Enforced rest vs chill out time

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it. 

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound like an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun. 

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and blurred vision –  all part and parcel of my ‘spoonie-ness’ – and having to lie still to keep some horrible symptoms under some control. 

Screen/online time offers good distraction and company but can also exacerbate symptoms so I have to try to find some sort of balance. Lying down in a darkened room with no distractions or contact would help my body but would drive my mind insane. My mental health thrives on action and productivity. I have to somehow come up with a kind of happy medium. 

I’ve still got to do some things like eat and wotnot but that’s anxiety provoking because I don’t know how much attempting to do those things will exacerbate my symptoms. Sometimes I’ll be afraid to try, sometimes I’ll plough on regardless – sometimes I’ll get away with that, sometimes I’ll pay a heavy price. 

That all sounds so negative which makes it very difficult for me to say, but if I try to hide from or ‘sugar-coat’ the realities of chronic illness then how are people going to gain a better understanding? 

I am still … mostly … smiling :). My mood hasn’t plummeted as can happen when the body is struggling so much. I have hope that a better day is around the corner. To be honest, although I know it’s a possibility, I don’t think about the prospect that one is not as that would sure as heck make it more difficult to cope. 

Back into standby mode for me then and managing to do what I can in this ‘spoon drought’. 

Thanks for reading. Comments welcome as ever. 

Heart x 

A new group … or Day 5 of The Rest of My Life

Today has been particularly challenging. I’ve been reeling from big news that I received yesterday. It’s triggered the pain of loss and exacerbated intense feelings of loneliness.

I woke very early this morning – sometime around six o’clock. Realising that I wasn’t about to get back to sleep easily, I set about being productive and wrote a blog post. Still the difficult feelings persisted although I continued to be productive but carefully pace myself, and also took time to relax. Around lunchtime, feeling worse, I took myself off to bed, in the hope that a nap might help. Sometimes it’s the only option to try to halt a complete mood crash and descent into crisis, when no support is available. I slept peaceable enough and woke around 3:30pm, at first slightly disorientated. My mood was still flat.

I knew what I must do and that is be productive again. I set the dishwasher going, refilled my water jug, took some painkillers, tweeted the link to my earlier blog post, brushed and straightened my hair and put on some make up before sitting down at my desk to write this post and send a couple of important emails.

I’m due to go out in a little over an hour. I plan to try out a local craft group. It’s held a short walk from my place, lasts just 90mins and there’s free tea and cake! I am so isolated and the more I can engage, #spoons permitting, the better. I am anxious about going along. My comfort zone is to be on top form in the company of others, which, in my situation, is quite frankly exhausting. The aim this evening is just to get there and try not to put myself under pressure to perform. The aim is to make that effort but not strain myself. After all, this is supposed to be about getting fun and engagement into my life!

Wish me luck!

 

Sound Asleep Secrets

Latest newswire: Mangled earphones are a thing of the past!

I heard mention of a ‘sound pillow’ on last week’s episode of the BBC2 TV series Trust Me I’m a Doctor. Instead of looking puzzled, as is often the way, I thought to myself … ooh, I’ve got one of those! I recovered it from the bottom of my wardrobe where I’d put it for safe keeping until I had time to try it out. I’d received it as a gift more than a year ago, but at the time my head was too full and life too frantic for me to have given it more than a cursory glance. Within five minutes yesterday I had it up, running and tested. I hadn’t realised it would be so easy.

If you follow me on Twitter (@heartsetonlivin) you might have seen me bemoaning the fact that I’d mangled not one but two pairs of earphones by listening to audio books in bed. I find it so soothing that I’m lulled to sleep. I then crush an earphone by accidentally sleeping on it! In a matter of weeks I’ve managed to ruin one set in its entirety and had been limping on in mono with Exhibit A …

mangledearphones
Exhibit A: One mangled earphone

My woes prompted sympathy … and some good-natured teasing … from Twitter pals.

LongJohnHill mangled earphones graphic

So, what is a sound pillow and would I buy one?
It’s a pillow with a speaker inside it, and a cable on the side to be plugged into a smartphone, tablet or mp3 player. I have this one. I think it was purchased using an Internet deal and so may be available elsewhere for less than the advertised price.

Set up is a doddle, just plug and go. I use mine with my Samsung Galaxy Tab 2 tablet, because that’s what I happen to have. I have audio books and my favourite sleep meditation loaded on to it, and I’m also able to listen to the radio or music via wifi.

Sleep can be a challenge if you’re a #spoonie. Pain, anxiety, depression can all take their toll, and that’s just for starters. My recent episode of serious illness brought with it catastrophic sleep disruption. As my mood began to recover, I decided to revisit some favourite audio books, in the hope they’d help me to relax and also distract my mind from anxious rumination.

It works*, I’m pleased to say, and so does the sound pillow!  I used it last night and happily fell asleep while listening. I found I had to play the tracks more loudly than I would if using earphones, but that’s no hardship. I’m lucky enough to now have a king-size bed to myself. Largely sleeping on one side, I tuck the tablet under the pillow on the other.

Using the sound pillow felt a little odd at first, but only because I’d become used to ‘in ear sound’ that, for the most part, moved with me when I moved. I soon adjusted, and found the best pillow spots for optimum listening. Once settled, I didn’t have to faff about with earphones or worry that my remaining one would be crushed. I have both a padded pillow protector and a normal pillowcase over my sound pillow. I didn’t find the sound to be obstructed in any way. I did have to adjust to being able to hear some ambient noise, previously blocked out by earphones, but this wasn’t a great problem.

If I had the cash and hadn’t received one as a gift, I think I would be tempted to buy a sound pillow. I am a new user, so I can’t yet report on its longevity potential.

*If I’m in need of additional distraction, I will play ‘Snake’ (remember that?!) on my mobile phone. I had to abandon my smart phone last year because I was skint and I’m using a basic old phone on loan from my friend. Anxiety is no match for Harry Potter audio books, read rather marvellously by Stephen Fry, combined with a few rounds of ‘fruit gobbling Snake game play’, I can tell you!

Alas, I haven’t yet found a way to combat sudden, unplanned waking, due to medication side effects, pain, nightmares or other irritation, but I live in hope … 🙂 .

N.B I have NOT been paid for this review.
This not a sponsored blog, nor do I want it to be. There are probably similar products on the market. I have chosen to review this product because I was given one as a gift by a friend, and because I think it may appeal to readers of this blog.