I am a teacher and finally finished work on Friday for the five week Summer holiday. Some of my colleagues have plans for travel to exciting places, but I’m mostly staying home and trying to save money. The weather isn’t exactly conducive to having fun, also, I can’t walk with an umbrella and my raincoat has a broken zip, but I’ll try my best!
I should have an appointment with the team in Sheffield in a couple of weeks and will find out if there is any chance of them treating me here. If that leads to nothing, I want to get myself to the clinic in Russia as soon as I can. This uncertainty makes life feel a bit in limbo and it’s difficult to make plans. Over the last few weeks I have wondered about trying to book a cheap last minute holiday while I’m off work, but it feels wrong to be spending money on such things until I know which direction I’m going. Not that I have much spare money – reducing my working hours by a fifth has obviously reduced my income by a fifth, so whilst that’s better for my health, it’s a lot worse for my bank balance! There is no system to support those with a disability or health problems who can still work, but can’t manage full time hours, although I have just found that I may be eligible for PIP (Personal Independence Payment) so will start the gruelling assessment process while I’m off work.
So, to HSCT in the news …
The profile of HSCT is rising all the time and it will soon be very difficult for neurologists to dismiss it, as some do now. I was delighted to hear this bit of news recently – the team in Sheffield have recently won the NHS Futures Parliamentary Award for their pioneering work on stem cells transplant (HSCT) to treat Multiple Sclerosis. Click here for a full report …
Pioneering Multiple Sclerosis Stem Cell team win national NHS future Parliamentary Award
Congratulations Professor Sharrack, Professor Snowden and the rest of the Transplant team ???
I have written before, about the Hollywood actress, Selma Blair, who was diagnosed with MS a couple of years ago and has spoken openly in the media and via her Instagram account about her struggles with the disease, coming to terms with the diagnosis, the impact on her life and her search for the best treatment. For the last few weeks, the content of Selma’s online activity has led many of us to believe that she was undergoing HSCT with Dr Burt in Chicago, and it turns out we were right!
Selma is in the early stages of recovery at the moment and I wish her well. Once she’s strong enough, I’m sure she will become a truly fabulous HSCT advocate ??
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As you know, we have paused our fundraising efforts for the time being, until we know whether further funds are needed, however, there is still some activity in the back ground and I was delighted to receive a surprise donation of £75 this week. The money came from a collection box in the Cash and Carry at Stephensons, so I’d like to say a big thank you to all their customers and staff.
The Cash and Carry is well worth a visit, even for those of us not in the catering industry …many kitchen related bargains to be had! Find out more here …
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In my last blog post, I listed 9 MRI scan tips and was struggling to come up with another to round it up to a perfect 10. Over a week later and I’ve thought of one!
10. DON’T start to cry when you are in the machine! You can’t move your head or raise your hand to your face, so the tears form two perfect puddles over your eyes …not comfortable at all and plays havoc with your mascara.
Hi Vicky, good to see your update.
Use Citizens Advice to help with your PIP application – I worked for CAB for 9 months last year and they are GREAT on this sort of stuff, and you can give them authority to manage paperwork and liase on your behalf – and engage with them by email/post / phone if needs be, once you’ve set up your relationship with them.
They may also be able to help with any other benefits/3rd sector support you’re entitled to but maybe not aware of.
What size raincoat are you? I have one I can send you! 🙂 (need your mailing address too, DM me on Facebook).
I am so sorry the MRI makes you cry: your piece was tragic and funny at the same time. Sending love. xx Cat
Thank you so much Cat
You are the second person who has recommended CAB …I’ll definitely get in touch with them.
I’m going to have a go at fixing the zip, so hang fire on the raincoat for now (but thank you xx)
I have only cried once in the MRI machine, quickly realised it wasn’t helpful, had a firm word with myself and pulled myself together!
I’m still hoping to get to the IoM over the next few weeks and would love to see you if I do …I’ll let you know.
Thanks again for your support xxx