Well I never thought I’d be writing my annual day in my life post with the country in lockdown, and the majority of the population getting to experience what it’s like to be mostly housebound. Although they still have an advantage over what my experience of being housebound is; energy to do things to keep them occupied. I have to admit I’ve found it a bit tough in recent weeks seeing what everyone else is managing to do at home during lockdown, when my life has barely changed and I still only really have the energy for the basic things. But hey ho, you know you’re chronically ill when the country goes into lockdown and you barely have to change a thing about your life!
Anyway, back to what this post is supposed to be. For the last 7 years I have posted about an average day in my life on M.E. Awareness Day (May 12th) or there abouts. And this year is no different, so here we go:
I wake at 7:45am to the sound of the landline phone ringing, 15 minutes before my alarm is due to go off. I feel unrefreshed as if I’ve slept less than I have but I inch my way up to a sitting position because experience tells me if I fall asleep again until my alarm goes off I’ll only feel worse. So I slowly sit myself up, assessing the pain levels and where the most pain is as I do so and get out of bed, making sure not to do so too quickly so that I don’t make myself dizzy. I sit on the edge of the bed getting clothes out ready for later in the morning.
At 8am I make my way down the stairs, fairly steadily, holding on the rail for support. I use the bathroom and then get myself a bowl of cereal and cup of fruit squash before settling myself down on the sofa to eat breakfast and take my morning medication.
I have a bit of a rest before getting up and going to the bathroom around an hour after getting up, where I clean my teeth and wash, before heading upstairs to my bedroom again. Once there I have a short sit down before I begin doing my physiotherapy on the bed; 11 different gentle stretches, with reps of between 2 and 5 depending on the exercise. I then have another short rest before I get myself dressed; I tend to do my physio in my pyjamas because once dressed I have compression socks on (as recommended by my cardiologist) and I find they dig in if I do my physio in them.
I gather up any dirty washing and take it downstairs with me where I put it in the machine along with any other laundry that’s in the wash basket before setting the washing machine going. I often have a little sit down and rest before tackling the washing up of the breakfast things, usually sitting on my perching stool while doing so. I leave the things I’ve washed up to drain on the drainer as I can’t manage both washing up and wiping up!
Now it’s time for cuppa! I make myself and often my sister a cuppa using my one cup hot water dispenser before sitting down on the sofa with my feet up, having a bit of a rest. I might watch something on the TV or do some knitting depending on how I’m feeling.
Usually around 11am I get up again and take the washing out of the machine, either putting it on the airer straight from the machine, or folding it into a basket and putting it on the washing line outside; if I do the latter it can take me two or three trips depending on how heavy the clothes are, and I always put the basket on the garden table or chair so I don’t have to bend down to it as that often results in dizzy spells. I’ll often have a little break and sit down while putting the washing on the line as it involves lifting my arms up higher than it does for an airer and after a few goes my arms start to hurt so I have to rest.
11:30am and I sit down for yet another rest, and some more medication. Again I might put the TV on and half-watch something which is simple to follow during this time, or do some crafts that don’t involve too much in the way of concentration as the housework I’ve just done has taken quite a chunk of my energy. I stay this way until lunchtime, usually when my Dad comes in from work.
Dad often makes my lunch for me so I can continue resting on the sofa as the pain is starting to increase by this point. I take some more medication with my lunch, and then spend most of the afternoon on the sofa either resting or chatting to him when he’s around. If the weather is nice, and my legs allow, I might wander out into the garden and sit out there instead. Usually chatting to my Dad, sister or neighbours (from a safe distance, each of us sat in the middle of our gardens) whoever is about and happy to chat about anything and everything; stuff that doesn’t matter if you forget!
By 3;30pm I’m often starting to flag. I become quieter and not quite as involved in any conversation. Just listening to what’s going on rather than joining in. Around 4:30pm you will often find me sloping off upstairs to get changed into my pyjamas and do my second, and final, lot of phsyio for the day. I am then back on the sofa ready to watch the daily government briefing about the pandemic at 5pm, and stay there long after it has finished and the TV is off.
I take more medication and listen as my Dad (and/or sister) cook dinner before eating that on the sofa. By now the pain is usually at it’s worse, as painkillers begin to wear off again and the effects of having done some housework in the morning begin to set in. The evening is usually spent curled up on the sofa resting or reading a book until the phone rings with our evening phone call from my Mum. I often end up taking my final lot of medication for the day during this call.
Come 9:30pm I am usually ready to start getting ready for bed, moving a little slower than I have throughout the day but still fairly steady on my feet despite the pain. I go to the bathroom and get myself ready for bed before Dad follows me up the stairs; thanks to the physiotherapy this task isn’t as hard as it used to be, and I get up there without too much unsteadiness!
