Emotionally, it’s been a rollercoaster. Clichéd, perhaps, but an accurate description. I’ve been to heights and depths, thrown around by something beyond my control with a queasy feeling of alternating excitement and dread in my belly. Sometimes I felt so jaded, demotivated, and lacking in confidence.
Other times I felt like me: interested, enthusiastic and engaged. I think it depended on what was happening in my pelvis, but there are some standout emotions that wove the underlying fabric of the whole process. Some have faded; some are still with me.
There was the everyday frustration, not being able to go to a specific event because I couldn’t walk, or unable to put up curtains because I didn’t trust my balance standing on a ladder. My brain commanding my physical self to do things, and my body just being incapable of carrying out the instructions. It gets to you.
Then there was the bigger life frustration: life is short and this was not how I wanted to pass my days, spending all my weekends and evenings at home because actually going out was too much physical effort that also brought with it a lot of anxiety, and frankly I’d rather save myself the distress.
On top of this was the frustration that the world was seeing me in process. I always knew my incapacity was a temporary state and one day all would be fixed, but it’s been a long journey and not everyone stuck with me along the way.
I could see the bigger picture, how it all fitted together. But I guess for everyone else it was like looking at snapshots. People took me as I was in the moment – naturally, it’s all you can do – but I wasn’t myself. So it felt like the world was getting the wrong idea of me.
It’s like leaving the house only half-dressed: I’m not finished yet! A work in progress. An unedited first draft. The sketch before the painting. Ideally, I would reveal the final look when all the structural foundation had been completed behind closed doors. O that I was a millionaire and could have spent 5 years in a Swiss health spa!
But mostly life carried on, and I tried to keep up with it even while not being quite myself, working very hard behind the scenes on a project whose results would take time to come to fruition.
The frustration came not from FOMO (fear of missing out), but simply MO (actual missing out). The knowledge that life was happening and I was unable to join in. I would change my expectations to avoid disappointment. If I told myself I didn’t want to do it anyway, then I wouldn’t be upset when I couldn’t.
Thank heavens for Covid-19 lockdown! It is such a relief! Everyone is stuck at home like me, nothing is open, and there is nothing to miss out on.
I’m not sure what this is or where it comes from. It’s not really a feeling, more a lack of one. I get this gnawing, aching, emptiness; utter dissatisfaction with life, what I’ve got, what I’m doing, where I’m going. I feel empty, lost and purposeless, and become paralysed, overwhelmed by the pointlessness of everything.
Maybe I have too much time to think. Is this what other people call depression? For me, it’s just a massive Meh. I have no ganas (wonderful Spanish word/concept); no enthusiasm for anything. I’ve got loads I could do, but I’d rather lie on the sofa and stare at the ceiling, wandering in the thickets of my mind.
I remember being like this at the end of the 2000s and I called it ennui and weltschmerz (I like to be literary and pretentious). Then life went all dramatic, but it never went away, just lurked under the surface. Hmph. Maybe it’s just my default state of being.
In most social interactions, I probably seem positive, easy-going, kind. And I am. This is genuine. But deep down, I am absolutely seething about what’s happened to me. I am angry that I’ve had to do this, to put right what went wrong. What I did to myself guided by others.
What I’ve discovered about congested lymph (blocked by candida?) makes the anger subside a little – it’s no-one’s fault, and so super unusual it’s no surprise that no-one spotted it. But when I think about the MS diagnosis, interferon treatment, and especially the ISC debacle, back it comes. A ferocious undirected feeling, mingled with self-pity at my lost years.
I’m angry at the health system. I’m angry at myself for quietly putting up with it all and being so compliant. I’m angry at my parents for not fighting my corner.
I’ve also been angry at people trying to help, people who didn’t appreciate the process I was going through and thinking it could all be fixed if I get some treatment or other. I know it always came from a caring, concerned place, but it just made me mad.
Because nobody really got it: that the healing was the cause of my suffering, and that this stuff couldn’t just be magicked out of me. The process was necessary. To be fair, most didn’t know the history.
Anger is an energy, sang John Lydon. But I didn’t know what to do with it. Motivation to tell this story, I guess.
Timidity and Confidence
“To lose confidence in one’s body is to lose confidence in oneself.”
Simone de Beauvoir, The Second Sex
I am an educated, attractive, talented young middle-aged woman. I have a lot going for me, I know that. And I am self-assured with high self-esteem. I don’t beat myself up. I love me. I am forgiving of me, accepting myself warts and all (what counselling training can do for you, eh?).
But I haven’t been myself these past few years. This process has ripped my self-confidence to shreds at times. Sometimes I’ve felt like an old woman, sometimes like a little girl. I can’t trust my body to get me around or to be capable of doing simple things like lifting something or keeping upright (or – horror! – both at once), or trust my bladder/bowel to hold its contents.
This has made me timid in situations where normally I would have no problem. From chatting to a shop clerk or asking for directions, to being decisive in a professional context. (I made it even harder for myself trying to do this in another language, too.)
Simone was right. She might well have been talking about body image (I can’t remember the context), but it’s an idea that applies just as well to infirmity, disability or ageing. If you’ve never had a physical problem that stops you doing something simple (or been close to someone who has), I imagine it’s hard to comprehend this. Everything comes so easy for you. You take it for granted.
I also find I don’t know who I am anymore. Things have changed so much, I don’t know what I usually do or what I like to do. Am I someone who’s good with heat? I don’t know. In recent years, no way, but now…?
Am I the active type? No idea. Before all this, I loved dancing, but I haven’t danced for years because I haven’t been able to. And so the desire to do it has vanished, and in its place my pursuits are intellectual and stationary.
Am I sociable? I’m a natural introvert – not shy, but I like time on my own. In this process of recovery, though, I’ve been like a wounded animal retreating to its cave. Leave me alone! But I’ve also been really lonely, and I used to be assertive and chatty, so I think this self-isolation is probably temporary.
I don’t even know what I like to do in my spare time, I’ve spent so much of it on Project Fix Me.
However, I’m slowly, slowly stepping back into some kind of non-unwell, capable normality. So watch this space…
NEXT: Rewriting the past