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MY AUTOBIOGRAPHY OF MS

The dates on the links below are when the updates to my autobiography / health diary were completed. The updates usually cover the time period since the previous one. There is overlap in what I wrote as health diary they were originally written for different sites. There are some specific topics which are named rather than dated, these have been put in approximately when I was doing them / they occurred.

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017


Updates List

I’m broken but they won’t break me - January 2016 to February 2016

An unexpectedly short time between updates this time, but things have happened and are happening, which make another update worthwhile.


After a positive end to 2015, I found the start of the new year a bit tough, as a lot of people do. The dark, ‘not so wintry’ days aren’t a great motivator. I was still going out to the cafe as usual so hadn’t become a total hermit, but everything was a bit more of a struggle. It was coming back from the cafe one Saturday, with me stressing my brother out because I wasn’t feeling well and was therefore going on a bit and being fussy and pedantic when the accident happened.


Accident, I hear you cry, yes I had an accident, it happened as follows. We, me and my brother, were coming back down the path from the Cafe as usual, then, instead of doing the usual successful manoeuvre between the metal railing at the end of the path, we failed.


I think things would have been alright if we hadn’t had the electric wheelchair assist motor on, because without the wheelchair assist my leg hitting the post would probably just have been a nuisance and maybe it would have bruised my leg, but otherwise no damage. However, due the wheelchair assist motor being on my right leg went up hard against the final post we had to get past and then continued to be pressed hard onto the post with motorised force.




I think my brothers initial reaction to my right leg hitting the pole so forcefully was ‘oh shit’, then ‘are you ok?’ and finally ‘you’ve broken your leg’ as he felt the bones realign when putting my leg more comfortably back in my chair. To be honest, I think he was more worried than me, because, although I'd felt some initial pain and discomfort and had panicked, the MS has deadened my nerves so much that I really didn’t really feel all that much pain.


We quickly made our way home, where CoCo crashed through the front door, figuratively, not literally, saying I think Sylvia has broken her leg. This got Steve moving quickly and quick as a shot he was dialling 999 to get me an ambulance, which is when things started to go sideways.


On dialling 999, Steve had to deal with an obstreperous call handler who refused to send an ambulance until she had asked her questions, which naturally sent Steve up the wall and beyond. After nearly 10 minutes of failing to get an ambulance from her Steve hung up and re-dialled 999, only to get her again, as she’d kept the line open for his return call, wasting both our time and blocking the line for other emergencies. No wonder people die unnecessarily if they have call handlers like that. Anyway Steve rang 999 a third time. This time he got through to a professional who sent the ambulance on its way and then got the necessary questions sorted smartly. We have since complained about the initial call handler.


After 10 minutes more, so at least 20 minutes after the accident a paramedic arrived, followed shortly by an ambulance, so I soon had 3 ambulance staff looking at my leg. Unfortunately they had been told of Steve’s issue with the ‘unprofessional’ call handler and I believe they let this colour their judgement, rather than taking all opinions and information on merit. In other words we were treated as trouble makers, which meant they did not listen to my brother when he said he thought he had felt the bones moving in my leg, or to me saying I have MS, which means I can’t feel pain in my legs because of the nerve damage. Instead they just did a superficial examination and decided it was probably just sprained and said I didn’t need to go to hospital for an X-ray. They then left and I went to bed noting that, at least, in all the fuss I had stopped worrying about burping and throwing up which I had been before the accident.


Over the next few days my leg became more and more swollen, and when it spasmed it hurt like hell. It got really bad so we called the local doctors on the Tuesday and one of them came out to see me. Unfortunately the leg was so swollen that it was difficult for her to make an accurate judgement on it, but instead of referring me for an X-ray just in case she made the wrong choice of judging it was just sprained, and that the noises my brother had heard were that of damaged tissues, and not broken bones.


Then on the Wednesday the fun really started. Not content with just having an iffy leg, my stomach peg fell out. Sean my peg-dietician came out. He replaced the peg successfully but because the inflatable balloon, that is meant to hold the peg in the stomach, had come out fully inflated, he referred me to X-ray at the Northern General hospital to check there was no damage to my stomach where the peg goes in. He said we should ask them to X-ray the leg whilst there.


I called my brother, on his day off, to take me and Tasha up to the Northern General Hospital, which he was just able to do before he had to get Marcus from school. He had to get Marcus because Steve was on a job out of Sheffield, Tigga was at work and Grandma was out, and so whilst CoCo was getting Marcus, my stomach was X-rayed. The X-ray showed all to be fine. Unfortunately they refused to X-ray my leg as they did not have a proper ‘official’ referral. I was right there by the X-ray machine, but infuriatingly they wouldn’t X-ray my leg; aaaaarrgh, what utter madness!


I therefore went home with an stomach that was ok and with a wider width peg in it but also with a leg whose state was yet to be determined and which still hurt like hell when it spasmed.


