Useful aids for CFS and ME sufferers
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[UPDATED MAY 2023]
Introduction
I sometimes hear from my patients or their carers about some useful gadgets or aids that make their lives much easier.
I am always grateful for any such recommendations and feel that the best way to make them known to as many people as possible is to list them here.
Independent Living Website
Please see Independent Living
They describe themselves thus:
Independent Living has been online continuously for more than 21 years now. We have been providing impartial information about living independently with a disability since the last millennium. We set up the site in the first place simply because there was nowhere to find out about products and services that could make daily living and mobility easier.
Ideas from my Facebook Group - 'Support for followers of Dr Myhill's protocol'
Sarah Toogood of the Facebook group collated all these wonderful 'Tips to save energy':
If you would like to join this group or follow any of my Social Media Platforms, please see My Social Media Presence
More Ideas from my Facebook Group - 'Support for followers of Dr Myhill's protocol'
- Lee Walsh - "Something I’ve found really helpful during the severe years is disposable plates because of how light they are and that you don’t need to wash them up! These ones from Asda are the best ones I’ve found. They’re much sturdier than the cheapest ones and have a couple of centimetres of depth to them. They don’t bend when you carry them and food doesn’t go flying about." See Asda Paper Plates
- Debbie Voller Knight replied to Lee Walsh's idea [as above] by commenting - "Lee Walsh good idea 👍 I put kitchen towel on my plate under dry ish food with a plate underneath if needed, I wash up twice a week, when I’ve no other priorities, I must say since getting a a new fridge freezer food stays fresh a lot longer."
Shopping trolley with seat
A patient has mentioned to me the idea of trolleys with seats. Here is a link Shopping Trolley with seat This is what she says:
- "I can’t stand or walk long enough to get to the shops often enough so I looked to buy a stick seat ages ago but didn’t buy one because I felt too embarrassed to use a stick and didn’t want to carry one but I have just bought this trolley seat and it's brilliant. I haven’t been well enough to go out yet but the seat feels really safe, comfortable and easy to pull out and I won’t need to carry my shopping. I really love it and the service was excellent."
Easy pull garden tub
Great for taking out the rubbish and gardening. Much easier than a wheelbarrow, easier to pull and manoeuvre. Easy Pull Garden Tub and Barrow
Laptop bed desk
For those who want or need to use their laptop in bed or in a comfortable laying position. You do not have to be a CFS sufferer to enjoy this gadget!
Aids to independent living
A range of useful aids to independent living can be found on the website of Mangar International Mangar - Simple solutions for independent living
More ideas from Martina Harrison
[May 2023]
I received this list from Martina Harrison, a website reader, - more great ideas, in her own words:
- Whilst you have home aids listed, I don't believe you have put that people can go to the GP (in the UK) and ask for a home Occupational therapist [OT] visit, which entitles them to FREE aids. Millions of people with ME could do with a free aid or two! I'm sure many people with ME are unaware of this, as I was myself for years.
- An OT can then prescribe, for free, the delivery of a wheelchair, kitchen stool and bath seat (speaking from experience). A bath seat is for help when bathing and showering to sit on, but also it is worth explaining that a bath seat can help with getting in and out of the bath SAFER, especially from POTS - you can sit first before then going to stand rather than getting up completely from lying down and making oneself even more dizzy. The bath seat and wheelchair are adjusted for your use by the medical professional bringing it over.
- I was not going to bother with a bath seat but after having obtained one, I am so glad I did!
- A footstool. I wish I had got one years ago when someone recommended it. I didn't think it would be as useful as it has. Just having your feet up and nearly in a lying down position, rather than sitting to watch TV, has been less energy consuming. I don't think people will be aware of how helpful this can be, as I wasn't. That's why I think this information should be noted for people to give it a try.
- A lanyard for use when out helps as well. Sometimes when people are talking to you, it is impossible to respond due to cognitive issues, or maybe you can't respond due to difficulty speaking. Maybe you want to move to a seat and you have to explain to a member of staff, it's too far or too much at the moment, exhausting you. Not everyone has someone who can be there to explain. Or maybe staff want to call an ambulance and again you find yourself explaining this to a member of staff and stating that this won't help you and you need rest.This lanyard information can be given without having to speak too often, saving energy when you are down to being incapable of whispering even. People can adjust their symptoms and needs but here is mine- see pictures below.
- I regret not thinking of taking a lanyard with me for years, if I had known about this idea, I could have saved years of being more ill for using energy explaining to people approaching me asking if I was ok, making my recovery to get off the floor quicker. I wish someone had told me about this idea years ago! So I'm glad I found your website where I can now share it with others to save them the extra illness I went through by not having this simple tool to give me space to rest.
- Facebook groups for ME. People with ME may not think of this an aid, but it is. This is because it helps with mental health isolation and loneliness, as well as being another way to ease boredom when lying in bed, which all are really detrimental to stress causing a worsening of ME, and surely this is really common. The ME community is available on Facebook, and whilst not everyone is going to want to use social media, I believe this could be mentioned on your page as an 'aid', as it is an aid to mental health and will help a section of the people considering it. We know many people with ME often have very debilitating mental health due to ME and possibly gut health, so aids other than physical ones, such as meditation, mindfulness and social media ME groups should be given a shout out. Those new to the ME community may not consider these aids, or take them seriously as ways to help ME, and may consider these ideas a bit "hippy dippy", but the more anti-stress outlets are mentioned as an aid to stress which in turn helps ME, the better. These are people who sympathise with what you go through. ( See My Social Media Presence for Dr Myhill's Facebook groups and more. )
- To continue on this path of helping isolation and loneliness, let's consider ME groups as an aid. The ME association may know of groups in your area. This is worth mentioning on your site. ( See CFS/ME support organisations for some ideas )
- And, please let people know that even if a group isn't in your area, it doesn't mean they can't be useful. For example I joined an ME group and tried to go to their face to face social coffee meetings. I managed maybe twice before realising it was too far. I then moved further away. However the group does zoom coffee, craft and mindfulness meetings for free. I have barely been able to attend as I'm too ill, but I do occasionally go to their zoom mindfulness meetings when I can make it. Everyone in the group has ME and understands that we should talk about it. Some are quiet meetings, for those with sound sensitivity. These are people who sympathise with what you go through. Being free, it doesn't matter as much if you are too ill that week, because you don't want to be charged not knowing if you can even stay awake or be with manageable pain levels to turn up.
- Noise cancelling headphones. Especially when out. You can also get headphones that Bluetooth to the TV wirelessly, so that you can listen to the TV whilst blocking out a bit more background noise if you live with a grown child, family or a housemate.
Related Articles
External Links
- Shopping Trolley with seat
- Easy Pull Garden Tub and Barrow
- Wayfair Laptop Tables
- Mangar - Simple solutions for independent living
- Asda Paper Plates
- Independent Living
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