ME: An Explanation of Sorts

Most of you will already know I've been chronically ill with something called M.E. for almost 11 years now. But you may not be aware of just what that means. So I'm going to try and explain it.

Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome (C.F.S.) is a chronic illness of unknown origin. It affects every aspect of life and the severity varies significantly from person to person and sometimes from week to week in a single person. There are a multitude of different symptoms associated with M.E. and not every person with the condition gets every symptom, I'm going to list those I have personal experience of.

• Post Exertional Malaise (P.E.M) - exhaustion and pain which hits anywhere between 24 and 72 hours after an activity. This can often leave you wondering why you feel so awful if you've forgotten you did something 3 days ago!
• Muscle and joint pain.
• Unrelenting fatigue, not relieved by rest or sleep.
• No temperature control: my body can go from freezing to boiling in a matter of seconds and vice versa no matter what the actual room temperature is.
• Orthostatic intolerance; dizziness/fainting when changing positions from lying to sitting, sitting to standing or from sitting upright or standing still for too long.
• Tingling/numbness in limbs and extremities; like pins and needles that won't go away.
• Sound sensitivity; a 'normal’ conversation or rustling of a crisp packet can be too loud!
• Light sensitivity; meaning screen time has to be restricted and sunglasses worn indoors.
• Chronic headache.
• Chronic sore throat.
• Food intolerances; milk proteins and alcohol.
• Difficulty concentrating/brain fog.
• Inability to find the right word, or string a sentence together; fortunately my family have become fluent in 'M.E. speak’!
• Sleep problems; sometimes insomnia or difficulty sleeping, other times a constant sleepiness where staying awake for a few hours a day is an immense challenge.
• Freezing cold extremities; no matter what I do my hands and feet are often frozen, even in multiple socks!
• Diminished dexterity; I can't always grip things so holding a glass or a pen can be a huge difficulty. Lifting heavy items such as a kettle is a no go too as I'm liable to drop it!
• Short-term memory problems; I can't always remember what I did a few hours ago, what I went into a room for, where I put my phone just a moment ago etc.
• Loss of appetite; sometimes I struggle to eat enough to keep my body going, I know I need to eat but I'm simply not hungry. Other times it's harder to describe: I feel really hungry but after eating just a small amount I feel full. I can't eat a big meal without getting very dizzy/feeling faint afterwards and I struggle to eat after 7pm. The general rule is to eat little and often but I often forget unless reminded!
• Excessive sweating; possibly the most visible symptom I get with this illness. It doesn't matter if I'm not or cold you can bet I'll be sweating. This can be rather embarrassing when it leads to wet patches under my arms etc. but there's nothing I can do about it.
• Heat intolerance; particularly noticeable in summer if I spend too long out in the heat I come out in red blotches. On the rare occasion I can cope with a hot shower (it usually has to be warm as otherwise I end up feeling faint) my feet and knees, which are under the water the most due to sitting down, turn bright red.
• Burning sensation or itching in my feet. Another odd one, my feet can be freezing cold but feel like they're burning to me
• Muscle spasms, random muscles twitching can be rather painful and at times result in injury when it leads to the limb colliding with the wall or other object!
• Muscle weakness; my legs in particular won't always support my weight and shake when I stand or walk. It is also noticeable in my hands and arms when I find myself unable to open bottles and packets.
• Sensitivity to movement in the room, another odd one but if someone or something is moving too fast (this can mean at 'normal’ pace) it makes me feel nauseous and really ill.
• Trembling sensation on the inside, this one is difficult to explain but when I'm tired it can feel like I'm trembling but when I put my arm out it's perfectly steady hence the description of feeling like I'm trembling in the inside.
• Poor balance; this needs little explanation as I regularly trip over thin air and test gravity!
• Feeling of being touched when there's nothing there; this can be really creepy when it feels like there's a spider crawling across your back and there's nothing there!
• Sensitivity to clothes/anything touching my skin, certain materials can feel like razor blades to me; especially labels!
• Joints are tender to touch.
• Nausea.
• Muscle and joint stiffness; sometimes it's not the pain that makes it difficult to walk it's the stiff muscles and joints which don't want to move.
• Blurred vision, often when I'm tired my eyes can't seem to keep up with anything that moves fast; things blur but after a few seconds clear.
• Eye aches; too much reading or screen time causes the muscles behind my eyes to ache. And by too much sometimes that isn't a lot.

I don't suffer all of these symptoms every day, and some days they're worse than others. But a good portion of them are always present. Every day I have to force myself to do basic tasks; it's surprising how much energy and how many muscles even the simplest tasks take, something you don't realise until you have a very limited energy supply and painful muscles!

I force myself to get up and downstairs everyday; mainly because the bathroom is down there! I also force myself to get dressed almost every day; there is the odd day I end up staying in my pyjamas but it has to be a REALLY bad day. Sometimes getting dressed is all I manage to do.

Living like this day in, day out, seeing small improvements only to have them wiped out by relapses, is draining. It takes every ounce of strength to keep positive and hang onto hope. The work of ME charities like Invest in ME provides that thread of hope that the cause of this illness will be found and in turn if not a cure then a viable treatment. But to do this they need funding. That's why on May 12th, International ME Awareness Day, I shall be forcing myself to dress up as a Princess for the day to raise money for Invest in ME. Prettying myself up for this will take extra energy, the dress itself may actually cause additional pain from just wearing it, my studies may well take a hit not just on the day but in the following days as the Post Exertional Malaise kicks in (oh and I'm having a friend round in the afternoon!) Nevertheless if it helps fund the much needed research and keeps that thread of hope alive, not just for me but thousands of others like me, then it will be worth it. Please donate and share this if you can. It really does mean a lot!