On Thursday my peg nurse, Sophie came out to check on my new stomach peg, she was happy with it, though it’s popped out again since. As she was there, we also got her to look at my leg, because it still hurt like hell even though the swelling had gone down. Sophie took one look at my leg and said “That looks broken. We need to get an X-ray of it.” That said she rang my doctors to get a referral to X-ray for my leg. Did she get it? Don’t be daft; things are never that simple with me. Unfortunately she rang them just after they had closed, as they’re only open until Midday on Thursday; so instead she got through to the local GP Collaborative Deputising Service, where she came across what we can only be described as a lazy doctor, who would not make a referral to X-ray or do anything, as he was not ‘my’ doctor. Why was he there then? To be a well-paid glorified ass on a phone? (No offence to Asses meant.)


After some discussion we decided rather than going up to A&E and potentially sitting around for a long time with me very tired, we’d wait for an X-ray referral from my doctors on Friday morning because at least we’d get a quick X-ray that way.


On Friday my doctors swiftly made the referral to X-ray after reading Sophie’s notes and my brother, on another of his days off, took me back up to the Northern General Hospital, so I could finally have my leg X-rayed and finally an answer the question as to whether it was just sprained; hoped for but doubted; or broken, not wanted, but expected. Having Tasha and Verney also accompanying me to the hospital, helped keep me distracted, I was happier than I would otherwise have been.


I went into X-ray around midday, and the result was this

We headed down hill along this path towards these railings, note how the

railings fail in their job of stopping speeding bikes etc, due to the massive gap to their left, but I in a wheelchair have to navigate them! Steve has complained about this.


Fibula broken at the top

Tibia broken at the bottom

The X-ray showed that I had a double fracture of my lower right leg. It’s common that if the Tibia breaks the Fibula does also.


Once the break was diagnosed we were sent round to A&E where we were seen within the hour. Once in their minor injuries department, I was seen by an Orthopaedic Doctor. When he saw my leg he was very concerned, because he could see a bump in the leg where the bone was trying to break through the skin. Because of this they wrapped my right leg in a whopping great pot, after which they sent me off to X-ray to see how well the bones were aligned.


The result of this second X-ray was satisfactory enough for them to send me home for the weekend until they saw me again at the fracture clinic the following Monday.


This was good in that I was going home and not being taken into theatre for an immediate operation, but bad in that the size of the pot meant I was bruising the left leg badly, if there wasn’t enough padding between them. This tended to happen most when I was being hoisted, moved.


I went back to the fracture clinic on the Monday afternoon where they repotted my leg and then X-rayed it again. The alignment after this potting was better, though not perfect, but given it was late in the day they sent me home in an orange pot, saying they would make additional changes to the alignment the following week.


Orange pot, yes that’s the colour I chose, and which Tasha didn’t approve of and, honestly, I came to regret it.

Me and my orange pot

Me and my carers just about coped for the next week; me, with adjusting quickly, something I don’t do well, to having the pot on, and my carers to moving me around, despite the extra ‘lopsided’ weight of the pot.


Fortunately, during this week I had the fillip of a visit from one of my main university buddies, Tom, who I hadn’t seen in about 10 years. It was great, we got on as we always had.


Tom came with his family, his wife and two girls, both of whom got on famously with Marcus, playing various games including Monopoly, whilst I subjected their dad to John Shuttleworth and other surreal things of mine. Fortunately Tom still ‘gets’ me, so could understand the wavelength I was on, which shows my quirks haven’t changed that much from those of the girl he knew at uni.

Me and Tom

Then on the following Tuesday I went back up to the fracture clinic, for the doctors to reassess my leg. The consultant decided that it was necessary to re-align the bones so they would have a chance of healing. To do this they made a cut in the pot at the front, so the top and bottom sections of the pot could operate like a hinge, and enable them to move the leg and therefore the bones position, a position which would then be kept by putting a piece of cork into the gap created at the front of the pot.


Before they did the leg bending procedure they suggested that I inhale some of the gas and air they had available. To be honest I thought this was a bit of a wussy option, especially as I can’t feel a huge amount in my legs due to the MS, but I did as they suggested, as they were quite insistent. I’m glad I did, because when they bent the pot open to insert the cork it hurt a lot making me verbalise the pain even though the gas and air took the edge off it. The experience does make me ask the question though, how come that gas and air is freely available in hospitals, but Cannabis isn’t available medically. Strange, given that their effects are very similar.


The good thing about the cutting of the pot and the subsequent assault on my leg by the doctors is that it meant they had to redo the outside of my pot, which gave me the chance of rectifying my error of choosing orange the previous week. The orange soon disappeared under purple.

Me and my purple pot

After they finished firming up my now purple pot, the doctors sent me off for another X-ray, which was quickly done, and then I was back to the doctors to get the verdict as to whether the pot re-aligning pain had been worth it. Their verdict was that it was, they were now happy enough with the alignment, which was good enough to potentially allow the bone to fuse back together and so avoid the need for any operation, which is very good. I say potentially allow the bone to grow back because the shin bone is a slow healer, and my shin bones recovery will be hampered by the fact that I don’t put weight on it. They don’t know if the bone will fuse together but they were optimistic that bone filaments, which are strong in themselves, will have the chance to make a successful repair. I’ll find out the progress my bones are making at my next visit to the fracture clinic, at the end of March, but I still face months more in pots. Maybe later as the bones heal, they will be able to reduce the length of the pot to just the lower leg, rather than it being to half way up my thigh, as it is at present.


