Vital adaptations for Chronic Fatigue Syndrome (CFS) or Long Covid
There are some things I really wish I had known about when I became chronically ill, and adaptions are one of these things. You may be able to get some of these adaptations funded by your local council (self-refer yourself to Adult Social Services), and the rest can be self-funded by a successful PIP application.
Chronic Fatigue Syndrome does vary from day to day or even from month to month, and no one with CFS is the same or has the same symptoms, so do keep this in mind when reading this guide. This is what worked for me.
Here are my top 15 vital adaptions for chronic illness, but particularly for Long Covid/ CFS / ME / Chronic Fatigue Syndrome:
Bath board / shower seat and a back scrubber
Bathing and showering are tiring. You can get adaptations for bathing from your local council such as a bath board or shower seat. You may find a back scrubber or other similar equipment can help if you struggle to raise your arms enough to wash certain body parts. Most people with CFS will find that, at their worst, they can only bath twice a week at the very most. So you may think how could this help? But these adaptions can mean you don’t have as much recovery to do after you shower or bathe (i.e. if you are fatigued for two hours after showering now, it may be only one hour with some equipment) and may eventually mean you can shower or bathe more often.
Handrails & grabbers
Handrails in the shower or bath can reduce your chances of falling if you feel suddenly fatigued or faint. Make sure you have some handrails by any stairs, your entrance way and your front door if you struggle with this in particular. The council will usually supply and fit these for you, but it is usually your responsibility to paint/varnish and maintain it. A PA can help with maintaining it.
Grabbers can help you reach things you can’t grasp from where you are sitting or help you pick things up off the floor with little effort. They help with saving your energy that you would normally spend on reaching for things.
Perch stool and a microwave
Perch stools mean that you can sit at counter height to chop vegetables, or stir food in a pan, for example. By sitting it can lower your heart rate more than standing, so this is ideal if you have been advised to keep your heart rate low and can help you with pacing so that you can manage more overall but not fatigue yourself as much.
Microwaves are a lifesaver for those who have such low energy that cooking isn’t possible. From microwavable porridge to soup and from ready meals to reheating leftovers, this is an essential part of the CFS kitchen!
Portable bidet
When a shower/bath is too much, a portable bidet clips over the toilet and you can clean your lower regions in the warm water - if you feel like it, Epsom salts can be added to the water.
I put cleanser on my face (I personally love Sleepy Face by Lush - and it aptly describes CFS!) and then wipe my face with the damp face cloth, whilst using the bidet, which saves energy and reduces the amount of time you are out of bed / not resting.
You can get a PA or partner to fill it up for you. Mine has a plug so you don’t need to carry it to empty it.
A face cloth, electric toothbrush, wet wipes and dry shampoo
On days when the portable bidet or a shower/bath is too much, a face both, wet wipes and dry shampoo is better than nothing. You can do your wash whilst sitting on the toilet or on the edge of the bath. I put cleanser on my face, whilst wiping my body with the wet wipes and then wipe my face with the damp face cloth. You can use dry shampoo if needed, too. Cleaning your teeth can be really hard if your arms don’t feel that strong, so an electric toothbrush is a great tool to help you.
Remember, some washing is better than no washing, so don’t feel your options are all or nothing.
Smart watch and smart lighting / heating.
This is fundamental to chart your progress over time. How many steps did you do today? This month? It can also have a heart rate monitor so you can see if your heart rate is getting too high and to help you work out at what a ‘too high’ heart rate is. It is good if you can keep a record of your steps and heart rate or, even better, choose one that links to a smart phone and logs it for you!
I also got Hive heating and lighting which meant I could set schedules for lights and heating in my home based on my routine on different days as no day is the same. It also meant I can control it from my phone and I don’t have to get up and walk to turn on the heating or turn off the light. There are some remote-controlled plugs you can get, too.
