Hey everyone, it’s been a long time since I gave an update on how I’ve been doing since my stem cell transplant 4 years ago.
Well actually it was my stem cell birthday on Monday, where this time 4 years ago I underwent a stem cell transplant and received my new stem cells back to me through a blood transfusion. This was meant to be the best treatment available that would help me in my fight to stop progression of my illness.
I always knew, the transplant was not a cure and that maybe I could be one of the unfortunate ones where it wouldn’t help me or stop my progression.
Well I’m sad to say that unfortunately for me, my illness slowly progressed over the 4 years and made my mobility worse.
In the past year I’ve had many obstacles arise which has caused me to stop using my walker (which I was previously using). It means that I now heavily rely on my wheelchair. This in turn has made it difficult to stand, transfer and even keep my balance unaided because I spend a lot of time sitting. In the wheelchair and my legs are becoming weaker.
I’ve tried to get back into walking with my physios but after trying and many discussions, we all agreed that it was going to be difficult to walk as my legs do not want to communicate with my brain to lift them. It’s most likely nerve damage that causing this.
I’m constantly reliant on my husband who is now my full time carer because I need help even getting to the bathroom, which means I’m not left at home alone for more than a few hours.
Between my husband, daughter and family, I’m very fortunate that I always have the help and support I need, both physically, mentally and emotionally.
I still continue to do my stretches and exercises, use my therapy bike, practice standing and more. I feel if I don’t do these then I will only become less mobile. You know what they say ‘if you don’t use it, you lose it!’
Anyway, I just wanted to share with you how I am, as I know lots of you have been asking and I know I always reply with ‘I’m good thank you 😊’ (it’s just my natural response like most people)
Even though I struggle with day to day life, one thing I’m grateful for is that I am still able to SOMETIMES do things for myself without asking for help. I’m grateful that I am able to eat without choking, sleep in the foetal position, go to the toilet myself on the odd occasion, lift my legs into the bath and lots more.
I may not always be able to do these things independently everyday but the days I can, makes me feel great, because it’s the small wins that count.
How do I stay positive?
Don’t get me wrong, I’m only human, I do sometimes cry and hate the life I live!! I do get frustrated and angry!! I’m so glad so say these days are few and far between. I always remind myself how lucky I am to be able to do what I can.
I’ve made many friends along the way with my 20+ years with this awful condition and have come across so many different symptoms. Some people have pain, some have been in a wheelchair soon after they have been diagnosed, some can’t eat solid food, the list is endless.
My coping mechanism is to be grateful for all that I have.
Most people go through problems, be it emotionally, mentally or physically even though they may come across as perfectly normal.
With this in mind, it’s easier to deal with your own problems when you acknowledge there is someone out there who is going through tough times a little bit more than you.
I hope you find that this insight to my life inspires you or helps you to appreciate life. I hope that it helps my fellow MSers, gives hope and comfort and to see this life we have in a different light.
Love, peace and good health to all xx
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Негізгі бет How I am now, 4 years after my HSCT Stem Cell Transplant - UPDATE
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