Content Warning: This post briefly touches on my experience following a restricted diet, and the impact that had on my mental wellbeing and relationship with food.
How do you visualise MS?
I visualise little white blobs, with little hands, little feet, pin-prick eyes, tiny teeth, and wearing tiny yellow hard-hats. These little blob-workers are my immune cells. Some of them are doing a top-rate job, even with staff shortages; I can’t tar my entire immune system with the same brush. But here’s the problem; there are a few blob-team leaders on indefinite leave-of-absence, and these team leaders failed to formulate a clear plan of action before they left. My blob-workers are keen (maybe too keen), hard-working (maybe too hard-working), and are attempting to demonstrate to their absent team leaders that they are capable of using their own initiative. Unfortunately inadequate training has resulted in their failure to grasp basic role responsibilities, so they’ve wandered off into zones beyond their remit, and started nibbling away on the wrong stuff (who knows, maybe my CNS has been mislabelled as “invading evil virus” by a confused apprentice).
I imagine that if the team leaders ever return, the conversation will go something like; “umm, we appreciate the effort guys, BUT WHAT THE FUCK HAVE YOU DONE?!” Talk about a lawsuit waiting to happen.
Anyway, the point of this inane story is really just to illustrate that I don’t believe my immune system is attacking me with any malicious intent, how can it be? (Aside from the fact that immune systems aren’t sentient beings in their own right…) MS isn’t a foreign, invading body – it is part of me. While I hope, and aim, to limit the damage through the taking of a DMT, as I enter my 11th year of having MS the reality of this being a battle that I can never “win” is setting in. And I don’t want to spend the rest of my life in a state of perpetual resentment directed towards something I can never change, never run away from.
I have tried to “overcome” my MS in the past, with the help of Dr George Jelinek’s dietary and lifestyle recommendations. It was almost three years of food obsession. Not meeting friends for dinner because I worried about what I’d be able to eat, not eating at all if I couldn’t eat “the right food”, denying myself, thinking about food, beating myself up for eating a ready-meal on days when I just couldn’t face cooking from scratch, feeling deserving of my MS because I ate a small slice of cake on someone’s birthday, isolating myself because that was the only way I could have complete control over what I was putting into my body. When I was told that MS was still having a riotous time inside my brain, despite my best culinary efforts, I felt like a failure, I blamed myself for not “doing enough”. MS, the continued activity of my MS, and the beginning of a more obvious progressive element, all became my responsibility, and my fault, for the first time since diagnosis – it was all a result of my failures. The impact that “OMS” had on my mental health, and enjoyment of life, vastly outweighed any physical benefits, so I took a step back.
It was this experience that taught me that a life with MS shouldn’t be a life fighting MS. We have a limited amount of time on this Earth, and I want to spend that time feeling happy, accepting of my body, filled with contentment and inner peace. I want to focus on love, nature, fulfilling work, delicious food, laughter, friends, family. I don’t want to spend my time fighting, obsessively checking ingredients, feeling locked in a battle against a body that angers and frustrates me, attempting to overcome something that I never will. That, to me, feels at best completely draining, and at worst a futile waste of life.
Personally I feel quite alienated from the “fighter” and “warrior” rhetoric that is so prevalent in the MS community. That mentality holds no appeal to me. To live in a life-long “battle” is to live in a life-long state of heightened stress. To be fighting against your body, rather than working with it, means that you’re much less likely to treat it with kindness, to take care of it, to nourish it, to move it. And let’s not forget the psychological impact of feeling like you’re “losing” the battle.
So I’m choosing to practice love and acceptance instead, but to be clear, this doesn’t mean “giving up”. I still push myself to turn up for Pilates on miserable mornings when I’d rather stay in bed, and of course I do what I can to mitigate many of my symptoms, and the impact they have of my quality of life. There are many things I am completely opposed to; I will never love pain – it doesn’t matter how many times I chant “pain is power” mid-flare, but I have accepted that I will never be without it.
Loving and accepting means doing things that benefit your body because it brings you joy, it means not pressuring yourself to be “doing more”, it means not blaming yourself when your MS progresses or you have a relapse; it means grieving a little, but then accepting, and adapting, and carrying on.
Above all, love and acceptance means embracing change, finding new ways and creating solutions. It is much harder to accept that your body might change, or is changing, if you are continually trying to fight it. If that change means starting to use a mobility aid, then use a mobility aid – don’t fight it.
When people say things like, “I will never give in to using a walking stick because that will mean I’ve lost”, does that mean that I have failed? That I have surrendered?
Well, let me tell you something; in the months leading up to me using a walking stick I had stopped living my life. I had stopped leaving my house unless I absolutely had to, I had started rationing my social plans in case my muscle weakness couldn’t keep up, I had lost all confidence in my body so I self-inflicted a period of being essentially housebound. But I wasn’t using a stick – so was I winning my fight against MS? That existence isn’t my idea of a winning existence.
Since accepting the use, and need, of a walking stick, I have re-entered employment for the first time in almost two years, I make weekend plans confident in the probability that I will be physically up for them (cog fog is a different kettle of fish, obviously), I nip to the shops when we’re running low on milk instead of getting worked up that I can’t go in case I fall. I am even planning a summer resurgence of hill-walking after a two year hiatus, which will only be possible if I embrace the support of my walking poles and my attractive new splint. Of course, I could fight the introduction of walking aids and splints, and spend my summer on the sofa, safe in the knowledge that I’m “beating MS”.
In short, I’m not fighting my failing mobility, I’m embracing what I need to keep moving, and my life is so much more because of that. That’s not giving up, that’s the opposite of giving up.
But how can you possibly love, accept and embrace a broken body, I hear you cry.
When I think of my body, I think of how much harder it works to keep me walking, to keep me balanced, to keep me stringing semi-coherent sentences together. I think of all it achieves on the days that follow sleep-deprived, tearful nights. I think of its strength and flexibility, in spite of its muscle fatigue and spasticity. I think of the fact that everything that is amazing about the human body has been amplified, not dampened, by the mere fact mine has to do so much more, be so much more, just to keep going. There are many things in the world that warrant being met with my fighting spirit, but my body isn’t one of them. My body deserves my cooperation, my appreciation.
Living in my body has brought me so many great things. It has allowed me to travel, to hike, to explore, to laugh, to cry, to dance. My body is moving, and breathing, and feeling, and living, and that is enough. That is more than enough to love.