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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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A Grand Anniversary

This week my wife and I celebrated our fifth wedding (civil partnership) anniversary in style. Our itinerary looked a little something like this:

Credit to Nat Rubins-Lawrie for quite a few of the photos, thanks old bird!

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Unboxing Boxcitement Subscription Box

My first ever Boxcitement box was definitely going to be full of surprises for me. Not knowing much about the boxes I had no idea what to expect. This month the theme was aliens and space and I really enjoyed opening the package up.

As soon as I collected my post I couldn’t wait to get inside to open up the box. I loved the tissue paper, sticker and stars, this is very ‘me’ indeed.

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Everything was carefully packaged, even wrapped up in pretty little paper bags.

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A blast from the past with flying saucer sweets…

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This handy little bag will be useful for travelling or keeping my camera safe in my bag.

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Cute little cards are always a favourite of mine and I can use these for Spoonie Post.

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The box also includes a bunting but I think I might glue these into a scrap book or journal instead.

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Hair grips are an essential for me, and I love the earrings but sadly react to anything that isn’t sterling silver.

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And finally, who doesn’t need stationery to write lists?

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I really enjoyed opening up this months box of treats and I look forward to seeing what mysteries future boxes have in store.

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Clinique Beauty Hall

Yesterday I visited Boots Brighton North Road and was treated to a spot of pampering by Lauren, one of the team. She showed me a selection of lip products and beautifully did my lipstick for me. Luckily for me, it’s currently Clinique Bonus Time in Boots at the moment so I ended up with a few extra travelsize treats which will be perfect for an upcoming night away for my fifth wedding anniversary…

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Taking Medical Leave From University

Deciding to do a part time degree, while working part time, and living with ever changing chronic illnesses has always been tough. I may never have got the best marks but I have somehow managed to complete three full years with the Open University and overall my scores were good.

The latest module started in October and was the first level three, or third year for full time universities. I cannot describe the change between second and third level, it was so much harder. But I found it so interesting having the freedom to independently study and use my research in essays. Despite being persistently behind I achieve the best scores in my university career to date. However it got harder and harder to keep up. As my anxiety greatly worsened at the beginning of the year I found my studies were only adding to the exhausting endless turmoil in my mind. I certainly don’t need help feeling exhausted, and I got to the point when I knew it wasn’t doing me any good, in fact I felt it was being detrimental to my health.

I chatted with two good friends about my thoughts to defer and take medical leave, which gives me the option to return and use the credits I have within twelve years of starting. It took a while to sit with my thoughts to know what was truly the best thing for me, and my health, both mental and physical. It was on the short walk home from a coffee shop, whilst propped up with Sticky (my latest walking stick) that I made my ‘executive decision’ (I always call important decisions executive, I think it gives them a bit more oomph!).

I called the university on Monday, a call back never came, so stressed out and pacing I called again on Tuesday and finally spoke to someone who said I wouldn’t be entitled to a penny back of the hundreds of pounds I had paid for the year. After pressing the matter more, I was told I would urgently need a letter from my GP to state it was is not in my best interests health wise to continue studying. My GP have advised this will take three weeks and will cost me £20. I have never requested a letter from my GP for any reason, not for any type of benefit, not for work, never, so I am saddened and angry I’m expected to pay yet more on top of my taxes and prescription charges.

The first days after cancelling my course and getting those dreaded emails through were hard. I had a sudden realisation at work that I was no longer a student and that it is probably for the longer term, if not for good. But as the days have gone on I feel a great sense of relief, a huge weight feels as if it has been lifted off my shoulders. I am free to use what little spare time I have doing what I love; reading, taking photos, spending time with family and friends. And most of all I don’t have to feel guilty for napping, for sleeping, or for taking entire days in bed with cups of tea, my cats and a steady supply of painkillers because that’s what my body needs.

So I’m not a student any more, and I may never graduate. And that’s ok. Because I come first, education will always be there, and I have already achieved so much despite all the things set against me. So if you don’t mind I’m off to stick my head in a magazine and have another cup of tea.

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Seaford In Spring

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Escaping Brighton over the viaduct.
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Train views.
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The bluest sky of 2017.

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Twitching (bird watching).

