Learning to live with it — mobility scooter, fluorescent orange drink oh, of course and Long Covid.
I had written ‘learning to live with it’ for a while and never continued writing.
I think this is because learning to live with it encompasses so, so many parts of my life that I didn’t know where to begin. Navigating the reality of learning to live with Long Covid is a huge ask of myself and my body, when I didn’t ask to live with it or have it in the first place. I feel frustrated, upset, relieved but completely heartbroken — the last months have taken their toll. ‘Health’ in 2022… It means something different when you have to fight and work so hard for your health to be good or even just functional.
Always want to write but it’s finding a balance of banging on about things and finding the energy & time. A lot has happened in the past weeks, I’ve attended my first big events this side of the pandemic (so lovely to be celebrating with everyone together & I learnt another huge load of stuff about my body with LC which is a post in itself), I’ve been enrolled in a trial through Oxford University at John Radcliffe Hospital and am navigating options with my career. Amongst these it has been rest, rest, rest…obviously feeling guilty for being a bad human again but when will I learn?
MOBILITY SCOOTER — What? You’re 29 & looking fine!
As part of the trial, as I explain below, I have three clinic visits to the hospital in Oxford. The first, Dad drove me (thanks you legend), the second Chris & I did in the Easter holidays and the third is to come in a few weeks.
I am so grateful to everyone helping me and very glad Chris & I could incorporate a trip to Oxford in the holidays for the second appointment. It’s not your average ‘holiday’ but we decided that we would make the most of it and attempt it like a little break adding an extra day in between the long travelling. Thankfully the sun shone the entire time and with a change of scenery it did actually feel like we got a break, albeit around very frustrating circumstances. Travelling wears anyone out but I really find it difficult at the moment, sitting for long periods of time in pain and my whole body aching is exhausting in itself. Then there is attempting some navigating for new areas and the drowsiness with car travelling on top. It’s hard going, but worth it I tell myself.
We took a day to visit Blenheim Palace. Normally in a new place we would set off with a backpack and snacks and just wonder until we found a pub and then wonder to the next one and so on. I thought about it and considered that we could park closely, look for benches to sit on to rest and stop as much as I needed but I realised that this time things had to be different. Blenheim Palace, on the edge of Oxford, has beautiful gardens to visit and a route around the park — perfect, we can take our time to walk this and at least there will be places to stop and sit if I need to, sorted. Actually the further I looked on the website I saw that I could do one better as they hire out wheelchairs and mobility scooters for your day.
I had wanted to just try this for a while but having the confidence to share that with others out loud was a huge challenge for me. It is a sense of denial that I may need support like this, it is a feeling of defeat, a question to myself — Am I really trying hard enough to get better? etc, the list goes on.
Bit the bullet, arrived, requested a mobility scooter and it changed the day for me. I wish I’d embraced it sooner. Yes, you can see the emotional toll in my face (sunglasses are great for when you want to hide the tears), yes I felt weird at the beginning but after ten minutes of crying, getting used to it and then laughing with Chris, it felt amazing to join him & the dog for a 5 mile walk, or ‘scoot’ in my case. For 18 months I’ve wanted to feel the rush of fresh air on my face, outside of being in the car with the window down, and this mobility scooter finally gave me 2 hours of it. That ‘I’ve walked a good few miles today with the sun on my face, stopped for lunch and walked some more’ feeling was almost there. Don’t get me wrong, I still wish I had walked it but I felt really lucky enough to be able to do this at my own level and the emotional/psychological/mental exhaustion of the day definitely matched that physical exhaustion of walking a few miles.
I had the expected thoughts of ‘what will people think’ and many many other stressful things that most people wouldn’t even think twice about etc and yes people did stare because I supposed from the outside I look well and you may wonder why I wouldn’t be walking. But do you know what? Just like with the Blue Badge and any other adaptions for anyone at all… This is everyone’s reminder that not all disabilities are visible (yes, it’s a disability now) but it doesn’t have to stop anyone enjoying the things they love and yes you probably should stop staring. Mind your own business and enjoy your own walk/ride/scoot/life.
I will 100% be hiring again.
AXA1125 Long Covid Fatigue Trial
A combination of amino acids or a placebo?
Who knows but it’s worth a shot if it will help my fatigue levels. I researched various trials, a few didn’t work out but this one did. It consists of 3 clinic visits to John Radcliffe Hospital and 2 phone call check ups.
It begins & continues with a lot of blood tests, urine samples, alcohol breath tests, physical examinations, an echocardiogram of my heart, an MRI on my legs whilst completing exercises and a 6 minute walking test. The first visit is a screening to check if your body is eligible and then, if successful, another return visit for more bloods & tests before you are sent on your way with either the AXA1125 treatment (a combination of amino acids) or the placebo drug. Both look, smell and taste the same for control as it is a blind trial — white powder with water which turns fluorescent orange to be taken twice a day. The trial is interested in your rate of recovery (measured through the MRI scan on your calf muscles) after you move your leg in short bursts. I’m no medical expert but in basic terms the criteria cut off for the trial was 50 seconds recovery, mine took over 150 seconds so this along with my blood work meant I qualified to continue. I’m not to read too much into those numbers as they are only loose markers but we do know it shows my recovery time is slow. I would love to have known what my number was before catching COVID but we didn’t know we’d be here.
I take this combination twice a day for the next 4 weeks and then return to the hospital for the same set of tests to measure. I’m not overthinking whether I’ve gotten the treatment or the placebo drug so just going with it — if I feel better, excellent! If I don’t, there’s no loss. If I feel worse (there is a chance), hopefully it’ll only be a temporary symptom. But I do know I feel positive that I helping to contribute towards the research that may help others in the future.
So, I feel like ‘Editing learning to live with it’ has been a tab open on my laptop for months now and it’s certainly a tab in my brain that I can’t really just close down. But I really am doing my best each day to make steps towards the things that have always brought me joy even if right now that is 10% of what I would like, at least it’s 10% more of the good stuff — the outdoors, sunshine, water, exploring.
And we now have Mylo our wonderful 6 month old Cockapoo keeping us entertained & joining our adventures since February too!
