[Note, this blog has been almost a month in the writing. There’s a whole blog in that too. Anyhow, as well as being about ten blogs behind, some things have changed since I started writing this. But this is a reflection of how things were for me towards the middle of October. And this site is for me to share my MS journey. Even if it does become out-dated before I find the time to publish].
It’s been a while since I’ve written. I got myself stuck again, like in a stasis where life is happening, and I’m doing the things that need doing, but the time slips away and so there’s no room to put the words on paper (or, type the words onto the screen). And it goes on, and the words build up, with no place to go, and the time slips away….
Seriously, the brain fog, and disconnect from time is a huge thing for me right now. Huge. The fatigue, the wall that gets hit by mid-afternoon. It’s amazing I’m even managing to get the basics of life and living done. My work has definitely suffered and so I’m putting in more hours on that so that the suffering is less noticeable. And I really hope it isn’t noticeable. I really need to keep this job – not only does it pay well and keep me with a roof over my head in a part of the country where all of life is only less than a 15-minute walk away (so necessary now), but it’s also a work from home gig and that means no commute. I honestly think if I had a commute right now, I’d be on long-term sick. Which would put me on benefits and not able to afford the rental on this beautiful house. The job needs to stay.
So, anyway, I digressed a moment there to one of my biggest fears, so pulling back to the point of this piece: in August I was told that this relapse won’t remit. And it does seem to be getting worse, with new symptoms and different weirdnesses cropping up quite regularly. Whereas I started on 100mg of Gabapentin three times a day, I’m now on 600mg of Gabapentin four times a day… The Omeprazole doesn’t seem to be clearing the heartburn either, but I went off it and it got worse, so back again. The Amantadine made the brain fog and fatigue worse, not better, so have stopped that. The Oxybutynin Hydrochloride has my bladder mostly under control, but it’s still fairly ‘shy’ even when bursting. I’m on the third month of Aubagio and no noticeable side-effects yet (although I could swear my eyebrows are thinner, but that might be age), – but a girl in one of the Facebook groups said that her hair started falling out after month three, so let’s see… And the Codapam hit I sometimes take to kill the pain mustn’t become a habit (a Codeine Diazepam double) but oh it’s the one of the only enjoyable things in a normal day when I do take it: the pain disappears, I float a little and I feel so much JOY. I can see why people get hooked… (I am being careful and not using it recreationally. Mostly).
So, waking up with heavy, painful legs and feet that feel so cold they’re on fire is normal. When doing my stretching and yoga exercises, spasms are normal. Flashes of chronic pain in any part of the body, like being stabbed, that’s normal. The numbness down my arm, normal. The twitch in my right thumb that’s a bit like Parkinson’s – normal (thankfully this one isn’t entirely a habit yet). Washing my hair and my arms getting tired and needing to rest a while before can rinse it, normal. Finding it hard to keep the grip on the toothbrush, normal. Walking up the road, feeling a spring in my step for the first few steps, and suddenly, no warning, feeling an urgent need to sit down, normal. The MS hug, the squeeze around my middle, normal. The sudden pain as the hem of my leggings touches my ankle, normal. The odd tingling sensation in my face, normal. Pins and needles, normal. The inability to put weight on any part of body for long period of time (like sitting, or sleeping) before it becomes painful, normal. Basically, pain is normal. Random electric zaps seem to have mostly stopped now, which is great but I know they’re there, under the meds. Pain is normal now.
When I heard the news that this relapse wasn’t going to remit, I pretty much went into the same, well, similar, hole as I was in when I got the diagnosis. It was a different kind of hole as there was almost some relief that after months of expecting it to get better I could let go of that hope, and just figure out how to live with it forevermore. And I suppose I got myself out of the hole more quickly as there was no point being in a hole if it wasn’t going to be temporary.
And whilst I’ve stayed quite stuck, there are some things I’ve been doing that have been unsticking me and have got to me to here where I’ve found a pocket of time to write this. I’ve been journaling in the mornings, first thing (ish) and that’s definitely helped me to maintain my sanity, I’ve added in meditations before sleep and been sleeping so deeply (usually) as a result. I’ve been doing some exercise programmes, a circuit HIIT type thing, and a yoga thing. I’ve changed my diet to be strictly gluten-free and cows milk-dairy free. And for my business I’ve started opening up again and offering my services to more clients. All the ways I’ve been getting myself unstuck will be another blog post, of the many blog posts I’m storing up to write about this Magical MyStery Tour.
So, this is normal now. This Transverse Myelitis part of MS isn’t remitting. The hope is that there won’t be another relapse for a while… The uncertainty of that, and what it might be when it comes, is terrifying, so living with terror is normal too. And the loneliness of being in this body that even when I share with a friend, or here, nobody can really understand, that’s normal too. Pain, terror, loneliness, all normal.
There’s no point dwelling in the pain, just feel it, do what I can to alleviate it, accept it. No point focusing on the terror, acknowledge it, prepare for it, accept it. No point feeling lonely, love oneself, comfort the body that’s doing its best, accept it. I used to think acceptance meant giving up, but it’s entirely the opposite. Acceptance (surrender?) enables me to see the rest of life and be grateful for all the other things that life is that isn’t this disease. (Definitely another blog on that too, one day).
Accepting a new normal. A normal that is an entirely different life to one I could ever imagine. Because I imagined relationships, and houses, and children. I imagined holidays. I imagined different careers. I didn’t imagine having, or not having, those things with constant pain. New normal. It takes a bit of getting your head around.
Coincidentally, I’m reading Radical Acceptance by Tara Brach at the moment (I’ve been reading it a while now, not so strangely enough it’s taking me a while to get through it…). Anyhow, her chapter on pain is intriguing. To focus in on the sensation and recognise that it shifts and changes and never actually stays the same, just like an emotion shifts and changes and never actually stays the same either. It’s giving me lots to think about. And maybe learn how to accept.
Thank you for reading xx