Is M.E really such an invisible illness?

I have been having a really horrendous time the last week or so with my health. The after effects of my daughter's birthday & party well and truly kicked in. In the chronic illness world it is known as PEM (Post Exertional Malaise). I have felt like absolute rubbish but I have also looked like it. Which has got me thinking about whether invisible illness really is as invisible as the name suggests!

I am naturally slightly olive skinned but my face is always pale. Thank goodness for make up. On a normal day I don't look so good but on my "even worse than normal" days I look poorly. Really poorly. Pale (a nice shade of grey), drawn & just ill! My eyes are a big giveaway. Dark dark circles. People who know me know when I am worse than usual just by looking at me. So it's not really that invisible.

I only tend to go out when I am feeling up to it & I usually have make up on. Even if it's the very minimum, I feel (& look) slightly better with it on. So of course when people who don't really know me see me, they wouldn't necessarily know there is much wrong with me. So in that respect it is invisible. However the fact I am often in a wheelchair when I am out & about is a bit of a giveaway that there is something wrong. Although I imagine people may assume I have something wrong with my legs - which I do - but you wouldn't know it to look at me & unless I wore a badge saying I had M.E then people would have no way of knowing. Actually maybe I am onto something & I will start wearing such a badge!

Then you have the whole judging/ignorance thing. Like when someone as young (sort of) as me parks up in a disabled bay, despite having a blue badge which entitles me to park there, I get dirty looks galore & it's usually from the older generation! When the wheelchair appears I see their expression change & they often look at me with pity. It makes me want to shout at them & tell them to not be so ignorant. Which I may have been known to do but I can usually keep quiet these days. Usually!

Trying to raise awareness of M.E is so important to me. It's the reason I started this blog & I've had so much positive feedback from it which makes me happy.  M.E Awareness Day is on 12th May so I will be doing my bit to raise as much awareness & of course money towards research as possible! My previous post all about what we have planned for our fundraiser is here.

Last week when I was particularly bad for yet another day in a row, I had a bit of a blip & I started feeling like I couldn't cope living like this anymore. You can't imagine how it eats away at you. Changes everything. Ruins lives. But of course I have to carry on. I don't have a choice.

Finally, I want to share a picture that I have posted previously. The images are from the same day within a few hours of each other. PEM takes hold quickly when I've been out & the hours/days that follow are not pretty. I usually end up bedbound which is really hard to deal with. This was before & after I had been to watch my daughter's dance show. The day after was even worse!

Invisble? I'm not so sure.



Ali
ME Mummy A
xx