The Fun Fortnight!

These two weeks (the one just gone, and the one starting), I have an inordinate number of hospital appointments. I had four last week, and three more (plus the dentists, but that doesn’t count) this week. Oh and two more the week after that. So not many then, really…

Last week’s appointments were Orthotics, Physiotherapy, CBT/Mindfulness Assessment and Neuropsychology Assessment. The last two are appointments I’ve been waiting for since I first saw my MS nurse, which was about 6 months or so ago, so it’s good to finally get them out of the way. It’s all been a-go though. I got a ‘foot-up’ walking aid from Orthotics, a promise of a foot clinic referral from the Physiotherapist, then the really fun bit starts.

When I turned up for the CBT Assessment, I was given one of those ‘how much do you agree with these statements’ questionnaires, that you always get whenever you have any interaction with the mental health profession. So I duly filled the form out as honestly as I could, and handed it back to the lovely CBT expert lady. I can honestly say she looked shocked when she saw the form, because my referral from my MS nurse had said I don’t have any mental health issues, but apparently my form tells a different story, and gives me a score of 12, which means I have mild to moderate depression. Whoop-di-doo...

As she said all this, I started welling up (as is my wont), and she said, ‘oh dear, now I’ve said the wrong thing, haven’t I?’ So I sat there for most of the hour-long session, explaining about various things that have been trotting round my head and keeping me awake at night, and she explains that with the initial referral, I wouldn’t have been eligible for full CBT, only a ‘mindfulness’ course, but following everything else that I told her, I probably also have PTSD, and CBT is very definitely on the cards. It wasn’t quite my intention when opening up to her, but it’s definitely a good outcome. I’ve heard lots of good things about CBT from various friends who have had CBT, so I’m actually looking forward to the first CBT session next Thursday (appointment 3/3).

Then appointment 4/4 from last week was the Neuropsychologist. So I zoomed down the motorway to Preston, and filled out another of the ‘how much do you agree with these statements’ questionnaires, trying to remember what I’d put in the morning at the CBT clinic, so I could try to be as consistent as possible (since I didn’t really feel like I’d changed my feelings in the intervening hours). Eventually my appointment starts, and I meet the Neuropsychologist. I explained to him about the cognitive difficulties I have, like not being able to remember words (I did a post about this a while ago), and words playing silly games when I’m trying to read, like swapping places with other words on different lines. I told him how my memory has got worse, and my attention span has all but disappeared.

Then finally, he tells me something I’ve been waiting to hear for years: the cognitive issues I’ve been having AREN’T just me imagining things, or going mad, and they ARE consistent with the sort of cognitive issues that you can get with MS (despite what my neurologist told me about that being something that you only usually get once the disease is far more advanced than mine). *huge sigh of relief* I’ve been trying to tell people this pretty much since I went back to college. I mean, I got stupidly good GCSE results, considering I did *zero* revision for any of them (I even got an A in Maths, and I’ve never been good at Maths…), then I worked stupidly hard for my A levels, and came away with 3 measly B grades, and I only scraped them, at that. Admittedly there was a 3 year gap in between my GCSEs and my A levels, in which I was working full time, but regardless of that, I couldn’t work out how my grades could have been affected so significantly.

Now, it’s not as simple as that’s just the diagnosis and that’s the end of that; now I’ve got to wait (potentially quite a while – bearing in mind that it’s taken 6 months to get this far) for further tests to quantify what I expressed to the Neuropsychologist, so that they can rule out any other factors. This is definitely progress though. Hopefully this means that the exam board will look a bit more favourably on my results for this year, which would be nice. And I should be able to get a bit more support from my Dyslexia tutor.

I hate feeling like I’m using my sort-of-ill-health to my advantage though. I don’t consider myself disabled, although I do admittedly have a debilitating condition. Equally, I also dislike the sure knowledge that I am capable of far more than I am achieving, but there are invisible barriers and trip wires all over the place, preventing me from displaying the intelligence I know I have. I know that makes me sound like a stuck up intellectualist, but that’s not quite the point. The point is that I *know* that I can do better, because I *have* done better, and I *know* that there are things that I should be able to do, like writing a coherent essay, which I struggle with now, and that’s probably one of the most frustrating things to have to deal with. Ever since I had Optic Neuritis, just before I started university, I’ve said that the worst thing that I could lose from the MS would be my ability to construct and convey a coherent argument; to be able to understand complex theories and ideas, and apply those to my reading. And that’s what it’s felt like I’ve been losing, and I’ve felt like I’ve been going mad at the same time, because I had nothing to prove that I ever had those skills to start with.

This week’s appointments are: Occupational Therapy on Monday morning, Neurologist on Tuesday afternoon, followed by the Dentist, and then my first CBT session on Thursday morning. I wonder what the rest of the week will bring…

In other news, after having put weight back on over Christmas, I’m happy to report that the numbers are going back down again. I’m getting back into my bi-weekly aqua sessions, and I’m going to book a gym induction session during the week, so I can start doing some specific exercises that my Physiotherapist has suggested. Fingers crossed that I can make significant progress over the following months…