Having ME has changed my life beyond all recognition. It has meant that I have had to find ways and techniques to deal with these changes. Some things that I have tried were not of any benefit but others I found very useful and I now use them over and over.
Therefore, I wanted to document for you some of my top tricks that I have in my ME toolkit.
This is my personal toolkit and yours might well be very different. I would love to hear any of your tried and tested tricks and tips, and you can send them to me in the ‘can you help us do better’ form at the end of the blog.
I may also do a ‘your top TEN ME toolkit …’ blog if there are enough similar to each other, but different to mine, responses …
my ME toolkit …
… my ME toolkit …
These are not really in any particular order. I wanted them to be but as I tried to prioritise them I realised that the loss of any one of them would be equally devastating in its own right. It felt, therefore, almost impossible for me to order them in terms of priority or impact their loss might have.
Nevertheless, I have tried my best to somewhat prioritise them. That said, they are all equally important and really do impact on an almost equal level.
#1: heart rate monitor …
I have the FitBit sense. I have used a FitBit for years. From the Alta, to the Charge, to the Versa, and now the Sense. They are all good at what they do. But, none of them monitor specifically what I need to monitor which is my energy system and how much energy I have available to me without negatively impacting my health.
That said, the next best thing to monitor is anaerobic state in order to not push your body over its limits.
You see, when you always, and I mean always, feel like you might be dying you learn to do things despite how you are feeling. Otherwise, you simply wouldn’t do anything.
However, let this, what I am about to share, be a warning to you.
DO NOT PUSH YOURSELF, especially if you know or think you have ME/CFS. Pushing yourself causes further internal, yet unseen, damage to your energy system and alters your DNA. This results in making you much much sicker, often beyond repair, which is where I find myself now.
I am now left housebound and often bedridden and without a smart watch to notify me when I am in and above my anaerobic threshold (AT) I would not know when to stop. Thus, by using my smart watch I am protecting myself from further damage to my energy systems.
*a further note of interest … I have been in touch with Polar and shared with them scientific details regarding what someone with ME/CFS needs in a smart watch. They have passed this on to their design team and informed me to watch for updates that might be of benefit to us. I would obviously post here, and on Instagram, should they release something that caters more for our health needs.
#2: decent PJs & cardigans …
For over two years, probably more like three years, unless I have an out of the house medical appointment I haven’t gotten dressed.
I spend all my time in my PJs. Why waste energy …
But I do still want to look and feel as nice as possible.
This is where pretty pyjamas come in.
I aim for non iron ones, usually a natural t-shirt type fabric. I get so hot and sweat a lot too so I’m always on the lookout for capri length bottoms and large loose short sleeve tops. I can always add slipper socks and a sweatshirt or cardigan if I feel a little chilled, which I often do. I also aim for at least four pairs, ideally seven or eight, would be better.
I don’t have any yet, but I’ve read that bamboo is a beautiful fabric for wearing and not needing ironing too. They’re just so very expensive.
Presently, I am wearing M & S mix and match 3/4 length bottoms with mix and match short sleeve t-shirt style tops. I can’t link you as they are last seasons, bought in the sale, and are no longer available.
#3: ice packs …
Ice ice baby … ice is such a life saver …
I use ice most days as I wake with raging headaches daily and at least two migraines a week. Ice, along with my medications and also when I’ve taken my allocated amount of medications, is my life saver. I have a full deep drawer, and another tray shelf, in the freezer given over to medical ice.
I have three of the Aroma Season Migraine Caps and nine of the Koolpak Hot and Cold pads. I sometimes buy them singly or in threes when they’re on offer Koolpak Deluxe Reusable Hot/Cold Gel Packs – x3 (Triple Pack).
I keep the migraine caps in bags with coloured zips so that I can rotate them. I do find on a bad migraine day three isn’t enough and I want to build my stock to six. But they aren’t cheap. I use the koolpaks on top of my head, my eyes, on my neck, and sometimes on my feet when they burn and feel hot and painful. The koolpaks do have a life and can pop quite easily, whereas the migraine caps last. My oldest one is six years old, and the other two are about twelve months old. They do have Velcro, for fastening, which I really dislike because it gets full of fluff and hair, which makes them look scruffy. The cases are washable.
I couldn’t live without ice.
And would love one or two of the Icekap Migraine Cap (Patented Migraine Relief Headache Hat with 5 Gel Ice Pack) (Ice Hat Lasts Up to 3 Hours! Icecap for Migraines, Chemo, Sinus Relief, Head Tension, Menopause and More). They are just so expensive.
#4: eye masks …
Eye masks are equally as important as ice. I have loads of eye masks. Some with lavender and some without.
My favourite is my Morris & Co. Beauty Pink Clay and Honeysuckle Velvet Sleep Eye Mask. It is so comforting to wear and really blocks out the light too.
The above mentioned Aroma Season migraine hat can be placed over the eyes and also has a soft feel flap that can be folded over the eyes.
#5: comfortable earphones …
I have incredibly loud tinnitus and without earphones and some kind of noise I would never sleep.
