Spoonie Survival Kit: Spoonie Friendly Bedding

Spoonie Survival Kit: Spoonie Friendly Bedding

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chronically ill, disability, lifestyle, M.E., spoonie

Being a spoonie seems to bleed over into every part of our lives. Things that you barely even thought about as a non-spoonie become complicated, time consuming, often costly decisions. Everything from what to eat to what kind of soap to use or what kind of light bulbs you have in your house become minefields, balancing symptoms with sensitivities, budget & about 100 other things.
When you are in bed you just want to get the best possible rest you can & not deal with anything, which can be hard when your duvet makes you feel like you are being slowly crushed under a matt of (incredibly heavy) nettles...
There are lots of things spoonie friendly bedding needs to do (every spoonie has different requirements) but as the nights are starting to draw in & it gets colder I thought I'd post some of my favourites in the hopes they spare people the sleepless nights I had under my old winter duvet (double bed sized, unbelievably heavy & feather filled! lets just say it did NOT work for me).

Heated Blanket

Last winter, or possibly the winter before (they are all kind of a mush) I found my symptoms had progressed to the point where my winter duvet was too heavy for me to cope with. Unfortunately however it was winter & in Yorkshire that means the nights get COLD. Even wearing layers (including a jumper) to bed I was too cold to sleep.  Luckily for me my mum is something of a genius & thought of using my heated blanket at night (which I have to be honest, totally freaked me out at first). Totally works; when it gets really cold I layer it up with my spring/summer duvet but most of the time I just put it on a low-ish setting & sleep like a baby.
I've had a couple of heated blankets before the one I have now, one of which was really narrow & wouldn't have worked for this at all & one of which was itch-y & died on me (not a great combination). The one that I recommend the most is this one from amazon. It's not the cheapest ever - ~£50 - but it's so big & comfortable I'm totally convinced it's worth it & it's about the same price as good duvet.

Silk Filled Duvet

This is a bit of an extravagance if I'm honest, although I'm not sure how I'd cope without it. You know how I mentioned my mum is a bit of a genius? She's also a bit obsessed with finding things that will make my life easier, which is both a blessing & a curse sometimes :) This is one of her finds & for all that I thought it was just her being crazy when she first mentioned it I'm really glad she found it. Weight of my duvet is a massive issue for me, I'm not sure if that is a common symptom or just something I get but it's something I really struggle with, especially when the surface level pain (pain in my skin rather than pain in muscles or bones or organs w/e) is especially bad & this silk filled duvet is less than half the weight of the duvet I had before & is slightly warmer.
As I said, the duvet is a bit of an extravagance, I have a medium weight single duvet & it cost £145 (which I'm glad I didn't know when my mum bought it cause I would have freaked out) but it really does make a massive difference & it's not at all itchy which is also amazing. Possibly a good thing to ask Father Christmas for? Or do what my brother does & tell everyone you just want money because you are saving up for something & then get this ^^

Sheets & Pillow Cases

I wish I could tell you guys what kind of fabric would not trigger your touch sensitivity but unfortunately I'm pretty sure that depends on your body. My brother has dermographia (his body makes too much histamine & he gets unbelievably itchy) & prefers jersey cotton bedding. I'm mostly okay as long as my bedding is cotton although I have silk pillowcases for a number of reasons (silk is kinder to your skin & hair, but I also used to get rashes & spots under my skin when I uses cotton pillowcases that I don't get anymore & it doesn't burn even on really bad days).

I have to include my bottom sheet, another one of my mum's finds, mostly because it saves me from throttling my mum. I have a profiling bed (one of the only house adaptations the council could help me with) & I tend to toss & turn a lot in my sleep - I did before I got sick but I'm a LOT worse now - & most bottom sheets elastic can't keep them in place under that kind of stress. I don't really care but it really bugs my mum. I'd be laying in bed, barely able to move & my mum would start fidgeting with the bottom sheet, trying to get it tucked back under the mattress. The bottom sheet I currently have seems to hold up a lot better & is very comfortable (which is always a bonus).

