This is a podcast I dictated off-the-cuff, with no notes or planning, whilst fatigued (full transcript is below). Call it an experiment with a dictaphone . I’d love to hear whether you think this kind of raw media is something you’d like more of – do comment at the end of this post and I shall take all on board.
So today, I have pretty bad fatigue and I was hoping that some time this week I would have made a post about something with a bit of research behind it, but as per usual I’ve been flummoxed by MS not being [as] predictable as I’d like it to be. So today, I am using a new technique, which is very low energy-based, and that is using a dictaphone instead of sitting at my computer. Part of this is because for me, I get very fatigued when I sit in front of a computer or a computer screen, and secondly it means I can actually wander around the house whilst I’m talking which tends to help my brain keep a bit more on track.
So, today is a fatigue day, and I was just thinking about tips I could give other people as to how I deal with these days when they rear their heads. I knew it was going to be a fatigue day, because although I often wake up in the morning feeling very tired, today it’s taken on a different level, it’s a different scale that all of you will understand. And because of that, I did my natural thing of starting to beat myself up about all of the things that I wanted to achieve today, and checking in every 20 minutes to see whether I was feeling any better and could do anything. This is a habit that I have had for quite some years now and I have to keep myself in check and stop myself from doing that.
So what should I be doing?
What I’ve found is that with fatigue, if I properly let myself go psychologically and let myself rest into the fatigue it may well be that in a few hours, say the second half of the day, I might actually be able to be more productive. But the key, and the trick, is to not even think about that. And that is something which is psychologically very very hard(!) – to not think and have an aim to your resting. The resting is part of looking after yourself. But it doesn’t have an aim [such as] that the rest of the day you might be able to fill something up; you just have to be. And in order to just live in the moment, meditation and mindfulness for me has been absolutely key, in order to sort this kind of thing out.
So, what I do is go through a checklist:
1. Am I warm enough? – Am I too cold or am I too hot? Sort that out.
2. Do I have a glass of water by my bed and am I drinking that continuously?
3. Have I taken the pills that I need to?
4. Check my calendar. Is there anybody that needs to know that I am not going to be available today, and if so, drop them a call (because it’s a hell of a lot easier to leave an answer phone message sometimes, or even just a text. For work I’m lucky in that we have an agreement; I have the mobile phone number of my manager and of my team members so that I can do something that isn’t incredibly professional – we can communicate by text message and mobile phone which makes it a lot easier, because logging into my work laptop when you’re fatigued is like climbing a mountain…in flip flops.
So, that’s the first few things. And then the final thing for me is:
5. Have I got things in the fridge or the freezer that I can eat very easily.
Ideally the answer [to number 5.] is yes, because I have been trying to spend a morning or two every week making batches, and batches is the key: batching things, freezing it up. So soups, casseroles…absolute piece of piss in that way. But I am a human being and sometimes I don’t get around to it – probably because if I have the energy in the morning I’ll probably want to go and see a friend instead.
So if I don’t [have ready-made food in the fridge or freezer] then I have to do some quick thinking as to how I’m going to eat, and the trick with that is to always have something in the cupboard. So, I always have oatcakes; I always have tinned mackerel (I know that’s not everyone’s cup of tea(!) but that’s my Omega 3 intake); [I always have] tinned tuna; I always have microwaveable quinoa and rice (because although I don’t have a microwave I can chuck that in a pan and quickly rustle that up in 2 minutes); and what I tend to try and do is the minute I’ve got any roasting vegetables in the fridge I will roast them the day we buy them so that we have that in the fridge; and I always have a pot of houmous.
Now this keeps changing because I keep flip-flopping between diets at the moment, but in general, you always want to make sure you’ve got something in the fridge, or the freezer, that you can rustle up quickly, and ideally that’s fresh. Because you don’t want to be eating sugar when you have fatigue. Now I have a friend who brought a piece of cake round to me yesterday and I have just hidden it in the cupboard, because I know…..[what I’m like].
So then the final thing is how do you rest in your house, because the general rule is, if it’s not critical, leave it. But that is very hard. And I know for myself I am an absolute pain in the bum at sitting still and sitting down. So how do I deal with things that are untidy? Now I’m using a hack that somebody on shift.ms – High Heeled Fagin I think – had shared, which is to get yourself some pretty bags or baskets and if there’s any mess [then] you put it in a basket or bag, and then you can sort through that when you have a bit of energy, maybe 5 minutes here or there, and you know it’s not going to interfere with the general energy for the rest of the day. You can do it in tiny chunks: get that bag, sort it out, [then] leave it. But it means that it’s out of the way, you can’t see it, your brain is able to switch off from that.
So with my dictaphone experiment done I’m now going to sign off and say goodbye to you all. I would love to hear how anybody else deals with their fatigue days – any hacks that you have, any advice that you have, anything that you still find hard and would like to share with the community – we can get a little bit of a conversation going.
Good Health to everybody, wish you all well, and I’ll speak to you soon,
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2 thoughts on “Audio Blog: Many Lemons’ (Groundhog) Fatigue Day”
Mel, this is (another) great piece! I’d definitely continue with the “dictaphone experiment” if it makes it easier for you to continue to share such insightful content with us all – a great way for everyone to get an understanding of your life, and for MSers to take/share inspiration. Much love!xxx
I am so glad I found your blog! I’m getting ready for hospital treatment next week so am trying to preserve energy and make sure I don’t pick up any infections which would mean the treatment can’t go ahead. Have had a couple of days of quite bad fatigue, and your post has helped a lot! 🙂
P.s.mi agree that mindfulness and meditation are so helpful
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