You know when there’s so much going on that you struggle to put it into words? That’s sort of where I am right now. I’ve been putting off writing this blog update for a while because it feels like there’s too much to talk about. My blog has always been for me before anyone else – and I like to keep it transparent. So I’m talking about it now because I’ve been absent for a while and I want to be transparent about where I’m at on the journey.
On this blog I’ve detailed the horrendous exhaustion I’ve been living with for a long time. Alongside the depression, and the anxiety, it has been very debilitating. I’ve been going through this for such a long time without answers that honestly, I was beginning to feel that there must just be something inherently strange about me as though there was something wrong with my personal character. A part of me had to ask: am I just lazy? Let’s be real about it, I was never likely to run any marathons or go hiking. And then I’d pass out for the fourth consecutive weekend and realise that it wasn’t that I was choosing not to participate – my body simply shut down.
Obviously I consulted (again and again) with my Doctor. My blood tests kept coming back fine. But I wasn’t fine. I went for a shower and then spent three hours shaking on the sofa with no energy left in my body. I spent the next two days in bed because every muscle in my body was screaming in agony. Speaking with my Doctor, we went through the symptoms and the struggles, and everything that we had tried so far. We talked about all the things we had ruled out. And then she told me I have fibromyalgia and M.E (myalgic encephalopathy or sometimes called chronic fatigue syndrome).
Instead of sitting listing all the possible symptoms, I’ve decided to share this watered down visual and highlighted most of the symptoms I’m dealing with daily. There are some fibro symptoms not included but I think that’s a post for another day.
There’s a lot to take in, right? Now here’s the part I’m struggling with the most – they can help me with the pain, but they can’t do anything for the fatigue. They simply don’t know enough about the condition. I’ve spent weeks researching and reading the ME UK website to try and find answers. Sometimes I’m lucky, more often I’m not.
The best suggestion my Doctor can give right now is trying Graded Exercise Therapy. The hope is to build up a certain level of stamina so I can get through basic tasks and get some of my life back. I’m willing to try anything, but the reality is that there are very few success stories. The ME organisation openly states there is no medical evidence to suggest it helps and many ME sufferers say it made their lives worse. One equated it to giving a peanut allergy sufferer a handful of peanuts and telling them to keep trying until they’re no longer allergic. Still, I’m trying to find some positive stories.
So that’s where I’m at. I have a chronic condition that can’t really be treated and I now need to find ways to live with it. Already I’m missing out on family time and memory making because I either can’t stay awake or my muscles won’t cooperate. Sometimes it’s scary – last week I struggled to chew food because my jaw was weak, and I fell asleep standing up so Mr Robinson had to guide me into bed.
I’ve not fully accepted that this is my reality yet. It’s going to take some time. Until then I’m going to sleep – and cuddle my kid.