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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Unpublished articles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

Guess what colour is my pot is - March 2016 to August 2016

Where do I start in updating you on what has been going on? There has been so much. Do I start with my health, my care funding, other things? I really don’t know, so let’s start with some health related things first.


You’ll remember from my last update that I broke my leg at the end of January when a metal post decided to jump out of the ground and attack me for no reason. Honest, that’s what happened. We didn’t smash my leg into it, honest. At the end of March I went back up to the Northern General Hospital to have  a further x-ray to see how well the pot setting had allowed my leg to start to heal.


The x-ray showed some filaments starting to re-attach between the bones in the split in the tibia. It was decided that this progress was enough to allow me to have a slightly smaller pot, one that only came up to my knee. This time I opted for a green pot, sorry no picture, as it only lasted a week because the previous pots had rubbed my heel and knee, and they wanted to check the sores were healing ok. After a week the green pot was replaced by a similar sized red pot.

Me and my red pot with my mum

Me and my red pot with Sue Leeson

These smaller pots had the advantage of making my care easier, so I and my carers were grateful for the change. Making things simple and easier all round, that’s my way isn’t it? Err NO, that’s not Sylvie’s way, me keep things simple? Me? Nah.


Just to keep things complicated my Peg which had been popping out regularly again and again since the beginning of the year, now came out again; only this time the Peg site became nastily infected. This infection and the regularity with which my Peg was falling out led my Peg team, with my agreement, to decide that it was time to bite the metaphorical bullet, and have the peg re-sited.


Shortly after Easter, I therefore went into hospital for this minor op. I don’t remember the operation as I was under gas and air at the time, but I enjoyed the ‘drunk’ feel of it after coming back round. The operation was quite straightforward and it only involved one night stay in hospital afterwards as a precaution just in case there was an adverse reaction to the gas and air. The new Peg has been a success; it’s a different design, which means it doesn’t pop out now. We still have to manage the new site carefully, but it’s a massive improvement.


Back to my pot news - we were due to go up to the fracture clinic in May, but due to their cancelling an appointment and me not being able to make the next one, I didn’t make it up there until the beginning of June. In the meantime the local agencies had made some changes to the railing where I bust my leg. Can you spot the differences?

Before

After

They’ve not really made it easier for me to get through - well, maybe minutely.


I eventually made it up to the fracture clinic in June, where they took another x-ray which showed that the bone alignment had slipped slightly, so there was only a 30% overlap between the two parts of the tibia bone. This might have been an issue if I was ever going to be able to walk on the leg again, but let’s be honest; due to MS and having my hamstrings cut, I’m not. Therefore the consultant decided, as more bone filaments were knitting the overlapping parts of the bone successfully and making the limb stronger, he’d leave well enough alone.


The only real change was, you’ve guessed it, in the colour of my pot, which turned pink with silver glitter on it.

Me and my pink pot

I’ve just recently got back from my August visit to the fracture clinic and the great news is that the bone filaments have been knitting together well and the lower leg is so strong that the consultant couldn’t make it flex in his hands.


Due to this increase in strength and due to the fact I won’t be walking on the leg, he’s allowing me to have a part-time pot now. What I mean by this is that when I’m in bed I don’t have to wear a pot, but when I’m being hoisted, or am in a chair, I do, in case it gets knocked, which wouldn’t be good, as it’s still strengthening and mending. If all goes well, I may well be allowed no pot at all in mid-September. In order for the carers to be able to put the pot on and take it off, it has Velcro straps round the back of it. Now for the most important piece of information, its colour! This pot is blue.

Ok, I think that’s enough on multi-coloured pots for now and I expect you’re interested in how my

← The pot without me.

Care funding issues have been going. Well I guess the only way to put it is that, nothing has been resolved.

You will remember that in February 2016, they made the decision to move me from a fully NHS funded package of care, to one jointly funded by the NHS and Social Services, and this was based on the outcome of a meeting the previous July (2015).


Since February I have learnt, been informed, that being moved from a fully NHS funded package of care to one jointly funded by the NHS and Social Services does not necessarily mean a cut in funding, which is something I had believed to be true when I did my last

Update. No, I have been informed that the change could mean that my funding could go up, stay the same or go down, depending on my assessed needs. Yes that’s what I’ve been told, personally I say

Why don’t I believe them? Well would you, given the track record of Clinical Health Care (CHC) of not being upfront with me on the decisions they are making? They didn’t tell me they were recommending the package change. That was a real nasty bolt out of the blue, so do you blame me for expecting something similar again from the same people?


So what has happened funding-wise since my last update? Well mainly CHC has made social services look mega efficient.


As soon as I found out about the funding package decision, I appealed against it as it was so

to me.


Now CHC, according to their own guidelines, are meant to arrange appeal meetings within 10 working days, so how long did it take them? Yes, you’ve guessed it, 3 months! We didn’t have the appeal meeting until mid-May!


From conversations my brother had with people at CHC we expected the appeal meeting to also take into account my health at the time of the appeal meeting. Did it? Did it heckers? Maybe we were a bit naïve to hope for this, but it was an impression people at CHC gave, so we - well, mainly my brother - prepared for the meeting in this way.


The reality unfortunately was that the meeting was solely based on how I was in July 2015, meaning I was disadvantaged, as we had not prepared in this way. Whether this made any difference to the outcome, the appeal failing, I don’t know but it definitely didn’t help my cause.


I did have some success though, with the complaints I sent into them. They acknowledged that the timescales of the assessment and decision making process had been far too long and that I had not been kept well enough informed along the way. They also said they’d learn from this and improve their performance in the future

The only reason we know how things are now is because my brother rings them up and writes to them, not because they communicate with us.