Sorry for mentioning my mum so much but things like this are where she tends to excel :)

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M.E. Fashion: Sleeping Beauty

M.E. Fashion: Sleeping Beauty

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casual, chronically ill, M.E., ootd, spoonie, team princess

Do you guys remember last year when I took part in the team princess M.E. awareness event organised by Queenie Sian? Well it's M.E. awareness month & I'm taking part again.

The idea behind team princess is that we M.E. sufferers have a lot in common with the fairy tale princess, many of us are trapped in our castles, sleeping for a thousand years or 'just' cursed. There isn't a cure for M.E. or even a treatment but you can help with our isolation.

Like last year I'm not having a individual team princess fundraising page but the charity I am recommending is the Smile for M.E. charity who specialise in sending happy mail to M.E. sufferers, I can't even explain how much of a difference happy mail can make.
You could also donate to Gemma who is raising money for a wheelchair she desperately needs.

I'm not sure why but May is a time of year when I get extra tired, which I guess makes it a perfect time to do an everyday fashion post. Or at least, my everyday fashion....which is pjs these days. Seriously M.E. lends itself to such a glamorous lifestyle lol.

I wanted to make this outfit even more realistic than my last sleeping beauty look which was cute but an idealised look at M.E. This is still not super realistic, I feel uncomfortable not wearing makeup when I am doing photos so I am wearing makeup. And I don't usually sleep on top of a pretty blanket with sunlight flooding in my windows & I never sleep on my back because I find that really uncomfortable....
Eh, realism is over rated lmao.

Last time I did a sleeping beauty look I talked about bedridden days, the days when even basic things are nearly impossible & all stimuli are overwhelming. I don't really have anything to add to that, it explained it pretty near perfectly so I thought that this time I could talk about 'normal' days.

When I say normal days I mean the days, like today, when I am out of bed but I'm hurting, the days when I'm struggling to do anything but doing nothing feels like a torture. Normal sounds wrong, even to me. I feel like I should call them bad days or awful days but they account for at least 70% of my life, however much I wish they didn't.

Normal days. For me these are the pea-soup-er fog kind of days, the grey days where everything is done whilst fighting through a molasses of fatigue (kind of mixing my metaphors there but you get my drift). These are the days when doing 5, 10 minutes of colouring can leave me breathless & with so much pain in my arm that I am struggling not to cry. Where hearing the postman can be so overwhelming I have to stop everything for a few minutes.
They can also be the days where the fatigue hides, telling me that I am doing really well until I suddenly realise I can hardly move from the exhaustion & I am somewhere I can't rest.

I would say I mess up most on my 'normal' days, the days when I'm too tired to remember to be careful or to properly access what energy I have left but I have too much energy to be comfortable in bed. (I'm a terrible patient, if I'm not too tired to move I HAVE to be doing things or I go insane! And not even a little thing, I have to be using at least two senses e.g. hearing & sight or sight & touch.)

Not every spoonie has these days; 25% of M.E. sufferers would consider those days a good day, a once in a blue moon kind of day that made it possible to survive. I try to remember that when I am feeling drowned by a never ending string of 'normal' & bedridden days but I guess you can only live in your skin.

I was honestly hoping to do a more upbeat M.E. post to counterbalance this - & I will hopefully get to write that soon - but my brain has been about as useful as old spaghetti recently & I barely managed to write this in time.

Some of my other M.E. posts:

The Trouble With Words

Severe M.E. Day

M.E. Awareness Day: What's in a name?

My Weirdest M.E. Symptoms

Wheelchair Fashion: Black Dress Selfie for Severe M.E. Day

Good places for accurate information:

The Hummingbird Foundation for M.E.: Some of the best & most accurate information out there
         Where to start: What is M.E.?