At the hospital I found out about these really good long waterproof covers for pots. I invested in one which means I don’t have to miss out on my showers. I also bought a toe cosey, which means I can go out without freezing the toes on my potted foot, off. We’ve also got padding to protect my legs when they bash together, therefore preventing my left leg from getting to grazed, bruised and battered.


The visit didn’t take too long, which meant I only just missed saying a second goodbye of the day to Steve, who has gone off to Malaysia and Thailand for a month. Whilst Steve is away my brother is staying with me and Marcus. Also, whilst Steve is away, I’m having some work done in my room and so I’m in the process of getting extra cupboards and shelves put in all of which will be very useful. I might also get my room repainted soon. My carers are encouraging me to spruce it up further.


Since my pot changed colour, people have continued coming in, to help me keep my spirits up, including my friend Liz and, of course, my sister-in-law Carol. I also managed to keep my spirits up by buying a Russian wedding ring, which wasn’t cheap, I wanted it to replace one I had previously given away. The visits and the retail therapy helped but I have still managed to get very down in the dumps; so much so that the doctors have had to up my anti-anxiety medication to its maximum. This upping of the dose is not what I really want to do, but it has been necessary. Amazingly, it was not the broken leg that got me really down and knocked me for six, no it was something else, something you are not going to believe, it’s so

My right leg caught front left pole, as seen on this uphill looking photograph of the scene.


What happened was that Continuing Healthcare Council (CHC) in their infinite wisdom decided that I was now of such improved health, I do no longer meet the criteria for full NHS Continuing Healthcare Funding.

Little me, with severe MS, who lacks the energy to be up more than a few hours a day, who has too shallow breath to risk elective surgery, who is not continent, who cannot eat enough to stay alive and has to have peg feeds, who sometimes forgets to ask for her drugs, who has a broken leg, who has bed sores due to the broken leg, who is feeling very down, does not meet the criteria for full NHS Continuing Healthcare Funding.

I’m hearing from health professionals that such decisions are becoming more common, intimating that it may be ‘official’ government policy to get people off funding as a priority over meeting their needs. I also hear all you can do is appeal, so I’m going to. I also hear that they wonder “who qualifies for full NHS Continuing Healthcare Funding if I don’t?” and that they find the decision that I don’t to be rather

So how has the CHC reached this decision? Well, they held a meeting with us which took place in July, although all their letters to us say it took place in October. They’re really with it, aren’t they?


During that meeting the ambiguous criteria that funding is assessed against were gone through. I delegated this meeting to my brother as the meetings are too tiring for me and because he often knows my health conditions better than I do myself.


Looking back my brother says that he believes there was an agenda from the health professionals to reduce the level of the domain I fitted into, as it was a much more paperwork centred than person-centred meeting than had previously been the case with these meetings. In retrospect he wishes he had put up more of a fight on the domains, but he was lulled into the impression that overall needs could trump domain levels; something which is not true.


We had this meeting in July and it then took them 7 and a half months to get all information together, compared with 1 month is 2014. Yet somehow they managed to miss the information about my broken leg, which should have appeared on the systems they have access too, before the final decision by their panel of experts. Maybe they were unfortunate and the pertinent computer screens went blank on them.


Whatever happened they managed to prove I am healthy, which enabled them to decide that I only qualify for Joint Health and Social Care Funding and not Full CHC Funding.


Unsurprisingly this recommendation was made to their panel and endorsed by their panel without my knowledge or agreement.


I wonder if their computer screens are showing the fact that the doctors have had to up my anti-anxiety / depression medication since their decision. No probably not, and they probably don’t show that the weight of my pot has given me bed sores for the first time in a year.


They have continued with the process of de-funding me even though they have been told verbally about my broken leg, the bed sores and my near depression. The system doesn’t stop once its made a ‘politically-motivated’ decision, because ‘politically-motivated’ decisions are never wrong, plus they don’t actually care; again taking their cue from the very top. So maybe I'm wrong and the decision isn’t



it’s just policy.


Maybe being slow with paperwork is also policy, as we’re still waiting for the paperwork from the budget planning meeting we had with their personal budget team last April. It now appears they’ve lost this paperwork at sometime. Probably when the ‘cheapest bidder’ contract holders for the work changed.


Some good news to finish on, the anti-anxiety drug that the doctors upped is working and I’m now feeling perkier now and motivated to go out again rather than just want to stay in bed and I’ve decided that I’m going to continue to live my life to the full, whatever the CHC idiots think of me and wherever I fit in their paperwork.


I’m going to prove Marcus right, that I am a good ‘sick’ mum, I’m going to go out and do ‘sick’ things with him, with my family and with my carers, no matter what. I’ve decided that I am going to be

Sylvie Wright

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

Mail: brown.websites@gmail.com?subject=Livingwithms - A17 update - March 16

Feel free

to e-mail me

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017


Updates List

10th March 2016