Thought I would share a few things I have found useful for saving energy and surviving brain fog since I’ve had moderate-severe ME/CFS/CFIDS.
Not all of them might suit or make sense – and not everyone has the budget for things like a new bed. It’s a personal list and maybe you might find some of it useful.
– Electric Toothbrush
I didn’t think an electric toothbrush would make a lot of difference – but it really does. I use a Ultrasonex which uses ultrasound as well as the vibrating bristles to clean your teeth. It’s fairly lightweight and even on days when I am exhausted and haven’t the energy to do a long/proper brush I know the electric brush will do a better job than a manual.
Mine costs under £20 off ebay (my model doesn’t seem to be on sale at the moment so they may be brining out a new version). Even my dentist was impressed. After using it for just a week I went from needing a double scale and polish to needing just a quick scale and polish by the dentist. Let the brush do the work I say.
I’ve had a grabber/reacher for quite a few years now because of my back problem. But I’ve found it handy for energy saving with CFS too. It gives me a longer reach so saves me having to move or get up just to pick up something for instance. I can even open the curtains whilst I’m still in bed thanks to my grabber. I use it for putting on my shoes without bending down, picking up post or dropped items – even for fussing the cat sometimes! You can get these for under £10 if you shop around.
I bought a lightweight wheelchair earlier in the year to help conserve energy on outings. It was a difficult step to take but itdoes make a huge difference. I couldn’t afford an electric chair and they are often quite bulky to transport in a car – so I went for a good manual chair. After all I haven’t been out anywhere onmy own in over a year. So I usually have someone to push me.
Even on days when I feel well enough to go out using the chair means I still feel well at the end of an outing. I can participate more and I don’t slow everyone down as much I used to. Outings used to be about small short bursts of energy/walking and looking for benches. Using a chair gives a lot more freedom and flexibility. And it also means I am not paying with post exertional malaise for days or weeks afterwards. I
If you’re going to invest in a chair I would say spend as much as you can afford to. Cheaper chairs are often heavier making it harder to manoeurve and for your friend/carer to store it or throw it in the back of the car. Also I think it’s important (and less tiring) if you are comfortable.
I’m also considering whether a four wheel rollator might be useful for days when my energy level is a little better.
– Drinking water
Oh I get so sick of people telling me to drink lots of water! Sigh. I don’t want to be one of those people. BUT. I have noticed that sometimes when I suddenly feel very tired or run down, that taking a few minutes to stop and drink some water can really help. And it doesn’t really cost anything to do so I figure it can’t hurt.
I normally use a 50cl plastic water bottle because I can put the lid on and keep it ight next to me at all times.
Be careful with plastic bottles as they supposedly start to release chemicals after a while. I now use a Belu bottle of water – which is made from corn (yes really!) and refill it with tap water. We do have a filter jug which we use for tap water as it helps remove some of the chemicals and it just tastes better!
I tried using a Sigg bottle (which has non toxic inside coating) but found it a little bulky and (though it might sound silly) the screw top needed too many turns and it wore me out!
– Screen Reader
Earlier in the year my brain fog was particularly bad. I found it difficult to read anything more than a few lines of text. I still struggle with large articles, blogs, emails etc especially with long paragraphs.
I installed ReadPlease on my PC. It’s a programme that will read out text to you – you can copy and paste text from any document or web page and it will read it to you. I find this very useful and it helps me to comprehend better. There is a free version which is excellent.
I upgraded to the ReadPlease Plus edition which lets you add pronunciations and anchor the screen readerto the top of your screen amongst other useful things.
– Adapting my PC
To help with typing and with reading on the screen espeically I applied some adaptions to my PC. This is free to do and helped make things easier for me. I use a pale yellow background as it makes text easier for me to read.
There’s great instructions about altering background, font sizes and other things in this article.
– A comfortable bed
Not something we can all afford and a huge effort to action I know – but I am so glad we bought a new bed last year. Lots of room (king size), comfortable mattress and a sloping headrest so I can sit up in bed comfortably. You definately need to enlist help to install a new bed.
You can also now buy mattress toppers to add comfort, as well as specially designed cushions and back rests for sitting up in bed comfortably. I think you spend such a lot of time in bed – especially if you are a CFS sufferer – it’s worth being really comfortable.
– Tidy as you go
I am such an untidy person by nature. But I have found that the only way to stay sane with CFS is to put things away as you go. It saves me brain power (“now where did I put that …”) and energy to tidy the things I use as I go along.
Tidying a big pile is exhausting. It’s much easier to do it a little at a time.
– Keeping things where you use them
In addition to tidying I’ve found it useful to keep things in the places where I use them. So I keep the medication I need to take at night next to the bed. I also keep earplugs, tissues, pain killers, mouth guard and intensive moisturiser right next to my bed within arms reach. I emergency snack bars in an accessible spot in the bedroom – so if I am exhausted I can still stem my hunger without a trip downstairs. I keep a second home phone within grabber distance of the bed. And so on.
