I feel like I just ran a marathon 

9:55am I’m in bed, heart racing and body exhausted as though I’ve just collapsed over the finishing line at the end of an arduous race. 

I’ve just completed my first session with my trauma therapist since the 8th of February. I’ve phoned in for our regular session (this is a voluntary sector trauma therapy service that is delivered by means of a 50 minute weekly telephone call) most weeks in the intervening period but have been unable to utter a single word, not even so much as hello, and have felt utterly compelled to hang up. This is not a natural course of events for a chatterbox like me who is ordinarily an engaged and proactive therapy client.

Fear, even terror, and shame forced the silence, exacerbated by my having not yet established a relationship with my therapist, as I only became her client at the very end of last year. There’s much to unpick within that fear and shame. In the simplest terms, it’s fear that, after the terrible events of last year, there is now no hope of receiving any support, and shame at being who I  am, where I am. The terror is at potentially being hurt again by a ‘caring professional’ and, worst still, that if no help is possible, my fight to not only survive but to thrive could have been in vain. 

It’s taken a lot of work on my part to get to the point where I could today regain my voice. For a moment there as I wrote that I had the urge to cry hang out the flags … I did it! 

I may write some more later about the content of today’s session but my focus here is on the result of the session.

I feel glad that I was able to reconnect with my therapist today. We don’t yet have any real connection and I wish we could have talked for so much longer than 50 minutes but it was something, and it was helpful if only in as much as I could share some things and feel heard. 

I feel a renewed determination to try to finish the, to date, 75% completed pair of blog posts telling the story of the last year. In order to write about it, I must confront the events of the year and that is proving to be traumatic. 

Realistically, I’m unlikely to wotk on those posts today as I’m shattered having only slept for 90 minutes last night. I’m genuinely struggling to keep my eyes open and my brain focused. I’m looking forward to an early night. I hope to work on completing those blog posts tomorrow. 

Driven to distraction before languishing in limbo

Distraction was the order of the day yesterday. I’d slept well on Thursday night and woken feeling relatively refreshed, but I soon began to feel decidedly uneasy.

I knew that I was troubled both by having posted this the previous day and by having emailed an acquaintance to ask if she might possibly visit me and help out with a few chores. I felt increasing guilt and shame, and a rising sense of that damn fiend, terror.  

I took my digestive meds, ate some generic ‘Weetabix’ and caught up with some undemanding telly. While watching the new series of MasterChef, to keep track of who’s who, I gave contestants names such as Ms Bullock (when she smiled she reminded me of actor Sandra), Mr Citrus Chicken (his dodgy dish), Ms Berry (a dab hand at baking), Mr Rochdale and Mr Experimental. 

With terror still making its presence felt and preventing me from doing anything useful, I let myself fall asleep and napped for a couple of hours. I woke after a series of dreams, in the last of which I was having a heart attack.

Despite the anxious dreams, terror seemed to have slunk away while I slept. I ventured into the kitchen and made some Porridge Berry Bakes. They’re quick and easy to make and are a healthy way to satisfy a sweet craving. (Thanks are due to the person who shared her recipe on a Facebook group dedicated to eating well on a budget.)  

Beat two ripe bananas (mashed) with two eggs and some vanilla extract. Separately, mix two and a half cups of porridge oats with some cinnamon and one and half teaspoons of baking powder. Now mix everything together then add one and a half cups of milk (I use skimmed cow’s milk, soya, almond etc also work). Divide the mixture into greased muffin tins (or silicone if you prefer) and add your berry toppings of choice (I used blueberries, as my photos illustrate). Bake at 180 for 25-30 minutes. N.B. Choose a non-diary milk and replace the eggs with another banana for a slightly more dense but vegan-friendly cake. These are good for children’s lunch boxes, or so I’m told.

Porridge Berry Bakes ready for the oven
Porridge Berry Bakes ready to eat

More MasterChef came later and the appearance of Ms Pastry, Ms Cabin Crew, Ms Muddle, Ms Sour and Mr Bland among others. I also spent time reading the memoir of a woman who took her fight for ‘the right to die’ to the High Court

I was determined that today I would work on part two of that significant post (if you’ve been keeping up then you won’t need the hyperlinks ūüėč) . I also needed to think about how on earth I might proceed from here. I’m a dyed-in-the-wool planner. I’m never without goals and plans of action, at least I wasn’t until now. After much brain-wracking and head-scratching, I felt as though I was languishing in limbo.I had no bloody clue what to do. Terror still lurked and threatened to pounce, somehow I kept it at bay. Somehow, slowly, very slowly at first, I started to write. I made two lists: What Does My Life Look Like Right Now? and How Should It Look? Alternative titles might be Existing vs Thriving or Deep Crisis vs Getting Better. I titled a third list, yet to be written, How Do I Get From One To The Other?  

Successful Scribbles

After a catch up with an online buddy and a few cups of tea, I wrote part two of that significant post, ‘Bullets 2016’, roughly in the order that they hit! From there this post began to take shape. While I was writing, an email arrived from the acquaintance I was worried about having asked for help, happily agreeing to do so. When you’ve nowhere to turn and you’re left having to ask for help from people you shouldn’t really be asking, the guilt is enormous … at least it is in my case. 

