ME: Sick and Tired of being Sick and Tired

posted in: ME / CFS 0

I feel rather guilty writing this but people with ME / Chronic Fatigue Syndrome do often feel guilty. My husband has two blood cancers. Yet at the moment he can enjoy working in the garden and playing with the dog. I, meanwhile, am feeling sick, achy, shivery and struggling to move around the house. And feeling guilty, trying to hide how bad I feel. Why? Because it’s ‘just’ ME.

People are fighting for their lives with COVID-19 and cancer. I ‘just’ have ME.

I am so fatigued that frankly I want to die. I’m hungry but too weak to go and get food from the kitchen. Yet this illness won’t kill me and Husband’s cancer will at some point kill him so I feel guilty because it feels like my illness doesn’t measure up. And of course it doesn’t in the sense that people don’t die directly from CFS / ME. Yet the day to day reality is that Husband feels much better than I do (even when on chemo for the most part) and he has a far more active life than I do. He has the energy to do what he wants to do. I’ve had ME for so many years that I can’t remember what it was like to have energy and it’s got to the point that I don’t really enjoy much anymore because everything exhausts me. If someone were to wave a magic wand and tell me that I could go anywhere and do anything it wouldn’t help because I no longer have the physical capacity to do much. That includes writing this, which is why I’m typing it up in small chunks after the flare-up.

The flare-up blindsided me, feeling as if it had come out of nowhere. I think it was because I had to write a difficult email (it took me a day and a half to write it). I slept poorly and then woke feeling grotty, headachy but normal. I felt so weak after breakfast that I went back to bed. All my muscles were achy and I couldn’t stop shivering. I went to bed fully clothed with a hot water bottle, still shivering. My muscles ached, my skin was super sensitive and everything felt like it was burning. My face was red and really ached and even the feel of sheets was uncomfortable – everything burned. I couldn’t help literally whimpering at times – there was no-one around to hear so I didn’t have to be brave 🙂 .

The queasiness I’d been feeling became more urgent and I quickly got up and headed to the bathroom, announcing to a surprised husband, “I need the bathroom. Now.” “OK, door’s open” was his calm response as I stumbled past.

Repeated vomiting isn’t anyone’s favourite thing. The last time I remembered something like this was after I’d had to to be interviewed by police about sexual abuse in childhood to get the abuser on a register and prevent him accessing children he was about to become step-parent to. On that occasion I scarcely left the bathroom for 24 hours and didn’t stop vomiting until I’d been given an injection of something in A and E. At least this wasn’t that bad. But I felt really lousy. Husband brought me some Metoclopromide, which was out of date but I was so desperate that I didn’t care.

People think that ME is just being tired. Vomiting seems to be one of my body’s stress responses – not immediately after the stressor, usually 1 or 2 days later.

I couldn’t go back to bed because the acid in my throat was too uncomfortable. My hiatal hernia is usually pretty well behaved but it doesn’t like stress and that day my body was having a stress party. I was propped up on the sofa, with a horrid headache, skin hot, face red, nursing a temperature but one which didn’t exceed 37.7. ‘Just’ the ME then.

I managed to eat some dry cornflakes and toast and Husband made me tea because I couldn’t manage coffee – it was that bad… He hates the smell of tea!

I could scarcely move for the rest of the day. It was a horribly boring day. I couldn’t even manage to listen to audio books. Husband looked at me quizzically, “When it hits you it hits you very hard, doesn’t it.” Thank the Lord that it didn’t hit me when he was feeling ill or we’d never have coped.

The next day was a bit better but I still had to be really cautious with what I ate. I managed some dry cornflakes and then fried potatoes, which felt like a huge win to both of us. I was keen to try a short walk and managed 10 minutes but found it very hard. It was great to get outside though.

My skin was still red and hot and my muscles ached but I could feel things easing a bit. Thank goodness for hot water bottles. I did one or two small jobs like putting the washing out and doing a little washing up, with a long rest in between – little triumphs over the domestic chaos.

Day 3 was a bit better again. I managed a 15 minute walk, albeit slowly. I think it was probably a bit too much but I so wanted to get moving. After a day of resting and small jobs I did a 10 minute walk but couldn’t have done more.

The flare-up was a really good reality check, a reminder that I have health issues that I need to address. Normally my ME is largely invisible. I might look pale and be slow but it’s easy to ignore it and push on. This episode was blindingly obvious to both of us.

It also made me realise more than ever that I shouldn’t complain about my ‘normal’ since it doesn’t usually involve much pain or nausea and vomiting is mercifully rare! I do frequently experience low levels of pain, aches, shivering an a raised temperature but nothing of note. Perhaps I should pay attention to the warning signs before they become so much more obvious. But there’s always so much to do!

End of ME rant. Five miserable days but I got back to my normal – bit slow, bit pale but it’s great!

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