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Very happy to be out of Brighton.
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The colour of this water looks like anywhere but the English Channel.

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Secret beaches beyond the rocks

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A break in the throngs of dog walkers.

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Jornaling on the beach.
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Back to Brighton, for now…
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Spring At Home

Spring is such a beautiful time of year, it’s a close second the array of bronzed colours Autumn brings.

If you’re a regular reader of my blog you’ll know that I don’t often get out an awful lot, and I certainly don’t have a garden to admire from the dark basement flat that is my home.

The winter had left me feeling rather down in the dumps and generally fed up of the four dark damp walls of my expensive Brighton rental home. With no grass verges outside, few trees and not a sparrow or starling to be heard twenty minutes inland from the sea, I was desperately craving some greenery and colour at home. But with the lack of sunlight I have always been convinced that no plant could survive here, just as I appeared to be struggling to.

Then I read a magazine article about how good it is for your mental health to fill your home with plants. I am lucky in that I have huge Victorian windowsills on the two windows in my flat so I decided to hot foot it (get the bus) up one of the steepest hills in Brighton to my (very) local garden centre.

I’m positive that once inside my wife despaired of me, I was thoroughly excited by the greenery an houseplant options that surrounded me and she promptly abandoned me for the book section! Cautious of the poor light I finally came home with a couple of plants, a cacti pot and some pretty pots for them.

A few weeks on, they are alive and well so after a doctor appointment we went to the local florist at our market who always have a lovely selection of plants. Having read aloe vera plants are good for aiding sleep and need little light, this insomniac got her hands on the biggest one there for the bedroom windowsill along with a beautiful red edged grass of which I’ve not a clue what it is.

Finally, I needed some floral colour, so a trip to Marks and Spencers gave me the opportunity to be treated by my wife to a couple of lovely bunches of flowers and daffodils that cost just 25p because one flower had started to open, bargain!

Having been a keen gardener back in my home town of Birmingham, and even volunteering for a Jacobean walled garden, this green fingered girl (ok, woman)  is loving chatting to and watering her plants, I forgot how much I missed it. I’ll certainly be getting a bunch of flowers every week too.

Here is a small snapshot of some of the colour that is currently filling my home. I hope you like it as much as I do!

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‘Normal’ Poorly With Fibro/ME

I might be used to it by now, but every day is probably like living with a cold/flu without the cough or snotty nose. Aches, pains, fevers and fatigue is just a part of every day life, and just because I’m used to it doesn’t mean it’s any easier after a few years.

Every year the dreaded cold and flu season creeps upon me where I shrink away from every person on the bus who sniffs and hold my breath in the lift when someone coughs. It’s the time of years I rattle with supplements and alcohol hand gel becomes my best friend. Despite having a compromised immune system, I think I’m relatively good at avoiding the lurgy. But when it hits, it comes down like a ton of bricks, casting  veil of fatigue like nothing before over me, increasing pain five fold, the germs and ‘usual cold’ symptoms linger on and on and on. Well, if I’m going to be ill I may as well do it properly!

The virus I currently have couldn’t have picked a worse time. I’m about to have six days off work as holiday, my longest break in well over a year, which I’d set aside for studying and a day trip to see a friend. First came the swollen glands, then the sore throat and painful chest all washed down with complete exhaustion. Then I felt better for a day. Then it came back, and along with a blocked, runny nose came dizziness, light-headedness and a feeling of surrealism, altered vision and of course, the lucky bonus of increase fibro and ME symptoms. This resulted in me almost collapsing at work and having to be helped to the work car to be brought home. Not before I’d burst into tears in the toilets first because I was so scared. The funny turns lasted into the next day. I had to be dressed/undressed by my partner and dried off after a shower. Not your average cold you’d think. But it probably is, most people would feel awful for a few days, need a couple of days resting up with soup and hot drinks then be back with a spring in their step.

Living with symptoms and fibromyalgia and ME on a daily basis is tough and tests the willpower of even the most positive of people, but when germs and bugs find their way into that mix, it ends up in a long, drawn out period of awful symptoms and fear that it will never end.

I think  writing this blog has just been an excuse for me to get things off my chest after what has been one hell of a week, and it’s definitely not over yet!