Resource: Comfy Convalescence

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.

Rigging

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):

4 Pack Geuine Marielle Bra® - The Ultimate comfort Bra. Premium Quality Material Seamless Support Comfort Sport Stretch Action Leisure Black White Nude / Beige (XL - Chest Size - 41.5-43in Uk 16, 3 Colour Set + Free Black Bra (Same Size))

Marielle Bra®

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.

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V Pillow

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:

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U Shaped Body Pillow

I haven’t tried this but you use it like so:

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Maternity Support Pillow

Outdoor Lounging

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):

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Gravity Recliner

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:

Product Details

3D Eye Mask

 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:

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Princess Eye Mask

I find overhead, electric lights cause the worst pain. Something that helps a bit, especially in winter, is these lightbulbs in lamps:

Product Details

Varilight Switch Dimmable Bulb

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?

Extra Pressure

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…

20 Denier Medium Support Tights by Silky.

 You can get sports leggings (which men may prefer!):

Men Compression Base Layer

Men Compression Base Layer

 I bought some of the long socks.

The full-on macho option is the Anti-G astronaut suit:

SURPLUS CHINESE MIG FIGHTER PILOT PRESSURE ANTI G FLIGHT SUIT DC-8 -33088

Fighter Pilot Anti-G Suit

This would probably defy gravity more effectively than a recliner chair…

Further Tips

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!)?

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16 thoughts on “Resource: Comfy Convalescence

  1. Ooh, I loved these tips. Things I have found and love are:
    *Adjustable lap tray – can put it at different heights for computer, magazine, meal, so I can do all lying down/with my head raised just a bit
    *Shower stool
    *Noise cancelling headphones – heaven. Mine were a gift, and crazy expensive, but more affordable ones do exist. So, so effective. It means even building noise, hedge-cutting and 100s of kids playing hockey is just fine. You can wear earplugs underneath for extra-noisy times. I use them so much every day in a few different ways. You don’t have to listen to music/audio, you can just turn on the noise-cancelling by itself too.
    *Using a pencil – can write lying down, woo hoo!
    *Furniture risers: You mentioned raising the head of the bed – I did this about 6 months ago. Most people seem to do it successfully with bricks or wood, but I was nervous about that, to be honest. I got these http://www.amazon.co.uk/Gordon-Ellis-Elephant-Raiser-5-5-inch/dp/B006ON520U/ref=sr_1_3?ie=UTF8&qid=1432666389&sr=8-3&keywords=furniture+raisers. They raise the head of the bed by 5.5 inches and don’t budge. You buy 4 but only need 2. I was told 4-6 inches so 5.5 suited me well. Our bed is split, so we also support the middle of the bed with a wood plus something plastic to hold the castors. I have to say, I think this actually helped my orthostatic intolerance. Someone said they had to raise it very gradually – might be an idea since you also have POTS. I went the whole hog in one and did well, just took a bit of getting used to.
    Looking forward to seeing others’ tips!
    K

    Liked by 1 person

    • The tray sounds like a good idea for me. I looked at the elephant feet link and I think that would work for most beds. Ours is a bit odd though the outside is an old frame and the real bed is like a separate structure inside the frame. It requires an engineer’s mind. Fortunately there are several of those in my family so I may have to ask for a homemade solution.

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      • Yes, engineers in the family do come in handy with ME, don’t they?! I have a princess-pea problem with compression stockings, which is sooooo unfortunate. They make my heels swell and get burning bursitis and blisters within 2 hours of putting them on! Great! Haven’t found a solution. Tried sports socks underneath, cutting out a small hole. Physio and shop couldn’t help. Tried for 3 full months thinking my heels might adjust. I have now stepped away from the compression stockings. Such a shame. (I have what’s called Haglund’s deformity. Back when I was healthy my heels used to bore holes through the soft padding of my runners! I’m otherwise fairly normal.)

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    • Also I’m sensitive to getting headaches with any pressure on my head (sometimes the eye mask strap does this and the tiara was terrible). It’s a real Princess 👸 and the Pea type of problem! Is there a way round this with headphones or do you just not get that problem?

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      • Yes, I know what you mean. I can’t wear hairbands or indeed, anything else on my head. Magically, there is something of a solution, in the form of noise-cancelling earbuds! Now, I expect they’re a little less effective, just because you’re missing out on the extra physical barrier of the headphone, but still worth a shot. The crazy-expensive headphones I got are also crazy-comfy, with soft padding at the top and earphones that feel like getting cuddles from silky soft chubbiness. Quite a Goldilocks moment – just right. I can wear them on the lowest setting, but they do extend for larger heads. But I imagine this is a personal thing, and that they will fit some heads perfectly and others not so much. They had a 30-day free return policy (with the company, not the store), so I could have returned them if they hurt.

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  2. Great post thank you!
    I use the zero gravity loungers. I take one on holiday so that when settees and chairs are not suitable in a rented apartment I can rest or watch TV on the lounger. I can also stay out longer in summer by taking the lounger on an outing for resting on.
    I use a back friend on my wheel chair and on other chairs which really supports my back. Makes it much easier to sit upright for longer. Cost around £85 I think. Mine lasts several years of constant use before needing recovering. From ME design company. How aptly named!
    I use a travel neck pillow in the car and sometimes a wedge for my legs in the car if I’m having a bad patch.
    I use a grabber to reach things on the floor.

    Jenny, did you receive my short article called “living with illness”? Are you interested in posting it on here? It’s fine if you don’t think it’s suitable. I just want to make sure you’ve received it. I don’t know how else to contact you except for these comments.

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    • It’s hard isn’t it? Nearly 19 years for me. Research is advancing though and people do randomly go into remission, so hopefully not too many more years. The emphasis in this post is how to be as comfortable as possible in the meantime.

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