Three years 💜

My 3 year anniversary!

So, people post wee soppy messages about its there 3 year anniversary of them and their partners relationship- I post a blog about my 3 year anniversary of me becoming de-crippled! Cute.

Since my last blog one year ago to this very fine date i suppose a lot has changed. I got 2 tattoos, I started college, I'm getting off my arse more… But still got the same attitude- my mum can not testify if this is a good thing or not it's ill-relevant! Life has been not bad for my wee self, I've made it the year of operation: get a life hen, like I said I would! Success.  

First of, came my tattoos! I've wanted them for a few years but I could never man up and well, I suppose after everything that had happened I kind of had zero pain fears left at all and a tattoo, really was never gonna be the worst thing in the world anymore so one fine day I toddled in to the wee tattoo place and just booked it for 2 weeks away- you go girlllllfriend!. I decided on getting a tattoo across my collarbone area with the song that was literally perfect my little ‘miracle’ song I suppose you could say (cheesyyyy) the song ‘I believe’ from the Honey film- aye! You’ll probably know it once you hear it, quite a catchy wee number… Well it was the song that inspired me to keep moving and push myself. It was the song that got me to take my first steps all the way up my stairs so picture this right, it was basically a cross over of:  rocky balboa meets legally blonde 😋👏🏼. Now that wee song from honey was always one of my faves! It was one of them wee songs that got me really empowered like, I just felt like swinging my bra casually above my head in celebration after a wee greet to it! Such a brilliant wee song. Stupidly, I nearly changed the quote of my tattoo… But changed it back at the last minute! The guy in the shop, Bryan was happy I did as well and so am I.. What was I even thinking? There couldn’t be a better tattoo than ‘I believe I can, I believe I will’ because, well, I do believe just that! 

See after all that freaking out…. It wasn't even sore, so raging!! I expected even a bit more after pain Yano? to know it existed but nope- was quite devastated of this outcome actually. So, I got that tattoo on the Tuesday and by the Friday I was in booking my second… For the following Tuesday- the exact week to the very day from my first! This one was a little music note and a love heart on my hand so just to me, symbolises music and love for it because they get you through- also very fitting as I want my tattoos to be meaningful cause I'm a total soppy git. 

Well this year I also started college as well doing Business Studies which was a last minute thing- like American road trip last minute that you see in a film! It wasn't something I wanted to do but I needed to get my wee self back out there. It's been a tough road, mornings are difficult but I'm doing the best I can and considering the last time I attempted college I only lasted 2 months, I'm really proud of myself! I've stuck it out well. People are never going to understand what you go through but that's life- it's even harder for people to understand when you show up like you're ready for a night out half the time!  But after everything, I'm glad I can still control how I look! You can be no well and still have a good quality push up bra and bright pink lippy on ya know! 

I've got some sort of a social life back as well this year so I'm doing alright considering last year I was all on my wee lonesome (wow, autocorrect just corrected this word… Is lonesome a real word? Hahaha) and it's good to get back out there! Someone special told me to do it and I listened.  It's not been easy at times, and don't get me wrong there is times when I'm just like ‘babes, I couldn't even put glue to an eyelash today never mind get ready !’ buuuut a wee attempt of kicking my own ass (don't try this at home folks!) and I get there. I've done things I didn't think I'd do and I'm proud of myself for that.

You know I'm the first to admit before all this drama with my crippled legs and what not… I was a right wee witch! But I'm definitely more maturer now because of those "hard times, yo ✌" that everybody goes on about. I've had my fair share of hard times… But I'm not gonna go on about it aw the time like ‘gees eh sympathy vote I broke a nail… I'm gonna die… What kinda germs can get in said nail?? Where's ma damn violins??’ cause those kinda people just deserve a simple slap to the face and a wee fall from the grace in which is their ego!. I've achieved a lot… But why go on about it? If you constantly tell everyone then you're obviously not doing these achievements for your self you're doing them for the attention of others. 

I've made 2 support groups and a website to help others and one of my groups has just reached 300 members from world wide, I've never felt prouder. When people tell you they are using the information you shared on a website you put effort and money into creating to give to their doctor?- there is no greater feeling. A lot of people see me, bit of a nutter with the silly banter and quite loud at times and don't see beyond that.. But there's a lot more to me! 

So That's enough soppyness for today… Get that soppy chat to f’ck now! What's my goals for the rest of this year and next year? Hmmmm. I suppose I want a better social life and to get on a more suited college course eventually.. Oh, and a wee sexy boyfriend wouldn't go a miss either! haha.  

See you all for bible edition part 4 next year cheekys! ✌🏼️

 

Two years later...

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