Well, hasn’t it been a while?
I’ve just not felt called to write for quite some time. Throughout March, which was MS awareness month, I shared almost daily stories on my Instagram (@gimmehopejoanna) where I talked life with MS. I shared my story of diagnosis, treatment and exercise amongst other things. It was a nice, different way to share and I really enjoyed it. If you’re interested, I’ve saved them in the highlights at the top of my Instagram feed, linked above.
I also recorded a podcast with the lovely Bron Webster for her new show ‘The MS Show’ which launched just a couple of weeks ago. You can check out my episode here.
Obviously Covid has pretty much taken over our lives. To the point that in the beginning, it completely distracted me from the fact that I’ve got MS. That felt nice. But since receiving a letter instructing me to shield six weeks ago, I feel more and more like a caged animal due to being advised against going out. And the more I’m reminded of my condition. It’s a weird situation to be in. I still struggle to get my head around the whole concept of being vulnerable on a normal day never mind trying to comprehend that I am seriously at risk, when I feel perfectly fine (by my standards). I’m doing it and I’m beyond grateful that I can access grocery delivery slots more readily. It doesn’t stop me having difficulty in accepting it though.
Believe me, I don’t write this next statement lightly. Especially in light of the tragedy that surrounds us. But in many ways, I am thriving in lockdown life. Not commuting is conserving so much energy and what follows is that I’m finding myself able to look after myself more on a really basic level. I’m cooking far healthier meals. I have the energy to exercise. I’ve just really slowed down and I’m enjoying this feeling that life has gotten simpler.
Don’t get me wrong, I miss my friends, family, coffee and cake, and going down every aisle Home Bargains buying stuff that I didn’t know I needed. But health wise, I’m thriving. I’ve been having a rough couple of days but that’s only what I expect with MS. It’s safe to say though, on average I’m feeling remarkably better than usual.
I think it will be fascinating what happens in the new normal whatever that may be and whenever we resume it. I mean that through this crisis, companies have proven that they can mobilise their work force. People are working from home. I honestly believe that this has opened up so much opportunity to make work accessible for people with conditions such as MS, who otherwise would reduce working hours or have to retire on medical grounds.
Although I’m feeling great and even finding energy to do 26, 26km bike rides to raise donations for Wigan MS Therapy Centre, I’m having a couple of problems. I’m struggling to stand for extended periods at the moment. So I’m finally having to admit defeat and I’m waiting delivery of a perching stool. I’ve not got a ‘proper’ one – I’ve just gone for a high stool that I can fold up and tuck away because I don’t need it all the time.
I feel a little bit weird about it. How can I cycle 26km and not stand in the kitchen? I don’t get it, so I don’t expect others to. It’s made me realise what MS is slowly chipping away at. What it might take from me. For a minute, it feels like it might become a literal elephant in the room. But actually, I’m looking forward to it’s arrival. I’ll finally be able to make a meal without having to stand in discomfort and pain. This is enabling me to continue an independent life, instead of allowing MS to take from me.
Although it’s only a tentative step in the direction of mobility aids, doing this feels like a huge step in the direction of acceptance. Whilst I consider myself to be quite positive about my MS, I still regularly question how much I accept it. I know I don’t entirely because I’ll catch myself talking about MS and then I’ll suddenly feel nothing but disbelief that I have it. When I’m in pain, I often cry. It’s not because of the discomfort that I’m in, it’s about the fact that it’s my reality. And I may never truly accept it.
But maybe that’s a good thing.
If I fully accepted it, would I keep up my fighting spirit?