One effect that making the complaints to the CHC did have was that it temporarily short-circuited one process, which meant we had a meeting about my future budget before the appeal meeting had taken place, which is not usually the case. I think they did it to mollify my brother who was pretty narked with them by this stage.


Did having this budget-planning meeting early, in early May, make any difference? Of course not, nearly 3 months down the line we’ve heard nowt about owt to do with budget finances from them.


Social Services are also sitting and waiting for CHC, having managed to have 2 meetings with me and my brother and complete their paperwork jointly with us, before the end of May. Social Services being praised for efficiency, whoever would have thunk it?


At the appeal meeting we were promised a quick reassessment of my current needs by the end of June, as those doing the appeal meeting recognised that things had changed since July 2015. Has this meeting happened? No of course not; my brother has had to chase it, but still nothing yet.


I guess the good news side of all this dragging out for so long is that my funding hasn’t been cut, it is still chugging along at the same level, which generally works for the amount of care I need.


Speaking of care, there are some changes afoot in this area. As of the beginning of August my brother has dropped down to 2 days hands on care a week and a lady called Angie has started and will be doing the 1 day a week my brother is giving up.

Angie and me.

We’ve decided to take this step even though the future care budget is still unknown, because if we didn’t make a positive decision, we’d be waiting for ever for anything to change. I’m looking forward to the expanded care team, as it will mean a wider variety of people to talk to and more chance that I will stay positive, and it means that me and my brother will not irk each other as much; for him doing care for me at least 3 days a week for the last 3 years is getting a bit much for both of us.


The reduction in days will also allow my brother more time to do my book once the rest of the team has successfully settled into our new routine. This will be great as he’s had no time for it since January, given my funding related paperwork and other things that have cropped up. Yes it’s true my brother has been very wicked, so no rest for him, hehe!


You have to laugh at the world or it’ll totally get you down. If I’m being honest with you, I’ve found that harder to do in 2016 due to my feeling a higher level of anxiety. Why? I’m not exactly sure why. I think it’s because a lot of thing coalesced together to make it so.


I think I had a January slump during which I felt more depressed than before, due to the darkness and not getting out as much, due to the murky weather. This depression got me focusing more on my feelings of nausea and related symptoms, which wasn’t good or sensible, and then the care package decision sent me into a negative spiral, from which I haven’t totally recovered.


The difficulty about getting out of a slump is that it takes a hell of a lot of mental energy, which I often don’t have, as the slump feeds my anxiety, which feeds lack of sleep, which feeds lack of energy, which feeds my anxiety and so on. I do manage things through using sleeping tablets to help me sleep and Kalms to help me relax but they only help so much.


My brother says I’m addicted to anxiety and maybe there is a little truth in that but if only it were that simple. If it was that simple I wouldn’t now be eating proper meals again, rather than just relying on Fortisip feeds for my nourishment. I used to be anxious and scared about eating food but now I’m anything but that, as I prefer it to having Fortisips. I really enjoy eating and the tastes that come with it, even from my simple meals of easy to eat casseroles and hot pots. My carer Verni makes a lot of my meals and they are delicious.


How to manage my anxiety is the big challenge going forward, should I continue doing what I’m doing now which is working, I think, or try and change things?


For now I will get through things by doing things the way I do them, even if my constant requests for grapes to manage my nausea, gripes on others. I will continue to do it as I know that works for me, even though my brother no longer believes I am helping myself by doing this, and that I may even be feeding my anxiety problem by these actions. At the moment changing things is too big a leap for me although I do acknowledge that I may need to change things at some time in the future, as I don’t like the non-lady, Ann Ziety, that I can become when I am both exhausted and anxious.


For now I will therefore plod on in a non-walking way and continue to do the best I can, including going out places with Marcus and others. I enjoy going up to my mum’s, my friend Liz’s and I also took Marcus to his school fair; fortunately the pouring rain was only when we were travelling over there, otherwise it would have been horrendous, though, as you can see, Marcus went fully prepared.

Marcus, Tasha and me at his school fair.

I’ve also been out to Rother Valley Country Park and up to Weston Park a couple of times with Marcus, grandma and carers. Up is the right word when going to Weston Park as it is right at the top of our hill and because last time we went, at the time of the Tramlines festival, Marcus and his friend Adam, who was back over from Malaysia for a week or so, literally went up in the air.

Me at Rother Vally Country Park.

Marcus (left) at Rother Vally.

Marcus & Adam at Weston Park.

Speaking of Marcus, he’s still doing well at school, working at expected levels for his age and he recently went cycling with my friend Jaqui, around the Derwent and Ladybower reservoirs in Derbyshire. The mad nutters only went and cycled 10 miles!

Marcus & Jaqui at Derwent.

I’ve also been out for a couple of meals with Jaqui and another school friend Jenny.

Jenny, me & Jaqui at Balti King.

What else has been happening? Well as many of you will know, I’ve been writing poems this year, to keep my brain occupied with positive activity and so far this year, I have completed my life poem and a poem about Jim, my cat, when I was growing up, and another poem about my dad. I’m currently slowly working on a poem about my grandma & grandad.


There has also been the small matter of Steve making the big 60 in June.

Cake Time.

Relaxing Afterwards.

This time I didn’t have the energy to organise a big bash, as I did when he was 50, but I think he had a decent day all the same. He’s currently off camping with Marcus in Wales; yes my boys will currently be having a Wales of a good time.


Marcus regularly helps me, he is really kind with me. Why? Because as he told me “He’s a kind boy”, he speaks the truth does my boy.


I think that’s about it for this update, except to say that in June we found this weird monster in the front room,

Scary Monster

Does anyone have any idea what it is or where it came from? And do you think it painted these grapes on my face?

Sylvie Wright

11th  AUGUST 2016

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

Feel free to email me

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’d love to hear from you