"All our dreams can come true, if we have the courage to pursue them"

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 the health diary updates were originally written for a different site than this one. There are some specific topics which are named rather than dated, and these have been put in approximately when I was doing them / they occurred.

Again, it’s been a longer than intended in updating my autobiography. This update covers September 2012 to the end of June 2013, I didn’t think there was much to say, but there seems to be, as usual.

Back last November, I got an infection and did not respond to antibiotics, the family knew that something was really wrong when I was adamant that I was not married to Steve, I knew I wasn’t married at all. My condition didn’t improve so I was taken to hospital and there I was admitted, it turned out I‘d developed pneumonia, not good!

Once at hospital I was still out of it, I was swearing at my sister-in-law Carol, telling her to f*** off, whilst in the same breath, truthfully saying she was good, she is, she’s helped out a lot around our house helping us keep it tidy and in order, thanks Carol.

I then started to respond to the treatments given, but it still wasn’t great as I was panicking a lot as I was finding it hard to breath. I was hyperventilating, which was awful, you can only really understand how awful by being there and experiencing it.  This contributed to me staying awake night and day for the best part of 3 days and nights, which wasn’t exactly conducive to a quick recovery, no  it wasn’t, I think it contributed to me contracting c-dif, yes I got an innards infection on top of pneumonia.  

Why did I stay awake all that time? I think sub-consciously I thought that if I slept I would die, so I panicked, hyperventilated and refused to sleep. In the end I couldn’t stay awake so I did sleep, a good long sleep.

The good thing about getting c-dif, yes there was a good thing, was that it meant I had to be moved to a room on my own. Having my own room meant that I was less disturbed by other people and I disturbed them less, the drawback was I was more isolated and the nurses weren’t great at responding when I buzzed, they took to calling me “Mrs Nag”. During this time I had to use a nebuliser to clear my lungs of unwanted moisture, which was tiring but the nebuliser did its job and cleared my lungs.

In the middle of this bout of pneumonia, Steve went to Florida with Marcus. In the past I’d always said to him don’t postpone Florida because of me as we both agree life should go on, but it was a shock when he did what I’d said. I was still panicking about surviving when he and Marcus went; I think to both of us felt it as if we could be saying our final goodbye.

In total I was in hospital for about two and a half weeks, when I came out Salmoon was there to help me full time as he had done on previous occasions Steve had gone on holiday.

Once back home I was much more positive and one of the first things I did was to start recording my life story onto a digital recorder; this was because I’d had the idea of writing a book about my life. The recordings along with my website would enable someone to ghost-write the book for me. Ghost-writing volunteers, this could be paid or unpaid, please contact me, my e-mail is sylvia.wright@blueyonder.co.uk . Why was I so much more positive? Steve says it was because I’d fallen off the edge of the cliff when I’d got pneumonia and now that I was back on the edge of the cliff I was enjoying it rather than being frightened, I think he’s right, now I value and enjoy every day and want to do things not just  stay in bed.

In December I started to drink my Fortisip, this came about after I found out that my school friend, Liz Horicks, that her grandad drank his. About a week later we found we’d forgotten the syringes to peg feed me my feeds so I tried drinking them instead and found I preferred it. I usually drink them now and enjoy the taste experience. For a while I also got a bit addicted to eating picked onions.

Just after Christmas at the beginning of January my dads older sister, Margaret, passed away aged 88. I had the privilege of being able to attend her cremation service and the reception afterwards. I say privilege as I was able to represent my dad who looked up to her, his big sister, throughout his life.

Talking of Marcus, I still can’t believe he came out of me. He’s a wonder. He’s a thriving balanced ‘Peanut Butter Ultra Nutter’, yes that’s what he calls himself! That he is he is as, is thanks to my, his whole family including Tigga ‘his sis’ who he stays with 2 nights a week. When I teach him new facts I’m always amazed at what he already knows, including about the solar system and eclipses. He’s been showing me his favourite Internet and especially you-tube sites. He does this through my telly now that Uncle Coconut has shown him how to link it to his computer. So all versions of GangNam Style, I have seen as well as loads of Annoying Orange videos, another favourite of Marcus’s.

Marcus had a glowing report from his school in Florida, which he attended in November & December last year; they said they wished all kids were like him. The teachers in England like him too, one said he’s one of the nicest kids she’s taught. I think he’s better behaved at school than at home, not that he’s bad at home as his daddy keeps him in line, but to get comments like that he still must be.

Marcus is now getting into Chess and Monopoly and picking both up quickly.

Shortly after the duck race the second wheelchair which is better fitting was delivered by the council, it’s better because it’s smaller and I therefore don’t loll about in it so much. The bigger chair is now my back up one and is kept at my mums.

It was at this time we made the decision, in order to make things run more smoothly, that my brother should take over as my main PA from June, with Henry continuing to help me on a Saturday. The delay being due the notice my brother had to give in his existing job.

April was also when my Freiberg University friends visited, Ann-Cathrin all the way from Norway and Frank who came down from Newcastle. Frank visited on the Saturday and Ann-Cathrin was here all weekend, I was exhausted by the end of it with amount of chatting and catching up we did, but given the chance I’d do it all over again tomorrow.

Then May came and so did my second bout of pneumonia. This time I don’t even remember going into hospital as I was pretty much unconscious when I went in, I had Steve and Henry very worried and they got the ambulance arriving at high rate of knots.

For the first week I didn’t know where I was or what was real, I hallucinated a lot due to having blood poisoning, pneumonia and a uti, I turned Brian Hampton from the Caring Clinic, who I owe my life to as he helped me onto the path of good diet and Nutrition, into Superman with him saving people and animals around the world. To this day I don’t know what really happened and what didn’t. Maybe a lady, aged 71, was in the next bed. Maybe she had not had a child and regretted it. What I do know is that it confirmed to me that I would never swap Marcus for better or good health, no never in a billion years, as he would say. Marcus means that much to me!

All this time life went on as usual for Marcus, even me being rushed to hospital is normal, he’s so used to people coming in and out that even this didn’t seem to worry him. This time he even enjoyed visiting me in hospital as he could tell me awful jokes, like

Q: Why did the golfer wear to pairs of pants?

A: In case he got a hole in one.

And

Q: What did the Policeman say to his stomach?

A: You under a vest.

After visiting he also got a bottle of fizzy drink into the bargain.

Again I proved I can’t give up even if my brain may think it wants to as my subconscious won’t let me, I’ll always battle on, till the cows come home and then some, quitting is just not in my nature.

I think I know why I’ve been getting pneumonia, it’s not because I can’t swallow and get liquid in the lungs because of that, but rather because I can’t puke properly and when I retch it can go back down the wrong tube rather than come out of my mouth. I’m now being much more careful about spacing out my medicines, feeds and drinks, this is especially important if I’m panicky. So far things are a lot better now and I’m not retching much at all, I’m living and learning.

This time in hospital I had a room on my own nearly the whole time and the Nurses were brilliant, responding happily and nicely every time I buzzed. I really enjoyed being on Brierley 3 in the Northern General Hospital.  

I made one Sister laugh all the time by telling her telling her one joke which was

Q: What do you call a three legged donkey?

A: A wonkey

She loved that every time, it’s a much cleaner joke than most of my current favourite jokes two of which I heard Peter Kay tell. My favourite jokes currently are

1) A lady, went to the doctors with a piece of lettuce poking out of her knickers, the doctor asked her why and she said “that’s the tip of the Iceberg”

2) Q: What do you call masturbation?

A: A waste of f***ing time!

3) A husband asked his wife why she never told him when she was about to orgasm; she replied do you want me to ring you at work?

