In our shoes

This post has the potential to be very, very long but I shall try to keep it short.

All of my symptoms are classed as normal now, because I have M.E. But of course they aren’t normal. If a ‘normal’ person felt as poorly as we do for just half a day of their life I can assure you that they would not feel that it was okay and fine. Trust me I’ve been there. I kept diaries of my symptoms in the beginning. I am learning the hard way how real M.E is.

How would you feel to have at least a 50% decrease in your mobility levels?

How would you feel to be told there isn’t anything that can be done for you? Worse still, you may be told that this illness that you’ve been diagnosed with isn’t really a ‘proper’ illness anyway.

How would you feel, after years of independent living, to have to rely on your family for almost everything?

How would you feel for it to be necessary for you to be spoon fed?

How would you feel to know that your illness is having a detrimental impact on those around you, who you love the most?

How would you feel to be suffer with an illness so, so misunderstood?

How would you feel to be told that it’s time you got a grip and pulled yourself out of this rut so that your family can get on with their lives…by the very doctors you rely on to help make you better?

How do you think it feels to feel that your life has been taken from you, but you are still alive?

Invisible illnesses are tricky things. I can understand why there are misconceptions about this illness. There is a lack of physical evidence. My blood tests come back clear. There are no physical signs of my pain. My glands are usually swollen, my speech is slower and slurred, I walk at snails pace, but other than that I’m not sure there are any physical signs that I’m unwell, except that I look like death 99.9% of the time haha!

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