Living with M.E

Living with M.E can be very difficult at times.  Of course there's living with M.E (Myalgic Encephalomyelitis), and on the other hand there's living with ME Caoimhe hickey, and let me tell you both of them are not that easy to live with. People may look at me and think that there's nothing wrong with me, but unfortunately  looks can be quite deceiving and Make-Up can be powerful. The past four years have been none the less quite eventful, you name the Hospital and I've probably been there.  

May 2012 is when my journey began after being admitted to Crumlin hospital, just two weeks before my Junior Cert was due to begin.I was admitted with the intention of being tested for "pheochromocytoma" a rare tumour on my piturity gland,the master gland of the body based at the bottom of the brain as I was showing all the signs and symptoms but thankfully my scans showed up clear,now with the worst ruled out we still didn't have the answer the ultimate question, what was wrong with Me? Of course ,I had people say  "you're a teenager you're just hormonal get on with it" and "We're all tired but we can't sleep all day" naturally, I began to feel like it was all in my head? Was I just feeling sorry for myself? I had been to all sorts of hospitals, I had done all sorts of tests with various results coming back abnormal but yet no one could pin point the cause of why I was constantanly getting fevers, sore throats, dizziness,swelling and pain in my joints and of course why I spent the majority of my life sleeping.  There were days I wouldn't leave my room I'd cry all day long out of sheer frustration. I was spending each day in excruciating pain. My appetite decreased and my weight increased purely from not leaving  the house which also didn't help the whole situation as my weight is something I would have always been extremely conscious of growing up. It  just seemed like a terrible nightmare that was never going to end. After a further number of tests and 8 days in Crumlin I was diagnosed with Chronic Fatigue syndrome which is  the alternative name for M.E. 

So after reading down through this article you might now be wondering what is all this M.E  malarkey about? So here's a little insight to what my life has been like since diagnosis. To begin I'll elaborate on the meaning of M.E  Myalgic= Muscle Pain Encephalomyelitis= inflammation of the Brain&Spinal cord. Its sounds a lot more complicated than it is and it's a bit of a tounge twister so we'll stick to the initials. Don't think I am alone with this debilitating disease as there are also over 12,000 people in Ireland; equally Both Males and Females, young and old  who are also suffering in silence. This is why I've decided to speak up and create some awareness, as it's not the most common illness in the world.

The unfortunate thing about being diagnosed with M.E is that there is no specific treatment for the illness it's all about management both activity and energy management so basically your life becomes controlled by this illness as you have to sit down and plan a full 24hours ahead before you leave the house. As I was 16 the February after I left Crumlin I was no longer considered a child so I  was referred to several specialists around the country who were mainly disinterested in my symptoms the only answer I got from most specialist was"Sorry there's nothing I can do for you, but that will be €180, you can pay my receptionist on the way out" despite the fact that M.E is recognised as a neurological illness by the world health organisation they just didn't seem to bat an eye lid at it, as far as they were concerned I was only wasting their time which is the downside to suffering with M.E in Ireland as no one wants to know about it. 

This exact day two years ago, the 7th of April 2014 i finally attended Dr.Speith an M.E specialist from London who officially once again diagnosed me with M.E and put both mine and my family's mind at rest as we had finally gotten an answer after 2 years. Even though I had officially  been diagnosed it didn't mean I would be miraculously cured, this was only the beginning of the road to recovery., but that's when reality set in for me I struggled big time with acceptance of the illness along with surviving school, I had just seen the massive contrast from Junior to Senior cycle in school. Throughout the 3 years of Junior  Cycle I absolutely  loved school. At the age of 14 what's better than having the lols with your friends each day. Doing subjects that you've chosen yourself you're not forced to do something that you have no interest in, ( science being the only exception) so relistically  you actually enjoy learning for the first time ever, oh and of course not forgetting for many of us it's the first time that you're in a class mixed with boys.  If you lovely ladies went to an all girls school like me you'll understand that you think all of your Christmas's have come at once (how wrong were we). 

When it came to the academic side of things ,I took school quite serious and never once failed an exam in the 6 years I attended secondary school.  Transition year I decided to take a break from the books and to look after my health , this was the toughest decision for me as all my childhood friends had gone on into 5th year.  I missed out on quite a lot during Transition year as its such an activity based year. I still tagged along to most of the trips and didn't leave them go completely to waste, as I became TY's official photographer.  5th and 6th year just seem to be a complete blur for me. I was probably at home more than I was in school, as I was doing 2-3 day weeks and as a result I had to drop levels in certain subjects in order to actually complete the Leaving Cert and avoid yet another relapse. 

 June 2015 hit and I completed my Leaving cert. I decided to take a trip to my Local G.P and I basically demanded to come off all medication. 9 tablets to take each day doesn't sound very appealing does it ? And it was definitely not something I wanted to become dependant on. I was willing to do anything other than have to depend on medication. After much research I arranged an appointment for Accupuncture and I have never looked back. For all you ladies/Gents who might just want to take time out for yourself to  relax and unwind Accupuncture is the way to go. It definitley was my saving grace and I'm finally medication free and getting by just fine without it.

4 years on I am still learning how to manage this condition,although I have had some tough moments through the years. I count my blessings that I am now at the stage that I am able get up out of bed and get on with my life. I'm not going to say that I've made a miraculous recovery since I've finshed school because I haven't. Of course not having the extra pressure of having to come home after 6 and a half hours of school to study for my Leaving Cert has lifted a massive weight off my shoulders. Yes , I still have days where I don't feel physically able to remove myself from the couch or do simple thing that you'd take for granted like washing your own hair can be a struggle for me some days as my joints can swell and become weak. Yes, that's when I whip out the Hun bun ,all jokes aside yes I do still get extremely bad headaches,dizziness and throats on a daily basis but I've learned to get up and get on with it and accept that this is probably something that I'll have for the rest of my life but I've opened up and I've talked about the illness which is the first step you need to make in order to be on the road to recovery.  If you are reading this article and you seem to have the same symptoms that I've brought to your attention  ( keep in mind I've only taken the ones I suffer with mainly, there are a whole heap of other symptoms that go hand in hand with this condition) then don't wait any longer go seek medical advice straight away.  

The one thing that made the adaptation so easy for me throughout this major change in my lifestyle was having the most supportive friends, family, and boyfriend who never left me lie under the condition sometimes they may have forced me to get up have shower and get dressed but its times like that, that have brought me to where I am today. They also never once left my side on my dark days and I can assure you I wasn't the easiest to put up with throughout the tough times as I'm a terrible bad patient and at the end of the day I'm still your average teenage girl so I'm hormonal even on a good day. 

I'm going to leave it there for now, I hope I haven't bored you all too much, but mainly I hope that I have made you aware that there are several people fighting invisible illnesses on a daily basis. I have loads more information to share with all you lovely readers so keep your eyes peeled for my next blog post. Thanks For Reading.

Until next time.

Much love,

Caoimhe X