It’s a number of months since I blogged. Its been an interesting time for me in my ME journey. I had a much improved three months in the spring through to the summer. My ME went from the bottom of moderate levels into top-level moderate and into mild. I was able to get out a couple of times a week, rather than maybe once a fortnight or once a month prior to that. My cognitive dysfunction was much improved and I was even looking at undertaking a really low level of auditing work as a consultant. It gave me a potential step back into the social work world. My improvements were thanks to an existing drug that I spoke to my GP about, where some people had seen significant long-term improvements in the US. My Aripirizole journey is perhaps for another blog, as it’s a controversial topic in the ME arena as the drug is traditionally used in the field of psychiatry for conditions such as schizophrenia. It reduces inflammation in the brain and this is what seems to be helping folk with ME see improvement. The short story is that it helped me immensely for about three months until it didn’t anymore.
During those three months of significant improvement, not only was I at the point of considering work, but it was like my creative juices started flowing and I regularly played my guitar for the first time in a long time. I found myself writing songs and a friend brought a load of recording equipment that his band wasn’t using. I’d spend time learning recording and editing software and crudely begin to record a number of songs. Some ok, some not so great, but all the songs were an expression of ME/CFS and its impact on sufferers. The songs were deeply personal to me but as I started sharing them online I found that, despite my ropey singing voice, people were relating to them on a deep and universal level. I made new online friends during this time and someone offered to produce and master a song for me and we went on a creative journey together despite being thousands of miles apart.
Then the medication stopped working and I was back to barely surviving, never mind executing the various fine motor skills required to play guitar. I was in a hole and it felt like it was going to be a real mystery as to whether I was going to get out again. I’ve seen some small improvements but each day requires micro-management of activity levels again.
My music mastering wizard friend in the US, Treesha, recently got in touch about returning to a song that I sent her earlier in the summer and which she was keen to complete and she’s done an amazing job. It’s called ‘Another way’ and for me, while rather bleak, expresses the reality of ME and Post Exertional Malaise, or the ‘crash’.
‘I find myself in this hole again, deeper than the deepest of seas, it’s like I’m on the voyage of the dead again, put here by mistake. Legs gone, head gone, hope gone. I can’t keep going but there’s no way to stop. Perpetual motion, eat, rest, sleep. I’m thankful for this thunderstorm. It tells me that I’m small. Legs gone, head gone, hope gone.
And if there was another way, I’d take it.’
There’s been a bitter battle waged over the summer and into the autumn months between those of us with ME, who want harmful treatment practices to stop, and those who appear to want to continue to perpetuate harm through medical gaslighting and dangerous graded exercise as we continue to wait for the publication of new NICE guidelines. The psychological impact of this battle has been so emotionally draining for so many of us. Sometimes it is easier, if not essential to stay away from the battle for emotional self-preservation.
If there was another way, I’d take it.
Various professionals of the bio-psychosocial persuasion have talked about Long Covid and ME in terms of a psychological block that is preventing patient recovery. The reality is, however, that this is a real biological condition and it’s acutely hurtful to suggest that we don’t want to take steps which might lead to recovery. My three months of improvement were amazing. I was immensely grateful for that time, just being able to start and walk further, to feel a lightness in my legs that I hadn’t experienced for so long. Why wouldn’t any of us want that? There’s some deep pessimism about the human spirit to lump ME and other chronic illnesses into a specifically psychological framework. If there was any way to get out of the ME hole beyond managing activity levels to see minute levels of improvement, any opportunity whatsoever to live a life with purpose and meaning beyond just surviving, we would grab it with both hands. Yes, for some with ME, depression is an issue but it’s a result of the state of being that ME leaves us with. So often depression can be due to environment or circumstances but I don’t believe that anyone chooses to remain in this state of living if there was an opportunity for wellbeing.
So my song is about affirming that with ME, we’re in a hole, it feels like we’re on the voyage of the dead: alive but yet not living. If there was another way, we’d take it. We don’t reject CBT and graded exercise purely out of laziness or pessimism, we reject them because we know they won’t contribute to our recovery and are harmful. We need solid biomedical research so that we can have access to treatments that may genuinely help, rather than searching for sticking plasters that are unlikely to offer relief.
For the time being we have to work with what we’ve got. But believe us when we say, IF there was a way out of the hole. We’d take it.
Listen to Another Way by Talmandan on #SoundCloud