Tuesday, 27 January 2015

M.E. is...

Having your first meal of the day at 9:00 pm because you're having a flare, and have had to stay in bed all day saving up the energy to go to the kitchen.

Going shopping and all of a sudden finding yourself at the top of an escalator unable to tell if it is moving towards or away from you.

Being out in public and asked to sign something.  You panic because you can't work out which combination of letters your title is Miss, Mrs or Ms?  You can't ask someone as that would seem ridiculous  ...you end up writing Mis!!?

Waking up in the morning and having to wait an unknown amount of time before having the energy to get out of bed.

Getting out of bed in the morning and then immediately having to lie down on top of your bed due to the exertion of getting up.  But its okay because you have made progress with your day, you are now on top of your covers.

Having to wait for your condition to improve before you are well enough to make the 1.1/2 hour journey to the nearest M.E. specialist.  Having friends that never reach that point because they don't have access to advice from an M.E. specialist.  Being discharged after 6 weeks because that is all they can offer.

Going to the doctors only to be told that you are a lying about your symptoms.  Then being given medical advice that you know will worsen your condition.

Being told you have a mental health condition just because you refuse to follow the advice given to you by the doctor, and then being offered no more help.

Being unable to get out of bed for more than a few minutes a day and that being normal.

These are just my experiences mostly as a mild-moderate sufferer.  Experiences of a severe sufferer who is bedbound may be:

Forgetting what the sun looks like.

Forgetting what fresh grass looks like.

Forgetting what it feels like to put your feet on solid ground.

Hearing that the living room has been decorated but not knowing what it looks like.

Not having any friends because you have been too ill to communicate for may years.

What are your experiences of M.E?

Never loose hope

No comments :

Post a Comment

Please leave a comment! I love hearing what my readers think and always try to reply to comments. If you have a blog, please link it with your comment and I will have look.