I’ve been overwhelmed by the response to this blog. I thought family and friends would read it but not anyone else. It has astounded me that so many M.E. patients have seen themselves reflected in my words.
It has also saddened me that so many have said, “you’re lucky you have friends and family who believe you”, “my family all think I’m lazy”, “my family force me to do things because they don’t understand I can’t.”
I cannot conceive of being in that situation. The loneliness and fear must at times be overwhelming. Several people have asked me if they could share my posts in the hope that friends and family would read it and realise that they weren’t lazy, anxious, depressed, making it up etc. It has been an honour to say yes.
Yesterday I had a bad day. That got me thinking, if I could somehow get into words what yesterday was like, perhaps others could use it to show that they are not making things up. I fear I do not have the words to describe a bad day however.
It all started late the night before, suddenly I felt weak and my joints and muscles began to hurt. I slept reasonably quickly but not comfortably. At five I woke in lots of pain: my back and neck ached; I had a headache (not severe but enough that I could feel it constantly); I had a sore throat (not so bad I couldn’t swallow but enough that again I could feel it constantly); my knees felt like they were burning; my arms were weak and hard to hold up, rubbing my cat was too hard; and my lower leg muscles felt stiff and tight.
I was absolutely wide awake despite my short nights sleep. I wrote my blog in bed for about 30 mins despite the pain but my fingers kept tripping up on the keyboard. I had to constantly delete words and rewrite them accurately! My fingers felt clumsy and there was an aching feel in them.
By six, I felt there was a chance I could sleep. However, by removing the distraction of writing the pain became so bad that I couldn’t. I took some Ibuprofen. I try not to take too much of it because of the damage it could do to my stomach. I’m also aware that the time may come when I need more painkillers and I don’t want to get too used to them now.
I lay in bed until seven unable to sleep, unable to get comfortable. By then I was also hungry which wasn’t helping my sense of comfort. Food, however, was downstairs and I was in pain. Sitting up slowly (otherwise I get very dizzy), I sat at the edge of the bed getting up the energy to move.
To go downstairs I had to take each step one at a time. Each step lead to a pain running from the sole of my feet to my knees. Walking slowly with an unsteady gait I got my breakfast and sat at the kitchen table. I couldn’t sit there long though because my head and neck were unsupported meaning my headache worsened and my back got even sorer.
I then had to face the stairs. I hate stairs, who would ever have thought that stairs would become my enemy. On a bad day, such as yesterday, every step hurts, it takes monumental effort to raise my leg and put it on the next step.
On returning to bed, I at least was no longer hungry. I lay there uncomfortable but at least in slightly less pain because my entire body was supported. At 9.30 I got up, got dressed and went downstairs. I sat there zoned out for 30 minutes. I only got up because my wonderful friend was coming to see me and I really wanted to see her, there was no way I would have gotten up otherwise.
She stayed for an hour which was lovely but I was in pain and struggled to keep up the flow of conversation. By the time she left, I felt deep in brain fog, dizzy and walking had worsened. I lay on the couch for an hour and eventually gave up and went to bed for a few hours.
I slept, which made all the difference. For a few hours, I felt clearer and in less pain. It wasn’t too bad if I literally sat there with my feet up and did nothing but zone out on the TV. As soon as I tried to use my brain, the pain, fatigue and feeling of general unwellness came back and felt debilitating.
By four I was dreaming of bed, we are told however to not sleep during the day so despite desperately wanting to, I stayed up. I ate dinner at six but really only had a few mouthfuls despite being hungry, I was too tired to go through the process of eating.
At six fifteen I went to bed. Within the hour I felt so much better, at times even quite bright. I’m no scientist so don’t ask why but the process of lying down always makes me feel so much better. Every time I went to the toilet however the pain and fatigued came rushing back. I believe it is something to do with the abnormal size and shape of my white blood cells. Don’t quote me on that though!
By ten I was ready to sleep but as happens with M.E. sufferers my brain jumped into over active mode and I couldn’t. I listened to the radio, I tried to do relaxation breathing and I think about midnight I fell asleep.
What I found so difficult about this bad day was – I have no idea why it happened, not a clue. Usually I can say, well it must have been spending time with my friends, walking too far etc. Not this time, this time I had spent the day before recovering from a bad day the day before that. I went for three short five minute walks and that was the most strenuous moment of my day. It made no sense.
Not every bad day is like this, every bad day has it’s own combination of symptoms and severity. Remember too, I’m only a mild to moderate sufferer, for those worse than me, their bad day is something luckily, I can’t describe.
I don’t write any of my blogs for sympathy, I, perhaps pompously, write them to inform people about the illness, about my reality of the illness. This blog I hope will help those people who face disbelief and disgust on a daily basis. I hope the disbelievers, those who don’t give the support they should, recognise their loved one in this and actually ask them about their reality.
Feel free to share this, the more people who do, the less likely somebody today will hear that they are lazy, depressed or making it up.