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Beautiful Birmingham

Every June around my birthday I go back to Birmingham to spend a few days with my parents, see friends and to relax. This year I was extra lucky as not only as it warm and sunny, but I managed to spend some of my birthday (which was also father’s day) with my parents. We enjoyed tea in the sunshine while laughing at old memories before I left, first class train tickets in hand (and a bag of lovely pressies from my parents and friend)

I was definitely in need of a break when the visit home came around. Although my fatigue and pain tend to be less intense in the hot weather, I have a more general ongoing feeling of exhaustion. A couple of the afternoons we all read until we fell asleep and I had glorious two hour naps. My parent’s have a beautiful garden that blooms all year round and I couldn’t resist but take lots of snaps, especially around dusk with the gorgeous sunsets. We also visited a local park to feed the ducks bird seed and meal worms where a goose stuck it’s head up my dress and pecked my camera. Luckily I escaped unharmed!

Here are some of my favourite photos of the garden and park. I know in years to come I will look back at these photos with a smile and remember all the great moments of this long, lazy weekend.

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It’s ME and Fibromyalgia Awareness Week

Every week, every day in fact seems to be awareness for something nowadays but this one is one that I feel is really important. Invisible illnesses often get less recognition because you can’t see what effect its having on a person. Here’s a few of my favourite blog posts and websites to help you get clued up about the illnesses I live with and how they affect my every day life.

Meg Says

Action for ME

ME Association

Once Upon A Fibro Time

Cloudy With A Chance of Pain

Fibro Blogger Directory

An of course… my blog!

If you know of any others that you think should be added to the list let me know!

Happy reading 🙂

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Life with Insomnia

Insomnia is something I have lived with for many years. It really started to hit when my fibromyalgia symptoms began after my accident five and a half years ago but I’ve never been a great sleeper.

As a child I always thought it was normal to go to bed and lie awake for an hour or so before dropping off. I’d frequently have nights where I’d lie awake until gone midnight, which felt so late when I was under ten as you need so much more sleep as a young child. Those days at primary school that followed felt endless, the light from the projector in class (yes I’m that old) burnt my eyes, other children would ask why my eyes were so black and the days felt endless. Days like this usually continued for a few days until my sleep somehow reset itself.

When I became unwell with fibromyalgia my sleep became very erratic. Not only would it still take an hour or so to get to sleep but I’d wake up every hour or two and struggle to get back to sleep. I’d wake up with a jump, or at the sound of the cat meowing in a different room. I’d always been a light sleeper but now the sound of my partner breathing beside me was enough to wake me up.

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I started taking medication that helped me sleep a bit better. Amitryptaline didn’t help me get to sleep as it was supposed to but it did stop me from waking up with a jump a much. This medication was changed to pregabalin a couple of years later to help treat pain but I found it had the most impact on my sleep. Again, it didn’t help me drop off but it made a big impact on the quality of sleep. Once I was asleep, the pregabalin seemed to ensure that I stayed asleep until the morning. At this point I was managing about six hours sleep a night. Not enough, but manageable.

As my health continued to deteriorated and a diagnosis of Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) was made I started to be unable to function after work without a nap. As time has gone on my work days have got shorted and the naps have got longer varying between one and a half hours and four hours as the week goes on. I have found that on days I force myself to stay awake all day and end up feeling exhausted beyond words I have an even worse night. Recently I was awake until 5am after an especially long day. I had been awake for twenty one hours. My new frame of mind is to just take sleep where I can get it as the less I nap, the less I seem to be able to sleep at night.

Over the past few months insomnia has shifted to a new level. I am frequently awake until past 3am when my alarm goes off around 7:15am. The sleep I do get is broken, light and filled with vivid dreams and troubling nightmares. On the three days a week I don’t work I try and let me body do it’s own thing and make sure I don’t plan anything for the morning of those days. This often means sleeping from around 3/4am and waking up at 10/11am. I have read this is common in ME/CFS patients as the body doesn’t produce the sleep hormone, melatonin, at the correct times.

