The pain makes me sad

Disability and illness

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. 

Sensory overload

Disability and illness

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. 

Loss

Disability and illness

I listen to stories, as I can’t read books anymore due to the mental fatigue that comes with many chronic illnesses. I used to be a real bookworm, almost always had a book with me, and read several books per week since I was five… It’s a huge part of me that’s just disappeared, and I miss it so much. Listening to audiobooks help though, it’s almost like when you were little and your parents read for you. I still miss the reading though, it’s not completely the same. 

Another part of that is my studies. I was at law school when I got diagnosed with ME and fibromyalgia, and even if I tried it became impossible to continue as I got worse. I would have started my last term in a month, and graduated just before my 28th birthday. Just thinking about it makes me want to weep. It’s like an open wound in my soul, and I try to not think of it. 

I tried so hard though. I forced myself to go to school even when I was so tired and in so much pain that I almost threw up on my way to school from the tram stop.  (I didn’t have any pain medication at the time, as the doctors thought that I was ”too young”. Too young for pain relief. I’d like to hit them all over the body with a baseball bat and then deny them pain medication and see how they like it!) The last straw was when I cried of exhaustion already on the tram TO school, and didn’t know how to go on. I asked for advice in a support group and they told me to get on sick leave before I drove myself to get even worse. You can’t keep pushing yourself with ME, it only makes you worse. 

Imagine when you have a really bad flu. Then push yourself by going to work/school, the gym, keep the house clean, keep yourself clean, etc. The effect is the same as with ME: You get worse. With ME, that might be permanent.

That was in December 2013, seven months after my diagnosis. In May that year, I walked 10 km with the dog. By January 2014, after an exhausting Christmas and the time for my body to relax after all my pushing, I was unable to walk even 50 metres. I tried, and broke down in convulsions and fever, basically unconscious for several hours. After that, I listen better to my body.

I still push myself too often, and I pay the price, although not as hard a price as that time. It’s like a kind of hangover, but with the added pain and exhaustion of fibromyalgia and ME, and it goes on for days or weeks, or even months or years! I still can’t walk further than 50 metres on a good day in the summer, 20 in the winter.

These losses, how my body and mind fails me… My illnesses might be invisible, but they still make a huge impact. Not only for me, but for my whole family.

Sick & tired

Disability and illness

I am so exhausted, so tired, so extremely fatigued that I can’t think straight. So what else is new, I have ME, what do I expect? 

I think the big problem is that I need to do certain things, I want to do other things, and don’t have energy for neither. That I’m now in pain, nauseated and dizzy does not help. The fact that I’m not able to sleep will definitely not help. I wish I had som respite. I wish I could just get a week of nothing. A week in coma so my body could catch up a bit. So I’m not constantly ”in debt” to some energy bank, starting each day with less energy than the day before. 

You don’t know what tired is until you’ve been sickly tired for what feels like forever. How did this happen? You never think this will happen to you. I never did. These things happen to other people, not me. I was invincible. Until I wasn’t.