Living Life, Within the Limits of Chronic Illness

Category: A Day In My Life

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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It’s time I ‘fessed up…

I’ve been blogging for almost two years, yet up until now I’ve only shared my posts with a friendly set of strangers – my followers on twitter – who are for the most part fellow Spoonies. My immediate family have had no idea I blog, nor have family friends or most of my Facebook friends. I’ve been too scared to tell them. Afraid of what might be said, the fact my posts are far removed from the everyday life of most people. What I count as achievements, might be considered trivial tasks. I didn’t want to face having a conversation about my blog posts unless it was in 140 characters or less on Twitter.

But since it’s reaching that time of year again – M.E. Awareness Day May 12th – and I’m still unable to do anything remotely incredible to raise awareness of this debilitating illness thanks to being its grips, I thought it’s about time I confessed all to my family, friends and whoever else reads this blog of mine. For the first time I plan on sharing this blog not only on Twitter and Google+ but on Facebook too. I will also tell my family who aren’t on social networks where to find it. A courageous step for someone who’s hid this for so long. But in the name of raising awareness of M.E. I’m giving up this secret.

Last year in aid of M.E. awareness I did a post titled ‘A Day in my life…’ and I thought this year in this post I’d do the same. Things have changed a lot since then, improved. Looking back I can’t believe how far I’ve come. This is just an average day. Not a bad day, or a best day. So here goes…

I wake unrefreshed, often after an 11hr sleep. My body feels heavy and stiff, like I have the flu. I lie in bed carefully moving my joints, assessing the pain and movement levels I have that morning. I slowly sit up before resting my feet on the floor and standing. I get my clothes out for the day and grab my magnetic bracelet, worn to help ease the pain. I walk to the stairs unaided, carrying my clothes, occasionally grabbing the wall or furniture for support before walking down the stairs holding onto the hand rail.

I get my breakfast, standing but often holding onto the worktop for support. After breakfast, I get washed and dressed – by myself. I have to sit down to dress my bottom half as my balance is atrocious. I clean my teeth sitting down, using my toothbrush with foam curlers on the handle so its easier for me to grip.

By now it’s mid-morning or later. I sit and have a cup of tea resting, before taking my study books out and studying for an hour or two with occasional rests so it’s more like half hour – an hour of actual studying!

Come midday I get up off the sofa (my favourite haunt) to get myself some lunch. Again I do this standing, often leaning on the worktop for some support. I sit with my feet up on the sofa having lunch, listening to the radio before watching an hour’s TV.

Mid-afternoon I often do another hour or two’s study, again with rests reducing the actual amount of studying I do.

Evening’s are my worst time of day. My parents will cook me dinner while I rest on the sofa, sometimes with music playing other times with the TV on. I’ll eat dinner and quite often if I’m able to I’ll help wash up, this time it will involve my perching stool whether I’m washing or drying up as I haven’t the strength to stand there for any length of time.

I’ll watch TV for a few hours or lie on the sofa chatting with my parents, before having a hot drink and getting ready for bed. I put my PJ’s on unaided, again sitting down to do my bottom half, and clean my teeth whilst also sitting down. I then get a cup of water (it has to have a handle as a glass just falls through my fingers) and have one of my parents follow me up the stairs carrying it. I write in my journal, snuggle under the duvet and wait for sleep to claim me; this can take anything from a few minutes to a few hours but it does eventually come.

As I said before 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.

Somethings haven’t changed since last year 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.”

To mark International ME Awareness Day 2014 I have created a new page on this blog dedicated to explaining M.E. You can find the new page ‘What is M.E?’ on the navigation bar at the top of any page on my blog. If my explanation isn’t enough and you want to know more, please see the Useful Links for ME page and follow the links to the charities where you will find explanations of ME, its symptoms, causes, treatments and how people live with it.

For now I shall leave you to get on with your, no doubt busy, life. Please feel free to share this blog to help raise awareness of M.E. – this is part of the #May12thBlogBomb on Twitter for ME Awareness – and of course leave a comment below or contact me via the link at the top of this blog if you want to!