I have been struggling to function on such little sleep despite the fact I thought I was used to getting by on just a few hours. This has lead me to try different things out to try and help. Nytol worked the first couple of times, after half an hour spent hallucinating in bed I had a decent night of sleep. But this soon wore off and now makes not an ounce of difference. Pukka Night Time tablets help me feel sleepy, too sleepy to read, and they help settle me but they don’t actually get me off to sleep. I’ve tried various night time teas with chamomile (which I hate the taste of – I’m desperate), valerian, lavender and a whole host of other things. These just make me get up more frequently to use the loo. I’ve tried night time pillow sprays to no avail. Meditations such as my favourite yoga nidra used to help, but again not any more. I’m at a loss as to what to do and think that speaking with my GP is the last resort. But I’m reluctant to start taking yet more medication, with more side effects, and adding to the list of prescriptions my body has become dependant on.

So for now, I let my body nap for as long as it wants as I know this may be the only sleep I’ll be getting for a while. I find it amazing how the body can survive and continue with such little rest. With my trusty kitty by my side, I’m off to get tucked up in bed and hopefully snooze the afternoon away…

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Photos 1 and 2 – Psychologies Magazine

 

 

 

 

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168 Hours of Chronic Life

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This blog piece is a brief outline of what I do in an average week. By brief I don’t mean I’m omitting some crazy party, long country walk or evenings with friends, I haven’t had energy for that in years. I have just left out the bits where I take medication, the headaches, struggle to get myself in and out the shower, dressed, and the awful insomnia I suffer from.  This week I haven’t had the energy to read more than a short magazine article, or even iron my clothes. Every last piece of energy I have is stored up for the important stuff like work and looking after the kitty (who provides endless cuddles throughout).  Writing this piece has made me realise just how little I actually do in my week. My week should consist of more university work at least, but it doesn’t. I wish it involved cooking yummy dinners, having tea and cake with friends in the evenings and taking pride in my home. I could go on, so here it is in all of its glory, my week with fibromyalgia and chronic fatigue/ME:

Sunday:

Leaving my wife at home with a hangover, I headed to a local cafe I’d never been to before to try and get some study time in. With a bacon sandwich, a free WiFi connection and a few cups of tea I managed to write a few hundred words of an essay and get a good start on research. Feeling pretty mentally exhausted I headed home after a couple of hours and tried not to feel guilty about my daily nap as I’d had a productive morning.

Monday:

My long day at work always worries me a little, but I had a productive one. Feeling utterly wiped out long before 5pm I slowly made my way home, and as usual, had headed straight for bed. There was no way I would be able to do anything else that evening unless I slept. Two hours later I got up, had dinner and had my daily struggle with my shower. Another night of struggling to get to sleep followed.

Tuesday:

After a few hours of broken sleep I woke feeling rough, swollen glands, a sore throat and chest. I spent the day worrying that I was getting ‘normal’ ill on top of the usual fun stuff. Feeling super poorly by the time I woke from my post work nap I spent the evening in my pyjamas (again as usual) dosed up and knocking back the vitamins in a bid to stop the inevitable.

Wednesday:

After quite a few hours of sleep (it’s always a bad sign when I actually get some shut eye) I woke late on my day off, and felt like a virus had really taken over my already tired body. After calling mom to wish her a Happy Birthday, I headed back to bed with a cop of tea and spent the day there, with no appetite, feeling weak, sore and afraid of how exhausted I felt. With no energy to cook, I  ended up eating take away for dinner, probably not the best option so I blitzed up a smoothie with fruit juice, berries, banana and natural yoghurt later in the evening. Showering was a struggle but I felt much better after a good scrub.

