Now I knew of HSCT as something new and exciting in the MS world but what I didn’t know was how good it was and how achievable it was to get.
Joining all the HSCT groups I could asking all the questions I could researching. I thought to myself, no I won’t be able to have this, no one will say yes to me. I saw that ordinary people with MS just like me were standing up and saying hold on this isn’t a cure but its near as close to it and I want a piece of that pie, and I thought yes me too I want my life back. I’ve forgotten what it was like to be normal, having a night out with my friends and not cancelling at the last minute because I wasn’t well enough. I want to see and do things like everyone else.
I work part time so I’m not sat on my backside but still come home each day so tired that I am only fit to sit and rest, leaving everything to my husband to do.
And so I read some more and told the husband what I was going to do.
I read about how to start my journey.
Get a fund raising team – check
Get a fund raising web page – check
Start applying to all the clinics around the world – check
One by one the clinics came back and said no. You need to be a resident in our country. You need to be this type of MS. Even my own GP refused to refer me to the NHS for it here in the UK – I was told to expect that that the GP would not be helpful.
I had an email from Russia. Fill this in, they said giving me an application form. So I did and sent it back, and they came back to me and said YES. YES YES YES! Although the 2 year waiting list is now closed but I’m on the list I can wait a little longer gives me time to try and fund raise for this.
And now the hard work starts.
The thing i dread the most is asking for help. I hate asking, I feel cheeky even thinking of asking for help. BUT I have to do this part of the battle and I can’t do alone. I’m not rich, I don’t know anyone who is, but i do have some supportive friends out there who have stepped up and seen the determination I have. The procedure will push my body to the furthest limits I will ever know. Writing this blog will push my mind as the my cognitive skills have deteriorated, my husband will check this and look at me and tut, too many commas, grammar all out the window, but for now its all about tell you guys what is going on.
So my first event… my employers have allowed me to make and sell homemade fudge. I made some at Christmas and everyone loved it and when i asked if anyone would buy it i had positive feedback, will post pictures when that happens.
Just come home from hospital, having emergency surgery, not MS related but because of the MS my recovery will be slow, too slow. I need to get back to work – no work no pay, no pay no bills paid. I so wish i could win the lottery, I could have this treatment sooner, and claw back my life.
I’ve order some funky food flavors for the fudge. I bought and ordered 10 they only send 9, yeah that’s my life always short changed by someone! Better get the chef’s together to start creating this stuff.
Thankfully i have a loving family who support me and some great friends.