Wednesday, 18 May 2016

Princess Day 2016

Just a short post to show off some photos from International M.E. Awareness Day on May 12th, the day I spent dressed as a Princess to raise money for Invest in M.E. Research. I had a fantastic day but it was rather more exhausting than I expected it to be! So here's the photos:
Blue nail varnish!


First photo of the day, wearing my invisible crown.


A Royal selfish the old fashioned way of using a proper camera and a mirror!


A photo taken by my Dad.

A realistic depiction of how I spend most days!

Another realistic depiction of how I spend most days!

Having a good rest!

A MASSIVE THANK YOU goes out to everyone who has supported me in raising money for Invest in M.E. Research again this year. The current total of offline and online donations stands at £220 but there's still time to show your support my JustGiving page remains open at: https://www.justgiving.com/princessclarew

Thursday, 12 May 2016

A Day in My Life....May 12th 2016

As is now tradition on International ME Awareness Day in this post I shall share what it's  like to live a day in my life:

I wake up (can you call it waking up when it doesn’t feel like you’ve slept?) at around 9am. I lie still assessing the pain levels in my limbs and torso. Worrying the tingling sensation in my legs won't subside when I venture out of bed. I slowly move to a sitting position, wincing in pain as my ribs make it known they're not happy. I tug the duvet off me, slowly swing my feet out of bed and drop them to the floor, sitting, waiting for my body to adjust to being upright; to minimise the risk of being overwhelmed with dizziness on standing. I gather the essentials and begin the trek down the stairs, slowly, literally taking one step at a time holding onto the rail.

I get my breakfast, and take my morning painkillers. Slowly making my way back up the stairs again to get some clothes for the day. I have a short rest before heading to the bathroom to get washed and dressed. I then sit with a cup of tea for half hour or so.

I get my study materials out ready to commence a short study period. Spreading them out across the sofa as I'm unable to sit at my desk for long. After about an hour (sometimes less) I stop. I get my lunch and have a bit of a rest before watching an hour of TV. Another rest follows, before doing another activity; sometimes studying, other times something less intense!

Come 4pm I'm starting to feel very fatigued and have another rest, just listening to what's going on around me. Decisions of what to have for dinner can be difficult, asometimes I sit out in the kitchen watching, occasionally helping make the dinner. I eat dinner on the sofa and take some painkillers with it.

By 7pm it's time to curl up on the sofa in my pyjamas. I might play a simple board game or card game with my family, or watch a single TV show. I have a hot drink and come 10pm I get ready for bed, take some painkillers and begin the journey up the wooden hill (stairs) to bed. I write in my journal, then find the most comfortable position and wait for sleep to claim me. 

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I can handle with no negative effects on my health. Anything more and I pay the next day.

Looking back in last year's post it's great to be able to see I've made progress even though these past few months have felt incredibly tough. I'm doing most basic tasks independently of my parents now and the stairs aren't as much of an everyday struggle as they were 12 months ago. Life still isn't easy but it's  good to look back and see how far I've come.

Some things haven't changed since last time though, so I shall quote from my post back then:
"...when people visit I always put on a brave face, an act so they don't see just how bad the ME is. I don't do this for my sake, but to protect them from the truth. There are some who see the 'real' me now but it's taken a few years for me to 'drop the act' for them. And if they themselves are having troubles or stresses the 'act' of being better than I am and not letting on how bad I really am comes back to protect them. I don't want to add to their worries."

Remember I'm spending today dressed as a Princess to raise money for Invest in ME a small charity funding vital biomedical research into M.E. If you can afford to sponsor me you can donate via text by texting MEPC92 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. MEPC92 £4 to 70070) or head over to my JustGiving page:http://www.justgiving.com/PrincessClareW If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!

Friday, 6 May 2016

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!