I don’t know the way out of all this, a few days before I found the strength to start blogging again I’d have felt the way out would be ‘in a box’. Now I only know that I think that writing is key.  

I’ve just re-read my post Silence Is Not Golden, for the first time since I published it. I’m surprised to find that it’s not quite so together as I felt it to be as I wrote it.Although it’s accurate and my story, it’s almost as though someone else wrote it, and that feels a little disconcerting. By contrast, as I’ve written this post, I haven’t felt as though the words were almost writing themselves nor as though writing was akin to pulling teeth. I just feel like me, writing  What that all means, goodness only knows. 

Sunshine, Sleeplessness and Soporific Solutions

I hope you’re appreciating my post titles of late, they’re jolly good, don’t you think?! ūüėĀ. 

On Friday evening I didn’t remember that my productive day would lead to a pain-filled night, courtesy of my #spoonie conditions, and so I failed to take the double dose of medication that should have ensured that I slept regardless. Consequently, I spent the entire night awake, not even the beautiful tones of Neil Nunes reading the Shipping Forecast could placate the pain. I distracted the night away by reading and making occasional writing and journaling notes.

I took my daily digestive disorder medication around 8am yesterday. Breakfast was a treat of two cranberry and sultana hot cross buns and a large mug of tea. My ‘spoonieness’, exacerbated by lack of sleep, had me feeling very nauseous, weak, unsteady on my feet and fatigued. I climbed back into bed and with pain finally easing quickly fell asleep. 

I slept for around five and a half hours until 4pm. I really dislike sleeping, even napping, during the day. It doesn’t fit with my orderly seize the day attitude. Going ‘against the grain’ is a requirement of living with chronic illness.

On waking I worried that I wouldn’t be able to sleep that night but then determined that I would. 

I did some low-level activity, made and enjoyed a tasty dinner of two vegetarian sausages, root mash (pre-prepared) and peas, while silently rejoicing that this week I’d had the means to organise, fund and receive a supermarket grocery delivery. I emptied the dishwasher and washed some glass jars that I’d soaked for a time. 

Later I did some writing, messaged a friend via social media then watched some telly on my tablet.I’d taken a double dose of my Fibromyalgia medication and soon felt sleepy. Pain grumbled then roared in my legs. I teetered on the edge of sleep, too drowsy to be of use to man or beast, automatically manoeuvring said legs in the manner of physiotherapy exercises hoping to gently soothe my sacroiliac joint and attendant pains. Thinking about that I realise that in my prone and feeble state I’d make a easy meal for a beast, so some use then … 

At some point, soon after midnight I think, I dropped off. I woke briefly at 9am this morning, conscious but too groggy to be coherent, I quickly succumbed to sleep again. Next I woke at 1pm … really 2, since of course the clocks leapt forward overnight. Praise be for my automatically updating mobile phone and tablet computer. With a fancy for the horological, I’ve more than a few clocks to alter. 

I caught my heart just before it sank at the realisation of another day half slept away. No matter, we’ve got this, I told it, or at least I encouraged myself with a general sense of that.

Blogging and a bath are the priorities of the remains of the day; insistent period pain and associated digestive consequences an unexpected companion. 

That significant post that I mentioned the other day really needs to be written today as it’s a vital part of the process of trying to finally secure support, that process shifts up a gear tomorrow with a visit from my advocate. 

It’s been a weekend of sunshine where I live: all clear blue skies and brightness. I’ve witnessed it fleetingly through my kitchen window. I ache to be out there, on a sunlit and ‘spring-embracing’ walk, but I shroud that desire and, to cope, focus instead on my alternative sunshine. I have food, I have some contact with friends, I’ve slept, I’ve been reading, I’m cleaner, I’M WRITING AGAIN, a vital meeting is set to take place tomorrow, I think there may be hope; there may not be enough hope. I’ll concentrate on the first part, leaving the latter part of that sentence – oh God, how it feels like a sentence to be served –  to languish in the fog

Dear Reader, I wish  you some sunshine of your own. 


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 … ūüôā .

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.

 

 

Operation Fight Back: Day 11

Today I’m again finding myself with not enough time to blog more than briefly which is a bit of a nuisance given that it’s an important part of my self care routine. That said I am OK, nothing that better sleep, giving me a few more hours in the day, wouldn’t fix just now. Today I am busy again – this is one busy week – but it’s filled with things that are good for me. There are good things next week too but I plan to make that week overall a little less frenetic than this one!

Today’s treadmill stats:

12mins 38 – 0.72 distance and 65.6 cals – I upped the speed of the tread another notch today and I also ran slightly faster overall. I’m especially pleased with that given that I had another rotten night, waking frequently and having horrible nightmares.

Today’s further aims:

  • Out again – this time to run a few errands and go to work at my voluntary post
  • Take out the bins (this job is rather rumbling on and I’m determined to do it today!)
  • Post important letter (it’s finally written and ready to post ūüôā )
  • Make a couple of important phone calls if I can squeeze them in without making myself late for work