ME Awerness Week- And the rest

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me. For more information on ME see the ME Association website.

I didn't post yesterday because well I wasn't well enough so I'm calling this post and the rest.

Ongoing flu like symptoms is probably the hardest to explain but its something everyone has experienced. In fact if you had the covid vaccine hangover you've experienced it very recently. Its that general unwell feeling you get when your immune system is fighting something in your body. I constantly feel like I'm "coming down with something". It can make it really hard to tell when I'm ill. A lot of times I don't know if I have a cold or "just ME".

At times light and sound get physically painful. Thankfully I'm not one of the people for who this is a constant problem. 

Smart bulbs are great for this because I can alter the colour and brightness to one that is less painful. Unfortunately the outside world is not as easily controlled. To try to cope with this I'll often be wearing sunglasses even on overcast days. And blue light filtering glasses can help in brightly lit places like shops. I have a wide range of earplugs and noise cancelling headphones are a blessing.

Gastrointestinal problems is a horrible symptom which thankfully hasn't effected me too much. I do currently have problems with digestion but I'm really hoping they are down to my gall stones and will magically disappear when my gall bladder is eventually removed.

The medical response to this symptom is terrible. People are often left relying on liquid food. It has even led to people with ME literally starving to death when doctors didn't believe them about the problems there were having with food.

These are all the major symptoms but there is a long list of other symptoms that people experience with ME. For me there seems to be just a general worsening of pre existing conditions. Foe example my asthma, allergies and eczema are much worse than they were.

I am generally considered to have moderate ME (the rating scale can be found here). It even seemed to be improving to the point where it could be considered mild before I suffered another set back. I can care for myself and work part time with some adjustments (but I have to sacrifice anything fun to do that). I can walk short distances but need a mobility scooter for longer ones. I am in the weird hinterland of being disabled but not disabled enough to qualify for any help. I am aware how much worse off some people are with this illness but even those of us with mild and moderate ME need much more help than we can currently access.