Treadmill Tales #1 and #2 

Two days down,  two days under my belt.

See yesterday’s post ‘Treadmill Tales: The Return’ for my plan of action. 

If you’re here for UBER stats you might be disappointed, I’m recovering from serious illness and have ongoing chronic conditions which mean I’ve got to start out really S-L-O-W-L-Y. 

Yesterday’s ‘five’ felt like it went on for longer than that (!) but I still felt the thrill of being on the treadmill and remembered how good it felt to run. I swallowed my frustration and walked as planned. I wasn’t paying huge attention but think my pace was 2.5 miles per hour.

I got on the treadmill just after 7 this evening, to my surprise really after a long, productive and active day. The ‘five’ flew by, I enjoyed it and felt I could’ve gone on for longer.my speed was 3.1 miles and I covered a wee quarter of a mile! 

Now I’ve had dinner and finally ‘flopped’ … all I want to do is sleep! 

Heart x 

Treadmill Tales: The Return

Tales from my treadmill were once a regular feature on this blog. I charted my journey from ‘last person on Earth to consider taking up running’ to the person who not only purchased REAL running shoes from a PROPER specialist store but also purchased and proudly displayed this sign.

I got to  the stage where I could not only run for a bus, I could run a mile on my treadmill and did so five or six days a week. I could also run up the stairs to my second floor flat when I moved in here a little under three years ago.

I have a treadmill (running machine) at home. I used to have an exercise bike but switched to a treadmill when I found my bike too uncomfortable to use after my Fibromyalgia diagnosis. Long time readers of my blog may remember my deciding that, in my early forties and having just left my marriage, I wanted to take up running … and teach myself to knit … as you do.

I’m not at all ‘sporty’. I love walking and used to do it semi seriously, walking in Snowdonia and the Lake District among other places, anywhere from three to 12 miles a time. With Fibromyalgia, exercise can be a difficult undertaking; pacing is vital and any activity must be built up slowly in small increments. If you remember my drive and Tigger instincts, you’ll know that this does not come naturally to me. I’m ambitious and I’m competitive too, especially with myself. I started off walking for a few minutes at a time built up through longer and faster walks to a slow jog and then a moderate jog, until finally I could moderately jog a slow-ish mile, and did so five or six times a week.

For much of the first half of this year I couldn’t walk up the stairs to my flat, let alone run up them. With an eating disorder, Post Traumatic Stress Disorder, Depression and severe isolation and loneliness having led to serious weight gain and a complete loss of fitness and stamina, I now face an uphill climb. It is daunting. I am being very positive and very Tigger about it, but this blog is the place where I can tell it like it is and I need to acknowledge that I am concerned in spite of my enthusiasm and determination. I know what it took to lose five stones (a hangover from my first ‘run in’ with Binge Eating Disorder), and I had some support then. Now it’s just me and I am much less well physically now than I was then.

So anyway, here’s the plan – starting today:

  • Walking at a gentle pace for FIVE MINUTES each day for the next FIVE DAYS
  • Day off
  • Walking at a gentle pace for FIVE MINUTES for ONE DAY
  • Walking at a gentle pace for SIX MINUTES for ONE DAY
  • Walking at a gentle pace for SEVEN MINUTES for ONE DAY
  • and so on … increasing by one minute each day
  • Take a day off every SIXTH day
  • and after reaching 10 minutes, continuing to increase the time spent walking by a minute each day but also beginning to increase the pace, slowly, each day thereafter.

This is undoubtedly a slower approach that I would like. I’d love to leap in and although beginning with walking would love to start pushing myself harder, and quickly. I don’t much like making concessions to my chronic illnesses but although driven, I’m not daft … at least not now after more than a decade spent battling the blessed things. I may adjust the above plan, as I go, but I promise to only ever do it sensibly 🙂 .

I’ll make a brief daily treadmill progress report post because I find that accountability helps to keep me motivated and also because a fellow blogger and I are both getting back to using our treadmills and hope to encourage each other. (Hello ‘manyofus’!)

Thanks for reading – as ever comments welcome.

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

 

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?!