M.E. Just one of many invisible illnesses. Unless a sufferer tells you themselves, you wont have any clue that they suffer from the condition. In fact, so many people have never even heard of it despite it becoming progressively more common, but what is it?
Well, M.E stands for Myalgic Encephalomyelitis, or more recently, Myalgic Encephalopathy, a term that the M.E Association deems to be more suitable. It's also called C.F.S or Chronic Fatigue Syndrome, PVFS or Post Viral Fatigue Syndrome or even CFIDS which stands for Chronic Fatigue Immune Dysfunction Syndrome. M.E and C.F.S are the most commonly used terms for the condition. A lot of sufferers are against the term C.F.S because the condition is so much more than just fatigue.
So who gets it? Anyone. A lot of the time, onset is linked to a viral infection, glandular fever is a common association, the doctors think this is what triggered the condition for myself. Other triggers may include accidents or operations; and the onset is sometimes slower for others. Some sufferers may not even be aware that they have the condition, and diagnosis can take a long time as it's by process of elimination.
The effects vary, person to person, some people can continue their lives normally and have relapses where they may spend a period of time with flu-like symptoms. Other people may have permanant disruption to their lives of varying levels. A lot of suffers are unable to find work because of their unpredictable condition and so many are just not well enough. It can destroy your education, your social life, your family life and trap you in your own body, your home and in some of the worst cases, your bed. Some people get better. Some people do not. Not a large number ever make a full recovery.
There is no cure.
Typical symptoms are post-exertional malaise (ie; feeling exhausted without reason, you have not done anything to warrant the exertion your body feels), pain/myalgia (present in about 75% of sufferers) and twitching/spasms of the muscles which can include the eyes. It also affects the brain and central nervous systems, causing cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness and word finding difficulties. Problems with the control of the autonomic nervous system can cause palpitations, sweating episodes and symptoms usually associated with low blood pressure/potsural hypotension (eg; fainting/collapsing/dizzy spells/black outs). Symptoms that suggest on-going problems with immune system function can include; sore or swollen throats/glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings. But it doesn't stop there, no. There is also sleep deprivation, alcohol intolerance, symptoms that resemble irritable bowel syndrome, emotional lability, mood swings, depression and so many more. The severity of these symptoms tend to fluctuate. It varies day by day, person to person.
Many conditions have similar symptoms. Hormonal disorders (eg, hyperthyroidism), lupus, MS (Multiple Sclerosis), lyme disease, hepatitis and gastrointestinal diseases are just a few of these. This is why diagnosis is by process of elimination, after many tests, studying a detailed clinical history of both the patient and his/her family and the period of time the patient has been suffering. Usually the symptoms must have been present for a minimum of 6 months before a doctor will make the diagnosis.
I've been suffering from M.E since I was about 14 years old and I am now 20. At first, I just felt really tired and run down. It was near the start of a school year for me, I thought it was the come down from the summer holidays, going back to school, then participation in a school musical, all just adding up and running me down. The symptoms persisted, after endless tests, being diagnosed with many different conditions and nothing hitting the button, I was referred to a specialist at the hospital, they did a few tests and came up with the diagnosis. I was so taken aback, as were my parents. I'd had issues in school and my dad thought I was laying it on thick to avoid school, truth be told, I was starting to enjoy it, though I really don't blame him for thinking it, with my past problems, I can see that. It was really hard to accept for us all. I was the one who never got sick, how could I have a disease? A CHRONIC disease at that? It took a long time to sink in for my parents. In fact even now, I'm not so sure it has, such a drastic change in me and it's a massive thing to take on board, but they don't tread on eggshells around me, they always did their best even though none of us had a clue what to do, but I won't deny, it really did affect us.
The people and the places you surround yourself with, really do affect you. I didn't see much of my parents, they had work and I was off school, trapped in my bed. I know my mum was heartbroken she couldn't just stay and look after me, but I've always been strong willed and stubborn, I managed. It could have been so much worse. After I started to recover a bit, I was more just housebound as opposed to bed bound, and when I finally felt I could leave the house - by this time I had no colour at all, I was white as a sheet and the idea led the little colour I had left to drain from me, and I began to panic. The area I lived in was hardly the nicest, or tolerant for that matter, and all the people I used to see would ask where I've been. As you can read, it's not the most simple or straight forward thing to explain, I didn't want to do it. I also had trouble speaking, I'd developed a stutter because I very rarely spoke so when it did come to me talking, it was extremely difficult. Sometimes this caused my dad frustration, he couldn't understand what I was trying to say and it still never really sunk in that this is all part of who I am now. Don't get me wrong, my parents love me without a doubt and they did, and still do their best, just it really drove a wedge between us all.
Roll on a few years. I moved from Birmingham to Stafford. About 11 months ago I moved here properly. About 14 months ago I braced myself and caught a train up here.
The difference is huge. The area is so nice. If you talk to a stranger where I lived before, you'd at least get verbal abuse hurled at you, perhaps flipped off, at best. Here? People are a lot more friendly. This made me all the more confident about leaving the house, just one thing. My parents and I guess my brother as well, hah, they aren't here. I miss them. I talk to them almost every day. I actually talk to them more now I've moved out. I guess I can't really manage to be independant. I still rely on them heavily. When I visit, my mum has always bought me a little bag of goodies, my dad is always waiting at the station for me and whenever they visit, my mum always ends up bringing food, dad does the jobs I can't do and they both do their best to make sure I have everything I need. I miss them, I honestly do, but I also honestly think it's better this way.
A common thing with us sufferers, not all of us, but a lot that I know, we all feel like we owe something, like we're a massive burden, we just cause trouble, maybe it'd be better off of we weren't here. There would be no way I'd have moved out if it wasn't for my partner, if my parents hadn't given me all their love and support. I used to feel so humiliated when I had a "bad day" and my partner would have to carry me to the bathroom or wash me, feed me, I felt like I was just causing trouble and wasting his time. I feel like I'm a massive disappointment. I had a lot of potential. I worked hard. I know my parents don't feel that way, these things happen, but I can't help feeling I've let them down. I should be in university right now, but there's no way that can happen. I attempted one night a week at college, I couldn't even do that.
Having the right support and being in the right place makes a difference. I would never have recovered to this level if my parents hadn't tried their best to understand and care for me, they could just have easily shunned me, despite their quite understandable frustration sometimes, they never once turned their back on me. Never. This made so much of a difference. I wish I could have them here and live in this town I loved from the moment I stepped off of that train. Unfortunately, we can't have it all. I'm so lucky to have such a supporting and loving family. I miss my old life, my old friends, many of them just never made an effort, didn't care. Cutting those people out was one of the best things I ever did for myself, it makes so much of a difference.
You have to be selfish, you have to try your best to care and look after yourself. Instead of telling yourself all these bad things, treat yourself right. A lot of people are out for themselves, if your loved ones really didn't want to look after you, they wouldn't. Don't be ashamed to reach out and ask for help. I wish I'd done it sooner. I was so scared, what if my loved ones rejected me? Well they'll find out sooner or later so why suffer in the mean time, just get the support you need from the start or get rejected and find out who really matters, it saves time and it could even save your life. That's how much of a difference it can make.
If you suffer, please, speak up. If you know someone suffering, please, reach out.
Written by Elizabeth Fleming of BeneBelle.
