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 

Getting my s*it together, as I believe is the expression, and publishing a post!

WordPress loves to remind me how many posts I’ve drafted but not published. I know this, dear WordPress, it’s not for the want of trying. Today, I decided that I would prioritise writing a complete post AND publishing it, over just about everything else.

My current situation is so complex and there are so many things happening that it’s impossible to explain it in a few lines, even though writing about it and sharing that writing is very helpful to me. Doing so takes a lot of time and even more energy, and ‘spoons’, that’s chronic illness shorthand for energy and ability to function, click the link for an easy explanation), are currently in very short supply.

Yesterday, I managed to shower and dress in order to be ready to answer the door to receive a delivery from a parcel courier. I have had to force myself to allow ‘Pharmacy Bob’ (who I’m certain is the antithesis of his more famous namesake) to see me in smelly dishevelment but fear negative judgement too much to ever make a habit of it with others. Afterwards I had to get back into bed because I was so physically depleted by chronic fatigue and pain. I longed to be productive, there were things to do, so much I wanted to do; it was a struggle to limit the impact of my lack of capacity on my mood. I managed to get a bowl of cereal and kept hunger at bay for the rest of the day with dry crackers, risking a flare up of a painful stomach issue that occurs if I get too hungry. That seems to have been triggered when struggling so much last year I went, at worst, eight days surviving on only sips of water. (I ended up in A&E some weeks later with urinary retention, a complication thereof, which is, I discovered, a medical emergency.) I didn’t sleep after my return to bed, despite having only managed a little over three hours the previous night, but I rested and by evening, had at least the capacity to watch the BBC Question Time election special and engage in some lively political ‘repartee’ on Twitter, as it aired!

I’m aware that to some people that much of this post could sound like I’m moaning, feeling sorry for myself, demonstrating narcissism, or focusing on the negative. Actually, anyone really getting to know me understands that I am relentlessly positive and also hugely enthusiastic about grabbing life by the horns and making the most of it. Call me a snowflake, but sometimes it hurts to be thought of as otherwise.

We so often shy away from hearing difficult stuff, we hyper-focus on the positive, often because we realise the difficulty or horror of something, and perhaps that a positive outcome may not be possible, and sometimes we don’t know what to do or we can’t deal with that so we shut it down, don’t really listen and we fire out the positive platitudes.

I love blog comments, tweets and interactions in general. I really do. I love hearing from you. Please just don’t tell me to be positive, if you’re tempted, even though I know that you mean well. If you want to be supportive, hear me. Tell me that you understand that I’m facing grim circumstances. Tell me that you appreciate my determination to try to keep going. Offer help if you’re able, and I appreciate capacity for this can be limited in all sorts of ways, anything from a friendly word on a postcard, a poem or a film you think I might love, or a chat to a ‘care package’ or a visit. I’m fighting the urge to delete that last line – and I’m going to leave it there however uncomfortable it makes me feel, the reasons for that are for another post.

I’d woken, yesterday, with a very red, swollen and itchy face. It’s the second time that’s happened in the space of a month, but it hadn’t ever happened prior to that. I’ve had eczema, relatively mildly, since I was child, although as a child my family didn’t recognise it as such. I was screamed at when I scratched, punished if I dared to get blood on my nightclothes or bedding, and asked if I had fleas. It’s only really been in the last few years, since I entered my forties, that I’ve begun to experience severe episodes of eczema, at first on my hands, later on other parts of my body, and then on my face, particularly around my eyes. At first I assumed that this month’s sudden flare up was eczema, only the worst to date. The skin was red, itchy, and a little scaly. The area around my eyes was also puffy and swollen. I used the usual emollient treatment for eczema but it burned and felt sore. It took several days for my skin to begin to settle and clear up. The episode that began yesterday got me thinking. Severe redness and swelling/puffiness were the main issues, the majority of the area was not itchy and it isn’t scaly. I suspect I’ve developed an allergy to a skin product that I’ve happily used for some time, and is in fact the only thing I found that actively helps to reduce the impact of my Acne Rosacea. (Yep, I’ve got that too. Apparently, chronic conditions like to party together.) I’ve only used the product twice recently, the night before the two reactions. Phooey! I would get it checked out by a doctor or a pharmacist – but getting to see either is an issue just now, one that I’m working hard to surmount – more on that, again, in another post.

My fingers are also being attacked by pompholyx, and feel as though they’re getting more raw and painful to use by the second. I also have the more usual eczema on the rest of my hands, although that flare up does, mercifully, seem to be easing. Added to that I’ve had a infected thumb for a few days, and I’ve had an extensive flare up of something – again, I think this is eczema – on my neck and chest for several days. My skin is a rebellious teenager – raging out of control.

