Living Life, Within the Limits of Chronic Illness

Tag: ME Awareness

A Day in my Life 2023

Well it’s that time of year again; time for my annual day in my life post for ME Awareness Day. I’m actually writing this 3 days prior to May 12th again this year which I used to consider somewhat late for me but it seems to be becoming a habit! 2023 has been proving another challenging year, but anyway here we go:

I wake around 07:55am, 5 minutes before my alarm sounds. I feel unrefreshed, as though I haven’t slept as much as I have. I slowly sit myself up, shuffling back against the pillows and assessing the pain levels. I reach for my phone and open the Visible App, completing my morning check-in (This is an app which gives you a morning pace score based on your input of symptoms and heart rate variability, I’m actually finding it quite useful). I then slide my feet round and down so I’m sitting on the edge of the bed, I sit that way for a few seconds making sure I’m not about to get too dizzy before reaching down and gently waking my dog Dolly, unless she’s already up and at my bedroom door. I grab my slightly oversized hoodie and put it on.

At 8am I turn the alarm off, get up from the bed and slowly make my way downstairs, a little unsteadily, holding on to the rail for support. I use the bathroom, put fresh water and biscuits out for Dolly, then get myself a bowl of cereal and drink of squash before seating myself in the riser recliner chair to eat breakfast and take my medication.

I have a short rest after breakfast, before getting a pair of compression socks from the suitcase in the utility room (my downstairs, mini wardrobe) and putting them on. I rest for a little longer, usually until about 9am before getting up and going to the utility room to choose clothes from the small suitcase in there. I then go to the bathroom and slowly dress from a seated position, before cleaning my teeth. I slip some shoes on and often a jacket before letting Dolly out for her first wee, if she’s not already demanded to go out – she doesn’t like going out in the garden on her own, before I make my way back to the living room. I sit on the floor with Dolly on my lap to wipe her eyes with wet cotton wool and brush her.

By now it’s usually 10:15am, I spend most of the morning trying to do little bits of medical or life admin from the recliner chair, getting up and moving a little once an hour, watching a bit of TV or doing a bit of knitting; all depending how my concentration is.

Around 12:30pm my Dad comes in from work and we get all get lunch. I take some more medication just after lunch. The afternoon is often spent across at my flat, supervising work to get it ready for me to move in, waiting for deliveries or slowly unpacking some of the boxes I already have across there. All punctuated with regular rests on my recliner over there.

Come 3:30pm and I’m usually starting to flag, the left side of my back is usually starting to ache as well, I tend to take on more of a supervisory role if we’re at my flat, I’m usually quieter, observing what is going on and listening to conversation rather than joining in quite as much. We tend to be back at my parents by 4:30.

At 5pm I get Dolly her dinner and sit listening as my Dad cooks our dinner, which I then eat while sat in the recliner chair in the living room. The evening is usually spent curled up on the recliner, resting, watching TV or reading if it’s quiet. I scoop Dolly up onto my lap and clean her teeth with a special finger pad. I take the final lot of medication for the day an hour before getting ready for bed.

Around 9:30pm I am usually ready to start getting ready for bed; I move a little slower and am unsteadier on my feet than I have been during the day, but I get to the bathroom and get myself ready for bed before my Dad helps me up the stairs. I close my curtains before putting some socks on Dolly while Dad holds her (she has a tendency to scratch and these prevent her from hurting herself while I sleep). Dad removes my compression socks before leaving me to settle myself into bed.

I write in my journal, switch my alarm clock to “sunset” mode and sit and read until the light is too dim to do so. At that point I take my glasses off and put them in the case before snuggling down to find the least painful position in order to try and fall asleep, this can be particularly difficult as my ureteric stent becomes painful in certain positions (like laying on one side or my front), but irritates my bladder to the point of insanity in other positions (like laying on the opposite side).

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 currently do each week day at least, unless the day is a bad one. This year’s average day has been a difficult one to write because I’m still not in my usual situation; I am in the process of moving out of my parents into an accessible flat, in fact I should be moving in fully on May 12th just as soon as my new adjustable bed arrives! (I’ve not been able to move in fully before that as I still need help sitting myself up in bed some days, so can’t risk getting stuck in a standard bed when living on my own). I am also preparing for major surgery at the beginning of June (providing it goes ahead). So as you may have noticed, physiotherapy has become a bit absent from my average day simply because I’ve had to prioritise packing & organising things for my move, which as my physiotherapist says – still counts!

