Thursday, 23 October 2014

Wish 5 update

Wish 5 has got off to a good start thanks to BBC Radio Surrey.

Yesterday the breakfast show kicked off my wish list by handing out 12 flowers to people in Woking (donated by Flowers By Rosemary) and asking them to pass them onto someone in need of a smile. People were asked who they were going to give it to and why, reasons included someone who had recently lost their horse, a lady who is caring for her seriously ill children and a homeless person.

A balloon has also been sent thanks to a kind friend who is very poorly herself. The fact she is bedridden in a nursing home hasn't stopped her helping another resident (she is too poorly to know any residents but asked staff to pass it onto someone in need of a smile).

So with the 12 flowers and balloon that's 13 out of my goal of 30.

Would any flower or balloon companies be willing to help in return for a plug and link? Please ask any you know.


Thank you BBC surrey and thank you to my friend

Sunday, 19 October 2014

Will I get better? Is there any treatment?

Last week someone asked if they could ask me what my prognosis is. To anyone reading this please feel free to ask questions, I don't mind at all.

Will I get better is the big question, the simple answer is I don't know. Long term severe M.E is very different from mild/moderate M.E or for those who only have it for a few years. With long term severe M.E some get better, some improve, some don't improve and a small % die from it.

No one has a crystal ball, I don't expect to make a full recovery but I will settle for independent and out and about. I plan to move out, have children, finish my book (I might of finished it by now if I hadn't deleted half of it by mistake!) and live life. I don't expect to ever know what it feels like to feel well or to be able to do what ever I like but I will fight this all the way. Full recovery is rare but does happen, when I'm in hospital I sometimes have a visit from a lady called Hannah who was bedbound for 12 years, she strolls in and tells me how she's taken up Zumba and frequently swims 30 lengths. On the flip side my lovely friend Emily passed away from severe M.E.

There is no cure for M.E but there are things that can help. I do daily physio, try my best with pacing (it's hard as my instinct is to fight back rather than lay peacefully resting)/, take a cocktail of medication to control some symptoms and battle the bloody NHS for inpatient funding. Now days I have the most amazing and understanding doctor (who treated Hannah) and team at the hospital and they feel admitting me for 6 months could get me better, not 100% but living life out of bed, able to walk and go out and about. As always it comes down to cost. £50,000 although to be honest if they even gave me half I could make some serious progress. It feels like such a lot of money but in the grand scheme of things is it? There is another treatment I would like to try which the top severe M.E expert in the world has found to be the most effective and that is simply IV saline but it's not a treatment available in the UK to people with M.E (the hospital I go to is small and can't put a picc line in to have it at home). There's a research project going on into IV saline therapy in M.E in Canada but I can't hop over there and it has at least 4 more years until it finishes and can publish results.

It's very frustrating, firstly having a condition which is misunderstood (some people don't understand it and think it's mental health in the same way MS was one hysterical paralysis despite ME being classed as Neurological by the World Health Organisation) and secondly not being able to get funding for what help is available.

However in short there is hope, I'm a lot better than I used to be and will never give up fighting.

"As long as I dare to dream of better things to come, I can face tomorrow with a smile"

Thursday, 2 October 2014

Does it count?

Quite a few people have asked me about my wishes and if something they are doing 'counts'.

The idea of the list is to ask people to do the things I can't do and which they wouldn't otherwise be doing. For example wish 1-I'm trying to find 30 new people to join the bone marrow register rather than finding 30 people who registered at some point in the past. If it was in the past it doesn't count as my wish but it does count as a wonderful thing you've done :) The same for if you were inviting someone with special needs anyway or saw a sunset in the past.

I've been very touched by responses so far, and it is certainly adding some positivity  to my life.

Thank you!

Wednesday, 1 October 2014

Wish 22- Donate small items to a non profit hospital

Edited to add the link to an Amazon Wish List with the items the hospital needs, they will go directly there. Items start from £1

Burrswood is a wonderful hospital which I go into a couple of times a year (I'm fighting with the NHS for funding for a long stay). It's a special place, set up as a Christian hospital it's aim has always been to help the whole person and it does it well. It's used by people of all (or no) faith, of all ages and conditions. It does a mixture of respite, physical rehab, end of life care and for people in need of support. Over the years it has come to specalise in severe ME too and is the only place I have ever been where people understand it. It's the only place in the world my parents feel able to leave me and relax knowing I am being well looked after.

Being small and non profit there is always a lack of funds. When able I have hydrotherapy which really helps and is enjoyable too. I remember being down at the pool once and taking in the people around me. While waiting I was talking to a man who had MS, he said the local MS group come in weekly for sessions,there were adults with learning disabilities in the pool while we were talking and after I came out a very severely disabled man was being lowered into the water on the special hydro trolly bed, it's also used by those with mental health problems as a way to relax. All these people including myself couldn't go along to our local pool but were able to benefit from hydrotherapy thanks to Burrswood.