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A Day In My Life…

I thought since it’s still ME Awareness Month at least I would do a blog post about a day in my life. Nothing special about the day described, it will just be an average day.

A day where there are no appointments to attend, no family or friends visiting or to be visited so no need to put on an act to protect them from seeing how bad the ME actually is, just a standard day in my life at the moment.

I wake up feeling unrefreshed, like I haven’t slept, no matter how long I have been asleep for. My body feels heavy, stiff and painful as I slowly stretch and assess the pain level I’ve got to cope with. I struggle to move to get out of bed, I want to get up but it’s not that easy. I have to slowly sit up or else get dizzy. Gradually move my legs round to the edge of the bed and place my feet on the floor. I gingerly stand up, wondering if my legs will support my weight, grabbing onto the bed, bedside cabinet or other piece of furniture for support if they don’t. Once standing, which can take a couple of attempts, I slowly make my way towards the dreaded stairs, using walls and door frames to hold onto for support if I’m unsteady (often the case!).

At the top of the stairs a decision has to be made – to ‘walk’ down them using the hand rail and wall for support or to ‘bottom shuffle’. This depends on how unsteady my legs are, the weaker they feel the more likely I am to ‘bottom shuffle’ down the stairs still holding onto the hand rail!

I reach the bottom by whatever means (normally avoid falling which is always a positive!) and have a short rest. The tackle the task of getting breakfast. This involves as few trips from fridge to worktop, microwave to worktop etc. as possible. I also tend to use a perching stool whilst getting breakfast which is normally instant hot oat cereal made with rice drink instead of milk, as it’s a fairly healthy quick breakfast and doesn’t take much energy to chew. I take some painkillers, and a supplement with that.

I have a cup of green tea after breakfast whilst resting. Then embark on a trip upstairs to get some clothes (why I don’t bring them down when I get up I don’t know!!) This takes a while and involves a rest when I reach my room and another one when I get back downstairs. Then I have help getting changed – I can’t bend my legs enough to get socks, trousers etc. on myself so have to have my Mum help.

By this time it is normally 11am, I either rest or do a little study – I can only study for around 20-30 minutes at a time. Even then I’ll end up distracted after 10 minutes so will have a few minutes break!! Whichever I do I tend to be semi-lying on the sofa. I might also take a slow ‘walk’ on my crutches down the garden to our pond where I’ll check on the fish, feed them etc.

Lunchtime! I’ll move from my position on the sofa to the kitchen to get some lunch, just a sandwich. I’ll have another cup of tea but I don’t make these as I can’t lift the kettle. If I do make a hot drink it’s using a hot water dispenser but that’s only normally used when there’s no one home as carrying a hot drink through the house can be rather difficult!

In the afternoon I’ll watch a bit of tv (normally just after lunch), do a little more study and most days I have an hour’s nap. I take more painkillers just to keep the edge of my pain.

Evenings are my worst time of day, all my energy has been used during the day and I’m running on empty. Dinner will be made for me, and come 6pm most nights I am ready to be in my pjs and bed. However because the bathroom is downstairs I don’t tend to do this unless feeling really very unwell. Instead I get in my pjs (with help from my Mum) and collapse on the sofa with a spare duvet and pillow. The pain and fatigue at this point in the day is really bad.

At around 10:30/11pm I make my way upstairs to bed with one of my parents following up behind me keeping me steady if necessary. Once in bed I often find it difficult to find a comfy position to lay in, so spend a while unable to sleep trying to find the least painful position before falling asleep.

This is a ‘normal’ day for me at the moment. Some days are worse so I do less and others are better so I do slightly more – whether that be going out to a doctor’s appointment or having a friend or family member over. But 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.

I’m hoping this blog post makes sense, I haven’t really reviewed it properly so apologies for any mistakes!!

OH and just as an extra bit about my life right now: I got my last assignment back…and scored 95%!! More details on that and how the studying is going are on my other blog: http://lifewithmedoingadegree.blogspot.co.uk/

Bye for now, as always let me know your thoughts and comments either on twitter @SmilingClare or add a comment to this post and I’ll reply when I’m able!

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