Uncategorized

A Day With Fibro and ME (Vlog)

Whilst I will never be a filming profession, hand in my notice to my day job and become a full time YouTuber, or even create anything remotely entertaining, I have had the desire of late to create a video that shows what my typical day off is like.  And so my first video (click the link here) was born. I taught myself to edit in half an hour, spent hours trying to put cover music on it and even longer braving the set as ‘public’ button. So for those of you who are interested (don’t feel obliged) here is my first ever edited video.

It mainly shows me drinking tea, having a rest and sitting with a very protective nurse Trinny on my lap. I hope you enjoy it.

Karen x

Uncategorized

Daily Routine With Fibromyalgia and ME/CFS

My daily routine is far from what it used to be before I became unwell. I can’t do most of my hobbies now (gardening/baking/long walks/running) because they are just too painful and exhausting. I work part time, have had to give up my studies with The Open University, rarely cook a decent meal, and spend most of my time at home resting with a cup of tea, a pile of unread magazines and books (in the hope I will be able to muster up some mental energy to read them) and cups of Pukka Ginger Tea being frustrated about the pile of washing up in the kitchen and the clutter that surrounds me. So I thought I’d write out my routine for work days and days off just to put into perspective what life is really like, even though I’m only thirty (almost thirty one ahhhhh!) and look relatively well.
Work Days – Mon/Tue/Thur/Fri
7:15am: The alarm goes off, I snooze endlessly as I usually haven’t been asleep long.

7:40am: Finally drag myself out of bed, stretch, creak and crunch and stagger over to wherever my cat is sleeping for a morning cuddle. I let her out, change her water, poopie scoop her litter tray and top up her biscuits. She comes first as she is totally reliant on people to care for her. Tea, breakfast and medication, you get the idea…

8:30am: Leave the house to either get my bus right by my house which drops me outside work (its quicker to walk but that’s out the question) or get picked up by colleagues. I have a special pass for the bus that allows me to sit in the priority seats. The bus journey usually involves some funny looks from people who see my pass.

9am-3pm (5pm on Mondays): Work. By early afternoon I’m clock watching as I am struggling so much. Exhaustion set in a while ago and the pain creeps in behind it (and this is on a good day). A lot of the time I get a lift home from colleagues. Absolute life savers!

3:30pm I’m in bed having drunk a glass of water, taken tramadol and the kitty is usually sitting on me purring. Pyjama time has begun.

7pm: Out of bed (later on Mondays) and make the sort walk to the sofa. Still exhausted I’m in great need of a cup of tea. I’ll probably burn myself on the steam or spill some hot water.

8pm: Dinner time. Far later than I would like, and I definitely don’t have the energy to cook. Probably a ready meal, something out of the freezer chucked onto a tray or a tin of soup. Yep, I’ll burn myself again at some point during this short process of heating up crap food.

9:30-10pm; Shower. I leave it as late as possible as it is surprisingly hard work. Getting dry and dressed is exhausting. Take a handful of medication and more painkillers if I know I will be in (increased) pain all night.

11:30pm: Back to bed. I read, sometimes listen to meditation and hope for a good nights sleep.

1am: Still awake…. I can’t get comfortable from pain, my mind is racing but I’m too exhausted to get up. Sometimes I end up dragging myself to the sofa for a cuddle with my wife if she’s not working or getting up for an early shift.

2am: Probably still awake.

3am: Hopefully asleep. But often not.

Days Off:

No routine. I let my body do what it wants. It’ll sleep, snooze and rest, tell me it needs pain relief, when it’s peckish and make sure I leave the laundry, washing up and cleaning for another time (we really need to get our amazing cleaner back but at fortnightly visits it was still so expensive). These days involve endless cups of tea, a chance to flick through the pile of magazines, watch YouTube and stay in my pyjamas all day. I probably won’t go out and if I do, it’s been planned down to the very last details, and I’m probably terrified of the exhaustion that will come with it. These days are all about saving enough energy to work and earn a living. Sadly life is ruled by the need to pay bills and not look after my body and mind.

