13 Weird Things That Came With M.E/CFS

We talk a lot about symptoms etc when talking about chronic illness, rarely do we talk about the ‘quirks’ strange things that can happen since being ill. I thought of five straight away but found more as a typed so here are some of the weird things that came with ME.

13 Weird Things That Came With ME_CFS

DISCLAIMER – I am in no way a professional anything and this is my own experiences and you should always check your symptoms/concerns with doctors.

1) I now have ‘my spot’ on the sofa. When I became housebound I got into many a fight due to people sitting in my seat. It wasn’t an ownership issue, I had found the warmest comfiest spot and that was difficult to sit in another seat. I just couldn’t sit anywhere else.  I have found through circumstantial evidence this isn’t uncommon for people with M.E/CFS.

2) I don’t tan in the sun anymore, I just burn quicker. I am a huge advocate of sunscreen and use it on a daily basis. I have been caught out too long in the sun and realised I don’t tan anymore, even if I burn. I don’t know how or why, but it has been a marked difference between before and after ME. Now I wear SPF 50+ and rock the porcelain, ivory look.

3) My ability to do mathematics vanished. I used to be pretty competent at maths and was predicted an A/B for my GCSEs. I can’t keep the formulas and methods in my mind any longer. It’s something to do with the ME affecting the logic side of my brain with poor memory to boot. Surprise surprise I didn’t pass the test. ( I retook it too haha )

4) When my health is bad my nails hair and skin are affected. My nails split and crack. My skin becomes even more sensitive I get spots, dry skin and rashes that are unexplainable. My hair goes limp and lifeless no matter what is done to it. M.E may be an invisible illness unless you know what to look for.

5) For someone who has ME/CFS, I am lucky in the fact I am an oversleeper rather than on the insomnia scale. However, it has to be a dark, quiet (read silent) space. I am aware of all light noise and sounds. I sleep well but only under certain conditions. I also can sleep in cars and sat up -true story.

6) My body hates junk food. I feel that my symptoms are worse with processed food and I just feel like I have the flu more than a typical day. The pain is that at the same time my body craves sugar to boost energy short term. It’s a no-win situation.

7) I don’t go to the doctors as much. This sounds crazy, right? I see my GP normally when it’s something bad or I’ve built up a list to talk about. I have gotten used to thinking most new symptoms are to do with my condition. Rather than spending my life at the doctors, I wait a little longer, unless it’s a recurring illness. I don’t want to be in the doctors all the time, so I try to only go when it’s unavoidable. At the start of my illness, I was in every two weeks minimum sometimes a couple of times a week. Once we established my ‘new’ normal, it changed how I think about my body malfunctioning.

8) I find some fabrics unbearable on my skin. Clothing has to be soft and smooth (stretchy never is a bad thing) for it to be the most comfortable. I live with the motto life is too short to be uncomfortable. Saying that I love fashion, so I try to remain sightly presentable, just hiding the elasticated waistbands.

9) I’m thirsty a lot more. I drink a lot of water and at my worst, I consumed my main calories through soup and smoothies. Being hydrated is super important and I found a double-walled bottle to keep my water cooler for longer.

10) For a long time, my skin reacted to makeup a lot and was so sensitive I didn’t really wear it at all. Over time it has changed but I have to be careful when buying make up from different brands so I don’t end up with a stinging, burning face. Sadly it loves the more expensive and since having my make up artist around due to the wedding I have a bigger wishlist.

11) Different parts of my body can be at different temperatures. My head can be hot whilst my feet and hands are icy. Sometimes one hand is far hotter than the other. Just a dysfunctional autonomic nervous system, nothing much to worry about.

12) Breathing can be hard. I don’t know how common this is but when I’m feeling really unwell, my ribs are sore. It’s like I  have a too tight corset on and my spine is being simultaneously yanked out of my back, in an upwards motion. Not pleasant, but oh so strange because it vanishes just fast as it appears.

13) The weakness in my limbs can be surprising in terms of what I can actually do and the tasks I’m able to do. I use plastic cups nearly all the time or a straw if I’m out. I also have to brush my hair in a certain way and having my arms extended is difficult. I don’t think about it now because it is so normal but the idea of being weak and unable to do tasks, it affects more than cooking, walking or my ‘independence.’

I hope you found this interesting and perhaps we shared a weird thing that came along with chronic illness. I would love you to tell me your strange symptoms and quirks down below in the comments. I want to know!


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