Thursday:

After a rough night’s sleep it was off to work, still armed with my swollen glands and dodgy chest and throat. Work is usually a good laugh but I had slightly too much fun which resulted in a funny turn and feeling like I was about to pass out. After struggling home it was straight off for my rest which found me sleeping for over three hours, long even by my standards. But I awoke in pain, struggling to swallow, my chest hurting and with a locked jaw. My jaw continued to keep locking throughout the evening and night and woke me up  with the pain. Still without he energy to cook, I finished yesterday’s take away for dinner.

Friday:

Feeling better in myself today, but in quite a lot of pain, after work I took a diversion home and was exhausted beyond words half way back. I could barely get out of my rain soaked clothes on getting home and headed straight for the usual; bed. I fell asleep with the cat on my side and woke up on my own but in awful pain, and couldn’t get back to sleep. After a long chat with my parents, an evening dosed up in front of the TV followed before I decided to write this blog.

Saturday: 

Well, I haven’t got there yet, but I’m hoping for a lie in, lots of uni work, endless cups of tea and kitty cuddles, and of course, a good nap.

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The Ups and Downs of Being ‘A Part-Timer’

People say how lucky I am to only work 26 hours per week. And I guess I am in a way, who really wants to spend 40 hours plus a week at work? Well, I’d quite like to go back to a full-time nine to five actually.

I work so few hours because I really can’t work any more right now. I do this over a four day period with a mid week break which works quite well for me, but I’m still utterly exhausted and riddled with pain after every day, especially my one eight hour day at the beginning of the week.

Working part time doesn’t allow me to spend my time off gallivanting, skipping through meadows, or reliving my raving days. I don’t come home and cook up a daily feast at 3pm every day, or take myself off shopping for something I ‘need’ such as another large pile of books (although I quite fancy doing all of those). It allows me to rest, rest, rest and take additional painkillers so I have more time to deal with the side effects, then have another rest. On Fridays I come home and sleep for the entire evening, because I just can’t function in any other way.

At weekends I’m not bursting with energy after all that rest, I’m ready for more rest. Which is really bloody boring at times might I add. I’m a bookworm, someone who loves to continually learn, I love going for walks or discovering new places (especially now I live on the coast), I’m a gardener and a baker. But I don’t do much, if any, of that, because brain fog makes it difficult to read much more than short magazine articles, and I can’t walk far because I’ll be so exhausted by the end of the road and my body hurts too much to be able to support myself with a stick or crutches. I can’t bake because I don’t have the energy to do the big clean up afterwards (I’m quite messy – think Selasi in the GBBO) and my gardening consists of keeping my lemon verbena plant alive through the winter.

Amongst all of this I’m half way through getting an Open University Degree. I’ve had to defer twice, and it’s taking me far longer than ever expected, but somehow I’m doing it. I’ll be honest, I can’t really remember a thing I’ve learnt along the way when put on the spot, but I’m getting good at answering University Challenge questions with my parents so it’s in there somewhere. I’m dreading the exam next spring, but what will be will be. If it doesn’t work out I’ll just try another module without an exam.

Then there is the financial freedom that working full time could bring. My wife currently earns considerably more than me and the is some  pressure on her to keep it that way, much to my dismay. But I’m lucky to be in a job I love and earn enough to pay my half of the bills and buy all the boring household groceries (she gets the fun tasty food and treats) and still be able to afford to treat myself to a few subscription boxes a month.

So, while working part time isn’t all doom and gloom as it means I actually get to see my wife on her incredibly unsocial shift pattern, and I get extra cuddles with kitty, it’s not all it’s cracked up to be when you work less due to health reasons.

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Pyjama days and kitty cuddles

Karen xx

Uncategorized · yoga

Yoga for Pain and Anxiety – My Story

The idea to write this post was given to me by my fellow Twitter and blogging buddy, Ness who suggested it’d be a good idea to share my story of yoga and chronic illness.

