wheelchair

In the Face of Failure

Content Warning: Hard truths about MS, Psoriatic Arthritis, Ankylosing Spondylitis and physical losses associated with them

Mavenclad failed. My neurologist won’t say it, so I have to. It is difficult for me to write this because recent changes in my disease progression scare me. I’m not angry. I’m nothing. I want to rage against the further loss of my ability to walk. I can’t tease out which autoimmune condition is causing what. I actually think they are tag teaming this one. The Psoriatic Arthritic hip and SI joints are causing spasms across the SI joints and upper thighs which eventually collapse me – yes it would be “falling” but I’m usually not far from a chair, or I’m spending more time in my wheelchair because I have no choice any longer.

I’m losing sensation, mostly on my left side. I had a small 2nd degree burn on my left index finger from accidentally connecting said finger with a mental baking sheet from a 425°F oven. I felt the initial burn, but I did not feel the pain from the actual burn afterwards at all. It was the weirdest thing. I’ve burnt myself cooking many times. I’m somewhat klutzy in general, always have been. It’s not uncommon for some kind of accident in the kitchen – I have a saying for any project I do “If I don’t bleed at least once during the creation process, it won’t turn out.” Not feeling a burn is a dangerous thing. I have a naturally high pain tolerance, but that doesn’t mean I don’t feel it. It just means that I don’t acknowledge it until it becomes incapacitating and even then I stand up and push on. I’m waiting for an MRI that includes my Thoracic Spine to see what’s happening. I rarely have changes on my MRIs my existing lesions are in areas that also explain what is happening. Secondary Progressive MS is a constant acceptance of loss.

It’s not all bad news. I think I have found an Arthritis treatment that seems to be working. Took longer than I expected to get the GI issues to calm down. They were uncomfortable and I almost quit on Xeljanz because of it. I am waking up with what I consider to be background pain that mostly goes away after I get moving – except that back, hip combination which tries to floor me, literally.

I am beyond fortunate that I have been able to afford a new powerchair that will accommodate any and all changes that I am now experiencing and I am excited for the arrival of my new chair. It will be “fully loaded” – all of the bells and whistles so to speak – except maybe the ability to have turn signals – I don’t think it will come with that. I didn’t specifically ask for that. Mine will be in Aqua – it was such a difficult choice. I almost chose the Canary yellow. I will be able to move up to counter height, tilt forward for extra reach of shelves in fridges or to fit my legs under tables. I will be able to tilt and recline and adjust my chair to the angles I need to make space in my ribs so I can breathe easier (spasms and pain from Psoriatic Arthritis and hypermobility are the cause) . It will be a chair that supports the new Me, and future Me for quite some time. Still have to file the paperwork with my insurance company and we’ll carry some debt for awhile – but I won’t have to add anything other than seating changes as long as I maintain the electronics. My current chariot will be kept for rugged yard work – or camping. I will clean it up and likely donate it if my new chair proves to my husband, D, that it is a viable replacement – he’s not convinced because it is a mid-wheel rather than a front wheel like my current chair. I wanted something more house friendly since I will be spending a lot of time sitting in it.

Permobil M3 powerchair in Red. Mine will be Aqua when it arrives.
Permobil M3 powerchair in Red

What can I say, 2020 hurt us financially for awhile, but we’ve clawed our way back. D’s job was dicey, but they’ve managed to survive, and he’s back to full time work. I’ve been able to restart my membership with the MS Gym . I haven’t been able to find anything that equals it for explaining the importance of exercise nor breaks the exercises down into manageable chunks. While I was unable to afford the program from almost a year, I kept trying to find something free, or working with physical therapists or occupational therapists and nothing has been as good as the MS Gym. I’m working through the Reconnect program to fight as hard as I can to not lose more. Trying not to lose hope and keep plugging a way.

