Uncategorized

Overdoing It

Chronic illness is a funny old thing (not as in haha funny, as I’m sure you’ll understand if you’re reading this!). Sometimes you can do nothing and feel absolutely awful as if you’ve run a marathon then had the remainder of life sucked out of you by a Dementor, Harry Potter style. Other times you have the luxury of doing a little bit more than usual and feeling ok, no post extertional malaise days later, you just keep on plodding along. And then there is actually overdoing it and your mind and body punishing you for it as if to make sure you never leave the house again.

Last week I worked a couple of extra hours, had to get to the vet with my kitty cat (old lady check and essential vaccines) and like an idiot decided to book a ticket to the (very) local book discussion at a book store to see my favourite writer, horticulturist, and all round awesome woman.

Extra hours worked, no more than two I might add, lifts to and from work all week by my wonderful team of colleagues and friends I was doing ok-ish. Getting to the vets with my wife which is five minutes away wasn’t too troublesome. But as we were sitting in there waiting for the nurse to find the kitty blood pressure cuff (by the way the cutest thing in history – see here), that feeling came over me, as if someone had pulled the plug out and I needed to lie down immediately. I couldn’t string a sentence together, support my own body weight – thank goodness for the kind nurse who brought in chairs – or feel like I was going to be able to keep my eyes open. When that feeling hits I feel like I could collapse at any given minute, something which thankfully has only happened once and luckily I made it to my sofa in time. As soon as we made it home my wife helped me put my pjs on and I made it to bed, tramadol, a bottle of water and a very upset kitty cat for company. I slept solidly for three hours.

As the week went on I became more and more anxious. My generalised anxiety disorder (GAD) has no known trigger but tiredness makes it so much worse. I couldn’t face the book talk, could I. At the last minute I awoke from a nap just in time to slowly get ready and get the bus which thank god is only five stops and door to door. Disability pass in hand I bagged a front seat and the driver waited until my backside had hit the itchy nylon cushion. Alys Fowler is a true hero of mine, she inspired me to garden when I was housebound for almost three months with the onset of GAD, got me obsessed with growing my own fruit, vegetables and cut flowers, study floristry and she writes an awesome book. I got the lift to the third floor, folded up Little Johnny and made it just in time. For that short period of time I forgot about being ill in the intimate setting of the small discussion and enjoyed myself more than I have in a while. Everyone I told bar my parents said I need to get out more and am too young to watch a horticulturist impart her life wisdom in my spare time, but I’m so glad I braved it and made it. My hair may have been a disaster, make up smeared around my eyes post nap, but I didn’t care, and neither did Alys when I had the opportunity to chat with her.

dsc_0043.jpg

DSC_0044

Next comes the weekend. A time to have luxurious lie ins, wander about the local area (I live in Brighton’s iconic area of coloured terraced houses and steep streets), eat great food and meet friends. Er no! My so called lie in woke me at 3am Saturday morning so dizzy I had to hold onto the wall when popping to the loo, lie down in stages as my head was swirling as if I’d drank one too many bottles of wine, and of course, couldn’t get back to sleep. Dizziness to this extent is reserved for times when I have seriously overdone it. I assume this means going to the vets and sitting down to watch a 45 minute book discussion. Really living it large! The dizziness intensified and waned throughout the day depending on how close I was to my next nap and all hopes of cooking delicious healthy food went out the window for a takeaway. I felt as if I was floating all day, was nauseous and a strange pale shade of grey that matched the dark circles under my eyes. I fell asleep on the sofa, awoke as dawn broke and spent the next few hours waking up every half hour. Exhausted and still dizzy I gave in at 9am and made myself a cup of tea. Unable to get to sleep for a nap I decided to get out my notebook/laptop and write this blog.

Tomorrow the cycle begins again, my alarm will go off and my incredibly boring, sedate, yet exhausting routine starts all over again…

Advertisements
Uncategorized

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.

IMG_2607

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…

20170110_235055

 

 

Photos 1 and 2 – Psychologies Magazine

 

 

 

 

Uncategorized

168 Hours of Chronic Life

20170110_235055

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.

Uncategorized

Today is the perfect day for…

…heading out in the sunshine. Off to the beach, or to the park, maybe a trip to the local shops. Ah, a perfect British summers day.

IMG_0280

Perhaps not. I have to go to work tomorrow, and I went to the shops yesterday evening, and I worked all last week. So today will consists of reading, resting, snoozing, and maybe an episode or three of Bones.

IMAG2427

But I still managed to get my fifteen minutes of vitamin D rays in the courtyard with the small plump furry one.

I marveled at my poor neglected plants which have somehow managed to flower.

And then I headed inside for a sit down, with a cup of ginger tea and a magazine.

IMAG2425

Days like today may not be what they were a few years ago, but I’m thankful for the sunshine, the beautiful flowers, my furry friend and endless cups of tea.

Karen xx