Lets start at the beginning; roll back about eight or nine years. I was a member of a Virgin Active gym where the local Z-list celebrities were said to go, not that I can say I ever spotted one. Pre-illness days involved lots of running, body pump classes and the genius idea that yoga would be easy, and almost certainly relaxing. I turned up for a two hour session in a room above the pool, it was hot, humid and the mats smelt of sweat and germs. A beautiful zen-like teacher swept in and began her class by singing to us, ahhh perfect. About ten minutes later I was making a ‘basket’ with my hands and someone was pulling my legs into a headstand position. All I remember was somehow managing to drive home and making it as far as the dog’s bed in the hallway and joining him on it. I was in agony for days. For some strange reason I continued to go to those classes until I left the gym. Then I moved to Brighton, got splattered by a bicycle and life was never the same again.

In January of 2015 my wife found a deal on Groupon for a year’s membership to Yoga Download for £18. We’d been chatting about how unfit I felt and how I missed exercise and that I’d like to try yoga again. For £18 I had nothing to lose, so I signed up. The selection of classes on the website was amazing, and I went in hard. 45 minute classes every evening at advanced beginner, because obviously I knew what I was doing from my previous yoga experience, right?!

I now know I should have only practiced the very basic classes and moved into more restorative poses such as child’s pose for the asanas I couldn’t, or shouldn’t, have attempted. My body was sore and I was feeling more tired than ever, yet I had an immense feeling of wellbeing. Despite the classes I attempted being too hard for me the poses and focus on breath had actually done me some good.

At the time I was struggling with my anxiety. After a few years of being stable and knowing where I stood with it, it reared it’s ugly head and as threatening to make my life a complete misery once again. It wasn’t possible to just remove the stresses in my life as one very unhelpful GP suggested, but I inadvertently found that yoga really helped me. The focus on slow, deep breaths, as simply as it may sound, was just what I needed as a chronically worried, anxious, stressed out girl. Yoga Download also has meditations available so I decided to try out a yoga nidra practice.

I’ll be honest, having dabbled in meditation before I was dubious as I really didn’t seem to be able to get the hang of it, but I needed support with my anxiety so I decided to give it a go. As soon as the recording began the soothing voice of the very lovely yoga teacher Celest Pereira had me zoned out and dozing off well before the 25 minute session was up. I still use this recording on a regular basis as it is everything I need to calm me down. From the relaxing body scan, to the counting of breathing and focusing on certain sounds in the environment around me, it really is just perfect. I strongly recommend checking out her website and Youtube channel, while lots of the videos are for the more advanced yogi, she doesn’t forget about us beginners and her videos are just so positive and upbeat you come away feeling pretty damn great!

Anyway, back to yoga. In addition to Yoga Download I started attending classes at my local studio, a five minute walk away. One or two classes a week was such a lovely get away from reality. I explained to the teachers my health problems and they were always so supportive, gathering blankets, bolsters and cushions to support my practice. Ultimately, I couldn’t afford to keep paying for classes, and in the end my health got so bad last year I stopped practicing. Whilst I was gaining physical strength, muscles were reappearing and mentally I felt much better, my body was crying out for relief, a rest and just to relax in some gentle poses instead. Overdoing yoga didn’t cause the downward spiral of my health, but the way I was forcing my body to practice for an hour or two at a time really wasn’t helping.

Fast forward to 2016, I have practiced yoga 5 times per week for the last two weeks. Doesn’t sound like much does it? Well for me it’s one heck of an achievement. I’m going through a pretty tough flare up at the moment but have discovered a more suitable website with lots of very short beginner classes, some less than ten minutes long. Movement For Modern Life seems to be well suited to my abilities. The longest class I have completed is fifteen minutes and the shortest is four. Bedtime yoga has sent me into a deep slumber for the first time in months, meditation classes have calmed me down on painful days and the overall sense of wellbeing it’s given me is such a wonderful feeling to have.

A five minute class is an achievement, I learnt to recognise that the hard way. Five minutes of yoga can leave you feeling chilled out and wonderful if you let it. Don’t push your body, when it’s ready to move forward it’ll let you know, but in the meantime keep it simple, your body will thank you for it in the long run.

Karen xx