Humans of ME/CFS

It all started two years ago. For months, I felt exhausted, sick, and would go to bed without eating. Then one day I woke up with a swollen lymph node. My neck went into spasms. I couldn’t keep food down. I couldn’t walk because of dizziness and was in hospital for 7 days. Doctors couldn’t find out what was wrong with me. I knew I was still ill, but I couldn’t bear to be unwell, so I pushed myself every day. I started to get pain in my arms and legs, shakiness, and weakness, but I still went into university, had a social life, and went out.  I never told anyone how ill I was really feeling inside because I didn’t want to be a burden. I desperately wanted to be strong and do all the things I wanted to. I already used to get panic attacks and only a few people knew that.

I am generally a happy person and I didn’t want my mental and physical health to make me feel unable to do things.  Now, I wish I hadn’t tried to hide it and push myself so much. Last August, my legs collapsed on the way back from university. After a few months, I was diagnosed with Lupus, an autoimmune condition, but my consultant says I have symptoms and so much fatigue and pain that cannot be explained by Lupus. I have ME/CFS too.

The worst thing is the loneliness. I used to see people every day. I loved being around people and I still do. But, now I spend most of my life at home—mostly in bed. I can’t do much by myself at home. I crowdfunded a wheelchair recently and I can leave the house, but my illness prevents me from going out much.  Sometimes I think I am feeling better, but if I push myself even a little too much, the pain, nausea, shakiness, dizziness, and exhaustion starts and doesn’t go away for days. My panic attacks have become worse and I dread night time.  The pain is so bad in my legs and arms that I cry in the mornings and at night. I used to look after my mother and do things for other people, but now that I am ill I cannot do that anymore and I feel even more of a burden for it.

I love the days when my boyfriend stays with me and the weekends when my friends visit me, bring me takeaway food, and chat with me. 🙂  I hope that one day soon I start to feel better and that medicine gets a better understanding of how to help people with ME/CFS.  I’ve been told in the past to just get up and walk, which makes me feel like it’s my fault, when the truth is I would give anything to go back to the way things used to be. I feel broken, but I know I have to take each day as it comes.