Picture credit: Meowingtons 

Uncategorized

Exploring The Familiar

Living in the chaotic, cramped and endlessly busy town of Brighton, I rarely get to enjoy the place I live. Tourists and annual swathes of students swamp the streets, seafront and city centre. Parks are packed with people either dancing with fire, smoking drugs, or both. Tourist attractions such as the Royal Pavilion (where I got married, the only bit of quiet time there!) have queues round the corner and are so noisy inside you really can’t get a feel for the place. I’m surprised the pier hasn’t sunk with the sheer number of people fighting for the best view to photograph hanging off the railings and the North Laine is a place where you are invisible and only worth being shoved aside. Oh, the beach. Well, don’t even attempt it on a sunny day. I could go on, but I won’t. Escaping the chaos for a day is a rare occurrence, usually only attempted when travelling with or meeting someone.  Recently I spent some time in London with dad and met my friend Stuart for coffee in Trafalgar Square. He mentioned how he often forgets how he loves being a tourist in London and I have to say I completely agree. Not only do the sights never fail to amaze me no matter how often or how many times I may see them, but I love the anonymity of it all too. Everyone lets passers by go about their day, no invisibility or shoving required, and who knows, you may end up chatting with a tourist or two (my sneezing fit and a family sightseeing from the Caribbean made for quite an amusing conversation). The coffee shops were full, but we still got seats and thoroughly enjoyed many a much needed brew.

I’ve called this post Exploring The Familiar as this is the only part of London I seem to visit with my camera in hand. I love the splendor of Buckingham Palace, the elegance and beauty of the police and military horses, the green and colourful gardens alive with buzzing insects, squirrels, ducks and birds. It’s also very easily accessible and close to Brighton. So despite a very high pollen count and many a sneezing fit that day, dad and I had a perfect day wondering through London, travelling on the Tube and even riding on Route Master Buses.

Here are some of my favourite photos of the day…

Uncategorized

Kikki.K Stationery Haul

Who doesn’t like stationery? We all do, right? Few love it as much as me. So much so that when I found out the kikki.K Birmingham Grand Central pop up store had closed I was beside myself. I’m told by my mom (a very crafty lady who was upset by the news too) that she spent some time composing the text to tell me and bringing herself to send it to over. Whilst I am starting to recover from the blow (something only tea, kitty cuddles and online stationery shopping can cure) I have discovered there is a store in Covent Garden, London, and am planning a trip to Swedish stationery heaven. In the meantime I am signed up to the mailing list and when an email with a 20% off code popped into my inbox I was on the laptop quicker than you could say ‘put the debit card away Karen’!

A few days later I came home to find this box of joy waiting for me.

IMG_3153

I promptly tidied my desk/office space to ensure that my new purchases could take pride of place. Trinny the kitty also helped, if snoozing is a form of help of course.

18527266_10155437615086907_1618109973821156472_o

So here’s a sneak peak of my order… (try not to be too jealous!).

IMG_3156

IMG_3159
As a tea lover I also love a good mug or cup and saucer. I couldn’t resist. This is a perfect size for my mom to use when she visits, I know she’ll love using it too. 
IMG_3160
Stationery!!!
IMG_3161
The cutest stickers you ever did see. Perfect for letters to friends, cards and SpooniePost.
IMG_3163
The elastic on my Meowtingtons 2017 organiser snapped as soon as January hit so this is perfect for keeping all my papers, medical letters and address labels safe and sound. 

IMG_3167IMG_3169

IMG_3164
I simply couldn’t not buy these cute little stamps, whilst they are probably aimed at someone less than a third of my age, I’m very content knowing I have these at my desk. 
IMG_3166
They were a little splodgy at first (is that a word) but I think that comes from the ink pooling in the packaging. 
IMG_3171
These are a pack of 50 creative prompt cards. Perfect for a rainy day, bad health day, or just sitting and reading. Once again, I know my mom will love these.  They are so beautifully designed and made they are a joy to sift through. 

IMG_3172IMG_3173IMG_3174

IMG_3175
These equally gorgeous quote cards also come with a stand so you can change them up as your mood desires. They also make perfect little notecards or postcards for that lucky friend or family member. 
IMG_3177
The artwork is stunning, very ‘me’. 

IMG_3178IMG_3179IMG_3181

IMG_3187
Every online (and store bought) order comes with a little notecard…
IMG_3188
…and I love the thought that goes into them. 

There you have it, one very stunning, gorgeous, cute (and all those kind of words) order. I’m a very happy customer indeed. Next stop, Covent Garden. Go ahead and Google the store, you’ll be joining the queue with me.

Karen xx

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

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!

