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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.

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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…

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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

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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 

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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!

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Trying to take a break

I haven’t blogged in a while. I’ve had so many thoughts and ideas jumbled up in my head, I’ve wanted to, but it’s been to difficult to put it on paper. I’ve been attempting to make some dramatic changes to my life. I realise now I took on too much, wanting to do more, be more, make use of myself. But it backfired, and all got too overwhelming. I sadly had to stop working for FibroAction, which is such a shame as I loved it, but it was beginning to feel such a chore, replying to emails late in the evening through blurred eyes, yawning and a complete lack of interest. It’s a bad time to leave the charity as they are going through an exciting time that I don’t really want to miss out on, but sadly it’s a sacrifice that had to be made. What’s lovely though is that I have made friends, especially the lovely Sian who runs the FibroFlutters blog and support group.

I have also taken up regular resting, planned days in bed after a long day, or two hour naps after work so I can function and hopefully spend some coherent time with my wife in the evening.

But trying to ease up on my workload hasn’t been all that easy. I recently had booked in to a business conference at the Bafta House in London, it was something essential for my business that I didn’t want to miss. Walking past The RItz and a number of shops that probably wouldn’t let me through the door was exciting, and the Bafta House itself was quite an amazing place. There were lots of speakers including Claudia Winkleman, Jack Monroe, Trish Halpin and other Marie Claire editors along with lots of people who have started their own business from scratch. I learnt so much and was having an amazing day. Until about 2pm. I hit my wall and needed urgently to get a break and sit down, or infact get home as soon as possible and lie down. But the conference didn’t finish till 5pm, and there was lots of standing around to contend with first. I cannot tell you how I got through the last few hours as I honestly don’t know. The train journey back to Brighton was one of the most uncomfortable painful journeys ever, and I spent the night on Tramadol hoping for some relief, and the following day in bed.

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I celebrated my birthday last week and another action packed day was planned, shopping, lunch with friends, dinner, lots of fun and a movie with my wife. I woke at 8am and got home after 11pm. I felt fine until the final bus journey home as I was enjoying myself so much I refused to let fibro join in. But the next day was spent in bed and I struggled through the weekend that followed. Just sitting in the sandpit playing Cool Auntie Karen to my friend’s gorgeous little girl on the Saturday knocked me out for the rest of the weekend. But I had fun, and I have to make sacrifices in order to experience these things.

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I recently saw a pain specialist after 3 years of waiting for a referral. He was amazing, so understanding, listened to me and knew what he was talking about. He’s writing to my GP to ensure I’m kept on the right medication (my GPs are generally quite useless and tell me off for taking pain relief) and referring me to a physiotherapist who can help with gentle stretching and getting my life back on track using pacing.

I have previously tried yoga, and loved it, as a form of relaxation and stretching, but it’s just too painful, my joints can’t take the pressure. And I’ve stopped using mindfulness and meditation too. I’m not sure why, I just can’t get into it any more. I used to find it so relaxing but now I find it stressful as I feel I have to force myself to relax which just increases my anxiety and pain.

Another move we’ve taken is getting a cleaner to come to the flat once every two weeks to give a thorough clean and change the sheets. This takes a lot of pressure off me as my role of a housewife, which is a role I gave myself and feel pressured to keep up, even though I’m not expected to.

So all of the above is a rather long ramble, probably doesn’t make any sense, and is just an outlet for the jumble of things in my head at the moment. But I feel better for getting it out there sometimes. And sometimes reading other peoples blogs and Instagram accounts makes me realise I am not alone. I have made a couple of lovely fibro friends recently and sharing things with them, and being there for them too, is a really wonderful thing.

Karen xx

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My Pain Story

My pain story began when I was about 14 or 15. My wrists and thumbs were causing me agony, my joints would click out of place and lock and I had pressure points on my forearm that we incredibly painful to the touch. I was sent for physiotherapy and ultrasound treatment. It didn’t work and made it worse. They gave up. I struggled through hours of GSCEs with horrendous writing and somehow still did quite well.

My memory fades a little after that until I was 16 and an office junior. My shoulders became so painful I felt sick. They too would lock and click, I could barely lift my arms up and working at a desk made it worse. The GPs said it was psychological and sent me on my way with big pink painkillers.