A Rainbow at Night: Kit is a dedicated advocate for M.E. (which is different from CFS or any other label that M.E. patients can be stuck with) & has some very good information on her blog
          Where to start: M.E. vs CFS vs SEID

Documenting M.E.: Brooke is dying from M.E. & documented her decline, as much as she could, for the past 2 years. Whilst she, understandably, hasn't posted in a while, her blog is a treasure trove of information
           Where to start: Advice for Nurses Working with Severe M.E. Patients

Extracts from Magical Medicine: How to make a disease disappear
 This is literally just a MASSIVE list of studies showing the physiological evidence for M.E. as a disease. When my Grandma's disbelief (she thinks I'm only ill because I'm too dependant on my wheelchair & if I was more positive I would get better) & the disbelief of so many undereducated, overly arrogant doctors gets to me & I find this list incredibly soothing. All of these scientists, all these decades & decades of research, know that my condition is as real as any other & just as (if not more) debilitating than any of them.
What can I say, research soothes me.
       Where to start: http://www.stonebird.co.uk/hooper.html

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Spoonie Survival Kit: Noise Cancelling Headphones

Spoonie Survival Kit: Noise Cancelling Headphones

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chronically ill, disability, Favourites, lifestyle, M.E., random, review, spoonie

I've been meaning to do this post for a very long time but I never seemed to get around to it, it always seemed massively overwhelming, but then trying to include everything that is a part of my spoonie survival kit in one post would be overwhelming, I think half of the things I own could count as part of my survival kit.

So I've decided to take this one item, or group of items at a time, & make it a series. So from now on once a fortnight or so I will talk about something from my spoonie survival kit.

So I'm starting with something that is probably the most important item in my personal survival kit, my noise cancelling headphones.

There are two kinds of noise cancelling headphones; the kind like my Bose headphones which basically 'edit out' the background noise using some fancy pants computer programme I cannot understand even a little bit & the kind like my Peltor ones which block the noise using a lot of foam & by making a vacuum almost around your ear.

You don't need both kinds of headphones, they both have good points & bad points but essentially they both block noise so there is no way you need both kinds. However since I have both kinds I thought I would do a pros & cons so you could see which kind would work best for you.

3M Peltor Optime III Ear Defenders

Pros:

• Inexpensive (£19.60 on Amazon UK as of time of writing)
• Very effective at blocking out background noise
• Surprisingly comfortable for short periods (upto 3 hours in my experience)
• The louder the noise the better they block (which means they don't leave you feeling totally isolated, when it is quieter people etc are muffled not totally gone)
• You can buy replacement ear cups etc for them
• There are several sizes of ear defenders available, these ones are huge (I bought them to block out the noise of bonfire night which is AWFUL in my area) but they also come in much smaller sizes e.g. kids ear protectors

Cons:

• Can get quite tight
• Can be kind of isolating
• The ones I have are quite large & not heavy exactly but I can definitely feel them on my head & I'm certain that on touch sensitive days I'm going to hate them
• They stick out from my ears massively (seriously I look like princess leia) so there's no way I'd be able to sleep with them on
• If the ambient noise is loud enough people talking get blocked out too, quite common in shops with loud music...

Bose Quiet Comfort Acoustic Noise Cancelling Headphones

Pros:

• Extremely comfortable - seriously the most comfortable headphones ever
• You can listen to music etc through them, in fact they are more noise cancelling when you are listening to something through them
• They are very light
• They are very good at blocking out just background but not people talking etc
• You can buy them as in-ear headphones if that is something you can cope with

Cons:

• Expensive (The current version are £269.95 on Amazon UK at time of writing)
• They aren't as good as the Peltor ones at blocking out loud music in shops (I guess the db rating is lower?)
• Sudden banging noises (like card doors slamming or fireworks) cause the computer to make a popping noise a couple of seconds later, annoys me every time

I also have a pair of Edz Kidz Ear Defenders which I haven't talked about in this post, simply because I have nothing good to say about them (other than perhaps that they fold up very neatly), they are excruciating to wear & so I can't really give you any information on their performance.

Anyway, I hope this post is helpful for you & that you find the series interesting :)

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