Millions of people all over the world suffer with this condition, people don’t accept it, people don’t know about it. But it is real, it affects us and you could help make a change.
This month is ME Awareness Month and I would like to take this opportunity to tell you a little bit about my story and why it is important that the word is spread.
ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) is described as something that “causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest.” and might I add is “very annoying“. It’s easier for me to say CFS, so if you don’t mind, that’s what I’ll refer to it as.
Before I go on to tell you my story I’d like to mention that every story is different, some suffer mild, moderate or extreme cases. It can happen in different ways and different people have different experiences with the illnes.
But as for me, it all started when I was in Year 9 in school. I became quite ill and had extreme pains in my side, (we still don’t know the cause, it wasn’t appendicitis or a kidney infection…) which was the main reason for my mother taking me to A&E. My tonsils were swollen and I looked paler than a ghost. I was sent away time after time and told to “hush up it was tonsillitis and I’d be better in no time“. Well, when I wasn’t ‘better in no time’ my mother decided to turn investigator and do some digging and I am very lucky she did.
By this time I’d spent hours sitting in a waiting room with a weak immune system getting tired of it all, feeling like I was going to throw up or faint or do both, one minute I was sweaty, the next minute I was shivering. It was not fun.
Mum found out about a virus called Glandular Fever otherwise known as ‘Mono’, and mentioned it to the low-high ranking doctors that were confused with my condition. Once she did they decided to run a test and after being “kept in for observation” every few nights, they finally said, “Ahh, well. We’ve got the results from your blood test back and it seems that you are currently in the ending stages of Glandular Fever and your body is just recovering from it.”
Suffice to say, after telling me I was fine, they finally admitted something was up and I was relieved I, along with my dear mother were not going crazy.
|Times that by 100|
It was after this that I thought I was a lot better, I went to school for a couple of weeks and everything was fine… then someone in my class got a cold.
Yup, a cold, it took someone with the sniffles to knock me for six.
Back up the hospital we went and were eventually referred to an amazing paediatrician who helped me a lot.
Around this time I was really quite depressed, I was separated from friends, nobody understood and therefore believed in what I had been through and I was teased. This is all quite stressful for a 13 year old who had been poked and prodded and thought it was all over then along comes this paediatrician wanting to poke and prod them all over again.
With this in mind, I had a bitter and uncalled for grudge towards the paediatrician yet I will always be thankful to him as “the man who made me smile when it was all downhill”.
This man was the one who diagnosed me with CFS and was the first person to listen to what me and my mother had to say.
My experience with doctors concerning CFS (emphasis on ‘my experience’) is that they are either very old fashioned and refuse to believe in such a thing, or they understand completely but can’t help me because there is no cure or medication for this condition.
So, the fact that this strange man who made me laugh not only listened but figured out a way to get some medication in me to make me feel better was a total breakthrough.
I was put on medication, tablets called amitriptyline. Which is actually an anti-depressant but can be used to regulate sleep. I was given a little advice concerning my diet and strict rules on bedtimes and when I was to wake up.
I slowly made progress but I hadn’t been in school for half a term (semester) and this had major impacts, relationships with friends disappeared, the determination was there but the physical ability to do any work was hard to come by. If I tried to hard I ended up right back where I started. It was tough.
This meant that when I was in school I was in for a maximum of two hours a day, my lessons were chosen carefully determined on the career I thought I wanted to embark on at the time and when I was in school, apart from looking extremely tired and having bags under my eyes that reached my knees, I almost appeared normal.
What the students that mocked me didn’t know however, was that when I got home I would crash… literally, onto the sofa, I watched way too much twilight and got through book series’ like they were a magazine filled with images. This is not what I let my peers see, so of course, naturally I was a “faker” “lazy” “stupid” amongst other words I’ll spare you from reading.
Overall this was all a bit rubbish. Time moved on, I stood up to people when they asked what I was doing there and “shouldn’t you be in bed or something?” soon I gained respect, I was on the mend.
Yet whenever things were looking up I’d crash, be set right back to the beginning or close. But as time moved on and I fought and learned to respect my body’s needs and the times in which I did crash were less frequent.
I took a trip to New York having been invited by family over there who’s assessment, diagnosis and deduction was that I needed to get away. It worked, I was still showing signs, still on medication.
I spent my 14th birthday having been sent home from school ill -yes ill, on my birthday… I was far from impressed- with my cousin (sometimes he felt like my only friend) who no matter how I feel always manages to put a smile on my face. A few years on and exams came around.
I found it in me to get my act together and I took steady steps to be in school for the whole day and even managed to stay after school to complete various pieces of coursework and projects.
I’d missed a good proportion of one of the most underestimated yet one of the most important years of your school life. Teachers said I should be held back a year but I was not having that. Me? Stay behind a whole year of school? No! With support from amazing people who made it their business to send me work and help me get back on my feet I was soon on my way to facing GCSE’s.
