Due to my M.E. I’m mostly housebound but to manage my symptoms I have to spend most of my day in bed. This can bed hard especially when it comes to the structure of my day as days can often all blend into one. However I’ve found that giving my day routine and finding lots of different activities and doing a variety of activities that I can do in bed helps to give me the structure and stability I need to support my wellbeing. - I will do another blog post when I can on different activities that I’ve found can be be done in bed.
My routine is something I’m still working on since I’ve moved into my own home as I lost the routine I had when I was living at my Dad’s because my life looks quite a bit different now and I also need more support from PAs/carers (plus with them being here especially on PA days I have less free time in my day for doing the things I want to do on my own.)
I’ve developed a rough routine which my pain psychologist suggested I do and she suggested I create a good day and a bad day routine so I can switch between the two. Some days I can start off with the good day routine and end up using the bad day routine if my health takes a turn.
See at the bottom of this post for more about routines as like can’t always be a solid routine and sometimes we have to give ourselves and our routine a bit of flexibility.
Tips for creating a routine in bed
- Have a set morning routine. For me I wake up at 9am and give myself half an hour to wake up, take my morning meds and sit up. Then at 9.30am I have my morning routine to do so I’ll have a coffee, check my messages and emails etc. Or sometimes (usually - I need to get better at doing admin in the morning but I’m not a morning person) I’ll do a low-level activity to get me started.
- Pace yourself throughout your day. This is a useful blog post I wrote about pacing, activity management and rest with some different techniques.
- Work out when is best for you to do certain activities especially high energy activities like getting washed and dressed. For some people this is in the morning for others this is in the evening. It also depends on if you can get out of bed and to the bathroom to wash and whether you have the support from carers or caregivers such as family to do these activities. Aids can also help make these activities easier such as shower chairs/stools or a bath lift. You might want to bath or shower every other day and wash at the sink in between or another great alternative I find for washing are Fresh Wipes which are some really good wash wipes that I find really helpful.
- I find with high energy and sometimes medium energy activities it can be helpful to limit how many of these activities you do in a day. - For me I have one ‘main’ activity a day (on my good days) that I do in the early afternoon when I have the most energy, what I do depends on how I’m feeling that day.
- After high energy activities and sometimes depending on what I’ve done for a medium energy activity I find it helpful to have periods of rest in my routine, usually for 30-60 minutes the latter especially after a high energy activity so my body and mind can stop and pause for a bit. I never regain energy but resting just helps my body to stop so it’s not on the go all the time.
- Rest is different for everyone, for me I like to shut down and just lay and listen to mindfulness meditations and soundscapes. Other people prefer to do a restful activity. Here’s a blog post I wrote about rest. I find it helpful to have several rest periods a day, especially on a bad day just to help especially with my chronic fatigue.
- Alternatively after a medium energy activities you could put a low-level activity into your routine.
- Different people find different activities high energy, medium energy or low-level activity and it also depends upon how you’re feeling that day and how much energy you have for activities. One day an activity may be low-level activity another day it may be medium energy activity or vice versa.
- With high energy and medium energy activities work out your activity limit. This is different for everyone and also depends on the activities and how you’re feeling that day. Usually for me with a medium energy activity I can manage 20-30 minutes and I’d usually need a rest afterwards so I build this into my routine. It’s usually a case of trial-and error to work out your activity limit. With low-level activities I still have to remember not to overdo it and burn out so in my routine I usually schedule 30-60 minutes for a low-level activity. I find it helpful to put a timer on to ensure I don’t overdo it and go over my activity limit or I take regular breaks.
- Don’t forget to put meals and snacks into your routine too!
- It’s also good to have a set time to wind down for bed. Have a snack and a hot milky drink, do an activity that doesn’t involve screens such as reading, listening to an audiobook or podcasts, activity books etc. Then go to sleep once you’re feeling tired and ready for sleep.
Making your bedroom environment different between night and day can help with sleep as it can help your body feel like it’s in two different places even though you’re still in bed. This was a tip I was recently given during a sleep session for people with chronic pain.
Also from this session I got told that if you are able to try to get some daylight into your room during the day that will also help with sleep at night - I do know how hard this can be for those with light sensitivity and it’s something I’m personally trying working on and it’s tough going.
- If possible have a set daily routine so you’re roughly doing the same thing each day (if possible) - this helps to give your mind and body some structure.
- What I do is I have my daily routine in my bullet journal, but life changes like my agency care is at different times each day so I have my routine on my iCal so I can change it as well as colour code it.
- Another great alternative that I also have a use is the Stickman Communications pacing magnet set so I can create my day on a magnetic wipe board with different coloured magnets that I can write on. This gives me more flexibility as I can change it for how my day ahead will look as well as changing it around during the day should I find my energy levels drop and I need more rest and lower-level activities. Also some days I’ll use a green magnetic for a particular activity and other for the same activity I may use an orange or even a red one.
This is my magnetic routine for today: