Living Life, Within the Limits of Chronic Illness

Category: A Day In My Life Page 2 of 3

A Day in My Life 2019

Well it’s ME Awareness Day 2019 and as is tradition I’m writing about what it’s like to spend a day in my life with moderate ME.

I wake up at 8 am to the sound of my alarm, stretch out and shut the thing up so it doesn’t get any louder! I feel unrefreshed, as if I haven’t slept as much as I have. I stretch out assessing which joints and muscles hurt most today in order to decide just how I should move so I don’t exacerbate the pain. I sit myself up in bed and put my glasses on, then slowly swivel myself round so I’m sitting on the edge of the bed.

From there I reach out and grab my dressing gown, slipping it on whilst sat on the edge of the bed. Letting my body adjust to having my feet down and sitting up. I go downstairs and get myself a bowl of cereal and a drink before curling myself up in my armchair in the living room, eating breakfast before taking my morning pills.

I rest for a bit after breakfast before going upstairs to get some clothes ready to get dressed. I sit on my bed getting the clothes out of the drawers, only standing to get things out of the wardrobe when necessary. Then I make my way slowly back downstairs, before going to the bathroom to wash and dress. This is mostly done sitting down atop the closed lid of the toilet.

I then sit down and rest for a little while, the simple act of dressing having exhausted me. I’ll usually catch up on a couple of easy to follow TV shows while my Dad is out at work, this is followed by a bit of a rest before I do something crafty – card making, knitting or crochet usually- for a little while.

I have another rest before getting myself a sandwich or something similar for lunch which is eaten in the living room whilst seated in my armchair.

Afternoon’s are one of those things which these days are difficult to pin down an average of. I suppose more often than not they’re spent chatting with my parents and resting, not achieving a great deal. Mainly because the less average ones are spent venturing out in my wheelchair to shops while it is quieter than normal, and as a result I’m not able to do a lot on the other afternoons. And of course there are the days I have medical appointments which I always try and book in the afternoons because it is my ‘better’ part of the day.

Whatever happens in the afternoon by five o’clock I am at the very least beginning to flag. The exhaustion and pain levels are increasing and in recent times the light headedness that comes with feeling faint puts in more of an appearance than it has throughout the day.

I’ll get changed into my pyjamas, often with help from one of my parents, before curling up in the kitchen armchair and reading the recipe instructions for dinner to my Dad as he cooks – that’s about as useful as I get when it comes to cooking at the moment, and even then I often miss things out by mistake!

Dinner is eaten in the living room, tablets taken and then I settle down in my armchair listening to what’s going on around me, occasionally joining in, and sometimes knitting or crocheting a little bit more if my hands and concentration allow.

I take my last med of the night at 8:30pm, and by 10pm I am more than ready to get ready for bed. I shuffle off to the bathroom before dragging myself up the stairs with one of my parents following and/or supporting me as by this time it is a struggle to lift my foot high enough to get up each step.

I settle down in bed, write in my journal then turn out the light before finding the most comfortable position possible 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 think 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 heartening to see things have improved a little since then, although the dizziness is the worst it’s been for a while, and I’m still not in the best of health, there have been small improvements over the past 12 months and that is something to be positive about.

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.”

Share this:

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.”

Share this:

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.”
Share this:

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!

Share this:

Page 2 of 3

Powered by WordPress & Theme by Anders Norén