10/04/2015

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

12 comments

  1. I agree it's not invisible, people just don't notice or choose not to. I have given up on make up, its too much effort to put it on along with everything else, so I always look rubbish and am past caring really, its not our fault and we try our best. I think you look beautiful even when you look so ill, so don't put yourself down too much.

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    1. Thanks Jane, It definitely isn't invisible is it? I should probably save spoons rather than using to put make on but I'm quick so doesn't take long to do!! Hugs xx

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  2. It's not invissible. It's better for some people look to other place, specially doctors who don't know what to do with us and the administration bc that means money.
    Sad but true.

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    1. Yes very true, not good is it :( thanks for your reply & hope today isn't too much of a bad one xx

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  3. I always think this too- if I'm not wearing any makeup then I look absolutely awful and it's so obvious that I feel poorly! I'm totally with you on the ignorance thing too- I went shopping the other day and I was sat down on the seats where you try shoes on for a while and the amount of dirty looks I got just because they didn't think I was entitled to sit in that area, I was so angry! Xx

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    1. Thanks Lauren, it's so frustrating when people are blatantly assuming we're ok! In this day & age there shouldn't be so much lack of understanding really. And thank goodness for make up hey!! Xx

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  4. I am so sorry to read you've had such a tough time of it Alison. I too can reach the point where I'm just so sick and tired of being sick and tired and need a good cry before I pick myself up again and continue on. I agree with you it's not invisible. Especially not after years of living with these illnesses. I would say I have skin that tans super easy and I normally have a bit of colour about me, even in the winter. However, these past few months I definitely look "peely wally". I too am rocking some awesome (not!!) dark circles. I have never been one for wearing much in the way of make-up but I'm so self-conscious about looking.... shit, to put it bluntly!!... that I am looking into some easy to wear make up for the days I am able to do more.

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    1. Thanks Donna, so hard isn't it. I am hoping for lots of sunny days as I love the feel of it on my face & although it takes ages to tan I feel so much better with some colour on my cheeks! I bought a new concealer recently for under my eyes & wasn't very impressed but realised I've not been using it right & now it's great!! Hoping you pick up soon xx

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  5. I don't think it's as invisible to people who know you. Although the comparison picture does make it obvious. My OH knows when I'm having a bad day because I don't even get dressed. Hugs and thanks for this honest post. I should read your blog more often. X

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    1. Thanks Michelle. Definitely obvious to those who know us.. I can literally turn grey instantly when I start flagging! Xx

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    2. Thanks Michelle. Definitely obvious to those who know us.. I can literally turn grey instantly when I start flagging! Xx

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    3. Thanks Michelle. Definitely obvious to those who know us.. I can literally turn grey instantly when I start flagging! Xx

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