A few years later I was in more agony than before, and it hurt to put pressure on my hips. The GPs decided because I was so underweight (not through choice, I ate anything in sight, including my families leftovers from dinner!) my joints weren’t supported and they were blistering. I was sent on my merry way again, this time without painkillers.

By the time I was 25 I was living in Brighton and working in the most depressing job possible. I often went into my own world on my walk home from work as an escape from the draining experience that was every day. It was North Road, I looked twice, the traffic had stopped, nothing was coming, I stepped out into the road, next thing I know I was lying on my front looking at my glasses that had been thrown down the street, and my shopping underneath a big white van. I had been hit by a high speed bicycle who had no intention of stopping at the red lights 10 meters away. The bike and it’s rider landed on top of me. The bike was bent and ruined and I was lying in the middle of the road with traffic moving around me and a huddle of wonderful strangers – off duty nurses, The British Transport Police and lots of lovely passers by. They got my glasses for me and called an ambulance. I could hear the sirens for what felt like half an hour while the ambulance was stuck in traffic.

I was the third person that day to be hit by a bicycle in Brighton and attended to by that crew. They told me it was a miracle nothing had been broken. They checked me out, told me I’d feel like I’d lost in a rugby match the next day and sent me home in a police car. There was nothing a hospital could do. The injuries came out of the next couple of days and I still have scars from the massive bruises around my pelvis. I had tyre marks down my entire leg, my elbows and knees were cut and swollen, I was in shock and I felt incredibly awful.

I assumed within a few days I’d be better. But the pain never went away. That was three and a half years ago. Now,  my pelvis cannot take any pressure at all, my shoulders are constantly in agony and as the years have passed my knees have started popping out of place, my back has given up and I am exhausted, weak and very unwell.

It took 6 months to diagnose fibromyalgia, and I realise this is quite quick in the fibro world, but that 6 months of testing and ruling out a large number of awful degenerative conditions was a scary time. In the end my rheumatologist told me as I did not have a degenerative condition, he had more important people in his waiting room to attend to and discharged me back to my GP. I’ve seen about 12 GPs since then, few of them know what to do, or really seem to care.

I finally saw an on call GP a few weeks ago who prescribed me pregabalin. While my sleep has dramatically improved, the pain has not. Another on call GP this week referred me to pain management. I’m sad it’s taken over three years for this referral, but overjoyed someone listened to me after all this time.

I have dabbled with mindfulness and meditation and recently starting practicing about 5 times a week to help me relax and cope with the pain and exhaustion. I’ve also taken up yoga which helps ease the tension in my muscles and is slowly building up my fitness again.

I used to run 5k and 10k races for Cancer Research, I was accepted into the Territorial Army, I spent hours on the running track at the gym and I walked everywhere at high speed. Now I have a bus pass and take the bus for just one or two stops.

I now volunteer for FibroAction as an admin assistant. I also work 30 hours per week and I am half way through a degree in politics with the Open University. I;ve written some of my best assignments from my bed! I can’t garden any more so I bring home fresh flowers from the market every week. I couldn’t mix cake mixture so I bought a pink mixer. I can’t always cook so I ordered in some meals. I’m slowly but surely finding ways around my illness despite it worsening.

My latest project is an online stationery shop http://www.trinnys.co.uk, and this will also feature at Brighton Open market during warmer months. This may be the key to working from home, in my fluffy pjs, cats by my side and laptop in hand. So even if it’s a bad day, I can still get to work.

So there you have it. My pain journey has probably only just begun, it’s ever changing, and I remain ever hopeful.

Karen xx

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Susannah Conway’s April Love

Through the lovely Grace Quantock’s Trailblazing Facebook page I saw a link to Susannah Conway’s April Love challenge. By signing up you receive a daily message and story of inspiration, each one from a different author.

For my challenge I’ll be taking a photo each day based on the prompts given by Susannah. It’ll help me capture what is wonderful and fabulous in my life, and help me appreciate that little things sometimes mean the most.

At the end of the month I’ll add them all to a blog so I can look back and remember my month of love and all things fabulous.

I’ll also be downloading the free books and audio visualizations to read and listen to in a quiet moment (hopefully in the spring sunshine in my local park).

Now I just need to find my camera (I put it in a safe place that fibro fog can’t remember).

Will you be joining in with April Love?

Karen xx

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How fibro has changed my diet

My diet has been through never ending changes since I became ill, the more unwell I’ve become the more it’s changed.

