MS sometimes feels like a ladder.
Six years ago, it felt like I was somewhere around the bottom, in the murky depths, desperate to get a handle on the slippery first rung towards diagnosis, treatment and, well, ‘thank goodness I now have an explanation for what the hell’s been going on for the last year‘.
I spent hours and hours on the MS Society forums, asking question after question. Patient people who had been there before answered every niggle, every question, no matter how weird it sounded.
They reached down and pulled me up and I will forever be grateful to them for their guidance and support.
Limboland is a cruel place to be; essentially, you wait there in the ‘hope’ you have another relapse and are then moved from a single episode to ‘multiple’. So, you pray to get worse, to get better, because it’s only then that you can access the treatment that will potentially stop the next relapse.
I vividly remember the elated posts from fellow ‘Limbolanders’, ‘Finally!! I’m diagnosed!’ I was envious beyond belief and confused in equal measure. How can you be so happy to have MS?
I soon found out.
Like a magic door opening with a secret code, my eventual diagnosis offered up a myriad of treatment options.
Next week I’m taking a day off work to train with the MS Society as a Support Volunteer. The focus is firmly on the social model of disability, which centres upon choice and control.
I hope to learn skills which will allow me to reach out to pre-diagnosed people and those who are newly-diagnosed; I want to learn how to offer non-directive support and take on board an individual’s unique circumstances without judgement.
I’m looking forward to the course and giving back at least a tiny bit of the support I received all those years ago. If I can ease someone’s journey into life with MS, I’ll be over the moon.
Volunteering often sounds like a massive commitment, and I will be honest as to how much time I can offer, but it could be as little as one phone-call a week, or one quick coffee. Hopefully I will be able to offer more, but if anyone is thinking about volunteering, go for it.
I’d love to meet that one particular person on the MS forums (amongst many others) who took me through, step-by-step everything I asked, with her incredible medical knowledge.
I probably never will, but the one thing she said to me is, ‘if you found help in what I have offered, do the same, when you are ready.’