First of all I’d like to point out that MS is sometimes referred to as the “snowflake disease”, because no two people with MS will experience it the same. As the damage occurs anywhere in the brain, and down the spinal cord, symptoms vary greatly from person to person. I’m pointing this out because in this post I will be writing about my symptoms, my physical experience of MS. Reading one person’s account does not paint a picture of MS as a whole; while there are some more “typical” symptoms, it’s so different for each of us and even I, as a person living with MS, am not familiar with all of the innumerable ways in which it can affect a person, and would never presume to know the access requirements or lived experience of a fellow PwMS.
One of my biggest frustrations is the comparison that is often made between people with the same illness or impairment; I’m sure us PwMS have all heard something along the lines of “my neighbour’s friend’s sister’s husband has MS and he’s fine”, or, “my roommate’s ex has MS, but she’s much worse than you…”. Such unhelpful commentary frustrates me primarily because MS is a largely invisible illness and just because someone might “look fine”, doesn’t mean they aren’t living with and managing an array of symptoms – when you tell me that your neighbour’s friend’s sister’s husband has MS, and is fine, you are not only dismissing my experience, you are also belittling his. You can never presume to know how much or how little impact MS has on an individual’s life, based on your perception of them in a finite window of time.
When I started using a walking stick I think people’s perceptions of my MS changed much more drastically than my MS did. I went from “fine” to “not fine” pretty much over-night – which definitely was not the case in reality. At work I was told that one of my colleagues also has MS but that “she’s not as bad as me”. I assume that was based on the fact I occasionally use a walking stick around the office, and my colleague does not. The point that I am inarticulately trying to hammer out here is that I use a walking stick to aid some physical progression that makes up probably less than 10% of my overall experience of multiple sclerosis. And they’re not even the symptoms that have the greatest impact on my day-to-day life. Ergo, my non-mobility aid using colleague could actually be having a much “worse” time of it than I, not that it matters. It’s a strange, hierarchical comparison that doesn’t need to be made as it serves absolutely no purpose whatsoever.
The dangers with these presumptions are that people with MS, or any invisible disability, may not be receiving the access requirements that they need, whether that’s in the workplace, or in society at large. It means that we risk abuse, contempt, “jokes” and downright refusal when we do ask for particular requirements to be met. It means that many of us fear using disabled toilets or parking in disabled parking bays with our blue badges, which we are very much entitled to, and instead brace for the pain, fatigue, dizziness and knock-on impacts (like not being able to use your legs later), that can come with climbing stairs or walking further.
When I started this blog I knew that I wouldn’t write about anything too “medical” – my interests largely revolve around raising awareness of the psychological or emotional impact of living with a progressive illness, life with MS, and the social side of disability; breaking down barriers, challenging perceptions and the like. Or at least attempting to. Personally I prefer that anything to do with the medical side of my MS; my treatment, symptom-specifics…, are topics for discussion with my medical team, some of my family, and close friends. And, to be honest, I find the medical side quite dull to talk (or write) about – that may change. I also have absolutely no interest in attracting people’s pity (my life is not pitiable I’m afraid), and I worry that talking about my symptoms might invoke such a response. HOWEVER. I do want to raise awareness of invisible disabilities, and the invisible side of MS (which is like, 99% of it, particularly in the earlier stages), and to do that I need to talk about some of my own invisible symptoms. So here goes:
Visual: One of my earliest relapses, mere weeks after I was diagnosed, was optic neuritis. I lost most of the vision in my right eye, and while it returned to (near) perfect, I still experience washed out colour-vision and the related nerve-pain behind my eye. I now wear attractive tinted glasses at work to avoid the harsh office-lighting and computer screens from causing that pain to flare. (Dark or tinted glasses also seem to mitigate brain fog for me, if that’s something you also experience MSers – definitely worth a try!)
Brain Fog and Fatigue: By far my most debilitating symptoms. There is a physical sensation to it; a muggy, foggy heaviness that makes you visualise wanting to take a mallet to your skull and hammer it out. I become a kind of “conscious vegetable”; I can’t process incoming information, I can’t process outgoing information. No thinking, no speaking, no remembering words and their meaning (not concerning at all for an aspiring writer), no energy to function. To move, to speak, to think. At all. Literally. Nada. Fatigue means I don’t have the energy to leave the house on more than two, three at a push, consecutive days. It means I can’t make “dinner plans” for the end of my 6-hour working day. It means that a 1-day social event becomes at least a 3-day social event once you factor in the “rest-in-preparation day/s” and the “rest-to-recover day/s”. It means holding down a job and maintaining some semblance of a life outside the workplace becomes a logistical feat of magnificent proportions. It means that even after a solid 8 hours, I might still need to take a nap after showering.
Muscle Fatigue/Weakness: This is a newer one for me, and it makes my legs feel heavy and uncomfortable to lift, particularly my left. In short; yes, sometimes I can walk X distance, but if I do my legs could refuse to co-operate afterwards. This involves a lot of; “if I did X amount this morning, and now go to the supermarket, will I have the strength to work the pedals on the drive back?” kind of perpetual risk assessments.
Numbness and Reduced Sensation: Pretty self-explanatory. I have reduced sensation or numbness in my face, fingertips, torso and legs. Particularly from the waist down. I always feel like I have clothes on, even when I don’t. In fun paradox to this, the left side of my torso has what I can only describe as heightened sensation so it feels like some sort of electric shockwave reverberates through my core when I am touched there; something which my partner is incapable of remembering apparently.
Pain and Altered Sensations: Again, pretty self-explanatory. “Pain” sensations, for me, include feeling like there’s a hole through my left knee, like there are open wounds down my shins, stabbing, shooting, sharp tingling, “tightness”, feelings of pressure, and my left foot often feels like it’s completely frozen, and could be snapped clean off.
Other invisible symptoms of mine include/have included/sometimes include:
- Dizziness
- Cognitive changes (particularly memory issues – I still ask my partner for the names of some of his family members and friends, who I have met multiple times…)
- Sleep disturbances
- Bladder and bowel symptoms
- Aching, vibrating, burning legs when standing still (not all of the time, but enough)
- L’hermittes Sign
- Spasms and spasticity, muscle twitches, toes that dance (contort) to the beat of their own drum…
None of the above resulted in me starting to use a walking stick last year, I’ve had most of them for far longer. (Ok, maybe muscle weakness was a contributing factor, particularly when it results in my slight foot drop), but really I started using a walking stick for stability when my balance worsened. My right leg also has a lovely habit of sporadically giving way from time to time these days.
Anyway, I hope this doesn’t come across as; “woe is me, look at what I live with”, but rather, “oh. I should stop giving people shady side-eye for parking in disabled spots without a wheelchair and assuming young people don’t need priority seats”.
I hope this post highlights (/hammers home) the fact that not all disabilities are visible, that not everyone’s access requirements (and I don’t just mean physical requirements) are obvious – so just. be. kind. And remember that with illnesses like MS, things change, sometimes daily – just because I did “a thing” last time, doesn’t mean I can do it this time. More importantly perhaps, just because I couldn’t do “a thing” last time, doesn’t mean I won’t be able to next time. It’s enough of a headfuck living with that reality, without having to explain, re-explain, apologise, and feel guilty when other people just can’t understand why you might be “too tired” to answer the phone, or why you parked in a disabled spot and then walked around the supermarket apparently unhindered (using the trolley as support FYI).
So I’ll say it again, just be kind. And maybe a little bit more aware.
evie writes 