I also use my handbag as a portable stash of stuff of important stuff. In there I keep medications, sketchbook, pen/paper, bacterial dry hand cleanser, etc. That way there are always just an arms length away. The trick is keeping the weight down so it’s not exhausting to carry around!
– One trip multiple purpose
When it takes a lot of energy to move about I try to make the most of every trip. So for instance if I am downstairs I will combine a trip to the toilet with a small detour to the kitchen to fetch a drink. Perhaps when very tired I will combine a toilet trip to the bathroom with brushing my hair, or brushing my teeth so I get one hygeine task done at a time.
– Notebook as a memory extension
I use a small (A7) notepad to make lists of things I need to remember or have to do. It might be a list of every single thing to do that day (when my memory is very bad), or a note of something someone has asked me to do. I also jot down any expenditure I make on online shopping so I can tally it up once a week or so.
Writing things down can really help when your cognitive function and memory are poor.
– Repeating things / Talking out loud
I find a useful cogntive/memory trick is to repeat things and say them out loud. It’s simple but effective. When you’re asked to do something, or often for me when I ask a question and get an answer – I find repeating what has been said out loud very helpful. It clarifies that I have understood the words said correctly and helps to sort of get it set into my mind.
I also find that talking out loud can help when doing tasks is difficult. If I say out loud what the next step is in making a cup of tea I can usually get through it successfully. You might feel a bit silly but it does help.
– Minimise noise
I found early on in CFS that I find it incredibly difficult to have a conversation whilst the television is on. I find background noise adds to my confusion and makes it hard to concentrate. So usually I don’t listen to the radio or have the tv on whilst I am doing other things. Sometimes I find turning the sound down on the TV during ad breaks very helpful. I often find adverts over stimulating and they are usually a lot louder than the programme you are watching.
I also have ear plugs and have recently bought a pair of ear defenders – so if I have unwanted noise during the day (like building work, garden tools, etc) I can block it out. I often find this kind of monotonous intrusive noise quite stressful.
– Excel for budget tracking
I have used Excel for tracking my monthly budget and expenditure for many years. It’s how I got myself out of debt and stayed that way! I have different categories of expenditure (like regular bills) and then sub tables for every day things which add up the total and show me how much I have left that month. It’s a useful brain saver because once you’ve set it up it can do all the maths for you.
– Use a friend
In the nicest possible way use a friend. Whether it be for practical or emotional support.
I also like to use my friends when I am struggling with poor cognitive function to find out what I would do normally. If I feel lost or confused they know me well enough to see clearly and have a good guess at what I would do or say if I was well. They also remind me how that confusion is a temporary state.
– Digital Hard Drive Recorder
Another expensive item which isn’t practical for everyone. We had ours as a wedding present. I’ve found this invaluable. I like my telly programmes but sometimes I’m not in the right frame of mind to watch them. Often the good programmes and films are on late and I need a decent bed time these days to get my 10 or so hours of sleep. With a digital recorder it’s easy to record programmes and watch them when it suits me. No need to get off the sofa to change a tape or DVD – just point and press to watch a programme.
I’m also able to record some daft telly that only I like in our house so I have trashy stuff to watch in the day when I’m not capable of anything else.
– Online shopping
Without online shopping I don’t know where I’d be! I’m not able to get out to the shops by myself – and even with help it’s an exhausting affair. With online shopping I can take as much time as I like selecting items and shopping around for the best price. I can order any time of the day or night. And as items are often cheaper than on the high street it offsets the postage costs. I also figure I am not using petrol/parking charges or bus fare so postage is ok to pay.
I’m also able to buy some items which would be difficult to source in my local shops – like some vitamins and suppliments. I also now have a credit card with cash back so I’m even making a few pennies when I shop.
– Keeping in touch via the internet
The internet has without a doubt been an absolute life line to me. It is my main means of keeping in touch with the outside world. I find online communication much easier than phone or face to face. Using Facebook and MySpace gives me an easy way to keep in touch with lots of people simply – a way to tell them what is happening in my world and vice versa without a big fuss. Email is great for more personal contact and exchanging photos and so forth.
I also blog and use other social networks like Flickr to make connections with people with similar interests, outlook and so forth.
– Answer phone / caller ID
An answer phone is an essential piece of kit when you find talking on the phone difficult. I struggle with non-social calls (although even social calls leave me exhasuted at the moment). So if I don’t recognise the number (which is where caller ID is very handy!) then I can leave it to answer phone to deal with later or refer to hubbie, etc.
– Lowering your standards
The simplest energy saver I have found is to lower my standards! My house isn’t very clean. I don’t bathe or wash my hair as much as the average person. I often spend half the day in pyjamas. When I wrap a present I’m happy it’s wrapped and not bothered if it’s not perfect. When I chat with friends or write a card or say hello to a neighbour it doesn’t matter if I’m tired or slurring or get mixed up. I don’t have to be perfect. And even though my house isn’t clean, my clothes are scruffy (but comfortable) and my hair is unkempt the world doesn’t fall apart.