CFS Diary: the randomness of ME/CFS symptoms

This is the first post in a new series, it will be a sort of diary, where I share my day – a little peek into daily life with chronic illness.

The following post was originally written in 2015, just a month after diagnosis, but I thought I’d share it for some insight into what day to day life is like with ME/CFS. I was still getting new symptoms constantly and they were all so new and bizarre to me.

Throwback to June 2015

This week I’d say my main issue has been pain. I’d wake up in pain, in the night, in the morning, I’ll have aches all day, toothache, headaches, migraines, stabbing pain, hip pains, light sensitivity pain… All sorts.

I’d still have a bunch of other symptoms, but I’d say it’s been a relatively good week.

I can function in the house with pain. I read, draw, cook, eat, maybe wash some dishes after, and I can rest whenever I need to. I sit down most of the time anyway, praise God my whole studio flat is probably the size of your average bedroom so there’s not much walking to be done!

My left arm is bleh most of the time, feels numb or dead and painful all at the same time, so sometimes I can’t even draw without the shakes coming on. The pain is mostly bearable, but sometimes it gets to the point where I need to drop everything and lie down. And admittedly sometimes I cry… Especially if it’s the stabbing pains in my hips, they’re just horrible! 

I’ve had the shakes a few times this past week and headaches just come and go daily. Had a couple of good days in between though, so that’s been a blessing!

Brain fog is a funny one… Imagine Dory from Finding Nemo. Sometimes looking at numbers or words and thinking “what am I looking at? What was I doing?” blank.

Energy is another unpredictable one, I can be seemingly fine one moment and then it just drains from my body like a wave. It literally feels like a wave from my head to my toes and then I just want to lie down.

Sometimes I actually just fall asleep where I am, but that’s on a bad day when I just can’t… This can even happen when I’m already lying down!

Ever been lying on your bed resting and then felt like you might collapse from exhaustion? It happens!

Jelly legs are a funny one too, it’s like being stuck in slow motion. I want to get from A to B and my legs are dragging like I’m wading through peanut butter… Like in a bad dream when you’re trying to escape, but you just can’t move.

Sometimes it will be like the ground is rubber, like walking on a trampoline. Very strange sensation! I think I walk funny sometimes, a friend actually told me that, so really I know I do, lol… No matter how fast I want to go, my legs will remind me it’s not happening today!

It’s okay, I’m still up most days and get to do some art and cook once a day at least. Its been a good week because regardless of all the symptoms that can be painful or debilitating at times, I’ve not felt as frail and useless as the two weeks prior. I had to stay with friends because I was too ill to take care of myself. The trips to the hospital for tests took too much out of me and I couldn’t go back and forth. At least I have been well enough to be back home taking care of myself this week.

I’ve had great friends come over to hang out and they’ve blessed me by cleaning and cooking for me too. It’s so important to have a good support system. Although it’s hard to reach out and ask for help, there are many people who would gladly lend a hand if they had permission to and knew you needed help.

Such amazing people God has brought into my life! For this I am extremely grateful and praise God.

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