This is Anne on the left during one of our Ambassador Training Days
Anne contributes a lot of her experience and time to supporting JUST Lincolnshire, as a volunteer Ambassador. This is how it is for Anne. We are all guilty sometimes of not looking beyond what we see. Anne lives with M.E. and this is how daily life is for her and how lockdown has been for her.
M.E. is one of the disabilities that is unseen. You wouldn’t know to look at me I have a disability. If you do see me out and about, it’s because I’m having a good day. You don’t see me when I spend weeks mostly in bed, getting up to go lay on the settee! Or literally crawling across the landing to the bathroom. It is also a fluctuating disability, and the fluctuations seem to have no rhyme or reason. There are people with M.E. who are far worse off than me. Some are in wheelchairs. Some on oxygen and morphine for the pain. I have never been that bad.
My M.E. was triggered by viral meningitis, in 1991. Over the following three years my health deteriorated. I had several tests, but nothing showed up. Following a collapse, and a 999 call, I was in A and E, on an ECG machine. Not a heart attack, but I had seriously low blood sugar. Chest pains and low blood sugar were two more symptoms that helped the G.P diagnose M.E. Specifically, Post Viral Fatigue Syndrome. It took a year more before I started to get the hang of managing M.E. I consider myself lucky that I had a GP who would consider M.E. back in 1994. Still today there are people that think there is no such condition.
We’re classed as vulnerable rather than extremely vulnerable, and were advised to follow precautions to the letter. I might be able to make a case for not wearing a mask, but I think being vulnerable it’s better if I do. I understand it’s not so much that we’re more likely to catch Covid19, but if we do our M.E. symptoms could flare up. The underlying problem is we don’t use oxygen efficiently, hence the fatigue, difficulty concentrating and so on. So, masks can impede this further. I wore one through lockdown as an extra precaution. Sometimes felt stifled, some days OK. I don’t know if this means we’re more likely to need inhalers /ventilation if we did get it.
During lockdown we had M.E. awareness day (12th May). Someone tweeted that for people with disabilities every day is lockdown! Certainly, if you take the Equality Act definition of disability, some can maybe manage to do a weekly shop but that’s it. I thought that was an interesting way of looking at it, and one that should resonate with many of us after our experience of this year. I suppose the analogy could be extended to others if their experiences tell them certain places are barred to them, they shouldn’t mix etc. Kimberley in our Stories of Strength film that started to think about how she dressed. People with disfigurements. How much easier to not go out. Or just pop out if you really have to.
One thing to clarify is that having a disability doesn’t mean you’re registered disabled. If I say anything it’s that I have a disability, not that I am disabled. I never feel ‘well’. My ‘well’ is that feeling you have when you don’t feel ill, but don’t feel quite right, and the next day you come down with a cold. Hard to put your finger on. I usually have the very beginnings of a sore throat most days, but never develops. Sometimes slightly nasally, but only slightly. In February, when this was still all new and considered not to have hit the UK, I felt a bit ‘M.E. ish’ – temperature, achy, and my glands were up like I’ve never known them. It felt like my body was strangling me. Not something I have ever had in my life. I now wonder if that was mild Covid.
When I’m volunteering for JUST Lincolnshire with training I plan to do little the day before and the day after. Same with volunteering at International Bomber Command Centre, overlooking Lincoln. So, one days activity can account for three days of the week. There’s not much room for spontaneity.
I don’t like to be away from home more than two nights at a time, and like to know how I’m getting back, preferable under my own steam.
Actually, lockdown was not too bad for me, because it helped me pace myself over each day, rather than over the week. I’m glad it didn’t last much longer, but I said to a few people at the time, I think my health was better because of lockdown. I had a perfect excuse to not do all the things that I or others expected me to do. No pressure.
Others have had it far worse. For instance, there’s been a bit on Twitter about people with sight impairments who have to get close to things in shops to see, and may need to pick things up to hold them close. They remember the way round shops, so if one-way systems are introduced, they are snookered. This is especially true for guide dogs who are trained to take people to the door, not to the back of a queue.
I do think there could be a lot of good come out of our collective experience this year. As well as Covid for all of us, especially BAME, we’ve had George Floyd and Black Lives Matter, and the highlighting of the Uyghur genocide in China, and unrest in Hong Kong. We have the EHRC report into antisemitism in the Labour Party likely to be made public next month.
I think the Universe is giving us a kick up the backside.