Ah hello again pain, my old foe.
I spent 24 hours away from home; walking, climbing stairs, running for trains, carrying bags, late night, sleeping in a different bed. At the end of those 24 hours I was exhausted and in pain. My neck and shoulders were stuck and sore with the pain radiating down my arms. Even my hands hurt. My hips and back ached. My brain clouded with fog.
M.E. causes post-exertional pain and fatigue. This means you can feel fine doing something but during the next 24-48 hours the pain comes back to haunt you. I can pinpoint every pain to every action I did. The pain is bad enough, but at least you can treat it with rest, hot baths, hot water bottles and lots of water.
What is worse is the depression. I think the pain and exhaustion causes a chemical depression that makes me withdrawn and moody. However the knowledge that every action is going to cause you pain is what really gets to you. Sometimes I can tell myself that it is worth it if I’ve had a really good time. This weekend I did have a good time catching up with old friends but the pain is so bad this time it’s made me anxious about a repeat visit. Few people do something knowing that it’s going to cause them pain; the body learns to protect you and advises you not to go ahead by producing fear. When M.E. starts to make me fearful and depressed that’s when it really sucks. A little voice in my head starts being really nasty to me and when you’re already exhausted and in pain it’s really hard to fight it. Anorexia saw her opportunity and joined in making it difficult for me to eat even though eating well is most important when I’m exhausted.
This week I have an interview for an internship that I’m really passionate about and I’m terrified. Not of the interview but of getting the position and not being able to cope. What if it exhausts me and makes me ill? What if it causes me pain? What if I get sick? What if I can’t cope mentally?
I’ve talked it through with my psychologist. I know it doesn’t matter if I can’t cope and need to leave. I know deep down that I’m not disappointing anyone or failing. I know that catastrophising a situation before it’s even happened is very counter-productive (at the Optimum Health Clinic they call this ‘Windows M.E.’ like a faulty computer!). We did a visualisation where I imagined being confident and capable. Even if I do feel ill I’ve learned how to look after myself now and be assertive about my needs.
Throughout my illness my mum has always encouraged me to try things so that I don’t have any regrets. I have tried and failed many times! However I have learned valuable lessons along the way and been amazed at how much I could do before I couldn’t do any more.
Having a relapse like this is really tough. It feels like I’ve gone back to square one, but I haven’t. Recovery is not a straight line, you go off course a lot but your still heading towards your goal because you’re carrying every lesson you’ve learned along the way.
Today I’ve planned my presentation for my interview and bought some nourishing food. I know what I need to do; I just need to silence those unhelpful voices in my head to get to the useful stuff! I need to rest, eat nourishing food (I’ve got a roast in the oven) and tomorrow I’ll start trying to stretch my aching muscles. Most of all I need to be kind to myself. It’s ok to not be able to do all the helpful stuff at first, but just taking a bath last night was a good start. Deciding to eat more today was a good move too. I’ll get there even if I’m crawling.
Fighting M.E. and anorexia is fighting for your life and I’ve written this blog post today to convey how desperately, frustratingly hard it can be some days. It would be so very easy to give up, to give in and there are voices in my head telling me too and they’ve been there for years. I’ve been fighting them for years. It’s exhausting on top of everything else about my condition that is making me exhausted. Fortunately these dark moments are brief compared to how they have been in the past and for that I am grateful, but the fear that a deeper darkness will come is still a constant threat.
I am very lucky that I have friends and family who are there for me, who know my weaknesses and red flags, who are keeping me safe. I owe them my life and I am sorry I have, and continue to, put them through so much. Sometimes it’s hard to reach out, sometimes the voices tell me how awful I am for being a burden to them, but with encouraging words from my loved ones I manage to fight the voices.
Be kind to yourself if you are suffering any kind of pain or exhaustion.
Be kind to others for you do not know if they are suffering in silence.