In today’s blog, I want to talk about living with ME and my mental health problems. You may have seen from previous blogs, that I live with severe depression with psychotic symptoms, as well as anxiety, panic attacks, and C-PTSD (a new condition to my list of conditions, but more on that in another blog). Balancing my life with these is challenging enough. Days where depression kicks in so hard that you feel unable to leave your bed. Hallucinations that still take over my vision like someone just blindfolded me. Crippling panic attacks and anxiety that often keep me awake at night… or stop me from doing things such as leaving the flat because of the fear of seeing the outside world.
They are just some of the difficulties I face with my mental health, and truthfully, I didn’t imagine anything would be worse… but then January 2020 came. In and out of hospital for 3 weeks, and then finally getting the diagnosis of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). The condition affects me in ways I never imagined. Constant severe fatigue that resting or sleeping won’t heal, pain that is so agonising that I’m currently on two different high-level pain relief, feeling overwhelmed by the littlest sounds or lights. They are just a small snippet of what I go through with my ME. And I aim to write more in a future blog. Because of my ME, I now use a walking stick wherever I go, and use my wheelchair the majority of the time I go out and about. They say that between 150,000 and 250,000 people in the UK have ME/CFS (source: https://meassociation.org.uk/about-what-is-mecfs/) and so far, there isn’t a cure.
It’s now May of 2022, I’ve had at least two years experience with ME/CFS, and I’ve had plenty of years experience with my mental health, so what is it like living with both?
Truth is, it’s been difficult. Having already had severe depression before my ME/CFS diagnoses, I thought I couldn’t possibly feel any worse in that side of things. I was wrong. Having ME/CFS meant that a lot of things I once enjoyed had to be paused or stopped because my energy and pain levels just wouldn’t allow me to do them. My partner had to carry me to the bathroom on many occasions because my body was just stuck, feeling heavy yet weak. But too exhausted to walk to the bathroom which was only a couple of steps away from where I was. Plus, I was diagnosed mere months before the pandemic and lockdowns came in. This meant limited support in many aspects. I felt on my own. No wonder it affected my mental health.
But there are some good positives though. Before my ME/CFS diagnosis I was always busy. Doing things for myself or for others. I was constantly busy to the point others around me told me “I had to have a break, or I’ll make myself ill.” In hindsight, perhaps I should have listened to that comment more. Now with my ME/CFS diagnosis, I am forced to rest because my body just can’t do it anymore. And because of this forced rest, it means I’m somewhat resting my mental health too. I’m more aware of my health needs, and so when I do rest, I will often spend time thinking about what could help my current state of mind or my physical health.
I want to close by saying a couple of things quickly. I still struggle; I’m lucky in my position that I can still do some things, where others aren’t so lucky with ME/CFS, and that the above is just purely based on my experiences with living with ME/CFS and mental health. There is more I could share, but that will be in another post.
Secondly, I want to give a big shout-out to those who have supported me through my journey with both conditions. If it weren’t for those people, life could have been drastically different. And I hope one day I’ll be well enough to repay them in some shape or form.