I try to keep the Resource tips free as far as possible because a lot of tips elsewhere involve buying expensive supplements and other significant expenses (see these Free tips). Those of us out of work due to health problems find it stressful to have lots of people tell you that the amazing thing that is going to make you well is such-and-such but it will cost you £500 one off, or £140 every month, to do a therapy properly. Of course this money is actually worth it in a cost-benefit analysis if it does make you well as we would earn well over this if we got back to work (and I am a believer that people with ME/fibromyalgia/POTS do go into full functional recovery or remission). However, how do we know which expensive treatment will work for our specific, ill-defined problem?
Anyway, this post breaks the mold a bit for this site by recommending some products of middling expense which may make your everyday life more comfortable, until you achieve recovery. At this point in time I don’t receive any affiliate funding, so this is just based on my personal experience without any incentive to sell you things. I’m not adverse to doing affiliate funding or reviewing free products in the future (hint! hint!) but I would always tell you if my opinion may be biased in this way.
The product that prompted me to write this post is the Marielle Bra. I just bought 4 for £7.45 (images are linked in this post):
This tip is likely to only be relevant to female spoonies (sorry guys) but these are so much more comfortable than wired bras I had to include them. They are completely seamless and contain no wires, just a 4-way stretch fabric. They are ideal to sleep and rest in or to wear with your heart rate monitor (which becomes uncomfortable rubbing against a wired bra). I think they are slightly less flattering than a standard bra to wear out, but that may depend on your figure. I noticed one reviewer wore one at a time in the house and two (for extra support) when she goes out. Also, check the size guide before ordering as they aren’t in standard bra sizes.
V is for Very Comfy
Following on from my newest buy is my longest serving comfort aid: a V pillow to use to sit up in bed or on the sofa.
Prices start from around £3 on Amazon and Ebay although it seems like the best deals are with a cover included. It makes it much more comfortable to sit up.
You may prefer a wedge pillow or bolster pillow. I’m holding off buying a wedge pillow as I want to find a way to raise the angle of my whole mattress for POTS purposes, without breaking the bed.
There are also some interesting looking bolsters like this, advertised for pregnant women, but looks suitable for spoonie needs:
I haven’t tried this but you use it like so:
This type of lounger is said to be the best way to sit for POTS and Orthostatic Intolerance (can’t remember where I read this):
This may be because it defies gravity! You can lie at an angle that feels good for you and gradually sit up more as you get better. I have one exactly like the image above in my garden and I go outside most days over the summer. Some people use these inside as well as out (eg to watch TV or rest).
Close the Curtains
Unless you’re severely ill at the moment, you don’t really want to be shut in behind closed curtains just because your worst symptom is light sensitivity. When I’m outside on the gravity recliner I’m wearing sunglasses and a wide brim hat. Last year I used a parasol that attached to the recliner but it kept breaking, so I won’t recommend that.
On days when my eye pain is bad I sometimes sit in the garden with a 3D eye mask on:
You can buy these from ~£2 and the 3D shape means they don’t press on your eyes. Combine with some ear plugs and you can block out overwhelming sounds too (apparently you can buy made-to-measure ear plugs that block out specific sounds so you can hear human voices still, I haven’t tried this). Eye masks are also good for daytime naps, although I find the strap gets a bit uncomfortable. If you’re a princess it looks like this:
I find overhead, electric lights cause the worst pain. Something that helps a bit, especially in winter, is these lightbulbs in lamps:
You can set them at the best brightness for you using an ordinary switch (no need for a dimmer switch). If your relatives are in the room by themselves they can have it at full brightness.
If I was buying new lightbulbs now though I think I’d go for a Smart one or a remote control so that you don’t have to get up to turn the light on and off. By the way, has anyone been successful in getting this type of wifi technology through Occupational Therapists?
A major problem in POTS is blood pooling in the lower legs. Support tights help this by exerting pressure which acts like a substitute for the vasoconstriction which should be happening naturally. I soon discovered though that the official tights are very expensive (considering I need several pairs and they ladder so won’t last that long). I’ve been experimenting with searches and some standard support tights are quite good. My current Ebay search is: tights graduated support ((medium, duomed, 8, class II, class 2)). You may benefit from cutting a hole in the crotch to allow air to circulate…
You can get sports leggings (which men may prefer!):
I bought some of the long socks.
The full-on macho option is the Anti-G astronaut suit:
This would probably defy gravity more effectively than a recliner chair…
If you found these tips helpful, I recommend getting the excellent Severe ME/CFS A guide to living by Emily Collingridge. It has a lot of practical information including some information relevant to those who aren’t currently ‘severe’.
What should I buy which has improved your life and costs under £100 (and you get no money for recommending!)?