My ‘spoon count’ is generally very low just now because a series of challenges including bereavements, divorce, low income, the emergence of Post Traumatic Stress Disorder – involving flashbacks, dissociation, nightmares, depression and suicidal feelings, and the absence of sources of support. These have left me unable to maintain the rigorous regime of self management that keep me ticking over as best as I possibly can while still living with chronic illness – that’s ongoing illness for which there is no cure – it’s not my fault I got it, it’s just something that can happen to people. I’d barely been near a doctor bar the odd routine visit until it happened to me, then suddenly my medical notes looked like War and Peace in triplicate.  Chronic illness can become acute and be life-threatening, often it’s debilitating and life-altering. It may not kill you but it can decimate your life.  My self management regime includes physiotherapy exercises (very many ‘reps’ per day), graded exercise, diet management, medication, meditation, and a lot more. Without that rigorous regime, and with added stress, difficulty, lack of available support etc, the conditions flare up and begin to rage. It’s fair to say that I’m far from at my best just now … she said in the best tradition of understatement :-D!

Today, I’ve managed to shower and dress in order to receive a further package. Beyond that I’m prioritising this blog and keeping in touch with friends online because isolation is a major issue just now that’s jeopardising my safety. More on that too in another post!

Taking a break just now to nip the loo stole another a ‘spoon’ because, as is often the case, I needed to clean it due to the, shall we say, explosive emissions associated with the condition Bile Acid Malabsorption. Sometimes I leave it a while, when just getting to the loo was challenge enough, sitting on the fear that someone somehow will want to use it in the meantime!

I have no compunction about discussing toilet ‘doings,’ pain, ‘oozings’, ‘leakages’, ‘blisterings’ and boils, despair, compulsive binges and skin picking, and urges for self destruction; I make no apology for doing so. That’s not to say that it’s easy to do. It can be really difficult because you’re often met with negative judgement and a lack of empathy. It’s not the most fun when you’re positive, enthusiastic and determined in the face of adversity, hearing that you’re lazy, boring, narcissistic, not trying hard enough or ‘milking’ the system …

I believe that education, communication and understanding of experiences outside of our own are vital to society, and speak and share accordingly.

I need to have something to eat today. I can make a bowl of porridge, but if I want to eat more than that then I will have to cook more extensively. I have the ingredients to make a veggie chilli ‘non carne’, but it will require a lot of ‘spoons’. I hope to have a phone chat with a friend later. I also hope to manage to do a load of laundry and ‘reboot’ (empty and reload) the dishwasher. I’ve yet to have a drink (Edit: I’m drinking a cup of tea as I do a final read through) and, much to my discomfort, I left my bed unmade to save a ‘spoon’, but finally I have something to publish, and another step on the road to telling my story has been made.

This has taken longer to write and waaay more ‘spoons’ than I hoped. Even telling you where I am just now, with little mention of how I got here takes an age. Arrrrgh! Admittedly, fear of people not ‘getting it’ probably does lead me to say more than I need.

Thank you for reading, I really appreciate it. I hope to continue with more frequent, shorter posts. Things are happening. I have a lot to say! x

 

Feeling normal, embracing normal …

I doubt I’m alone among survivors of abuse and people who’ve experienced mental illness in having wondered whether I’d ever feel normal again.

I think the word normal is actually of limited relevance when considering ourselves and each other. After all, what is normal? Here’s one definition:

Normal (adjective) conforming to a standard; usual, typical, or expected.

We do tend to prefer normal, particularly when it comes to people. Dealing with those whose behaviour is usual, typical or as we expect – that’s our comfort zone. The unusual, the atypical, the unexpected, can be unwelcome, even alarming.

AreYouNormalSpeechBubble

Many of us do celebrate difference and embrace diversity. At the same time, prejudice and intolerance not only exist but are rife in some situations, invariably born out of a mixture of ignorance and fear. Ignorance here not rudeness, but a lack of knowledge. The fear born out of a lack of understanding leading to a unwillingness to tolerate or accept.

Having a mental illness or other disability can see you popped straight into the box marked ‘not normal’.

TheNotNormalBox

Some of us really love putting others into boxes and have trouble thinking ‘outside the box’. If you yourself think that way, it can get a bit lonely!

The ability to pass as ‘normal’ can help you to be accepted or at least tolerated. I’m quite good at pulling off the appearance of a functioning human while actually finding life quite difficult. I’d never have guessed you were .. a depressive/anxious/sometimes struggle with social confidence/have been abused – is a familiar refrain. I’ve chosen not to wear a label around my neck declaring my impairments for all to see. I tend not to define myself in terms of them. I am not ‘a depressive’; I do have a history of living with the illness Depression. I do not want to live in the box marked depression, or any other box for that matter. I have a toe, a finger, a memory, a passion, in very many diverse boxes.

