understand my immense gratitude for that. Please also see the paragraph on privilege further down.
I am doing things I have dreamt of for years, that in the moments of laying still in the dark and suffering so hugely, I desperately hoped I’d be able to do one day. And honestly, it’s hard to believe it’s happening.
I am still in bed almost all of the time. I still have to do all toileting in bed. But with the help of lots of specialist equipment, I can hoist from bed to the shower, where I lay flat, and a carer showers me (meaning the whole process is flat). Many of my washes are still strip washes in bed though but often due to other factors as a shower in this way doesn’t really use much more energy. The amount of time I sit in my wheelchair fluctuates, as it always causes some form of PEM so it has to be done in a week that is otherwise mostly empty. I need to rest before and have space in the diary to crash after. So sometimes I don’t sit in it for months, sometimes I sit in it 3 times a month for many hours. I still sit in it reclined but I am closer to upright than I used to be, maybe even close to a 60-degree angle. But sitting in the wheelchair in particular has huge consequences for me lasting several days which leaves me not functioning to the same level or able to do as much as usual in bed. The classic increase in symptoms and a decrease in functionality. The positive is, though, that this increase in symptoms and PEM generally is not as severe as things used to be.
Many (mostly non-sick people) measure improvement just by time out of bed but it’s not just those out-of-bed things but life in bed that matters so much as well. My quality of life is so much better than it used to be. I can sit propped up by my bed at a reclined angle for almost all of my waking hours. I can have the blinds open and in the evening my lights are set to 15% which is huge. At one point I wore sunglasses even with the blinds closed and if I had light it was one single lamp as dim as possible. I’m able to spend many hours each day crafting, occasionally watch a bit of TV (every couple of weeks normally as it does increase symptoms), and scroll as much as I want on social media generally. My symptoms are managed so much better by (many) medications. I struggle more with cognitive activities but less than I used to. I write most of my own emails and do some of my admin now. I still struggle with things like reading, audiobooks don’t work for me and like I said I don’t watch TV often. Many people I know can watch TV or listen to audiobooks but not craft and that shows just how different things can be for people. For me, it generally uses much less cognitive ability to craft than those other things.
Something I need to address in this is privilege. I have been kept alive by carers, whilst it didn't change my ME level as I physically couldn’t and can’t do the things they do for me it does literally keep me alive. I make a distinction on that as I know some people need care to stop worsening because ME wise their body doesn’t tolerate making food or getting to the kitchen but they have to push to try - I couldn’t have pushed to try I physically was unable to walk or move to get to the kitchen for food etc. I have been supported by my family financially. I have received benefits and received support from family in applying for those benefits as it’s not something I was well enough to do. These things have allowed me to access private healthcare that has given me many medications which have drastically improved my quality of life. These medications aren’t necessarily to treat whole illnesses but reduce symptoms of them which improves my quality of life. And then it’s even a privilege I can tolerate these medications as many can’t due to things like MCAS and medication sensitivities. Private healthcare has given me helpful advice and saved me from horrific treatment by medical professionals that continued to make me progress in severity for years.
And luck. That’s the other big thing. People can do everything I’ve done, even have not been made worse by harmful treatment, and still not improve.
Something else to mention is the risk of worsening. It’s something I have to consider, regardless of if I want to or if it’s negative, to try and prevent it. This could be from trying to do things, I am at a point where to see my improvement I need to take some risks where I have no clue if they’ll crash me and no clue if the crashes will compound to lower my baseline more permanently. It’s also not just my choices that put me at risk but my other health conditions. I have been in and out of the hospital since August due to gastroparesis and being reliant on an NJ tube which constantly fails. Every time it causes severe symptoms with a lasting effect. Not only due to the environment of the hospital but also dehydration and going cold turkey on almost every single medication. It’s terrifying that it’s not even in my control.
I think the thing that really sums up the improvement is that when I am doing these things I dreamt of, like going to the garden centre a couple of weeks ago, the impact and PEM from that is less severe than my baseline was a few years ago without having done anything.
I am extremely grateful for these changes and improvements in my health and I hope I can be lucky enough to have more, and that I can prevent worsening, I hope this for everyone with ME and other chronic illnesses but change is needed systematically for that.
