 4pm that afternoon we got to A&E.  By the time I was booked in, I was rushed into the first section within the hour, they scanned me and all hell broke loose.   It was found I had nearly a litre of fluid trapped inside me and it needed out NOW!!  Cannula in, gown on (Andrew was furious I looked six months pregnant), moved to a quieter location and that was that, I had to have a catheter fitted and sadly left in.  If I drained over a litre I was staying in as there would be a concern for the kidneys, my bloods came back ok and even though I drained just over that litre I begged to go home.  It was agreed I could and would be referred back to something called a TWOC (trial without catheter) clinic.  I got dressed and went home and stayed in bed for three days, I was so uncomfortable and just felt lousy with this thing attached to me, by day two I then developed a horrific abdominal pain and decided I couldn’t cope with that either.

On day three I called my GP’s surgery and booked a nurses appointment, thinking this would be easiest wander round the corner get it removed quickly and hey presto.  Five minutes after making the call, I got a call back telling me, no they don’t deal with catheters, district nurses do and I don’t have a referral for one, so I would need to go to a walk in centre.  Andrew finished work to take me there and we booked in and the receptionist asked why I was there and of course the answer was, no we don’t deal with those!!  I could have cried, she told me A&E was my only option.  Andrew went back to work, I went onto google and thought about self removal for a few moments and then decided to take myself to the hospital, I am glad I did, I was stuck there for several hours.

The Doctors when I finally got to see them, were understanding.  They agreed that I could have it removed BUT if I was unable to “void” my bladder then they would be refitting me, did I understand?  I said could we cross that bridge when we came to it.  They took the offending item out and immediately the pain disappeared, that was great, straight away I had to drink and then they wanted to scan me, after a positive scan result they would let me go home.  By half nine last night I was allowed home on the understanding that at the first sign of trouble I was to return, seeing I had waited two days they made me assure them I wouldn’t wait two days again.

They had never heard of Urine Retention in Ehlers-Danlos patients and having to explain things like my condition to trained Doctors is still very strange.  To make them realise that I am stretchy and sometimes things inside me go wrong for no apparent reason and that’s just the way it is.  Last week was full of stress and me overdoing it, that may well have been the trigger, however this could just be the next thing that EDS could be throwing at me to test my mettle.

Last night whilst I was alone in my little cubicle I had a really good sob for all the things EDS has thrown at me, for all the hateful things I have had to tolerate, for everything I have loved and lost and for all the daily struggles.  Not a day goes by when I don’t wish for my old life, if someone finds it please can I have it back because I am not a fan of this one, once again I find myself at a low point 😦

 

A Broken Husband

 It was destined to happen eventually, after all the last time his body shut down was when he had Kidney Stones.  Since then he has cared for me full time, run a retail business, DJ’d at various events generally most weekends through the year, attended lots of social gatherings, travelled to various locations all over the UK, Europe and the USA!!  Just thinking about all of that makes my head spin, so on Monday just after ringing in the New Year we were at work.  We all began discussing our Christmas break and our plans for 2016, Andrew turned around and stepped over a small box, that’s when “it” happened. 

 “IT” he put his back out 😦

Within a couple of hours he had gone from a little ache, to totally immobile.  As darkness descended I insisted that we went home and try and get settled, we left his van at the shop and loaded him into the car.  He couldn’t get into the front of the car, so ended up on all fours across the back seats, he screamed out in agony with every bump or turn that I took.  I had tears in my eyes, I felt awful that I was causing him so much pain.  I abandoned the car in the middle of the car park and then it was the reverse attempt of getting him out of the car and into the house.  Once again it took so long and caused an immeasurable amount of pain that by the time he got inside he was exhausted.  He collapsed on the front room floor and stayed there for a few hours, I gave him some muscle relaxants and pain relief, hoping that would help enough to get him to bed. 

That’s where my “nursing” skills haven’t stopped really, have I paced myself of course not, have I considered my pain, no, I’m living on tramadol and no sleep, I’m living on worry and stress.  I’m like a coiled spring at the moment and the slightest thing might set me off at the moment, I know I am snappy and grumpy but I know I am in pain and tired.  Im trying my best to look after a very in pain hubby and I’m not used to it.  I’ve been giving bed baths, trying to remember to give him his medication as well as mine, feeding us both, getting us drinks, toileting needs for a man who is bed bound is a nightmare !!  But I have managed so far, it’s caused me horrific flare in pain but the tramadol and the pain patches will hopefully keep it all at bay, oh and the odd G&T at bed time!!

So today we made it to the Chiropractor who couldn’t manipulate his L5 back into place, yes he found the vertebrae is out of place, hence the horrific pain, so we are heading back on Monday, until then he has a clever little gadget to lay on which should help.   

 In the meantime he needs to rest and hydrate, as for me I will continue to “nurse” my carer as he has been caring for me so beautifully for three years and it’s the very least I can do.

One Armed Typing

I said I would explain why I was still typing with only one arm so here goes!!  Generally everything is still happening with one arm, my left shoulder is ruined you see.

When we got back from our holiday back in November I was sent up to the Stanmore for a MRI, my EDS Consultant decided that maybe it would be prudent to check that the frozen shoulder was nothing more sinister.  So off we toddled the day after we got back and I had another dreaded MRI.  I really do detest those machines, not only are they noisy but in the middle of November they are freezing cold.

I honestly expected to hear nothing back, the Consultant had explained that the results would be reported on and “should” anything show up, I would be contacted.   

Two weeks later a couple of letters dropped through the door and with a lot of complicated wording it basically was referring me forward to the Shoulder Specialist at the Stanmore.  I was due to see my GP the next day so armed with my letters I went along and he asked how I was feeling, confused was probably the best word that day as I had no idea what half the letters were on about.  At that point he explained that the shoulder wasn’t frozen at all, it was injured and would need surgery, hence the referral to the Surgeon!  I was devastated I had hoped to get away with this lightly and now it looked like this was going to take much longer than originally thought.  He reassured me that at least I was in an EDS specialist hospital, so they would be able to provide me with the correct pre and post operative care.

Currently I am still waiting to see the Shoulder Surgeon, I am not sure how long the wait will be, however I have learnt to adapt my life to living with one fully mobile arm and one useless one.

I have seen my pain management team recently who have refused to deal with me until post surgery, I was again offered inpatient rehab but now this has again had to go on hold due to the shoulder, everything has sort of been messed up but hopefully once the shoulder is fixed life can return to some kind of “normal” whatever “normal” is for me.  So in the meantime it is one armed typing  …. amongst other things, it’s all just so frustrating 😦