I’m tidy and organised. I love theatre, books, coffee shops and tea rooms, charity shops and second hand sales. I’m positive and enthusiastic. I was abused in childhood and beyond and the effects of that on me and my life have been profound and far-reaching. I lost a parent to suicide and I’ve survived an attempt to take my own life. I live with a number of health conditions – they are mostly invisible but have a not inconsiderable effect on my life. I don’t have children. I don’t have contact with my family. I have some issues with eating, I continue to work to overcome them. I like scarves and earrings. I love recycling and reusing. I adore words and writing! I like public speaking. I love arts and crafts. I’m driven and ambitious. I’m compassionate and sensitive. I can be very chatty.

All that, and more, is my normal. It may not be yours, but it is mine, and proudly so.

One day recently, I found myself feeling of normal mood. That’s what prompted me to write this post. You see I haven’t felt terribly happy about being in a ‘normal mood’.

I’d like to feel happy, hopeful and free to such an extent that I catch myself smiling often, even laughing, at the sheer joy of it. I felt like that for more than three days in a row last week! This was a new feeling for me. I sensed that, in the midst of my fifth decade, I am at last learning what is to feel free, even safe. I realised that I am finally beginning to thrive.

I wanted to always feel so bright and such delight, but my mood began to slide after an unexpected confrontation with a terribly traumatic period of my life. It came in the form of a psychiatrist’s report on my mental state in the period immediately following my disclosure of childhood abuse, found while organising paperwork.

I encouraged myself not to panic about the decline in mood and confidence I was experiencing; I’ve learned that doesn’t help and that, in fact, it’s likely to make things worse. I calmly and mindfully took care of myself and took steps to reach out for some additional support… slowly my mood and confidence levels rose. They didn’t again reach the heights, but settled somewhere around OK, I suppose. I was not thrilled about that.

After years of work to recover myself and my life, learning to love and accept myself and processing the trauma I experienced, I can now celebrate my own brand of normal – with all of the quirks and imperfections that entails. I can learn to live with normal, rather more mundane, mood states. I may even learn to celebrate those too. Sheer joy and jubilation is wonderful to experience, but who gets to feel like that all the time? It seems impossible that I could ever tire of such joy and freedom, having finally found it, but if I had it for always perhaps I would.

Embracing the mundane mood may seem dull but it is normal. Everyone has ups and downs in life and of mood. It isn’t normal to be so depressed that you feel you have to die, as I felt when so very ill for many months last year. Today I’m not depressed, neither I am a fountain of joy, but I am OK, and I’m coming to realise that that’s actually a pretty good state of being.

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.

 

 

Word of the Day

I think I’m about to … go kerflooey.

As a writer, I L*O*V*E words and kerflooey is my new favourite. I noticed yesterday that it was the Word of the Day on dictionary.comI immediately thought it a fantastic word for spoonies like me.

Living with chronic illness is a challenge. If you’re anything like me then you get your giggles where you can, in spite of it all. Fatigue is a component of many #spoonie lives. It’s much more than tiredness. The best way that I can describe it is that it’s as though someone has flicked my power switch to off, prompting a sudden and complete shut down in terms of energy.

off-switch

As I adjusted to life with chronic illness, I came to describe these instances as ‘hitting my wall’. eg. That’s me done, I’ve hit my wall.  It can be frustrating and debilitating to experience, but that’s not to say that we can’t use a fun word to represent it. From now on at these times I will be ‘going kerflooey’.

Kerflooey: adverb, go kerflooey

Informal. to cease functioning, especially suddenly and completely.

How about it #spoonies? Shall we start a #kerflooey hashtag?! 

THREE PARTS of my series of posts about friendships should now be here – albeit out of order – PLEASE READ THEM IN ORDER OF PART ONE, PART TWO, THEN PART THREE – FOR THEM TO MAKE SENSE :) !! .

What a palaver.

I write a huge post, one that’s very important to me. I decide to publish it in three parts for ease of reading as it’s so long. In the process of publishing I manage to lose the second part and become very stressed, having already lost sight of the importance of the rudiments of ‘pacing’ to a #spoonie like me, and pushed myself too hard today.

I started writing, I was enjoying it. The piece was going well and I really wanted the satisfaction of completing and publishing it today. I should have realised that wasn’t possible, stopped, and picked it up again another day. Instead I kept on writing … for hours, past plans to knit, plans to read, past dinner time and evening medication. I should have stopped earlier and picked up another day. Instead I pressed on, rushing and tiring, and something went wrong. I’ve had to work on even later in order to rewrite the missing section from memory to the best of ability. I’m so tired now that I’ve lost all sense and capability! But … I’ve realised that each time I think I’ve got ‘pacing’ licked, I go and do something that makes me reailse that I’m still learning. I can still get carried away, especially by my passions, and do something that’s to my detriment and risks relapse. I will learn!

x