@highheeledfagin

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highheeledfagin

MS Hacks vol.2: Taming Fatigue

Motivated by the wonderful response to Vol. 1: Beat the Heat, I've been trying to chose a topic for the next set of MS Hacks. There were a few possibilities - and I always welcome more suggestions - but I figured that fatigue seems to affect more of us MSers than any other symptom, so perhaps we could all stand to learn something by pooling our information. Of course, there are drugs such as Amantadine and Modafinil prescribed for fatigue, but medication is only a part of fatigue management. What do you do to tame the fatigue beast? As usual, I will start: To conserve energy, I take what I call a "non-sleeping nap". This basically means almost completely switching off and resting without falling asleep and messing with my sleep routine - I find a sitcom episode that I have already seen is just the right level to keep me awake without really requiring any brain work. Just having an hour in the day doing pretty much nothing really helps my batteries last a bit longer.

msue62

@msue62

I use "Come Dine With Me" in the same way! :-)

janep

@janep

In the first year after diagnosis I fell into the classic "boom and bust" cycle, alternating between really overdoing it and then crashing and doing nothing due to the resulting fatigue. Learning to pace myself; taking a break BEFORE I get tired rather than when I start to wobble has been the hardest thing in the whole MS journey I think and I'm still not very good at it! I found that taking even 20 minutes 'down time' like highheeledfagin describes when I got in from work helped me get through the evening and keep a normal sleep routine. I've also found that being more active and getting fitter has massively reduced the fatigue, I now only really experience it if I'm unwell or experiencing other symptoms.

celinec

@celinec

I have to say @janep I do the same and don't learn. In the middle of a lovely flare up so now rethinking lifestyle (as you do) and definitely need to fatigue manage. :)

karynb

@karynb

Nanna naps, and/or no-brainer tv rule! Even just 20mins zoning out can be enough to get you through the rest of the day :)

reddivine

@reddivine

Yeah I learnt the hard way, there is no "beating fatigue". It is and remains THE BOSS OF ME. Used to try and push myself but only results in me thinking, "that floor looks comfy, will they notice..." or not finishing sentences and the brain completely giving up... Have to, absolutely HAVE to sleep between 2 and 4 pm. no use taking phone calls or making appts then. I WILL MISS THEM or sleep thru them. And i find i need a cup of green tea on waking before i make snap decisions like "which foot is this sock for?"

highheeledfagin

@highheeledfagin

Scheduling a day of rest after a heavy day/night helps. If I get invited to two events on consecutive nights I automatically decline one of them: I know now that it just isn't going to be possible to do both (unless one is in my house and doesn't involve me moving at all).

pottypete

@pottypete

I 'forget' that I have ms and consequently am always overdoing things, which is not ideal. After doing so, I find that lying down with the tv on (a documentary works well) and I totally zone out. Whilst I may, or may not sleep, I rest totally. I find the sound of the voices on the telly comforting and hypnotic at the same time and that aids me in achieving a zen state.

highheeledfagin

@highheeledfagin

I've had some health issues of late and just seem to make lots of mess in my room that I just can't tidy before I make more mess. Instead of using all of my energy failing to tidy up, and still having to sit in a messy room, I've taken to just loading all of the mess into big supermarket bags and tidying one bag at a time over a few days. As well as conserving energy and time by chunking the task, I also don't have to deal being surrounded by mess that makes me feel worse.

SEF71

@SEF71

Hi all I have to say I'm a lot like @pottypete I totally forget I have MS so tend to over do things but thankful I have a wonderful partner who MAKES me rest ...... I tend to go and lie on my bed and listen to some quiet music or put something "mind numbing" (as my partner calls it) on the tv and I may not sleep but just rest my eyes until I feel refreshed or I have to go back to work. Also I have pj Sundays which are as follows ..... Get up,shower,breakfast,watch things on my sky+ planner,prep Sunday lunch,more chilling/nap,cook Sunday dinner then little more down time before early night to set me up for the working week and quite possibly over doing it again lol.

