Six minor, but very stupid annoying things about ME/CFS

The worst things about CFS is how much time we spend feeing sick, miserable and in pain. The worst thing about CFS is the sharp ache of missing our past, healthy, energetic lives, or the imagined healthy lives we never had. The worst thing about CFS is how vulnerable it makes us to abuse, poverty, natural disaster, stress, and anything that disrupts our rigid sleep, rest and feeding schedule. The worst thing about CFS is not being taken seriously by some doctors, and never knowing what caused our mystery illness….

There’s quite a few worst things about CFS that are definitely complaint-worthy, but there’s also lots of little things that feel comparatively petty, but niggle anyway. Sometimes it helps just to have a good old whinge about them! Here’s a few: 

1. Getting fat and stupid diets
Some people can lose dangerous amounts of weight with their version of CFS, but with complete lack of exercise ability, my body tends towards weight gain. I have been watching my diet for the first time in my life, so I haven’t yet become actually obese, but have definitely gained a few kilos of extra pudge. Besides arguably shallow, irrelevant, yet still powerfully present aesthetic concerns, it's just UNCOMFORTABLE. Getting more chub rub (despite zero exercise), having bigger boobs, not fitting into some of my clothes anymore and having more squishy bits getting in the way when I’m trying to do certain twisty moves in yoga is UNCOMFORTABLE! Seeing myself in the mirror can trigger various shame and toxic thought spirals, which I then get annoyed at myself for caring about, as I am being influenced by the unethical and COMPLETELY STUPID beauty industry that aims to keep women constantly miserable, self loathing, and spending money on trying to “fix” themselves. But I know if my incremental weight gain continues, I could become an unhealthy weight with a plethora of brand new, associated, unenjoyable health concerns. And diets are WAY less fun than exercise. In fact, they are most often completely boring and stupid and make me grumpy and I DONT LIKE THEM AT ALL. Ugh. I have developed fairly sustainable healthy eating habits, which involve intermittent fasting for about 16 hours a day, and an 8 hour eating period, plus I eat fairly low carb and mostly paleo food which keeps me satisfied for longer. I eat mostly vegetables, small amounts of wallaby meat, healthy fats like olive oil, and maybe too much dark chocolate and nuts. I ALREADY EAT HEALTHY! I ALREADY RESTRICT MY DIET! However, I still continue to gain weight, so I probably need to do something more. But what? When I tried longer fasts, or the 5:2 diet, I got very cranky and cracked and ate lots of bread and cake. SIGH :( Boring! 

Additionally, I am always meaning to try various gut-healing diets like the auto-immune paleo diet and the GAPS diet, in case they help my general health. But I have been chronically procrastinating about doing these because, like all diets,  they are BORING and HARD and bone broth and organ meats are rather unappealing. Diets take a lot of willpower, which is a limited resource, especially when it comes to delicious dairy products. Ugh. Boo.  (But AT LEAST no doctors yet have assumed that the reason for my health problems is being overweight, rather than the other way around.) 2. Being a party pooper / the fun police  

When I was really sick and intolerant to sounds, I was often needing to ask my housemates to turn their music down, and constantly feeling guilty about being the fun police, which was really wearing. It was really hard and I know it annoyed them too and they’d have preferred not to live with a sick person, even if they were mostly good about it. So I felt sick AND guilty about something I had no control over.  (I have since tried to only invite housemates who prefer the quiet life themselves, so things have improved for now.) 3. Less tolerance for other small things going wrong, and being fearful that small things won’t heal 

CFS is one giant thing that’s wrong with my body, and I spend much of my quota of tolerance and acceptance being okay with that. But if a new thing goes wrong with my body (or in my world), especially if it is ANOTHER unexplained thing, like a random pinched nerve or a weird itchy sore, I’m more likely to be upset and catastrophize that it's never going to get better. I’m not as confident in my body’s healing capacity as before, as that confidence was cracked by getting sick four years ago and not getting better. (Mostly, however, the small things do get better. My papercuts DO heal! Well done body) 4. Stupid health books 

Stupid health books that all say contradictory things. So many of them. Piles of them.  So many quacks, writing books, trying to sell online courses and expensive supplements and $700 skype consults and courses.  And they sometimes say things that I think are pretty stupid and definitely unfun, like try drinking 2 litres of celery juice a day and doing coffee enemas. And even though I think they’re stupid, I feel guilty for not trying them, because it means I haven’t tried everything. Ugh. Stuuuuupid!  5. Sunny days being the worst.  

Perfectly beautiful weather days and happy events like weddings can make me sad. Sad about missing out. (I am getting better at not getting too upset though. My life is ok). 

6. Looking healthy

I guess if it came down to it, I would choose looking healthy over looking rat-shit-sick, but it’s just weird that when I am really seriously disabled, I look perfectly healthy. I feel awkward when using disabled car parks, when meeting people who don’t know my story, or when walking along the footpath slower than an old lady. I feel insecure that people might think I’m a hypochondriac, mentally unwell, lazy or a faker. Instead of explaining myself, I often pretend to be normal for a short period of time, and then pay for it later. Or I make up lies about recovering from an injury. I have a car sticker that says “not all disabilities are visible”. I wish I had a little sign above my head that said that too. A minor thing, but a constant, 

Anyhow, bla bla, thanks for listening to my whinges. Sometimes whinging gives temporary relief. Letting all the frustration out. Ughrghghghghfhhghghughh! CFS IS A STUPID ANNOYING THING!!!! So annoying that I don’t even have any funny illustrations for this post. Maybe I’ll work on them later. 

Thanks all. Time for another nap!