For more on feeling tired, I wrote other things about this topic at the link above, but in this post I’m going to try and have a slightly different focus.
This post was inspired by a question on my Twitter (@medievaldebbie) from @DrKylieMurray: What about coping with fluctuating energy levels – how to cope when you’re less able to do stuff vs being more functional?
This is a hard question to answer (but an important one!) – partly because I don’t have a quick answer. It might be easier if I was better able to predict what my tiredness levels will be like on any given day. If there was a pattern in tiredness (from activity, or travelling, or lack of sleep) I’d be more able to pace myself for days I need to conserve energy. I’m going to try and track what my energy levels are to see if a pattern becomes clearer that way, or if there seem to be particular times of the day I feel more tired than others. I’m also never completely sure what causes the tiredness – the cancer itself, my awful sleeping pattern, being very inactive so easily tired out by relatively small things, post-food lethargy, the combination of medication I’m on or the chemotherapy (though as that’s only five days in every 28, it feels unlikely.) The most likely answer is, of course, a combination of the above. So far I have definitely found the fluctuations in energy levels to be harder than the lack of energy itself – I like planning and stability, and it’s very hard to do that when nothing feels plannable or stable!
A lot of people, particularly those with fatigue related conditions, have written a lot more articulately than I can on this. The spoons theory is quite widespread amongst the community (I don’t personally always find it helpful but I know a lot of people do, for mental and physical health) – if you aren’t familiar with the theory, it was coined by Christine Miserandino in her 2003 essay The Spoon Theory, and refers to the number of ‘spoons’ (a visual representation of energy) tasks take – it’s useful in explaining how some tasks take up energy even if non-disabled people don’t necessarily realise they do. Things like washing, or coming downstairs, or reading all count as ‘tasks’. There’s a lot of things on Twitter and Google if you want to research the idea further, and from people who are much more informed and knowledgeable than I am!
In many ways this has been helpful to me – particularly in reconceptualising what a task is. In other ways, I find it difficult though this may just be that it doesn’t fully apply to me or that I’ve misunderstood it! Because I can’t predict the fluctuations, some days I’ll have much more energy and be able to do a lot more than others. Some days I don’t do much more than come downstairs! I need to remember that this is still an achievement, though, and also that it’s okay not to ‘achieve’ things, however counter intuitive that is for me.
Paying attention to what my body is telling me is always important – reading is a lot harder than watching Netflix, for example! I’m finding eating fine but I often need help cutting things up. I have to go upstairs in the evening before I get too tired to actually climb the stairs. On the other hand, I need to get better at doing things when I do have the energy – partly this is due to my mobility not being good and so if stuff isn’t next to me, it’s harder to get it for myself (whereas my phone is almost always next to me, and so playing games on it is often the easiest if not the most fun or best option). I’ve got a huge list of books to read and so I really should be trying to read them instead of just playing countless rounds of Spider Solitaire on my phone (although being tired has meant plenty of Netflix time, and so I’ve been able to tick off a few things on my to-watch list at least!)
Another thing I need to factor in is that everything takes longer – going up and down stairs, walking to the toilet, getting in the car. Because it is taking longer, it takes more energy, and is more tiring than it would have been under ‘normal’ circumstances.
As I mentioned in my end of January blog post, I’ve got a busy February planned. (https://debbiescancerblog.wordpress.com/2018/01/30/january-february/) I’m hoping that I don’t need to cancel or rearrange plans due to tiredness, particularly because all the plans I have are things I’m really looking forward to and it would be a huge shame to miss out on. Managing to do something is better than burning out and not being able to do anything though.
One advantage that I have is that because I have never learnt to drive, and even if I had I wouldn’t be allowed to now, I’m driven where I need to go by my parents. This obviously has a knock on effect on my independence and the way I see myself, but it means it’s easier to plan for trips because if I need to, I can nap in the car (or at least rest, because even as a child I wasn’t good at sleeping in cars!)
I think that the most important summary of this, though, is just not to out too much pressure on yourself. If you feel you can do something, try. If you don’t, don’t feel like you have an obligation to yourself or to anyone else. It can be very tempting to compare yourself with other people, but there’s a fine line between motivation and set backs when you do that. (This may be the most hypocritical piece of advice I’ve ever offered!)
I’m not sure if these musings actually answer the question, or if they’re in anyway complete. If not, they may well be added to as I think of more things, or get to know more about how all this works.