I was so happy on Brierley 3 that I had mixed feeling about leaving, how mad is that?! Well I have come out and I’m glad I did, it means I can keep going to Upperthorpe Café, run by a great lady called Pat, she has given me the whole wall in there, so I have been framing and putting up some of my newspaper articles, as well as producing a portfolio album of all my newspaper clippings. Pat’s idea is for them to inspire her other customers. This has been my latest short-term project, which has been running alongside, well more like ahead of, my medium term book project.

Shortly after I came out of hospital my brother took over as my PA and made a mess of it! Only Joking! The truth is things are now much more organised and Steve and I are very happy with how it’s going, it’s been a good start, but don’t into lazy habits Uncle Coconut! As well as helping me most days he helps put me to bed 5 nights a week, it’s this that really helps take the pressure off Steve.

In the last week I’ve been out to more places. To the Kruchok BBQ on Friday evening, I surprised myself by going to this one as it was in the evening; I’d said yes I’d go before I thought about it.

Then on Sunday I went with Marcus, Steve and Uncle Coconut to Owls in the Park in Hillsborough Park, this was a big event including a fair and music put on by Sheffield Wednesday, we all enjoyed it!

What Next?

For me, I’m currently in the process of getting a Baclofen Pump; Baclofen is a muscle relaxant I take to try and unstiffen my legs muscles, which cramp and spasm a lot. I’ve had two minor operations to see how my stiff legs respond to Baclofen being introduced directly into my system, following these the consultants have decided that I would benefit from having a Baclofen pump fitted. The Baclofen pump is quite big and will take a major operation under general anaesthetic to fit as it is placed under my ribcage with tubes then plugged into my spine so the Baclofen is introduced directly into my system and is not lost in digestion and whilst going round my body as happens at the moment.

I really need it as my muscles tend to cramp when I’m lifted, this pinches the hand / arm of the person lifting me, plus it should reduce the pain of my spasms cause me, so overall I agree with the consultants that it is worth doing. After the operation I’ll have to go back to the hospital every 3 months or so to get the pump refilled with Baclofen.

What else? Hopefully my book will be produced. I believe that it will eventually be turned into a Hollywood movie, well one can dream, can’t one.

For Steve and Marcus, they are going Thailand for 5 weeks in the summer and will meet Wan and Becca there. Wan is a lovely Thai lady who Steve met there last year, Becca is her daughter. Wan is Steve’s girlfriend, I’m happy with this relationship, there will shortly be an article in MS-UK’s New Pathways magazine on our attitude to MS and Physical Relationship and why I am happy for Steve and Wan to be together.

I really would like to see Wan as I worry about her, especially as she doesn’t get to see much of Steve, but I think it’s unlikely to happen in the near future.

Thats all for now

Sylvie 30th June 2013

Feel free to e-mail me

Pat was too shy to appear in the photo of her I planned for here, so you’ll have to visit the cafe to see her in person.

Margaret Buskwood

1924-2013

Around this time my PA changed, Salmoon left and Henry, the baby, little kid I’d babysat became my PA. Our roles reversed as he, in the role of my PA changed and showered me rather than me him, the lad I saw as my son was helping me now, wow. His girlfriend Ashley also visited with him. It was also at the time of the change of my PA that I started to get out more, it might just be going to town, the local Tesco, the local café or mums, that didn’t matter I was getting out it was great, it’s amazing the pleasure going to these places can give one.

In the Spring I had the great pleasure of meeting my friend Carol for the first time in ages. She’s the lady I met a couple of years ago when we were both in hospital and she has become a bit like a second mother to me.

In March / April time two wheelchairs which were better, much more comfortable, were delivered. The first one Steve got of e-bay for peanuts, it was a bit big but it enabled me to get out more comfortably including to the Duck in the Park Race at Endcliffe Park, which I went to with Marcus on April Fools Day, maybe I was a bit of a fool to go because it was bloody freezing, but I enjoyed it anyway.