A lot of changes have been positive. My diet now includes lots more fruit and vegetables, I usually manage my five a day if not more and I often start the day with a delicious home made smoothie made with a selection of bananas, strawberries, raspberries, blueberries, pears and a handful of spinach thrown in for good measure. If I’m not well enough to make one I’ll try and grab an Innocent smoothie for lunch or Aldi do an even better tasting, and far cheaper, alternative. I have a Sainsburys basics blender that cost me £3.99 ten years ago that is still serving me well making smoothies to this day. I also try and add in extra vegetables where possible, into my homemade chilli, making stuffed peppers, into a pasta bake or a roast dinner.

But some changes have been for the worst, mainly because I’m not well enough to stand in the kitchen creating something from scratch for days, and often weeks on end. I slip and cut myself when just picking up a knife,and have a tendency to drop just about everything I pick up. My days have therefore sometimes become a blur of ready meals, noodles and frozen pizzas. And maybe a cheeky KFC or three. Whilst I do love a KFC (but hate the welfare of the animals they use), the selection of about three edible ready meals I can find has become boring.

I then had a light bulb moment. My grandma used to order in delicious and relatively healthy food that we’d share for dinner when she still lived on her own. So I got on the internet and hunted down Wiltshire Farm Foods and Oakhouse Foods and contacted both for a brochure. I checked out the nutritional values and it was a million time better than the ready meals from the supermarket, and the selection was amazing. Lots of vegetables and meals I haven’t been able to cook for months on end. The customer service is quite fabulous too, they are so helpful and friendly on both email and the phone, and I can easily place my order online.

The only downside I found was when one of them called me today, as lovely as the lady was she seemed quite shocked a young sounding person answered the phone and then asked if I was ordering for someone else, and then seemed even more shocked when I told her I as at work. Whilst I understand the elderly market is a huge market for these companies, lots of younger people and middle aged people are too unwell to make their own meals, and I think they are missing out on a lot of potential customers.

So my first order has been placed, two weeks of main meals (each one different) and a couple of sneaky puddings for just under £50. I’m looking forward to the variety and the ease of it all, meaning I can rest after I finish work and still eat a wholesome meal.

I also managed to get to Brighton Open Market on my way home from work today and my wife brought me a bag full of delicious fruit, including some huge lemons which I put in my water to help with detoxing.

I’ve also starting drinking herbal tea, well ginger tea to be precise. I bought some others but can’t stomach them, including a lemon and mandarin one. I’ll just wait for my lemon verbena plant to bloom so I can make my own sweet delicious lemon drinks later in the spring.

How have your diets changed since becoming ill? I’d love to hear how you’ve adapted your diet.

Karen xx

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Adventures with my walking stick

Some of you may remember meeting Little Johnny last year. He’s a pink flowery delight named by a good friend of mine, who I’m slowly learning to love, very slowly might I add.

He’s spent most of the winter collecting dust in the corner while I hobbled around, but the time came recently when I just got too ill and he had to venture out the house with me or I wouldn’t be leaving the house at all. This time he wasn’t shy, he was raring to go. He went to my friend’s amazing art exhibition (a friend called him a lovely cane!), he then went to my friends birthday party. I then had to spend the rest of the weekend in bed recovering.

Today was our biggest day yet, he went to work with me. It was a strange journey to work watching peoples reactions to me and my stick. An old man shoved me out the way so he could sit down at the bus stop, an student huffed and puffed behind me at the traffic lights when they couldn’t rush past and someone actually left their seat on the bus and moved because ‘I’m getting off in a minute’. They were still on the bus when I got off. Am I really that scary with my stick?! At least now I know how to clear a room!

On the way home it was less pleasant, a bus full of school kids and moms. No-one wanted to let me on the bus, everyone just stared intently  but no-one moved when I got on and needed to sit down. Anyone would think I have three heads (I checked, I don’t).

Maybe I’m looking into it too much, maybe no-one really noticed. But it felt that way, and I felt awkward and embarrassed. Probably less embarrassed than I would be tripping up and landing on the floor though, so I’m going to focus on the positives while I can.

Speaking of positives, another young woman joined me at the bus stop, and I got stick envy. It was lilac, a beautiful shade of lilac, and I want one!

So that’s just the beginning of the story with Johnny, I’m sure there will plenty more adventures to come, who knows, one day he might even get a friend.