When I have a pain flare up, which often coincidences with PEM (Post-exertional malaise – the increased symptoms that comes after an activity when you have ME), it takes so much energy and leaves me lethargic and weepy. I try to think positive, but it’s like I’m always at the brink of tears. Like I carry a great sadness, my whole body just feels sad.
It’s tough to keep my nose above the water these days, especially as I can’t do anything to cheer myself up. The stress of all the things I need to do that I’m unable to because of my health is immense. I try to let go, as I can’t do anything about it, but I constantly feel as if I should just try more.
Some days this chronic illness thing sucks more than others.
It still amazes me how affected I am by everything my brain has to process, all the impressions the world brings. My fiancé and I went to a store today and within a minute I had a massive headache and I was so dizzy I felt like I’d fall off the wheelchair and/or vomit. Just by all the colourful merchandise, people going around, smells, noises etc. I am generally better in the summer, (otherwise we couldn’t go on all these errands at all as my fiancé doesn’t have a drivers license) so I thought I wouldn’t get so poorly, and not so fast. It got a bit better when I got used to the environment, only to get worse again as my brain was truly overloaded and my energy levels sunk fast. They’re not exactly big to start with…
This is certainly not anything that is talked about, and I think it should be. I had no idea that was a symptom of chronic illness, and I don’t think people in general knows or understands how hard it can be, just being outside of your home, or having someone in it.
I wish it would be more known, and that people would take steps to help everyone that suffers from sensitory problems. It’s not just people with chronic illnesses, but people with other disabilities or neuropsychiatric variations as autism or adhd.
A few things that can make it easier for us to handle the outside world is
- No music in public buildings.
- No perfume among other merchandise.
- People being careful with their use of perfume and perfumated products such as softener (I have on several occasions gotten reactions from softener in other people’s clothes).
- No blinking signs or window products.
- …please do fill in the list in the comments as I can’t remember more right now…!
I was super tired after this ordeal but as I had bought some towel hangers for my mum we went over to her place and invited ourselves to lunch/dinner. A very good exchange for a few towel hangers, all of us thought. My mum had been looking for towel hangers for over a year, so she was happy. My fiancé and I didn’t have to cook and got fresh cod – yummy! – and my parents were happy for the visit, especially since they were a bit bored with bad weather in the middle of their vacation. Win win.
My brain is so rattled from earlier today it has decided to keep me awake though. Hope I’ll be able to sleep soon cause I am so so tired.