I spend a lot of time feeding the birds. D helped me plant all of our gardens this Victoria Day weekend. I can’t wait to see all of the little seeds sprout and the seedlings we’ve planted grow larger and produce fruit, but that’s another post. These keep me connected to the joy of life in spite of the hardships of a failing body. The past few days have been hard for me because I’ve been slapped repeatedly by my limitations that are a result of disease progression and not a lack of effort. Today I am down. Tomorrow I get up again.

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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.

A Former Able Body Can’t Stay Silent

I’ve been waiting for the spark that could possibly bring my words back to this space here on the Internet. I’ve been trying to figure out what I wanted to say as means of a re-introduction to blogging.  What is my intent for this space? Who do I want to be in a world of competing egos? Does this even make me a competitor when the last thing I really want is another competition and what I crave is actual conversation and a chance to try and understand differing views without name calling or anger? How do I build that? I don’t have an answer to any of these things. I keep coming back to “Start where you’re at, and just start.”

So today my re-introduction to this space is to begin again where I’m at. Today I am frustrated, angry and that’s being fueled by an exhaustion caused in part by Multiple Sclerosis,  inflamed by Major Depressive Disorder, and made all the more fun by Generalized Anxiety Disorder that clouds my reason when I’m just trying to be a reasonable human being getting on with this thing we call living. I’m also in the midst of a pretty powerful new “chemo-light” treatment called Mavenclad for MS. It’s sucked any remaining energy I had so I feel like an exposed raw nerve all day every day because I don’t have energy at all for anything extra. I try to take care of my fellow person – whether I know you or not if you’re somewhere in my sphere while I’m out and about you’ve been seen and acknowledge by me as someone should things suddenly go sideways you’re on my list of people I will go out of my way to help because like me you’re a person worthy of the same life and liberties I am. I just see a human. Always have always will.

I remember what I was like when I was a free-wheeling able bodied person. I also know that I was raised that community comes first and we’re only as strong as the weakest amongst us – I don’t say this is a bad way. I was raised to be aware of the people who struggle to do the very things I take for granted, and to help or offer assistance when I could, and above all protect those who need protecting.  Before I had a name for the things that were falling apart for me, I made it my duty to become personally aware of the challenges faced in modern society for those of us who had challenges with mobility, sight, hearing, intellectual processing difference, so that I could dismantle my own biases and hidden discrimination that I didn’t know I had until I took the time to look at myself.

Before disability became so very real in my world, I joined committees raising awareness, and changing the way the workplace viewed disability and accommodated so vibrant brains could still contribute their wealth of knowledge and experience while managing challenges that shouldn’t be barriers to working. I opened my eyes, and I am far from perfect. I was willing to work on my own incorrect thinking and taught beliefs that are outdated or never should have been dated to begin with. I have to be part of society too.

Now that I’m faced with worsening disability.  I struggled to get back to work from a MS flare that landed me as a part-time powerchair user in 2015-2016.  I managed to get back to full time employment for one year before MS and ultimately a wicked flare of Major Depressive Disorder that almost cost me everything put me back into Long-term Disability again.  I don’t know if I will get back to work right now.

I can occasionally walk without a hint of the spasticity issues that wrack my body around my house in the morning, and on rare days into the afternoon, but the zombie shuffle becomes normal after that, and then the balance issues that follow makes walking around my house unsafe… I could take pictures of the bruises my stubbornness at giving up walking has caused. Out in the real world, if my husband is with me, you might see me with my walker if it’s a short trip or frequent stops because manhandling the travel scooter is such a pain in the ass – even though my husband never complains.  I can see how much of an impact that my changing disability is having on those I love, and it rips my heart to shreds. I try to minimize my impact often to my own detriment. There have been a few scary moments where I’ve nearly fallen with my walker and I am only thankful that sheer force of will kept me upright. I know the day is coming when leaving the safety of the chair isn’t going to be an option whether I have the strength for walking or not.  It’s okay. I was adamant about the musts for my chair before I even sat in it.  There are things I dislike after spending two years driving it around, but those should be changed shortly, again increasing disability is making a lot of hardware upgrades necessary.

