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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 Best Of 2016

2016 has been a year of ups and downs. Although it’s been the toughest year so far health-wise it’s been a pretty wonderful year in so many ways. I started studying again, got myself a great new job with some good friends and my wife finally let me buy a sideboard!! I could post hundreds of photos and list even more great things that have happened this year. Here’s just a few of them, in no particular order whatsoever.

Getting to spend time with my wonderful parents, including trips to Birmingham and them staying with me in Brighton just before Christmas.

Spending quality time with good friends. From a drive through the Sussex countryside with my friend and her husband (and getting to meet her many fluffy kitties) to my bestie taking me on a trip through the Ashdown Forest to a Llama Park. Definitely the best birthday ever! Then there’s lunch with a really special friend just before Christmas.

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I felt so lucky getting to stay with our friends in their flat overlooking the sea on the Isle Of Wight in July. Quality time with my wife, two bloody great mates, and getting to see endless wildlife (and donkeys) made this one of the best trips I’ve ever had.

Of course, no review of 2016 would be complete without mentioning my trusty sidekick, Trinny the kitty. She’s the best companion and nurse a woman could wish for, even if she does spend a couple of hours every evening shouting at us. We also took on Bear the hamster this summer too. He appeared to be the hammy no-one wanted so needless to say, he soon came home with us.

My wife and I have also shared some fun times on Brighton beach and pier this year as well as other trips out including the stunning Arundel Castle, and one heck of a splurge of a shopping trip at Gunwharf Keys in Portsmouth. I’ve also spent some quality time on trains, of course, and even been on a few Route Master buses with dad in London.

And of course, there was also Autumn, my favourite time of year in all it’s colourful beauty.

I could go on, the list really does feel endless.

Happy New Year! Here’s to a fabulous 2017!

(A big thanks to my wife for buying me a pretty awesome camera for my 30th that inspired me to take so many photos. I’m a lucky lady!)

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2015 in review – My blog may be small…

…but it’s such an achievement for me, and I’m so proud of myself! Anyone wanting to give it a go should totally give it a whirl, it’s amazing the friends you make, the things you learn and the people who reach out to you.

Have a fabulous, healthy New Year, and happy blogging!!

Karen xxxx

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,500 times in 2015. If it were a cable car, it would take about 42 trips to carry that many people.

Click here to see the complete report.