Nel jumped on the bed just before 6am. Her body clock knows when it’s time to get Tom up and out for a run and she’s never late on the job. I can see her silhouette in the dark, her tail is a dancing shadow. I murmur something to Tom about the darker mornings closing in as I pull the duvet higher over my head. The radio alarm turns itself on and the news anchor broadcasts more desperate attempts to pull back from the harm of a virus that won’t relent.
It’s a struggle for Tom to get up, I can hear it in his sigh. He’s doing several jobs every day, and I am the sole contributor for one of them, because Tom is my registered carer. He has to give Nel her daily run sessions, she’s a Collie, she would rather be running. He keeps the property and garden and cars maintained. Does the shopping almost daily because there’s always something that’s run out or needed. Negotiates different parenting needs for Ben and Syd. Services bikes for people in the town. Keeps in touch with the rugby club for when the kids can start training again. All around the hours of a full time job with an hours’ commute each way, for which he is literally the only person able to do the job in its entirety. And for this paid job, he never gets a real day off.
So that’s Tom, in a nutshell, busy, and tired. I do my best to not need anything from him, to not add to his list, although, occasionally I do give him a list which goes into his pile of lists. He’s done lots to create a space for me to find some measure of independence. As in, I can stay in one place (my bed) for many hours at a time and not need to go anywhere. Everything is within reach of my recumbent position. Well, almost.
He has brought me a pint of celery juice (nothing to lose by trying out this recipe from the Medical Medium) and a shaker cup of meal replacement (**Arbonne vanilla, gut happily using it since 2014) mixed with cacao powder every morning for the past five months, leaving it by my bed for when I can fully wake up and begin to eat (slurp). Sometimes he leaves me a bowl of freshly cut fruit in the fridge, so that I don’t have to exhaust myself between fridge, sink and cutting fruit. There’s always several bananas available for me for the day time, and when he gets home, he plans my dinner, usually a fresh salad with vegetables. If I’m feeling perky I get a korma curry as a treat. If I’m nauseous then I can only just manage another shake. If it’s diarrhoea again (every four to six weeks at the moment), well, let’s say there aren’t many bland options left for a reduced diet that has already cut out dairy, gluten, refined sugar, caffeine and junk food.
Sadly I had to give up my beloved coffee back in February 2019. It was after my first (only) session with a neurologist, and being told that I am addicted to caffeine hence I have regular migraines. So I stopped drinking coffee the very same day. Mostly to prove that I wasn’t addicted. That issue is part of a large list of issues rising from that consultation, but I digress. Also to determine whether it really was the source of my regular migraines. These eighteen months later, I still get regular migraines even though I am taking a medication to help calm them (incidentally the third medication that I have tried, the first two made me feel very sick).
The nutrition angle has become one of our greatest focuses this year. I’m over two and a half years into having a serious illness and there’s very little by way of management that I can expect from our medical services. I know that’s not the fault of anyone in particular, it’s a systemic issue for anyone facing a chronic illness. If it’s not easily treatable or curable, then there’s little intervention. So Tom and I have to do the research ourselves, source food, minerals, vitamins and drinks and make adaptations where we can. I try things out, a few months if it hasn’t immediately caused an issue, to see if there’s any (teeny tiny) improvement.
I want to blame someone, because I get frustrated that the weight of this is being shouldered by Tom, and it rolls downhill to me because I have to share what I need, know what I need, fully own my own care. I want to blame people for not knowing that this happens to me, or to others in this position. But, I guess it’s too close to airing laundry, or it’s just not relatable. I get that, because I used to relate to the issues of runners, triathletes, full time working parents and students and other groups which no longer apply. Whilst I can still understand their gripes, I sometimes don’t care. Because I don’t have those abilities anymore.
When I get woken up at 6am, I know I’m not going to get back to sleep until the house has emptied of people, for work or school. The movements disturb my already frugal sleeping skills. It’s just before 10am when I suddenly feel as if I’ve been hit by a truck. The wave of exhaustion spreads quickly from face to feet, the fire and pain surges up my arms and legs. My brain freezes and then gets hot, trying to expand within my skull. I can no longer keep my body awake or alert, and I have to give in to pain and a crushing exhaustion.
Give into something that feels like trying to relax, but is ever so uncomfortable and makes me twitch. I think to myself that this is a bad one, and I wish I could call Tom because I worry that these bad ones will mean I won’t wake up.
Eventually, I am dreaming. And in my dream I am also poorly. I am aware of how sick I feel. Before my dream ends I am trying to get away from someone in a hospital or clinic or office building, it’s very sparse of people and furniture and there are lots of signs for the toilet, but I cannot see an actual toilet anywhere. I am going round in circles, following clearly illuminated signs that offer no substantial result. This has me distressed. I suddenly see an old school teacher, her name is Karen. She is sat with other people, maybe in a meeting, I cannot see who they are. I know she is a safe person, and as I move towards her I feel desperately ill and I try to tell her, just as I begin to faint. The sensation in my head is dizzying and sickly. I am falling slowly to the floor. I can see Karen rising out of her chair, to help me whilst my eyes roll backwards into my head.
When I wake up I have another bout of diarrhoea. No sense of why, it just happens when it feels like it, like a hiccup in my gut. It’s been like this for two years. Or maybe it’s a (brain fog, can’t find word) because of the additional drawings I have been trying to do as of late. That old chestnut.
Life balance has taken on a whole new meaning. It’s either about avoiding pain, or reducing it. Always living with it. There’s never a not-in-pain moment because this illness seems to manifest predominantly through pain and distress of my body’s systems. I can imagine it’s trying to tell me something, like stop. But my spiritual essence is pushing back, reminding me that my time in this world is finite, there is work to be done, whether in pain or not. So if I *draw* because the inspiration is there, then I have to accept the pain (and gut distress) that will quickly follow. This is contrary to all advice relating to MEcfs, but it will keep my spirit content. This balance also has me addressing, negotiating, accepting terms such as disability, disabled, and the evil twin, ableism. When I had a diagnosis of bipolar disorder I reorganised my world in order to adapt to this new identity, issue, impairment and accept there were things I could no longer do. Just three years later, an additional diagnosis, and everything is turned upside down again. Really, is it any wonder I’m feeling a little off?
Just as I trained for mountain races, ultra-marathons, triathlons, netball, and hockey, which were never without screaming muscles, ice baths, spasms, cuts, tears and DOMS; just as I pulled all-nighters to get work done, put myself in scary situations to grow my comfort zone and get past the adolescent-saturated fear of looking and feeling like an ugly fool, I choose to *draw*, and so help me if life is (still) so very painful and I still fear that I will always be the outlier.
*Can be replaced with conversations, writing, listening to music, laughing, walking into the garden, going up and down stairs, eating rich food, or listening to anything to do with politicians who shall not be named out loud for fear of jinxing my life further.
**The Meal Replacement Shake mentioned above may also be called a Protein Shake, and it can be purchased from my shop at Arbonne, an online-only vegan ethical company. If you click on the link for Arbonne, it will (hopefully) go to my own shop, and any purchases will mean I receive a teeny commission. I have stuck with them for 7 years partly because they aren’t harming my body.