IMG_2474IMG_2475IMG_2476IMG_2483IMG_2484IMG_2487IMG_2488IMG_2491IMG_2493IMG_2497IMG_2498IMG_2500IMG_2502IMG_2506IMG_2509IMG_2511IMG_2515IMG_2533IMG_2537IMG_2539IMG_2556IMG_2560IMG_2563IMG_2583IMG_2585IMG_2591

Uncategorized

Be Kind To Yourself

Hello lovelies

It’s been a tough few weeks, a tough 2016 in fact, health wise and stress wise. I won’t bore you all with what’s happened but it’s made a scary flare up of ME symptoms bubble over the top and pour into my life, ruining just about any plans I had. Many days have been spent completely resting as I’ve been too unwell to do much at all, plans with friends repeatedly cancelled and it’s just been me and the cat while my wife seems to work endless hours in her job as a train conductor.

IMAG2062
Trinny 

I’ve been accepted onto an NHS CFS/ME management course which takes place every second Wednesday until July. There’s only been two groups so far but already I know this is exactly what I need to sort my life out. I’ve connected and made friends with people who ‘get’ me, who understand what’s really going on when I say I’m exhausted, and the people who run the group are fantastic. The ins and outs of the group are for another blog post, when I’m feeling well enough to go into all the great stuff we’re learning and remembering, but the main point they keep drumming into us is to be kind to ourselves. And finally, this has made me listen.

I’m currently on a short break in between jobs, and ordinarily this would have made me turn into a a crazy woman, feeling I need to justify what I do with my time off, doing  something I deem to be ‘useful’. But instead I’m resting. I’m working my way through some courses by Susannah Conway and flicking back through her book as her influence really revolves around the fact it’s ok to be doing what I’m doing, it’s ok to be kind to myself.

I’m resting lots, I’m stretching and meditating with crystals in spots of sunshine that briefly pop into my basement flat, I’m trying to eat as much fruit and veg as possible and stay away from the sweets and my beloved crisps. But if I slip up, it’s ok, it happens, and tomorrow is a new day. A new day for my morning kitty cuddles, to put on my new Kalula Colour Therapy Jewellery, for my enormous breakfast mug of tea, to catch a brief ray of sunshine. It’s ok.

IMAG2092
Blue For Balance

I’m trying to take a photo or two everyday, even if I don’t leave the house, to capture my all the things that are good in my days and weeks of trying to recover. My cat obviously features in a lot of them as she’s always by my side. But there’s shots of brand new notebooks, treats that I ordered from America a few weeks ago that have started to arrive, bits and pieces I have found given to me by my wonderful grandma in the months before she passed away last autumn, endless cups of English Breakfast and Pukka Ginger Tea

I suppose this blog is something I want to be able to look back on when I’m having a bad day, a bad hour, feeling guilty for resting or not leaving the house.

So lovely readers, remember, always be kind to yourself, it’s ok.

Karen xx

IMAG1928
I adore taking photos of beautiful flowers.

Uncategorized

Artists Make The Most Interesting Friends

Meet my friend Stuart. We met when we worked for the same company three years ago at a rather boring work’s event and bonded over a love of all things peculiar; he likes lampposts, I like trains. We decided that night we were separated at birth. Despite the fact I can’t even draw stick men, Stuart and I have over the years created ‘Sinister Dinners’, a creation of evil raging meals that are out to kill, ‘Amish Pete’ which was a drawing of our friend that I sent terribly wrong. Then there was the mushroom picture. The less said about that the better! Anyway, meet Stuart:

12039147_10206071487719891_1882677010347386121_o
Prime Minister Stu.

Stuart, or Professor Mystery as he is also known, is a quite brilliant artist. His own unique style and input of lampposts in most of his work makes for some flippin’ amazing artwork.

10497391_397658873749265_3618999387295646486_o
Prof. M at work.
12032095_10153624065554621_3201787810597087025_n
Showing his work at a recent art exhibition.

When he’s not watching Doctor Who, Stuart can be found in his studio, or sat in a coffee shop, sketchbook in hand. In fact, it’s the one thing he never leaves the house without. He draws in ink ( I heard a rumour his pens cost £18 each!) and is happiest when his hands are black with ink from a long day’s drawing.

As some of your are probably aware, I’m looking to start my own stationery business. As a fellow stationery addict, Stuart has offered to design some artwork for my logos and website. Our first proper ‘meeting’ (tea drinking, discussing trains and clipboards) was last week and five minutes after getting his sketchbook out things were already taking shape.

Check out Stuart’s Facebook page to see lots more of his work here, have a read of his intriguing blog and follow him on Twitter.

Karen xx