ME, Myself and I: Routines

One of the first things that seemed to get lost when I was first ill, and gets thrown out of the window fairly often when it comes to set backs, is a daily routine. When I was first ill I was at school so there’s an obvious routine and, like any time someone’s ill, days at home and no energy meant things like getting dressed every day or getting up at set times sort of disappeared.

I think when you’re first ill then it’s obviously not the top of your priorities to keep up a routine but when you’re well enough I think it helps quite a bit with having a more ‘normal’ day if there’s a bit of routine. Of course this does tend to disappear whenever I’m ill or don’t have the energy to do these things and it’s very hard to get back into one when you’ve broken the routine for a few days, or weeks sometimes. I think that’s why I often include some of these things that people would consider everyday things in my goals.

I’m not saying this works for everyone, I’m not a doctor and only going by my experiences over the past twelve years, and I’m kind of writing this to remind myself and try and kick myself back into a proper routine.

I do have an alarm, I’ve found that in the past when I don’t I can sleep until 3pm even if I fall asleep at 10pm the previous night so I definitely need this to have any real time awake and, as long as it’s not too early, I normally find that it’s not having a negative impact on my health. If it does start to I move it back an hour or two for a week and let my body recover before moving it back earlier. I also find that suddenly moving it earlier doesn’t work for me either. I think it was an ME specialist years ago who said move it 15 minutes every two weeks so your body has time to adjust and it’s not a huge time difference. This has helped me a lot after recovering from illnesses though I will say I tend to go for half an hour rather than 15 minutes as that took so long to get back to the routine I was in before I caught the cold or whatever and meant I was only just getting back to the original time when I caught something new or had something that messed up my sleep patterns.

Getting dressed every day helps a lot. I’m not saying getting dressed up but just pulling on some leggings or jeans and a comfy t-shirt rather than sitting in pyjamas all day has helped me quite often to feel like I have a routine and sort of reminds my body that it’s awake and not in bed time mode. I tend to find it makes me slightly more alert and wakes me up quicker (I say quicker, it’s still over half an hour before I can get out of bed in the mornings most days but wakes my brain up after that).

Having a morning coffee, though mine’s decaff so it doesn’t really do much with the waking up, as part of my routine also helps. I guess it’s more the idea of a morning routine, things you do as soon as you get up, that tells your body and brain that it’s time to wake up and do things. I do tend to have the same breakfast most mornings but I’m not saying do that, just get something easy to prepare so you’re not using energy up before you start the day.

The rest of the day is where I find it harder to have a routine. Alongside the not having the energy for a job it means that anything we do takes energy so every day is different as we have to timetable things in that most people wouldn’t necessarily consider a job that needed much thinking about like tidying a slightly messy room or putting away washed clothes. These things, I find, tend to disrupt a day more than I expect so from not long after breakfast until tea time there’s very little routine at all. I’m planning on improving this, maybe do a weekly routine rather than a daily one, but at the moment I am still recovering from a bug that everyone in the family has had so I’m just focussing on getting the other bits back on track first.

I have recently found that having an exercise routine is helping quite a bit. I don’t recommend jumping straight in and running or going for long walks, I know that would know me back quite a bit, but it’s things like stretches and exercises that can be done sitting down, or standing, that work your muscles and help increase what they can do without being too energy intensive. If you were to compare what I do to what anyone does at a gym, or as exercises in their own home, for a healthy person they probably wouldn’t be much at all and may seem not worth doing but I do find they help. I’m also planning on trying to get back into going for walks three times a week. I did it in the summer but then the past month or so I seem to have been catching bug after bug so it’s a case of knowing when you can manage these things without them affecting your health.

An eating routine has helped me with my energy levels a lot. I guess schedule may be a better word than routine here, I don’t do certain things within a meal, but having smaller meals more often keeps my energy levels more even rather than having the lows when my blood sugar level drops. I was told recently by an ME specialist that a lot of people with ME have post prandial hypoglycaemia which means my blood sugar drops three or four hours after eating so the regular small meals has also helped with this. In general trying to avoid sugar and having meals ready in the fridge or freezer means that it’s easier to stick to a similar time each day. I’ve found that food often takes longer than I expect to just to prepare so having something ready to heat up or something that has a more rigid timescale for cooking helps a lot with this.

One of the main things that has been repeated to me over the years is the need for an evening routine. I know they say not to watch things on TV or anything with a screen within X amount of hours of going to be (it seems to depend on what time they recommend but I think an hour or two tends to be common) but I find that having an old TV show that I know on helps me to sleep. I don’t actually watch it, I tend to have a DVD in my computer and turn the screen off completely, but having something that I know on when I sleep helps. Things like a hot drink (without caffeine), reading, doing a certain activity before bed or listening to things and doing the same thing every night starts to tell your brain that when you do this now is the time to shut down and sleep. At the same time if you don’t manage to fall asleep straight away then getting up, doing something quiet or calming for twenty minutes outside of bed and then getting back in is meant to help.

I will admit that I’m not the best at keeping a routine quite often. I tend to end up agreeing to do things with my parents so I get out of the house in the day and then any routine with eating times gets a bit messed because of being out at the time which then throws everything else off. I don’t know how much help this post will be for anyone, a lot of it is probably common sense, but it’s helping me to remember this just by writing it down so maybe it’ll help remind us or give some tips about trying to stick to a routine, I don’t know. I guess time will tell as to whether I manage to stick to my routines, or how it changes as my energy improves or changes with medication. That is another thing that’s had a big effect on my routine recently; changes in medication and their side effects has thrown a lot of what I used to do as routine out as my focus has been more on working through these or seeing how things affect me this way.

I hope this all made sense, my brain fog isn’t the best but I have been through and edited it so I think I caught everything. I hope you’re all as well as possible and any advice or tips you have for routine would be appreciated, especially the middle of the day. Please feel free to comment below if you have any ideas or comments or if you just want to chat, or email me if you want 🙂

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