finchy

@finchy

I am finding Mindfulness (meditation) is helping me to be much more realistic about what I can and can't do as a father with young kids. Key to this approach is learning not to push away the things that we find difficult and not to chase after the things that we desperately seek. I wouldn't pretend to be fully competent in this practice but I do find it has now become an irreplaceable part of my daily life in dealing with MS.

cameron

@cameron

I've found labour-saving devices that prevent muscle tiredness are the best way to avoid the fatigue that follows. My top ones are: 1 Device for hanging wet clothes. It's a frame with built-in clothes pegs that attaches to a sort of coathanger. You can do your pegging while sitting down, then take the whole thing outdoors and sling it in one movement over the clothes line. Also brilliant for when you have to get your washing in fast because it's raining. 2 Instead of an ordinary vacuum cleaner, a powered carpet sweeper. Weighs nothing, easy to empty and has around 75% of the suction of a normal vacuum. 3 Oven and grill liners. They're a sort of plastic sheet(can't understand why they don't melt but they don't!) Instead of having to degrease your oven and grill, you just remove the liners and wash them in washing up liquid. 4 (Because I get tired arms when I'm searching around in kitchen cuipboards)I've put most of the contents in plastic storage boxes - big ones for flours, sugars, cooking ingredients and small ones (I use empty plastic containers from detergent capsules) to store herbs and spices. Once it's organised into the various categories, everything is ten times easier to access.

highheeledfagin

@highheeledfagin

Thanks @cameron, I'm definitely a fan of time/energy saving gadgets. I too have a tendency to store things in boxes and tubs for ease. The top shelf in my cupboard is mostly small stuff for baking, so I keep it in a tub that I can just slide out without having to stand on the chair and rifle through all of the items there. Actually, I suppose the first step was also an energy saving trick: arrange items in your cupboard into groups according to how often you use them, rather than just by type. By putting the most used items in the easiest to reach place, you can basically eliminate the need to stretch up or bend down to different levels to get the things that you need. It's surprising how much less tiring cooking can become.

highheeledfagin

@highheeledfagin

@cameron, I'm having trouble finding anything matching the description of the washing hange - any more info?

cameron

@cameron

Look on the Lakeland website under 'laundry aids'. As I recall it's called a smalls drier. They do two sizes, but are discontinuing the larger one so it's only available while stocks last. I've just ordered a second one. You can't hang anything very heavy on it, but as well as underwear, you can fit a couple of sweaters and similar weight garments. I have a larger, plastic one which I think came from Betterwear, but it's years old and their recent catalogue doesn't have it. Once you see the photo on Lakeland, you could loo for similar on Amazon or ebay. Hope this helps xx

cameron

@cameron

LooK for similar, even!

cameron

@cameron

Hi - just picked up your message asking for specifics on what I mentioned. I got my kitchen storage boxes (shelf size) at Tesco, and have seen similar in Dunelm Mill. Small boxes, as I said, I recycle empty detergent capsule containers - they're just the right height for Schwartz spices. Everything else you can get at Lakeland online. 1 LARGE ALUMINIUM SMALLS DRYER (Around the Home > Washing and Laundry > Pegs and Hangers) £12.99 (only available while current stocks last) 2 GTECH RECHARGEABLE CORDLESS SWEEPER/LAKELAND RECHARGEABLE CORDLESS SWEEPER (Around the Home > Clean and Protect > Mops and Brooms) £49.99 /£42.99 3 MAGIC OVEN LINER (Around the Home > Kitchen Cleaning) £9.99

highheeledfagin

@highheeledfagin

Cheers. After I sent you the message, I saw a washing hanger thing in poundland, haha.

cameron

@cameron

Hope you find it useful. I wouldn't be without mine now.

highheeledfagin

@highheeledfagin

Okay, so fatigue did actually get in the way of this one but it is still going and nearly finished. If anybody has any other tips to add, that would be great, as I think we could do with a few more.

reddivine

@reddivine

@highheeled fagin.......i love the tidying up rule. After all i reason if the clutter is in a BOX, well it ain't cluttered anymore. And i have a "no tolerance" policy with the family.....basically cuz its a bugger to pick ANYTHING up off the floor. Make em do the things you can't!