I settle myself into bed, write in my journal, take off my glasses, switch off the lamp and try to find the least painful position in order to try and fall asleep.
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. Lock down has made pacing myself that little bit more difficult as I have to do more of the housework with my Mum staying over at a relatives to look after them.
I don’t know what the impact of this will be on my health in the long term, I am trying my best to create a schedule which allows me to pace myself better than I was when this all began in March, and my Dad does what he can to give me time to rest, particularly at weekends. But obviously this is harder on my body than things would usually be if there wasn’t a pandemic; even if I could go out I wouldn’t be able to due to the amount of energy I’m using keeping the house tidy and laundry up to date. I also know that this current level of activity on an average day isn’t sustainable long-term, I’m just struggling to come up with a way round it. I hope that I will find the right balance and things will get even just a tiny bit easier soon.
Looking back on last year’s post it’s heartening to see things have improved a little again; thanks to the new diagnoses and resulting treatments I don’t get quite as dizzy, quite as often; I still have to be very careful not to change positions too quickly and if I don’t have compression clothing on the dizziness can be quite bad but it is still an improvement. And the physiotherapy is helping with muscle strength and means my ability to manage the stairs is so much better than it was; yes I still have bad days where it is as difficult as it was last year but they are fewer than they were. It still takes it out of me too, but it isn’t as difficult as it was. So it’s all fairly 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.”
Sally Hewitt
Hi! So interesting to hear about your day. I would love to hear about the physio you do? I do some stretchy things but not sure they’re as helpful as they could be!
Your day has the structure I wish I could attain. My many years with ME have largely been a push and crash cycle. I either can’t sleep or when I do it’s almost totally reversed. I have a partner who is very supportive but I push too much because I’m trying to be that full on person I once was, the one he doesn’t know about. He always tells me to stop but invariably it’s the inevitable crash that stops me quite literally in my tracks and the constant pay back is so cruel. I wish I could learn how to pace. Last week I tried ‘again’ feeling very optimistic 😊 but it resulted in 6 bed days. I’m 58 and know I must do better for the future. I don’t see anyone other than my partner and feel so isolated and pointless. I feel immense guilt that my partner does various things to help me as well as working full time. So for 30 years I’ve been searching for that ever illusive base line from which to begin?
Thank you for telling us about your days. I do hope you stay at your present functionality and improve gently! Take care! Best wishes Sally
Clare
Hi Sally, my physio is mostly done laying down; so I currently do 5 reps of pelvic tilting followed by 3 reps of bridges, and then 5 reps knee rocking (side to side). I also do 3 reps of something called the clam exercise. In sitting I do 3 reps each of knee and ankle extensions, followed by 5 reps of armchair marching. The focus is on improving my buttock and core muscles which are currently my weakest areas. I obviously have rests between doing them, and I started off only doing 1 or 2 reps, having slowly built it up from there; always make sure to do less than you think you’re able to first and then build as otherwise it’ll do more harm than good! I think all of these can be found on google just by googling the terms. (I would try and describe them but it’s surprisingly difficult to do so!)
Pacing is incredibly difficult; knowing when to stop and actually doing it are two very different things too – it is VERY easy to do too much on a good day because you feel so much better. Believe me although my day has structure, I still find it difficult to pace and sometimes get it very wrong! The biggest thing I’ve found helpful in terms of sleep is literally just having a regular bedtime and wake up time, I have been lucky in the sense that my parents have always insisted I get up by a certain time and don’t stay up too late, even if I’m not sleeping I rest in bed throughout the night. It’s certainly not easy though and there are days I still require an hour or so nap, but it has stopped my sleep cycle from reversing.
When it comes to finding a baseline it’s a very personal thing, dependent on your circumstances. But for me I found it was best to start from the basics I had to do each day; get breakfast, get washed & dressed, get lunch, get changed for bed, climb stairs to bed, then I added in some of the things I do to keep me amused between rests; watch tv for 1 hour, paper craft for 1 hour etc. It helped me to write it down a bit like a schedule, but with no pressure if I didn’t do any of the “extra” things that didn’t have to be done. Again it was best to start off with less than I thought I could manage, and less than I usually did then add things in until I found the maximum level I could manage day after day without any issues.
I really hope that makes sense! I’m quite foggy today so apologies if some of it is complete nonsense; do let me know and I’ll try and write something that does make sense.
Thank you so much for your good wishes, I hope you can find that elusive baseline!
Take care! Best wishes, Clare