I think I just need to rant.
I’m part of a clinical research trial, which is what originally diagnosed me with MS before the NHS got around to doing an MRI.
It’s been 6 months since diagnosis and 2 relapses (the first was optic neuritis and the second was right numbness)
They’ve both mostly remitted. I get blurry right eye vision when I’m tired and stressed, and the right side will probably never feel 100%, but I can use my hand again, so I always look to the positives.
I’ve had such a fight with PIP. I was given lower mobility and appealed. My appeal was rejected and I now have to go to tribunal.
It’s just such a nightmare. I hadn’t envisaged that I would have to struggle so much to get help.
I was down for a follow up MRI and for some reason, I’m worried about the progression. I know it’ll show progression, because I’ve had a relapse since then, but it’s the not knowing what’s going on inside my own brain that’s so worrying. It’s also making me anxious about things I cannot control; which is both counter-intuitive and not me.
My normal way of looking at things is ‘that which I cannot affect, I should not worry about’.
But all of a sudden, I find myself questioning why the neurologist checked my heart rate and pupil dilations as the only two tests performed. Does he know something I don’t? Am I progressing faster than one would have hoped? It’s nonsensical and verging on paranoia, but it’s very real to me.
I now have a ‘few weeks’ anxious wait until the results are in from radiology, as if it makes any difference. Then what? I’ll obsess over the new lesions? It’s pointless and exhausting.
I spend far too much time worrying about things like feeling slightly dizzy or not being able to hold gaze. When I should be focusing on the fact that I can live quite independently, study, have full control over my bladder and bowels, eat and sleep well.
I think it’s stress related. Anxiety is just a manifestation of stress. I have a university deadline in 9 days and some family issues which are very bothersome. I think I’m taking it all out on myself and working myself up about nothing.
The MRI will show what the MRI shows and nothing can change it. Nothing can change what’s going on and what’s happening in my brain. I can deal with anything that comes along and accept it as part of the existence I have and am lucky to have.
The PIP appeal just needs printing and sent on to the courts. When the decide what I’m entitled to, I should trust that’s it. It’s the last line of appeal and they are impartial and separate from DWP, so I just have to accept what they say.
I’ll crack on with studying and get it over with. I’m can do the material and should be thankful for that.
These things though. They build up and can feel both overwhelming and isolating. This is not ‘battling MS’ this is life in the only way we know and have it, so it stands to reason that we should simply get on with it; changing what we can in order to better our position - and importantly, letting go of what we cannot change in order that we can focus more on what we have.