Looking back at last year’s post is actually quite strange, in some way it seems like a lifetime ago but in others it seems like just yesterday. It has been a difficult year of adjusting to a new normal, lots of hospital appointments, lots of medical admin and coming to terms with not only needing major surgery but the higher risks that come with having underlying conditions. Learning that for an average person they expect a 48 hour hospital stay and 3 month recovery time, but that I will probably require a week long stay, (probably overnight in recovery for close observation) and 6 month recovery time is quite a lot to take in.

It’s heartening to see how much things have improved since last year; at the time it seemed as though there was a very long road to getting back to my baseline, although it did take me quite a long time (and I’m still not back to where I was pre-surgery) I have come a long way from how I was a year ago and am managing a lot more than I could. I’m not sure where I’ll be next year, I’m certain things will be different as I will be living on my own, with regular visits for help. And I can only hope that I bounce back as quickly from the upcoming major surgery as I did for the more minor one I had last year, and that I defy the medics expectations in terms of how badly it will affect my underlying conditions. But I am preparing for it to be a tough time, and long recovery.

Some things haven’t changed since last time I wrote a Day in my Life post 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.”

This is particularly true when things are proving especially tough, like after my discharge from hospital last year, and most likely after this year’s surgery when it happens.

As always let me know your thoughts and comments either on Twitter @SmilingClare, Facebook Smiling Clare: A Life Within An Illness or add a comment to this post and I’ll reply when I’m able!

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Christmas & M.E

Well it’s that time of year again. The time where everyone wants to see each other, spend time catching up and having a good time.

It’s a time I always look forward to and dread in equal measures. And I’m sure I’m not the only person who feels that way.

As I write this I am propped up on the sofa with my feet up, under a duvet with boxes of Christmas cards scattered next to me waiting to be written.

You see, with ME or any other chronic illness there’s pressure to join in all the festivities. And I mean all:

  • Sending Christmas cards
  • Putting the decorations up
  • Christmas Shopping
  • Present wrapping
  • Carol services
  • Family parties
  • Visits from friends
  • Visits from family
  • Family get togethers; on all the festive days – Christmas Day, Boxing Day etc.

And there’s probably more I’ve forgotten to mention.

I know friends and family don’t mean to put pressure on to send cards or attend these things, they mean well and just all want to see you and catch up. But even if it’s unspoken pressure, it’s still there.

And it’s not just Christmas either, this continues to New Years Eve.

People forget what happens in the lead up to Christmas. Because they can cope with the extra work that comes with it, they don’t give it a second thought.

But for someone with ME, or other chronic illness, joining in with the preparations takes energy in itself. Just writing cards can be incredibly difficult due to fatigue and painful joints. (In fact this year I’m cheating and only writing who the card is from inside it due to pain making it difficult to hold a pen!)

By the time the actual event comes round energy levels are often lower than usual. Meaning joining in social events at home, let alone leaving the house can be quite a task.

Symptoms are often already flaring; fatigue will be higher than usual having used so much energy prepping for the big day. Then there’s the pain, the dizziness and whole host of other symptoms which arise.

And any further activity, however seemingly small, can cause them to flare further. The more they flare the longer the effects will last. So if I push myself to join in a get together one day, the flare up of symptoms will most likely last a couple of days or a week. If I push through that flare up of symptoms and join in another thing in the days that follow, that flare will not only last longer but the symptoms will be more severe too.

Sometimes pushing through is worth it for the memories it makes; life with chronic illness means there is almost always a price to pay for doing things. And if you’re enjoying yourself you tend to forget the time, so do things for longer than you probably should, meaning the “price”, in the form of increased symptoms etc., is higher than it would be if you’d paced yourself more. But as I say sometimes it’s worth it for the enjoyment you get and the memories you make.

This year is different in many ways due to the pandemic, however with the 5 days of the “Christmas Bubble” whereby you can create a bubble with two other households including your own, I suspect there will still be some of that pressure there. I know that although we don’t have any plans fully formed in my family yet, there will be a meal with our “support bubble” at least which will be enough to wear me out. Especially given how iffy my health is being right now; it’s not a full blown relapse or anything like that, but symptoms are already flaring, old ones returning and moving round the house is becoming increasingly difficult.

I know for many this restriction on the number of households that can mix in a “Christmas Bubble” will be a relief, because some of the pressure that comes with the festivities each year will be reduced as a result. And there is no need to feel guilty about that. It is perfectly okay to feel that way, and it’s perfectly acceptable to set boundaries too, especially if you don’t feel comfortable mixing with anyone outside your household during this time. You do you, and do whatever you feel comfortable with in that regard  (providing its within the law!).

I hope wherever you are and whatever you do for Christmas this year, you enjoy yourself, your family are understanding and you can pace yourself as well as the festivities allow.

Happy Christmas and stay safe x

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