When Invisible Becomes Visible

M.E/CFS is classed as one of the many invisible illnesses & as such, can make it hard for people to truly understand just how sick it makes you.  When M.E/CFS Warriors (I don't like the term Sufferers, though we may suffer, we still fight!) around people, we will always try our best to look ok, I know I certainly do - doing my make up & hair helps with the illusion, along with a smile & a repetitive "I'm ok" or "I'm fine" when asked how I am. I actually don't like talking about it too much really, mainly because when I am out, although I likely feel really sick, I like to try & forget about it the best I can.

I also try my best to walk normally, despite the pain my legs might be in, hobbling around in my normal fashion will only draw attention.  This may lead to what could be an uncomfortable conversation & a person making "Awww" noises, looking at you like you're wounded but all the while probably thinking "But you don't look sick!" I probably don't in that moment & yet my body will be screaming at me because of the effort I've made to look "ok".

However, even though at a glance, you can't see M.E/CFS, there are actually visible signs of it, if you look closely enough (please note I'm not encouraging you to start staring intensely at someone you know with M.E/CFS, that would just be weird) & because of this, there has been a new hashtag started on Twitter - #youcanseeit  It's been done to raise much needed awareness & understanding of this awful illness. Although I'm glad about this, being the type of person I am (don't like showing my weak sides, writing this blog in itself is an amazement, as being ill isn't something I'd normally share in detail with everyone!) I wasn't sure if I actually wanted to join in & make my invisible illness, visible to others, as in give away the tell tale signs of it.

But keeping my invisible illness invisible was soon to become harder & a decision to make it more visible, though I wasn't too happy in making it, was now a necessary one I had to make...  Almost two weeks ago, I was on an outing but began to get very unsteady on my feet.  I struggled to get out the car & when I was in a friend's house, I found myself having to cling to the furniture just to get around.  I wasn't there long & actually struggled to get out of the house, resulting in going down the stairs at the front door a bit awkwardly. I actually think this is how I damaged my knee. (See my last post for details)

When I got home, I was chatting with my mum & decided it might be a good idea for days that I feel like I could have a wander but a bit unsteady, to have some crutches or something to help me walk.  I mean it's not exactly great having people watch you cling to their furniture as you try to get out of their house!  So I ordered some crutches & after taking the plunge to do it, I actually felt good about it, I know really this is going to benefit me in the long run in my recovery & to also keep my mood up, as I won't feel as nervous going out knowing I would now have help to walk if need be.

My crutches arrived a few days later & so I swapped the borrowed ones I was using for my knee, for my nice shiny new ones! I have appropriately decorated one of them with the Spoonie Wish Bracelet I got from Millesime Designs, so when I use them I'll always have a spoon (google The Spoon Theory if you want to know more) with me to remind me to still take it easy & save a few if need be.

Now the original plan was to use my crutches only if needed, so I won't get dependant on them. But damaging my knee has meant that I have to be on the all the time at the moment. Now has then given me a visual sign that something is wrong with me & so when I went out the last couple of times & have been around people, the question everyone wants an answer to is "What have you done?" & the more complicated "How did you do that?"

Because I haven't exactly done anything, this then means I have to in part kinda mention my M.E/CFS though some people were satisfied with the simple "I've just damaged a muscle in my knee" & left the conversation at that. But having something visibly showing I had injured myself was kinda strange (especially as some well probably most know there's something wrong with me) but also in one way kinda helped me talk to some select people about my illness, though even then not everyone was very understanding but anyway that's bound to happen & I'm getting used to the odd uncaring ridiculous comments.

So after all that & realising that once my knee is healed, I'll still be using my crutches, though not as often (hopefully) I'd begun to see this visualisation in a way (my knee injury is connected to my M.E/CFS) of my illness & I'd survived it & for the most I was ok with it, plus I felt I was kinda helping with the awareness side that is needed for this illness - "yes it's due to my M.E that my muscles have weakened, that what happens & now I can damage them by simply walking down the stairs" (or words to that affect)

So I mustered the courage & contributed towards the #youcanseeit hashtag on Twitter. I say mustered courage simply because the visual signs I mentioned, only really my mum sees, knows & picks up on, which is a good thing obviously as she then knows when I'm on my worse days or how I'm doing without actually asking me.  Here are my tweets:

#youcanseeit in the pale grey shades of my skin & thin looking face as I wonder how my heart is still beating with so little energy.

#youcanseeit when even on a warm day I wear my hoodie because my body can't control it's temperature properly & I'm always cold.

#youcanseeit in the squinting of my eyes in dull days as it's still too bright for me.

#youcanseeit when you watch me pick at next to no food in front of me because the nausea is so bad I'm having to force myself to eat.

I'm glad I've made the decision to contribute to this as I think it'll help not only with raising the awareness & understanding of these invisible illnesses but I think it is also helping me, as it think I'm still not quite as accepting of my illness & life now as I could be. I'm still dealing with some losses thanks to this illness & speaking about how I actually am, how it effects me & what my life is like does help, though it's something I still struggle with - I've always been a "I'm ok", "I'm fine" kinda girl, even before I became a M.E/CFS Warrior. I guess that's why writing about it a bit more openly is helping me get my head around certain aspects a bit more.

So if you are on twitter, please check out the hashtag & if you have an invisible illness, I'm not going to say you must contribute (as I wasn't sure at first) but please have a read of what others have put, it will help you see that you're not alone in what you have to deal with.  I know when I read some of them, I felt I could have written them as well as the ones I did do.

Openly showing any weakness can be such a difficult thing to do but you can also find some strength in it. This is something that having an invisible, now becoming visible (thanks mostly to my crutches) illness is teaching me.  Yes I'll admit it's easier to type what the signs are than actually speak about them or even let people see them when on my worse day.  In fact, very very few people have/do see me at my worse. (mainly because I can't leave my bed, let alone the house, in those days)  But maybe typing about them is just as good right now & using a medium like twitter, a blog or other social networks is the best way to do this, as you can reach more people in one second than you could by talking to someone. Who knows?

So I'm determine to gain strength from this new stage of my illness & try hard to embrace it & at least now, when I am on my crutches, people might be a bit more patient because of being able to see the crutches than they are when I don't have them & I'm the "girl that just walks really slow & is in the way"

I'd love to hear others peoples thoughts on this whole invisible/visible issue. One tweet I loved that used the #yiucanseeit was: (not exact words)

#youcanseeit because you can see me. I'm not invisible so neither is my illness.

I hope everyone is well & as always I appreciate everyone that takes the time to read this & all I hope for is that as this helps me make more sense of what I'm dealing with, it might you too - Invisible illness Warriors or not.

***Knee update for those interested: it's better than it was, I'm still having to use the crutches all the time to get about & am on my stronger pain killers too, (they help with the inflammation of the muscle) but I'm hoping after the weekend to go back onto paracetamol & lessen my time on the crutches. But I'll be taking it slowly & carefully so I don't do more damage & prolong the process.  Hence the decision to not go to Hydrotherpy this week.  I'm waiting for another appointment.***

Right I'm now off to bed to try & sleep. Take care everybody & I'll post again soon!


L x