“We receive and we lose, and we must try to achieve gratitude; and with that gratitude to embrace with whole hearts whatever of life that remains after the losses.”
Andre Dubus II, Broken Vessels.
This is a favourite quote of mine. I usually do what it says, without even trying too hard. Appreciation of what I have is the best way to be. Better for me, and the people around me. It’s crucial for managing to live well with a chronic illness like MS, but it’s hard to confess that lately it’s a wrench to get there. A sure sign I’m hitting a low.
Although my aim in this blog is to be honest about the realities of living with MS, at the same time I’m a little scared and reluctant to share misery as felt in the moment. I realise that I tend to do it as some kind of retrospective, once the worst feelings have passed, so I can reflect on it from a distance. I maybe then give it a little sheen, even add some jokes, to ease the burden of you having to carry it with me. And for whatever reason that feels a little safer for me than writing from the here and now, when the here and now is a bit shitty.
But that is where I’m writing from this time. I’m trying to work out how come I have gone from being a living, breathing, walking, talking gratitude journal, a veritable poster girl for acceptance and happiness, to being weepy and glum over the last month or two. I’m almost a little embarrassed at the confidence with which I declared all over Instagram that I was happier now than I’d ever been (before MS) only earlier this year. But it was as real at the time as the cracked little shell that is me right now.
Am I not resilient? Have I not been battered before only to get back in the ring? The positive feelings had lasted for so long that I’d started to think it was a permanent state of affairs. And I thought I knew, because people say they see me as a strong and capable person, that I couldn’t be anything but resilient.
So I’m looking for answers. On resilience, I’m starting to realise that it isn’t a given trait, or indeed static:
“Resilience is not a fixed personal attribute. Rather, it ebbs and flows in various circumstances and over time. To feel broken, at the end of the line, unable to cope does not mean that you are lacking resilience. Rather, it means that your resilience has become depleted at this particular time.”
“We can be resilient and fragile at the same time. Family, friends, colleagues, and even physicians in charge of their care fail to see the vulnerable feelings that sit alongside the resilience.”
This article was incredibly helpful. And it gave me some better descriptors for how I was feeling. “Depleted”. That was it. “Fragile”, and “vulnerable” too. The words leapt out from the page and I took them as my own. I am fatigued, but fatigued didn’t quite hit the mark, and nor did depression, a different beast altogether. Although my mood was low for sure. That they could all sit alongside resilience was revelatory.
So how did I get to this low ebb?
1. MS is just hard. Have I mentioned that before 😉? Everyday tasks like taking a shower, even with a seat to sit on, and a safety bar to grab, more like a mountain hike in a storm; getting dressed a feat of physical endurance befitting a contortionist. Put my top on back to front by mistake, it’s staying like that for the day, and sometimes the night. And maybe the next day. Then there’s the responsibility for making sure I try to do what I need to do to give me the best chance of living well with MS, the healthy eating, the exercise, being social, etc. Getting places, accessibility. The list continues. You can get used to the day to day of MS, grow around it… but then sometimes it
just..
simply..
overwhelms..
And I can’t seem to help being consumed by it all.
2. Everyone has bags to carry; an ill family member, ageing parents, teens teening, job stress, money worries, an existential crisis over your life’s purpose. Having a chronic illness doesn’t make us immune from the everyday stresses of life but it does mean managing them alongside it. And there has been a lot to manage in the last year.
3. Stress affects symptoms. And my symptoms are really giving me a hard time at the moment. Spasticity is the main offender. If you’re not familiar, spasticity is a common MS symptom caused by nerve damage in the brain and spinal cord and manifests in extreme muscle stiffness. It feels like my calves, back and ankles are in a slow motion fight to move in almost set concrete. Everything requires more effort. A walk across the bedroom feels like it needs a fall risk assessment.
So 1 (in its overwhelm state) and 2 cause 3, then 1 becomes even harder. Then 2 doesn’t just stop because of 1 or 3. And so it goes on.
4. And there’s an emotional load that comes with bearing all that.
5. Grief is always there in some shape or form.
6. Fear too, creeping back in through the cracks created by feeling depleted and fragile. Am I getting worse?
7. I haven’t been prioritising what I need.
8. Sometimes what I need is harder to get because of 1 and 2, and also 3. And not getting what I need lets 4 and 5 and 6 run riot and then I forget about 7.
It’s quite obvious what needs to happen when you see it all written down.
So I’m working on 7. Battening down the hatches, consciously staying at home for a few days at a time and not setting myself up for any further physical exhaustion (other than getting that effing shower once in a while). Reaching out to friends and family to chat on the phone or text while I’m not up for too much going out. Relishing the visits from friends who come over. Did that sound a little like gratitude, maybe it’s starting to work already? Resting, and I mean reinstating proper resting from the good old days of 2024, where I’d watch a film, or gems like Pride and Prejudice (the 1995 BBC series with Jennifer Ehle and Colin Firth), in the middle of the day. Booking in a massage – I found someone really good who can come to the house. Stretching and doing a few basic exercises on my yoga mat each day. Breathing. Entering a writing competition. Planning a haircut. Reminding myself I have a sense of humour.
And reminding myself I do have things to be grateful for.
Thank you for reading listening. I definitely mean it.
Jane 💛
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