Slotted spoon
Sounds trivial, but it’s really not! Instead of straining the water away over the sink, use a slotted spoon to dish up vegetables. It means you have less to lift if your limbs shake or you are too fatigued to be in charge of pouring away boiling water.
You can leave the water in the pan to cool and tip it on your plants or down the drain later. This also helps with the pacing as you will have eaten and rested before tipping away the cooled water.
A bag containing painkillers, ear plugs, sunglasses, a blindfold and a small TENS machine
Having a bag with all your supplies in means you can easily take it around the house or even out with you. Chronic Fatigue Syndrome can make you a lot more sensitive to light and sound, so a blindfold, sunglasses, earplugs, etc., can be very useful.
Many folks with CFS suffer from chronic pain also, so painkillers are very useful. TENS machines are really good for chronic pain, which most people with CFS get as well. You can get portable wireless ones that are USB-chargeable.
Orthopaedic pillows and knee pillows
Pillows are so important for good rest, both day and night. Orthopaedic pillows support your head, neck and back. Knee pillows are great for ensuring your knees and hips align with your body. They are great, in my experience, for reducing pain, inflammation and improving restful sleep. For day rest techniques, please see my post on restful activities.
Healthy snacks
People with Chronic Fatigue Syndrome often struggle to make food. When I was at my most ill, I would alternate between the following quick snacks / light meals:
microwavable porridge with oat milk, banana and nuts,
oat cakes with nut butter
a handful or two of trail mix (nuts, seeds and dried fruit)
banana or apple
a slice of quiche with half a bag of pre-washed salad and some olive oil
I try to accompany each meal with a pint of water. Using a straw (a reusable straw if you want to be environmentally friendly) makes drinking a lot easier, and some water bottles have built-in silicone reusable straws.
Blackout blinds
In my bedroom, I have thermal blackout blinds. This means that my bedroom stays cool in summer, warm in winter and I can sleep before sunset in summer and have a lie in after sunrise. Although sleep hygiene is very important for improving CFS symptoms, often people with CFS do find they need to sleep longer or even during the day. Blackout blinds help to create that night time environment during the day, if needed.
A day bed or sofa - large enough to lie on
You may need to rest during the day. Generally, healthcare professionals say it is important to rest in a space different from where you sleep at night during the day. So I used a sofa bed in my living room for 15 (or more) minute rests in between each activity during the day. This means I could keep my bed for night time sleeping only. Having separate spaces for day and night rest can improve sleep hygiene, which is very important for improving the relief of CFS symptoms over time.
Getting a PA / carer
You can refer yourself to Adult Social Services and ask for PA support. A PA can help with personal care, such as bathing and dressing you, as well as helping with cleaning, laundry, shopping, gardening and socialising. If you choose Direct Payments, you can usually opt to self-manage these and you choose who you employ to help, when they come and for how long. The council usually allocates you a certain amount of hours depending on your condition and whether you contribute financially to your care depends on your income level.
A Blue Badge and wheelchair
You can apply for a Blue Badge from your local council - usually you need either proof that you have PIP or a letter from your doctor, though this varies from region to region. It allows you to park closer to buildings and means you don’t have to worry about being stuck somewhere and unable to reach your car after an activity (e.g. a doctor’s appointment).
A wheelchair is a massive decision and it can feel like you are giving up somehow and, to others, it may seem as though you don’t want to get better. Everyone is different but, for me, getting a wheelchair meant that I was able to get out and socialise more than previously if someone could push my wheelchair. I was able to access events and experiences that I previously couldn’t. If I hadn’t got the wheelchair, I would have definitely felt like I had missed out or that life was passing me by, so it was fundamental to maintaining my mental health and social life.
Getting a chronic illness support coach
A highly-trained coach who is trauma-informed and has a strong awareness of chronic illnesses will be able to help you to plan your recovery, help you with your pacing, provide moral support and resources, give you vital information that you may only learn by reading 200-page books that you don’t have the energy to read!
To learn more, check out my coaching philosophy and what you can achieve from coaching and book a discovery session.
