Saturday 27 April 2013

Ins and outs of Erythromelalgia


To, everyone this may concern, nearest and dearest! 

Erythromelagia (I bet you google this!) Is a rare condition that some of you may or may not know, I'm a sufferer from. it can range in forms of severity. Some people have it minor or under control (by medication, etc) where others lives are destroyed by it and no med is helping it. Doctors don't even 95% of the time know what it is or have heard of this! So to get a diagnosis of it is a miracle, really. 
EM (for short) may not be life threatening, but it does cause devastation to the sufferers lives and friends and family too. It can, in many cases be secondary to another condition that could be serious. In a lot of cases neuropathy issues are common to have secondary. Some secondary complications can actually be life threatening as i know some who are.. 

EM is characterised by heat.. Heats everywhere! So imagine how hard this is to avoid? Shoes and socks are a bother, tights are a no-no! Boots, trainers are out of question as well so yes, we may look bonkers! Wearing dolly shoes or sandals in freezing temperatures but its our only way to ease the suffering. We would like it to be different, but it isn't, so please limit the stares we aren't doing it on purpose our lives just simply can't be lived any other way. 

When you see us with red feet or hands we get that it may look odd as an outsider but we mean no harm so questions like 'why are they red?' or 'that was silly not using sun cream' are very common... but not welcome. Our feet are red because in that moment of time our feet are suffering intense burning pain and trust me, to even see us still walking through that is amazing in itself! Soon that burning will be too much and we will have to stop our plans and go find relief somewhere.. Relief we may not even get until days later. See, people can have EM 24/7 or flares that can sometimes last minutes, hours or even days! You never know when EM will next shock you, it's not nice.

Some sufferers are limited so much we need aids like crutches or a wheelchair... We are still the same person! Do you think we like being in one? It's hard. It feels like we are giving in and up and the stares don't help. Being in that wheelchair you feel so small and away from everything, everyone's up above, looking down with a intrigued stare and it ain't easy! It can be very hard to adjust to, I personally know this.

People think, because this isn't life threatening then get on with it but don't realise that other conditions can make it a living nightmare. In my eyes, all pain is different it varies from condition to condition but it doesn't make it any less severe. Every day we wake up, burning alive! We feel we are putting the effected body parts in a fire and trust me, I really wish this was an exaggeration!. Body parts affected are most commonly the hands and feet, the two main things you need. Others are, knees, legs, elbows, ears, eyes, lips, face, down below and soles of the feet it's everywhere! Horrible, right?.

Life can vary for us day to day, things and pain levels change quickly. One day I could be feeling ok so make plans but suddenly overnight the pain could change dramatically so I may have to let you down and I'm sorry about this. Trust me, it makes me feel more bad than you could ever imagine as pain is destroying my life piece by piece. Just because I may let you down a lot unintentionally don't start avoiding me, giving up on me or stop including me, please! As one day I may just be able to manage the pain enough to go out with you. What some have to understand is to not expect too much of me, when I tell you I'm in pain etc so can't come out, don't force me or ask why? Or say please as it actually puts doubt on our friendship as you should I'm not like that! Even if I haven't explained everything in full. 

With EM, sleep pattern is badly effected. One night we can be ok then the next night be up late, into the early morning hours before we can get to bed meaning we are therefore sleeping into the day. Which means possibly cancelling plans also!. Bed time is tricky too as heat is as you know under duvets and on bed sheets, rubbing feet against them too so it isn't easy. The worst thing you can say - when our sleeping pattern is messed up, so we are sleeping into the day - is call us lazy. Once, yeah I can take it as a joke! But always? Hell no! We are getting the same sleeping time as anyone else is? May not be at the considered "normal" sleeping hours but its still the same. So please, don't judge.

Also. When I say I'm not going out at the weekend I get to most this isn't normal (how do you think I feel being forced to stay in?) but don't call me boring. I'm the exact same person I ever was, before pain struck me down! If you took the time to come visit me or offered, you'd know this.

I wouldn't wish this on anyone! and unless it gets controlled, it's unfortunately a life sentence. With EM being so rare, it just adds to the horror. Spreading awareness is all we can do and also sharing this with loved ones to explain our everyday pain routine. It's not easy to live with or explain, but we just have to fight on! and fingers crossed, we win the battle someday :). 

If you are a sufferer, please share! .x

1 comment:

  1. I am sorry for your pain. You're right when you say others don't understand. It's sometimes hard to put yourself in the others shoes (No pun intended!)

    I read this as I have a dear friend who suffers from this as well. I am sorry for both of you and hope someone finds a solution and life can get better for you.

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