I asked the head physio and the occupational therapist if there were any items or equipment needed. Although they are always in need of expensive equipment they would love and put to good use any of the following (I have posted links as examples, they might be cheaper on other sites);

-Comfort grip magnifiers (for people with visual problems), example £11.95
-Pegboard with round pegs (for upper limb therapy), example these are £51.47 but I'm sure you can get similar for a lot less
-Arm support therapy (for correct positioning following strokes) example £35.99
-Large book chair (to hold books for those with weak limbs), example £11.95
-Posey bedfellow (comfort/positioning for people with severe ME or strokes), example £282.78
-Twiddle muffs, either purchased or handmade (for dementia/anxiety) Also listed under my wish here example £3.50 and also listed under my wish here example £29

Physio list coming soon

If anyone could help it would be fantastic, thank you. The address to send them to is:
Alison Cornford, OT, Burrswood Hospital, Groombridge, Tunbridge Wells, Kent, TN3 9PY

Beach chair update

The beach chair update

Original post

I've not launched my wish list yet but a friend put me in touch with Diane who runs Finest of Norfolk. We spoke about Norfolk and the need to make the beaches accessible. Diane lives in Heacham (Hunstanton) and suggested we try for a chair there too, it would mean there is a chair at both 'ends' of Norfolk and with the Wells chair in the middle

This would be great but means the fundraising target in now £12,000! I'm in the process of setting up a trustee bank account and somehow hopefully we will reach £12,000 and Brenda's Beach Chairs can create smiles and happy memories next year. We are currently at £25 (thank you to everyone who donated) which leaves £11.975 to go.

If you can donate, hold a fundraiser or help in anyway please shout. If you are a business I can post a link as a thank you on here.

Donations can currently be made via our Go Fund Me pageAnd soon by cheque or bank transfer (I will post when the Brenda Beach Chair fund account can accept cheques).

Thank you, my Nan Brenda would be so pleased,


Photobucket Pictures, Images and Photos


Vikki


About

Once upon a time a little girl ran free, though that wasn't always to be....

Aged 11 a virus came along and caused havoc, over the next 5 years things slowly got worse until aged 17, paralysis set in, speech, walking and all abilities were stolen and life became an existence confined to a bed in a blacked out room.

All special occasions including my 18th, 21st and 25th birthdays were celebrated in bed and the wish for recovery made when blowing out candles never came true.

Life isn't all doom or gloom, yes I may have Severe M.E but every day brings about something to have a giggle about and I remain positive. There is one thing I've been struggling to find a positive in though beyond 'I survived' and that's my up coming 30th birthday on the 21st Dec 2014. I never believed that I would still be in bed for it, truly believing I would be fully better by the landmark.

I kept seeing '30 before I'm 30' lists around and my heart would sink thinking how I've not ticked off my first legal drink, a driving lesson or first job yet. It got me thinking of what things I would put on the list if I had one and I wondered how could I achieve them. The answer isn't I can't achieve them myself but the idea came to me, to ask YOU to help!

Photobucket Pictures, Images and Photos


About me

I'm Vikki and live in Surrey, England. I suffer from severe M.E and related conditions which has meant I've spent the last 13 years in bed, varying from being able to have the occasional trip out in a wheelchair to being completely paralysed in hospital. It's a neurological condition with a huge range of symptoms but sadly some people still don't believe it's real, even though people have died from the condition including my good friend Emily. It's why I am determined to speak out and raise awareness of it.

From bed I run a little charity I set up called Post Pals which sends cards, letters and gifts to seriously ill children, the idea came after finding receiving cards helped me cope with my own illness. When able I like doing crafts in bed, listening to audiobooks, watching musicals online (virtual trips to the West End or Broadway) and having a good natter, however the majority of my time is spent curled up in total darkness and silence.

There is no cure, just symptom management- I take a big cocktail of drugs ranging from morphine to anti sickness tablets and I've been fighting for 4 years with the NHS for the funding for a 6 month stay in an inpatient hospital specialising in severe M.E but they keep finding excuses. Some people get better, some don't and it's impossible to say who will or won't but I will keep fighting! Getting the funding would dramatically increase my chances but who knows if the purse string holders will have a change of heart!

Often with ME what you see isn't what you get, you tend to see people only on their good moments and not the huge crash that comes after. A perfect example is this video of me talking about M.E on This Morning, although I was doing a lot better back then you didn't see me traveling laying down, being taken to the toilet by my Mum and transferring out of my chair and whipping off my sunglasses at the last minute (despite it being a dull winters day) or my immediate need to lay down after, and certainly not the 6 weeks it took to recover from.



I hope this blog raises awareness of the condition as well as putting some positive back into my life- thank you for reading and taking part.






I would love to hear or see pictures if you take part with any of my wishes and will read them on my birthday (21/12). My contact details are my30wishes@hotmail.com and Vikki C/O Post Pals, PO Box 278, Leatherhead, Surrey, KT23 4WN, England. Thank you