Smiling Clare

Living Life Within the Limits of Chronic Illness

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A Day in My Life… May 12th 2018

It’s that time of the year again: ME Awareness Day. I haven’t managed half of the awareness raising things I usually do; I’ve been having to take it easy following a lot of appointments & there’s more coming up.

As has become tradition I’m writing about a day in my life with ME, describing how I am and what I can do on an average day.

So here goes….

“I wake around 8:15am and lie there slowly moving my joints, stretching, assessing the pain levels. I slowly attempt to push myself up into a sitting position; this often takes a few attempts as my arms collapse under me as I try and push myself up. Once in a sitting position I move my legs round so I’m sitting on the edge of my bed and there I stay for a few minutes while my body adjusts to being upright. If I attempt to stand too quickly I get very dizzy & feel faint. I make my way to the stairs, usually leaning on the door frames and walls on the way, before beginning the slow trek down the stairs, often on my bottom; bum shuffling as it feels safer than trying to walk down them.

Once downstairs I use the bathroom before sitting on the sofa, propped up on pillows with my feet up, resting for at least 15 minutes before attempting to get my breakfast. I get breakfast while sitting on a perching stool, having assistance with lifting and opening bottles of squash and milk etc. Before returning to the sofa, with my breakfast, usually carried by one of my parents, where I eat it before taking my pills.

I rest for a while after breakfast before climbing the stairs very slowly to get some clothes; I sit on the edge of my bed getting my clothes out of my wardrobe and chest of drawers (the perks of having a tiny bedroom!) before slowly making my way down the stairs again.

I have another short rest before I head to the bathroom to get dressed, I sit on the top of the closed toilet seat to do this and either use a helping hand or have one of my parents help me with dressing my bottom half. Whatever happens socks get left until I’m back on the sofa!

I have another short rest, then it’s usually half past ten, if not eleven o’clock – boy does time fly by when you have to do things slowly, punctuated by resting! – so I make a start on doing something, usually replying to a message from a friend, knitting or catching up on a TV show I’ve missed. Whatever it is, my concentration vanishes after 20 minutes and I can’t knit for long because it hurts both my arms and hands.

Another rest follows, before lunch. This is often made for me by one of my parents now, and brought to me to eat on the sofa. It takes me a while to eat and I require yet another rest afterwards as even just eating & digesting food takes energy.

The afternoons are often spent outside on my garden sofa in the dry warmer weather, laying there with my sunglasses on (and earplugs in if it is noisy), on colder or wetter days it’s the sofa inside that has the pleasure of me laying on it! I might read if it’s quiet, watch a little TV or just lay there quietly chatting to my family.

I have another rest mid-afternoon, before I get one of my parents to help me into my pyjamas. Then I curl up in a comfy chair (feet up) and watch my Dad cook dinner, often chatting to him as he does so.

I return to the sofa where dinner is served to me on a lap tray – since spilling my dinner all over both myself and the sofa a few weeks ago I am no longer allowed to hold a full plate!

After dinner I often just lay on the sofa listening to the conversation going on around me. Depending on how fatigued I am, I might well be wearing my sunglasses and possibly even have an ear plug in order to cope with that.

Come 10pm I head to the bathroom to get ready for bed, my legs often trembling underneath me as I do so. I have to sit down to do my teeth before making my way back to the living room where I take my final lot of painkillers of the day. My Dad helps me get up the stairs, ready to support me if my legs do decide to completely give way underneath me. It’s an incredibly slow trek as by this time my legs are shaking constantly under my weight.

I get into bed, write in my journal, turn down the light & wait for sleep to claim me; by some miracle that is usually by 11pm! “

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 think I can handle with no negative effects on my health. Anything more and I pay the next day. (a recent deterioration means I’m not 100% sure this is accurate right now – it might be slightly less activity to have no negative effects).

Looking back on last year’s post it’s disappointing to see things have deteriorated again and things are that bit more difficult again. I did know things had become worse of late but I hadn’t realised just how drastically things had changed in the past year. Life goes on though & I remain positive.

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.”

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A Day in My Life…May 12th 2017

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’m writing it with a pounding headache so you’ll have to forgive any mistakes!
I wake at around 8:30am, lying assessing the pain levels for the day. I slowly peel back the duvet and move my legs to the floor so I’m sitting on the edge of the bed, there I stay for a few minutes making sure I don’t get dizzy, before putting my slippers on and gathering a few bits ready to make my way down the stairs, slowly but steadily holding onto the rail.
I get my breakfast, and take my morning painkillers. Then make 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 and on a little table as I’m unable to sit at my desk for long. After about two hours (sometimes less) I stop, having had some rest breaks in between. 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 knitting, or something else not as intense as study, occasionally though it will be another short study session.
Come 4pm I’m starting to feel fatigued and have another rest, before getting up to help cook dinner, either by sitting reading the recipe off or sitting on my perching stool by the hob actually helping with the cooking.
By 7pm it’s time to curl up on the sofa in my pyjamas. I might 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 on last year’s post it’s great to be able to see I’ve made progress, 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.”
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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!

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A Day In My Life…May 12th 2015

As I’ve done for M.E. Awareness Day the past two years, today I’m going to share what it’s like to be me for the day.

Up until a few weeks ago this would have been a much more positive, less symptomatic account but unfortunately after receiving the news that my Nan had passed away my health took a nosedive so this account isn’t what I was expecting to be writing:

I wake feeling unrefreshed, after about 9 hours sleep. My body feels heavy and almost everywhere hurts. I slowly sit up and wait a few moments before attempting to get out of bed; too fast and I feel faint. I gather together the things I expect I’ll need downstairs for the day: clothes, my phone, a book, a blanket and often a cuddly toy friend into a bag and make my way downstairs leaning heavily on the hand rail for support.

I get my own breakfast, standing leaning on the worktop for support, then I get washed and dressed with the aid of a helping hand or parent to dress my lower half. After that I get on with a few hours study, currently this is done from the sofa when possible. I take regular breaks within this period as my concentration doesn’t last for that entire time.

I get lunch in the same way as I got breakfast, before taking an hour or so rest, normally watching the Australian soaps on TV. I often spend the rest of the afternoon doing something which takes little energy but is productive; this could be putting photos in a scrapbook, planting seeds, blogging or knitting, it all depends on how I feel.

Evenings are my worst time, my parents will cook me dinner which is eaten on the sofa, I’ll get into my pyjamas often requiring the help of one of my parents to change my bottom half. I’ll lay on the sofa reading a book, listening to music or play a game of cards with one of my parents.

Come ten o’clock it’s time to head back up the stairs to bed. This is often a struggle, my legs are incredibly heavy and painful so lifting my feet onto each step is incredibly difficult. For this reason one of my parents has to help me up the stairs. I get into bed, write in my journal before trying to get comfortable and letting sleep 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.

As always it’s taking some time to get used to needing so much help again. It’s been a while since I’ve needed help getting showered and dressed and I am forever grateful to my parents for helping me out at times like this. I’m hoping things will pick up in the coming weeks and months, but for now I just need to cope with how things are and balance my activity levels in order to get myself improving again.

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 PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!

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