Today’s post is a bit different to others. What follows below is an example of how a common day is for me these days. This is not an “actual” day, but it is not exagerated either. I commonly deal with all these things on a daily basis. Not every day is as bad – and some are worse, but this is “common”:
7am:
It’s morning, and time to get up. In fact my alarm went off an hour ago – this is my second alarm… the alarm for when I don’t get up for the first one. I briefly consider setting another alarm for 8am…. the alarm to get up for when I don’t get up to the second alarm that is set in case I don’t get up for the first……… I decide not to – this could easily snowball!
It doesn’t feel like morning. I went to bed around 8pm, and sat in bed watching a movie. I started feeling very tired around 9pm and about 10 mins before the movie finished I lost the ability to concentrate and felt so drained that I lost the ability to speak – fortunately I would only have been talking to myself! I was fast alseep sometime before 10, but then I woke up for the bathroom around 2am. Once I got back to bed I settled back down…. but then my legs were restless, I couldnt get comfortable, everything ached and my legs wanted to go for a 10 mile run by themselves (well I certainly wasnt going to join them!).
I ended up going downstairs and sitting in the living room for a while with a bottle of water. I’ve often found that struggling to get back to sleep for too long simply removes the posibility of it happening and I need to go do something else and come back to it. One of the cats came and joined me and climbed onto my chest to settle down. Now I had loud purring in my ear. Does that count as a white noise generator? Eventually I went back up to bed and tried again to sleep. This time I managed to get back to sleep – but I think this was around 5am… and my alarm went off at 6, and then 7….. Not a great start to the day!
So here I am at 7am and as I can often get work phonecalls from 7am, I quicky threw some clothes on and logged onto work. I find starting early works best for me as I am always useless in the latter part of the afternoon. Sometimes I am useless much earlier – but starting early does give me the best chance of getting stuff done!
8am:
I’ve made my coffee now – I don’t drink a lot of coffee. I make a large thermos mug which lasts me pretty much all day – it stays hot for hours. Either caffeine has no effect on me – or I need to drink a LOT more of it as I am still not feeling awake. I am now starting to be more aware of the aches and pains I am going to have to deal with today. Each day is different – but it has the same theme. It’s going to hurt! Today I seem to be very sensitive to temperature and my legs are aching like crazy, my ankles are particularly painful – but its not a “joint” pain. Its more of a “you are covering me in ice ad I am getting frostbite” pain. It’s 20c in my room. I decide I need to wrap up warmer. 30 mins later I am wearing two sets of thermals, thick wollen pullover, three pairs of socks and thick warm slippers, the room temperature has also gone up to 22c. Now I only feel “cold” – the pain has subsided a little but its still there gnawing at me every moment of the day.
I’ve been going through my emails and making notes of what I need to action today, I’ve also been making notes on what my team needs to do this week in preparation for the weekly briefing with my staff. My brain is starting to fog up and I’m having to read most of the emails 2-3 times before I make sense of them – and have to re-write my notes a few times as they are all jumbled up.
My left shoulder hurts. This has hurt for some time and I don’t think its related to ME/CFS/FM. At least not directly. I think it may be related to the use of a walking stick in my left hand. It feels almost like my shoulder is dislocated at times – and I have almost no power in it. I keep meaning to make an appointment to have it looked at but am put off by the energy needed to get to the doctors. It’s a struggle to get to the regular appointments I need for my diabetes. It DOES however get very painful when cold – its the main reason why I need the thick pullover on today.
10am:
I call the meeting on Microsoft Teams with my staff. As I’m going through what the plan is for this week, what we need to get one, who we are waiting for and who we need to chase and who is doing what this week – I struggle to concentrate. Someone comments on how nice a day it is, I hadn’t noticed. I always leave my curtains closed and only turn my lights on when I need to be seen in a Teams meeting.
I notice I am repeating myself more than a few times and I have to ask one staff member to repeate what he said as it just didn’t go in. My mind is starting to close down. I manage to get through the meeting and its’s around 11am. As I start at 7am, I often go to lunch around 11am. One of the benefits of starting early is I can have a longer lunch when I need to. I don’t have anything to eat – but instead climb into bed – and am asleep in 10 mins.
1pm:
Refreshed….. is what I am not. I’ve slept for 2 hours but feel like I’ve not slept for one moment of that. My throat is sore again and I feel full of cold. When I finally stop sneezing and spluttering I manage to make myself a hot lemon remedy. I dont HAVE a cold, but I regularly have the symptoms of a cold. Sore throat regularly when I wake up – and sniffles just like a cold or flu. As I have the aches and pains all the time that are very similar to the aches and pains you get with flu, it actualy feels like I have flu. It isnt nowever. It’s not a cold or flu. Symptoms will only last an hour or two.
2pm:
I go to get myself a cold water from the fridge – and nearly fall flat on my face as my left leg (still feeling almost like ice) gives way under me. It was a sudden jolt of pain in my left calf muscle that made me leg spasm and fold up under me, as I notice the same thing on my right arm – just as well I wasnt holding anything when that happened! When I get back to my chair I pull a thick double thickness blanket and wrap it over me while I work. I’m sweating, but my arms, shoulders and legs and feet feel sooo cold. Its 22 degrees C.
I spend the rest of the work day doing little bits and pieces. I’m not going to start anything new at this time – my brain isnt really working. I am now definately wading through treacle. When I have to talk to anyone on teams I have to speak slowly and deliberately or my words are all slurred. In the back my my mind I casually wonder if it sounds like I’ve had a stroke or something. Maybe they think I am high or drunk and speaking slowly to try and hide it!
4pm:
I’ve had enough now and log off from work. There are a few things I want to get done this afternoon/evening but I cant face any of them at the moment. I get into bed for my second nap of the day. I tell myself I’ll just lay down for an hour – I don’t want to “sleep” properly again or I wont sleep tonight.
7pm:
I wake up! Yes, don’t sleep…. I remember thinking to myself 3 hours ago before I fell asleep! OK, I have four things I want to get done this evening. I need to pop out to ASDA to get a few things. Not much bit just a few things I need in the next couple of days. I want to have a soak in the bath to destress and relax my aching muscles, I need to put some washing in the washing machine, and I need to eat… and soon or I will be eating to late. It would also be very nice to be able to sit with my wife and daughter for a bit.
I run myself a bath – that takes around 20 mins to fill so I go downstairs and sit with the family for 20 mins. The loud talking hurts my ears, and oddly makes ALL my pains worse. I get myself something to eat while I’m down there – but dont have the energy to go back upstairs and sort out the washing or go to ASDA. Looks like those two tasks have “fallen by the wayside” for today. Not possible on the energy I have left for the day. I have my soak in the back – and my muscles feel a little more relaxed – but I feel massively more fatigued generally afterward.
9pm:
With no energy left for anything I get into bed and watch something. I manage to get half way through before my body gives up for the day. Will I sleep through tonight? Even if I do, will I feel like I have had a refreshing sleep? Unlikely on both counts!
Today I have managed to get up and log into work, host a meeting with my team for an hour, action some emails and some direct requests, spend a little time with family, have a bath and get food… That’s the total of my day. However I feel as drained as if I had run 20 miles. I have no energy left and half the jobs I planned – I was unable to do.
I keep hoping I get better at planning my day and setting realistic goals I can achieve. However it is so much harder when my body keeps moving the goalposts!
