I’ve been pondering about posting this for several days now. I feel it’s important to portray what my illness is, and how it effects me, but it’s just super depressing, and I don’t want to bring down the tempo of my blog. But I’ve decided to go ahead and write this up, and hope it helps at least one person understand how debilitating it can be for us.

I suffer from an illness called Myalgic Encephalopathy (M.E). It’s also known as Chronic Fatigue Syndrome (C.F.S), or Post-Viral Fatigue Syndrome (P.V.F.S). I simply refer to my illness as M.E as it’s so much simpler.

Some of the symptoms include sever and debilitating fatigue, painful muscles and joints, disordered sleep, and poor memory and concentration, just to name a few. In many cases onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow onset.

In some cases the effects of the illness can be miminal, but on the most part, lives are changed drastically: In the young, schooling and higher education can be severely disruped; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may also become housebound.

I’ve been trying to work out when I first fell ill, but it’s been such a long time it’s hard to pinpoint the date! I think it was 2005. I’d just started a new year at high school, and came home from the first day feeling a little hot and cold, a little fevery, and that’s where it began for me.

I suffered from what we presumed was the flu for the first two or so weeks after I fell ill. We had repeated doctor appointments as the weeks went by, and they couldn’t pinpoint what was actually wrong. They suggested varies theories, but none of them ever amounted to anything.

After 2 or 3 months (I think!), they suggested PVFS. We didn’t actually realize at that point that PVFS was indeed the same as M.E. We presumed (as the name suggested), that I’d simply suffer from fatigue after the viral infection, and that I’d recover. At this point I was struggling greatly to get back in to school, I really did push myself as we didn’t realize that it could be doing more harm than good.

Life went on this way for several further months. By this point my knees had swollen (a swelling that has remained there for the whole period of me being ill). It prevented me from walking in the beginning.

Between the six and twelve month period I’d been referred to the pediatric unit at my local hospital. We really did have to fight for the official diagnosis. To be diagnosed you have to have been suffering for 6 months, and you have to meet a set criteria. Luckily I did eventually get my diagnosis, but we where always hoping up to that point that they’d realize they had made a big mistake and I was actually suffering from something that could be diagnosed by taking a test and that they would be a cure.

From there I was pushed to stay in education, which I did manage to a certain extent. I got to the stage where my year 9 exams had come around, and I had very limited knowledge of the subjects due to not actually being in school all that much. I managed to get through the exams though, thanks to help from my parents driving me to school pre-exam, meeting me for lunch, feeding me, letting me sleep in the back of the car, then getting me back in for my exams and picking me up afterwards. I wouldn’t have got through it all if it wasn’t for them.

After that things continued to slowly go downhill. We tried many alternative therapies, all to no avail. After two years or so we managed to get my medication stabilized, but it took a lot of experimentation on the doctors part as there were several medicines I was allergic to at that point.

There are many possible symptoms that you could suffer from, but it’s very uncommon to suffer from them all. It’s common for symptoms to change and fluctuate during the course of the illness.

For me, in the beginning my main symptom was the pain in my knees (as mentioned above). They’ve remained swollen to the current date. I found the best way to explain the type of pain it is for me would be to describe it as a deep burning sensation right in the bones. The pain also makes my knees very sensitive to the touch. Sometimes even my clothes touching the skin can cause me great pain.

The pain that M.E sufferers suffer from is not curable through pain killers, so what ever the amount ingested, it doesn’t touch the pain, so I mostly try to suffer without them aside from the medication I’m already on.

I also suffer from the same type of pain in my lower neck, and shoulders. This is usually made worse by extensive periods of sitting up at my PC desk, or driving. Saying ‘ it hurts’ is an understatement, I’m not sure I can really convey the levels of pain. The doctors did suggest morphine at one point, but my dad refused as he didn’t want my body getting addicted too it.

More recently I’ve also started to get pain in my ankles and feet (causing my feet to swell if I walk too far) and sometimes my hands (causing my fingers to swell, usually if I’ve driven too much or gripped on to something for too long a period).

As well as the above (early on in the stage of my illness), I was also suffering from the extreme fatigue (one of the main symptoms suffered by every sufferer). I wasn’t always able to walk out side without a wheelchair, due to the said fatigue. Today, I still have my wheelchair, but attempt to not use it (which definitely makes me relapse, but I try my hardest to be as independent as possible). I still regularly use my walking stick and crutches, but again, not as much as I used to. The fatigue can get absolutely terrible. The best way I can describe it is having your internal batteries run down to nothing, sleep then not replenishing your batteries, and having to get up the next morning again with no battery life. Going to bed at night knowing that I’ll wake up the next morning even more exhausted than the night before is soul destroying. My illness there for affected my sleeping patterns, at one point being nocturnal. Luckily though I’ve fixed my sleeping habits and I sleep now at relatively normal hours.

I also suffered from cognitive problems and sensitivity to light (meaning I had to wear protective sun glasses at all times; a symptom that luckily eased as the years went by). I experienced sensitivity to the smell of certain food, (I.e the smell of meat cooking), which often made me sick.

Other smaller symptoms at that time were sensitivity to temperature, usually meaning my body dealt with extreme hot or cold periods differently to that of a normal person. At some points I also suffered from a certain amount of hair loss.

Another point I wanted to make, was that of my problems with eating. Sufferers from M.E can go down one of two paths: One, not eating because of lack of apatite due to not moving/burning calories, or two, gaining weight due to eating and not being well enough to burn those calories. Sadly I went down the path of loosing my apatite, and a very long battle with my eating was the result. I lost a lot of weight, and fought with my problems with my eating for a very long time. It was a big cycle, I’d not eat because I wasn’t hungry, then I’d feel sick due to not eating, then I didn’t want to eat as I new I’d feel sick afterwards, and the cycle continued. This meant that I lost a lot of weight (being able to fit in to children’s clothes at one point). Without my mums help and encouragement with my eating, I think I’d probably be feeding by a tube at present (which is the case of some sufferers). Loosing weight also affected other aspects of my body, meaning certain things stopped functioning, something that I’ve only recently recovered from.

In the past at different points I’ve been bed bound and unable to walk (my bed at this point was downstairs), in hospital due to my M.E, and regularly in A&E. My dad had been my carer for over 2 years, my mum my carer before that, and now my boyfriend, who looks after me when I’m ill.

I’ve been pondering about posting this for several days now. I feel it’s important to portray what my illness is, and how it effects me, but it’s just super depressing, and I don’t want to bring down the tempo of my blog. But I’ve decided to go ahead and write this up, and hope it helps at least one person understand how debilitating it can be for us.