As some of you may be aware, I’ve been having a break from the forums. What most of you probably aren’t aware of is that it because of the Limbo forum (now renamed New Diagnosis and Before Diagnosis).
I hope you will bear with me because this might be long, but I have a very important request to make of you all.
I first started posting on EL about 2 years ago when my MS decided to up its game and I had to give up my job completely. Soon after, I came across Limbo and saw loads of questions, but not very many answers. So I started trying to help. Over these past 2 years, this “helping” grew to become, in effect, a job: answering virtually every post and loads of private messages every day. Then, about 10 days ago, someone picked a fight and I fell for it, hook, line and sinker. Whatever their motivation, it was a long overdue wake-up call for me and I decided to have a break and work out whether or not I should even be on there.
I’ve been talking to friends about the whole thing, one of whom said “it doesn’t matter” [if I’m on there or not]. The thing is, it does. It matters for a lot of reasons.
It matters because I remember what it was like waking up one morning and wondering wtf was happening to my body.
It matters because I remember telling the nurse in A&E that I’d recently had a lumbar puncture because of suspected MS and her looking at me in disgust, sneering at me that lumbar punctures were for meningitis and then flouncing out, leaving me there without any help for hours.
It matters because I remember crying my heart out in the hospital car park after seeing the consultant.
It matters because I remember being utterly terrified of the future: of wheelchairs and incontinence, of my husband perhaps not staying, of having to give up my career and my hobbies, of not being there for my children.
It matters because I remember being in dire need of help for pain and fatigue, but my neuro being worse than useless and there being no one else to give me any advice.
It matters because I remember being utterly bewildered and lost and lonely, but having no one to talk to. There being no one to tell me, “Hey! I’ve got it too. It’ll be OK.”
It matters because Limbo is full of people going through things just like that; just like the things that you went through and are still going through too. Most of these people don’t have MS nurses or friends with MS. All they have is the forum. And if there are no experienced MSers on there, who will tell them that it will be OK? Who will explain what to do when their GP tells them it’s all in their head? Who will make suggestions about how to deal with symptoms? Who will explain what the letters and test results mean? Who will tell them the practical things about DLA and Wheelchair Services and physio, etc?
I know more than most people on here about MRI and the brain. I do not know more than most people on here about the rest. I’ve been doing my best, but it’s too much. I can’t do it any more.
Please, please, please spend a bit of time on Limbo as well as on EL? Please help me, and the few other experienced MSers who go on there? We can’t do it alone. And it matters. It really does.