I mainly listen to radio dramas, audio books, and podcasts. White noise, isn’t enough to stop my thinking. Where, mostly listening to something engaging stops me thinking, as well as masking the tinnitus, and helps me fall asleep fairly fast on most nights.
I have apple AirPods, but they are very expensive and the battery just doesn’t last long enough. I’ve also found the product itself doesn’t last that long neither, especially considering the cost.
I also have Urbanista Stockholm. These are so comfortable but when they are running low on battery the beep they give out is so loud it wakes me up. LoL
I have to use the hard solid in-ear earphones type because all of the coverings used on the other kinds that I’ve tried so far give me eczema inside my ear.
If you have any suggestions please please share them with me.
#6: easy foods …
Easy foods are necessary for two reasons.
#1 having easy food takes less energy from you in terms of preparation and tidying up.
In line with this point, I personally cannot prepare a meal any longer. My husband does our evening meal. And, if I want anything in between, it’s usually a bag of wotzits or a few crackers with pâté or hummus followed by a yoghurt and a few chocolate buttons or orange Lindt.
#2 easy foods, in the sense of not being over complicated or full of spices and foods that you cannot easily digest, make it easy on your body and energy system.
I used to be able to eat so much. Fortunately for me without gaining weight. However, as I got sicker, and possibly older, I began to gain so much weight and developed intolerances to some of my most loved foods. Then after that, I started to have massive digestive issues. And now, my poorly body can only tolerate small meals and limited food kinds too.
I would advise not to ignore the signals, like I did. As soon as you notice your digestion is impaired or compromised. Ease up, eat less, and cut out foods you find you are intolerant to.
By way of example, one experience of mine:
One of my most favourite foods is tomatoes. I loved them with everything. I could eat cherry tomatoes like a fruit treat. I would get large beefeater ones and slice them into thick slices and put them cold on toast with salt and pepper. As I write this my mouth is watering just imagining some yummy toast with sliced tomatoes on and plenty of salt and pepper. Yet, I now have a serious allergy to tomatoes. My lips swell. I get lumps and bumps and sores inside my mouth. And the following day, after eating anything tomato based, I have pain like I cannot explain. My insides feel like they are on fire and raw and my muscular upper back, in the thoracic region, hurts so much and feels very sick. Despite these symptoms I initially denied that tomatoes, my favourite food, that I’ve been eating since a child and now I was mid forties, could ever possibly make me so poorly. But I did a process of elimination and reintroduction and they categorically do make me severely unwell now.
#7: a bag for essentials …
Another really useful thing that I have is a bag, with all my essentials in, that I carry up and down stairs.
I use the Curver Shopping Bag, but this is no longer available and it is very difficult to carry. The handles are hard and dig into your hands and fingers. I would go for this one next time Curver Emily Knit Basket. In fact I’m buying one now, as I type, because it’s on offer.
I use it for my medications, my iPad cushion, a couple of chargers, tissues, and my cups with lids, a small ‘two pen’ pencil case, a small notebook, kindle, iPad, iPhone, cardigan, slipper socks, and anything else I might need both upstairs and downstairs and don’t have double of.
#8: personal care bits upstairs & downstairs …
I have hair brush / comb, face cloths, skin care products, dental care and other products in double and I keep a set upstairs and a set downstairs. This means I can take care of myself upstairs when I get up if I am able but if not I can also do it downstairs when I need to and at night before going to bed at night.
I am in the process of having a set of drawers downstairs for clean PJs, underwear, and cardigans etc, so that if I need to change during the day I don’t have to go upstairs to do it.
Limiting my trips up and down the stairs really can save me loads of energy. I now have to stop at least twice when going up or coming down the stairs and sometimes more.
#9: bodum mugs …
I find thermos style mugs invaluable, especially for saving energy. I can make a few drinks at a time and know they will stay warm and also safe from contamination because of their lids.
The ones I have are the Bodum Stainless Steel Travel Mug in pastel pink and the Bodum Stainless Steel Travel Mug in pastel blue, for my hot drinks and and for water I have BODUM Travel Mug in pink (no longer available in pastels). They are all dishwasher safe and the stainless mugs keep my drinks warm enough for me to make two or three at a time and they’re still warm when I come to drink them.
Even if you don’t choose the same styles as me, I would definitely recommend a stainless / plastic double walled mug with a lid. I wouldn’t be without mine.
#10: delivery / collection service for everything …
If it can be ordered online and delivered, then that’s the way to go. I’ve not been inside a shop or restaurant now in over two years, maybe even three.
I do have my husband who does all our food shopping but if I didn’t have him then my food would be ordered online and delivered.
It feels like a no-brainer. Why spend energy you don’t have … when there is a perfectly good alternative option available …
in summary & in conclusion …
I do hope these have helped you in some way.
However, this is my personal list and yours might well be very different. I’d love to hear yours and you can send them to me in the ‘can you help us do better’ form at the end of the blog.
Therefore, now that I have come to the end of my list, I have decided that I will do a ‘your ME toolkit …’ blog and compare the popular, but different to mine, responses …