I particularly enjoyed English and my English teacher was awesome she’d always stayed positive around me and was sure to praise me well, yet tell me what to do better next time, another favourite subject of mine was Technology – specifically Design and technology, resistant materials, product design. A subject that tested my creative abilities and allowed me to sketch something then make it come to life… although, I tend to be better at the sketching part because some of my end products have been questionable to say the least. My teacher for this subject is really quite brilliant, his father suffered from CFS and while other teachers have in the past, and recently called me lazy, he has always stuck up for me. Which I am grateful for.
I passed my GCSE’s with decent grades, achieving B’s in the subjects I enjoyed especially which is were I put my effort in. I even achieved an A in my coursework for Design and Technology which – might I add is 60% of the grade.
Moving forward to now, I am at sixth form, which for those of you that don’t know is kind of like college, the subjects you take are a lot more school based – I don’t like change and this meant I could stay at the same school and continue to have the support I have grown to appreciate over the years I have attended.
At the beginning of the academic year, I had a little reminder from my body, after a brilliant summer I was starting 4 A-Levels, Design Tech, history, English and media. All of which taken at GCSE I had achieved B’s in.
I was relatively confident, I knew I liked the subjects yet I’d bitten off more than I could chew.
About a month in, I fell ill. After such progress, and I mean crazy amounts of progress, in the recent year I was incredibly annoyed by this set-back.
My mother came up with the idea of a part-time time-table after deducing that it was necessary. We phoned up my new head of year (the man in charge who calls the shots for anything to do with me and my fellow year 12’s), this head of year just so happened to be the guy I mentioned earlier, the one who’s father suffered from CFS too? Again -brilliant.
Listening to him and my mother talk on the phone I watched along with my father biting my nails and playing it cool. The changes to the time-table meant that I’d be in school a lot less – this time, however we included lunch times as well, “it is important for Jess to socialise” – which worried me for obvious reasons.
Since that conversation I have deviated from the plan a little, every now and then I’d spend too much time at school and suffer at the weekends, I have just sat my exams for English and Media, which were the subjects I chose to continue with for now. (I am at the sixth form for 3 years instead of the 2 that everyone else is spending there) I am nervous but excited for the results and looking forward to my time in the future in education and work.
CFS has become a part of me, whether I like it or not, I have to respect it, this is a lesson that took a while to learn but when you’re full you don’t go on eating right? It’s a little like that, I am taking tiny little steps to becoming ‘normal’ in my everyday life. I keep myself busy and when my body tells me it needs it’s rest I oblige in return for good performance while I work away.
If it has taught me anything it has taught me that with the people I have surrounded myself with, I know, deep down, that it will all be okay in the end.
A favourite quote a senior member of staff wrote on my report back after a year of barely being in school and just about achieving homework deadlines, was “Jessica is a brilliant example of how tenacity can overcome adversity” which is pretty much what I have learnt in a nutshell. Persistence, dedication and on occasion, plain stubbornness will get me where I need to go.
So why does ME/CFS need to be talked about?
Here’s a list of why CFS needs YOUR attention!
- Some people are ignorant to the illness, some people refuse to accept the illness and these people need to be educated. They need to understand to the full extent to how disabling CFS/ME is. People help when they understand.
- The sufferers of the illness often feel alone, depressed and they often doubt themselves because others don’t understand. If you reach out to others and say ‘hey it’s okay, you’ll be fine’ they will know that they are not alone, that they aren’t fighting a battle that’s not worth it, but a battle that is noble and although challenging totally rewarding in the end.
- Spreading the word and talking about this will force others to talk about it too, bring up discussions, force people to acknowledge it.
- Help people understand when their friends are going through such a thing so that the sufferers don’t feel so alone.
- It may even help someone with all the symptoms who isn’t quite sure what is going on realise that CFS/ME might be what they are suffering with.
You don’t have to go around the streets shouting about CFS/ME. You aren’t expected to yell at everyone until they understand, here’s how you can help!:
- Talk about it amongst peers.
- Share your story! Got a friend with CFS? Had it your self? Currently in the process of getting better? Spill the beans, help people to know what’s the dealio.
- Don’t want to spill the beans? Fine! Spill MY beans, share this story around to whoever you can. Help people to understand what it’s like!
- take a look at this http://www.meassociation.org.uk/ and make your own deductions on whether you want to share.
- and this http://www.actionforme.org.uk/
- and also this http://www.ayme.org.uk/
This is a real thing that needs to be addressed, so many people go un-understood. Feeling really rubbish about themselves, help people all over the world and prevent it from happening again!
If you ever need any advice or questions, whether it’s about someone you know, something you heard or if you’re going through it and you’d like some support let me know visit www.facebook.com/synerjes and send me a message, I’ll reply as soon as I can!!! I am always happy to educate and/or help out!
I implore you to do what you can!
Remember, work hard, have fun, make a difference!