This post comes mere moments after feeling like I had to defend my use of a powerchair as part of managing multiple co-morbid (horrible way of saying that it’s a chicken and egg thing trying to tease out what caused what problem in what order) disabilities and two neurologically based diagnoses. MS being the progressive disabling kind. The other just recently diagnosed based on genetic testing and putting a lifetime of cognitive dissonance into perspective – I am also autistic, but mask and hide very well in public – except when the great Fatigue wall and I slam into each other and then all bets are off because I do come undone in ways that horrify me after the fact.
My MS primarily presents in 3 ways. Increased muscle tone, and depending on which professional I’m seeing on any given day it’s either termed spasticity or increased tone. I think it’s clinically mild because I’m not yet rigid. I have mobility partially because when my muscles are at their most painfully tight – I am still moving them, stretching them out, massaging until I bruise myself on muscles that are hard as rocks, and massage therapists struggle to release – and sometimes they feel like they aren’t helping me because they didn’t manage to restore any movement to a muscle that feels like bone, but isn’t. It’s a constant, all day, move, stretch, release, masssage, try to ignore pain, take marginally effective medications and hope . I can now ignore a 7 on the pain scale – 8 is a slightly emotionless stilted conversation – 9 I can still speak tersely. A 10 and I have trouble speaking, my eye water on their own accord, My breathing is shallow but I can still force our words, but I’d really rather you shut-up so I can focus on not losing my shit because I’m really about to go catatonic, but I still won’t be wailing in pain. I don’t know what will make that happen, and I don’t want to find out. I only show up in an ER at a 9 (because maybe it actually is my heart when the MS hug is that crushing – it has never been my heart – at least not yet. The genetic anomaly I have is autism and cardiovascular problems, so I might want to consider going to the hospital earlier now that I’m 45 and my family history of heart issues means my genetics are against me.) The longer I am on my feet, the more tone (spasticity) creeps in and the harder my brain and body have to work to just move at all.
The second equally crippling is Fatigue. Fatigue is not tired. Fatigue is not momentary. It’s not fixed by a nap. It’s not touched by sleep. Fatigue rolls in like a thick pea-soup fog that I can’t think my way through. I can’t manoeuvre my way out of. It’s what I imagine swimming or walking through wet cement must feel like (not going to try it to find out.) My worst, and scariest moments with fatigue have lead to disorientation, confusion, and an inability to process my surroundings, and an complete failure to keep my masks in place and appear normal. All my practised smoke and mirrors vanish, and all the things I keep in check come out for all the world to see. It’s not pretty. This is the biggest what came first the life long struggle with Major Depressive Disorder and Generalized Anxiety Disorder? MS? Autistic burn-out from having to mask in the first place? I don’t know. I do know I never want to allow myself to ever get to the point of delirium ever again.
Lastly, at least in my books, is the coordination issues that might be a result of the spasticity – might be it’s own damned thing on top of the other things, but again it doesn’t really matter because it now takes thought to get my extremities to behave in a way that’s functional to do things like eat, cut thing up safely, walk in a reasonably straight line – not fall over and scare the crap out of other people. Me I’ve always been a little clumsy and uncoordinated – I’m used to laughing at myself. Apparently not everyone shares my humour with the wonkiness that is me. The coordination issues have just become more pronounced, and more funky weird as MS progresses. I’m semi-officially SPSMs (It’s been suggested only in my clinical records, but not in such a way as to exclude me from any new treatments )
I hope that all of this explains why I’m a walking wheelchair user, but if not, here’s the best way I can say it:
The longer I’m on my feet the more spastic I get. The more I’m fighting my body to move the more exhausted my brain gets, and then I can no longer regulate socially (autistic), the more I burn out, the more depressed I get (life long challenges with diagnosed Major Depressive Disorder.) The more I can’t read social cues the more social mistakes I make – the more anxious I get (Generalized Anxiety disorder.) Then the fatigue wall sets in and everything becomes an effort. The problem with the EDSS scale is it doesn’t take into account spasticity. It only takes weakness and paralysis into consideration. I’m heading that way (SPMS) I have major coordination issues. Everything takes more effort to control. My left side is a mess… so a manual wheelchair won’t work (I tried before the OT convinced me the effort was not in my best interest. 3 weeks in the Rehabilitation hospital in 2017 was an education in pacing that I am only now taking seriously.) Every day is an assessment: Is today a trekking pole day? A walker day? Wheelchair days are truly horrible days – or I have to be out and about on my own and need to take the cognitive load off so I can enjoy myself or have the energy to deal with whatever it is I have to do. The fatigue truly scared me when I started getting disoriented and confused because I was just that physically and mentally exhausted.
I “only” have an EDSS score of 4.0 – which by all means I should be a free walking person. I am not – not even close. It’s a measurement scale that really takes a very limited view of total disability. I used this scale as justification for a lifestyle that took no consideration of my overall disability load from multiple sources and I “ran” with it until that Fatigue day that shook me into the realization I had no ability to continue. I was done. A new way had to be found. I still don’t know what that new way is. It’s taken 1 year 6 months to get this much perspective. Reinventing myself is hard work. I can walk. I want nothing more than to put mobility equipment behind me. I am learning to be grateful for the tools I have at my disposal to live a happier, gentler, and more accommodating life for no-one other than myself.