I do love and appreciate my chair more and more.   I do not love trying to navigate an impossibly abelist world, and I’m having to fight my mental illnesses harder and harder to not become a shut-in hermit.

People on feet are dangerous. People on feet are incredibly oblivious to their surroundings. I also realize that the traumas I’ve sustained in my lifetime have left me far more vigilant about other people than most. I’m hyper aware at all times of a lot of things that other people don’t seem to be. I try to account for that when making these statements.  People on feet are so unpredictable that I’m usually an anxious wreck vowing never to leave my house again to get groceries or shop for anything.

The number of people who seem to think my chair is nimble and can dodge people on feet is crazy. I drive reasonably for the conditions. I’m not a speed demon, and I respect the rules of being a responsible pedestrian as best I can to the conditions I’m faced with.  Powerchairs are not nimble.  They are tanks. They cannot stop on a dime, they cannot dodge quickly. In fact I’ve played with the controls on mine to see what is possible – and sorry to say there’s an awful lot of programming behind the scenes to control for tremors and shakes that prevent the machine from being responsive to light changes of direction. I’ve tried, so it now is up to you able-walking feet people.  You can’t play chicken with me. I will win and you will get hurt because guess what your legs are far more able than my chair to move to the other side of the sidewalk.  I follow traffic laws. I am always on the proper side of my given route at all times. If you are walking towards me in my lane… chances are you need to move over.  Except when I’m clearly in the wrong it’s usually because of a hole, or a heaved sidewalk that will damage my chair, or I have to be slightly over to left more because if my chair falls off the sidewalk me +600 pounds of chair would be a world of hurt for an extra inch of needed space to be safe.

Don’t yell at me if you’re a phone Zombie and I rings bells and firmly state for for to get your head out of your phone and pay attention to where you are walking.  I’m paying attention. Chances are I still can’t dodge you due to prevailing pedestrian traffic around me if I’m calling to you to be present to what you are doing. You’re walking in a world… your phone can wait. Really it can. I have one. I spend way more time on it than I should. When I’m engaged in getting from point A to point B – I am not on it. Or if I have to take the call using a device that keeps my hands free and one ear listening to what’s going around me,  and my eyes fully engaged with what’s happening around me – at all times.  If I can’t be safe to myself or others, I find a safe out of the way location to pull off and deal with whatever panic the phone has brought in that moment. I don’t just stop my chair in the flow traffic without warning.

This isn’t even about how inaccessible everything is from stupid racks in the middle of store aisles making it so narrow I can’t get through without damaging store displays. Or drug stores that think wheelchair users don’t want to wear makeup (Pharma Plus and Shopper’s Drugmart are the worst offenders for being inaccessible most of the time) and the make up aisles are full of bins, and pop-up displays that make it impassible for feet walking folks with carts. I will move displays, and make messes on days that I’ve had enough of not being considered in layout designs…. mostly I’ve just stopped shopping altogether but I miss it. I really do. I used to love shopping for my family. Now it’s a chore that ends in frustration and tears.) I am loud and appreciative of any store that is wide open with ample space to shop and be independent on my own until I need assistance.  If I can’t even wheel in the door it’s a hard pass. Look at your doorways mall stores… look hard…. you have no idea the hundreds of dollars you’re not making just by making it impossible for people like me. I’m fortunate, for now, I’m one of the lucky ones that still has income to speak of. That may end in the future. I will face that when it comes.  It’s actually not that difficult for basic inclusiveness.  Have stairs  that mean people can’t get in without a ramp? Buy a bloody ramp and have a bell to ring or a way to get it deployed. One organization I deal with has this. They’re in an old part of town the buildings weren’t built in a time where accessibility was demanded. I let them know when I intend to be there, and they have someone watch for me and they happily bring  the ramp out and I get to do business with a company that’s making an effort, and I probably spend way more than I usually would just because they’ve made a plan to include me in their business model.

A little bit of care and consideration, thought and intention and the world could be far more enabling for all.