ME/CFS affects everyone differently, while some people are bed bound for years, on the other end of the scale is people like me, still able to live a virtually “normal” life. Still working full time. Still taking part in hobby activities. Still living. Still here. But what looks normal from the outside can be far from it on the inside. Yes, I’m capable of working full time but only because I have a generous boss who doesn’t mind me taking the odd unpaid day as leave if I need it. Yes, I attend dance and flute lessons – but only one or two per week where I used to attend them every single day. Yes, I dragged myself out of bed this morning, but no, I didn’t make my own lunch. In fact, I didn’t even choose my own clothes because I don’t have the energy. I didn’t shower, I didn’t do my hair and I don’t wear make-up. From the outside, it looks like I prefer a natural look, hair down, face bare. From the inside, I wish I had the energy, I wish I had the time to spend each morning to cover the bags under my eyes, to pull my hair into a braid, to make my own damned coffee.
I won’t go into the details of what ME/CFS is here – it’d take waaayyy too long but for a brief description here’s an old blog post of mine – “How can you know?”.
It seems obvious that I would describe symptoms as being the “lows” of this illness, and I suppose, in some ways, they are. Lately the symptoms that have been bugging me the most are eyesight (blurred/double vision), headaches, queasiness, aching or stiff joints and tinnitus. When I was first diagnosed it was intention tremor and shaking that caused me the most discomfort, dropping pens and being unable to control the mouse of the computer were common issues. But to be honest, the biggest low is the pain that this illness has inflicted on others. It sounds pretty cliché but seeing your friends and family realise that there is absolutely nothing that they can do is one of the single most frustrating things in the world. The pain and discomfort of my own body, both mentally and physically, seems insignificant in comparison. I know that desire to want to help, and I know how much it hurts when there isn’t a single thing that you can do.
Another hugely upsetting aspect for me is not being able to do what I used to do. Most days it’s fine and I continue on with life as per my new “normal”. But some days it really gets to you. Maybe you’re cancelling on your friends for the millionth time, maybe you just realised that you really cannot afford the energy to shower today, maybe you aren’t doing anything at all. Whatever the reason sometimes emotions can just sneak up on you and all of a sudden the wave comes crashing down and it’s all too much. Those are the worst moments.
Highs. Believe it or not, there are actually so many highs that are direct results of this illness. The way that this illness has strengthened my relationship with my partner is by far the greatest thing it has and ever will do for me. But aside from that I am actually grateful for a lot of things. I have a new awareness of my own body and mind that I never had before and I have learnt to manage stress and emotions in ways that I never could before. My awareness of those around me has increased and I’m more grateful than ever for the things that I do have, the activities that I can do and the days that I let my heart lead me. Although I can’t do everything that I would like to do, every time I want to, it makes the times when I can that much more special. If there is one thing that this illness has taught me it’s how to stop taking things for granted and to be grateful for everything you have.
This post is Part 1 of 52 in the series – A Year of Growth. The series is a celebration of the first anniversary of The Truth About M.E and is designed to help me grow through my illness throughout my second year of blogging. I look forward to having you along for the journey!