I am the Walking Wheelchair User. I am not a Fraud.

Me in my wheelchair. The only visible parts are pat of the footrest, a corner of the black cushion, part of the right arm rest, a view of the corner of a grey shirt and beige pants.
Description: Me in my wheelchair. The only visible parts are pat of the footrest, a corner of the black cushion, part of the right arm rest, a view of the corner of a grey shirt and beige pants.

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.

The facts

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.

I Got Lost for almost a Year

Image Description: Orange Cornish Rex Cat Staring with wide clear green eyes at camera. Only face and shoulders are visible. Instagram link to my cat Dobby because he’s just lovely.

I’ve been lost in my head for another year.  Trying to articulate this need to share my experience in the hopes that somebody out there can use it to fuel their own stories and life. It’s difficult to build a following when my own voice is being strangled by fear. Fear of what the internet has become. I’ve been online since the very beginning of the Internet as a place beyond education and research to something social. It has changed to something where it appears that only extremists, the intolerably opinionated for the sake of being right instead of being understood are the only voices adding the fray. It’s become a place of intolerance instead of attempting to understand the views of others without necessarily aiming to change the other person. Maybe I was really lucky early on to have an initially fun, radical, and supportive introduction, and that’s why my shock at the divisiveness that seems to be everywhere now. The predominant emotions being anger, fear and hopelessness. We’re becoming so self-protective. It feels like inclusion and connectedness is becoming harder to achieve. That the haves are bitter that have-nots being it from diability, to poverty, to exclusion on prohibited grounds of gender and race for dare asking to be included. I’ve seen more than my fair share of people screaming “Why does the majority have to spend money/time accommodating the embittered few?” And so it’s added one more strangling hand to my throat and hands typing away at this keyboard in from of me.

Who am I to want to reach out? Why do I think I matter enough to add my voice to the already crowded, noisy angry din that’s already so loud, and so blind and so snarly that I’m not even going to be heard to begin with?

Because I am more than what’s happened to me.

Because I know in the deep recesses of my soul that finding a way through is my gift.

Because the only way I get through is by believing going through all of this is useful somehow.

Because I still have a voice even if it’s small.

Because I am not an inherently angry person, and I can listen to divisive opinions, and have wild conversations with people without judgement. Listening doesn’t mean acceptance. Discussion doesn’t mean my opinion will change especially when the topic is something that hurts others. Finding the commonality and starting there builds reconciliation and trust.

Because sitting with hard emotions and hard content again doesn’t mean acceptance, but it does lay a foundation to trusting that no matter what comes up we’re stronger by acknowledging, talking about the reality, and finding ways to change

That all change comes from working with people where they are and knowing that my gifts still exist even though MS is turning my body into something that is unrecognizable to the spirit still living in it.

Am I back? I don’t know. I just know that my silence is becoming a prison. I just don’t know where I want to go from here. I can’t say that this is my rising. It is simply that I have to be greater than my fear, so I press publish now to reclaim my voice out here.

Edited for clarity June 14, 2019

Quiet Introductions

I don’t think my intended re-introduction to my blog was meant to be so angry.  No,  I can say for certain that it is not how I wanted to come back to writing again.  The thing is – it had to be that way for me to get out of my own way to be ANGRY enough that I couldn’t silence my voice any longer.

I’m not an angry person, though.  I’m a quiet person. I’m an observer. I find patterns, and then I dissect the elements of those patterns, especially watching human relationships. Wondering about each piece and each player, and more often than not berating myself for my failings in making the situation worse or  the ways I could have done even better.

I actually don’t like having the impetus of anger be the thing that makes me roar.  I’m a collaborator. I like deep discussions for mutual understanding. If you have a point of view that you’re so fiercely protective of, I am more interested in what brought you to hold that point of view so strongly. What in your experience made you believe that, and would you be willing to listen to how my experience has brought me to mine.

How about we talk about what’s very real in our lives and hearts right now? I’ll go first.

MS has brought me to the precipice of Secondary Progressive MS (SPMS). Officially I am transitioning from Relapsing Remitting MS (RRMS) to SPMS.  I’ve known this in my own heart since 2015, but now it’s in my chart as assessed by my neurologist Dr. M .  I  haven’t been the easiest patient for her to care for because my distrust of doctors runs deep.  This has meant that until this year the last Disease Modifying Drug (DMD) I took to try to prevent further Relapses was Gilenya. I was part of the study before it was approved, and the study unfortunately deepened my distrust of  the medications that are in my mind barely effective (anything less that 50% effective – and I’m just not willing to risk my other organs.) If I want to still be eligible for anything that’s new, I have to hold on to this transitioning status as long as possible because the truth is once I’m in the Progressive category there’s not a whole lot available to treat,  Which has meant I have agreed to take Mavenclad (cladribine) to try and hit pause and stop the steady slide down the disability scale (Or is it up? because the numbers on the scale ascend?)  I find the Expanded Disability Status Scale skewed on the whole walking portion –  because I am a part-time power-chair user and at an EDSS of 4 – if you asked e to walk 500 m without aid – it’s not happening without  a significant chance that I will fall, or not make it because my legs have tightened up so much making walking excruciating – zombie shuffle?

Mavenclad is a “mild” dose of chemotherapy.  I have finished the first year’s doses, and I’m now waiting for the blood tests to show my lymphocyte counts have started regenerating that blood test is at the end of September.

It wasn’t completely MS that forced me onto Long-term Disability, and it wasn’t the rigors of Mavenclad, it was my even bigger life long Shadow, Major Depressive Disorder with its side kick of Generalized Anxiety Disorder that made me realize something had to give because I couldn’t cope any longer, and I gave in to what my doctors had been after me for years to do – stop working. I want to believe that this isn’t permanent LTD.  My “job” was never work in the sense of dreading the 9-5 day where I sold my time for a salary.  I liked my work, I loved the people I work with, sure there were crappy things that sucked, but they never were bigger than the fun I had doing my job and when the job was up against impossible deadlines the people made the craziness worth it – every time.  I went into IT, something I had a natural talent for,  and it was fun.  Having to walk away because my body had decided to go off the rails IS infuriating to me.  But that’s just it.  Until my last day mid-February I was living beyond my body’s coping capacity.  It took 3 very serious conditions to get me to pay attention and realize I couldn’t keep it up any longer.  I still hope to find a way back to my career.  Mavenclad  however is a two year + 1 year immune system recovery and after June and July’s treatment this year – there is no way I can do this treatment and work in a meaningful capacity.

I’m still railing against all of it.  My fatigue levels are too high to do much of anything right now, and that is frustrating me. I struggle with figuring out how to contribute whatever it is I can contribute to something, but what? If I can’t get back to the career I love what do I have to contribute to? I didn’t realize the castle I was building was a sand castle, and that the tide was due to come in.

So now I have to build a new castle that includes and makes space and room for all of me – currently broken body and mind – to find a new way to learn to live within this body and with this brain that had it’s fair share of traumas – which I have never acknowledged or really integrated. I need to build a new home and a new life.  I don’t even know where to start.  This isn’t the first time I have had to start over, and it probably won’t be my last.  This one is by far the toughest because this time I really have to face myself.