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It’s ME and Fibromyalgia Awareness Week

Every week, every day in fact seems to be awareness for something nowadays but this one is one that I feel is really important. Invisible illnesses often get less recognition because you can’t see what effect its having on a person. Here’s a few of my favourite blog posts and websites to help you get clued up about the illnesses I live with and how they affect my every day life.

Meg Says

Action for ME

ME Association

Once Upon A Fibro Time

Cloudy With A Chance of Pain

Fibro Blogger Directory

An of course… my blog!

If you know of any others that you think should be added to the list let me know!

Happy reading 🙂

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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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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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Organic Life

On a cold, damp poorly weekend, its good to know my kitchen is full of organic fruit and British grown apples to snack on. How colourful and delicious does this fruit bowl look! 

Never one to take much interest in organic produce I’m now a complete convert. Often too fatigued to rustle up anything too adenturous, or not wanting to waste what little energy I have standing in the kitchen, my recent discovery of Abel & Cole has been just what the doctor would order (should they ever decide to take interest in my health). With a selection of crisp apples, super sweet bananas and lemons big enough to make a drizzle cake with after a squeeze in your water or smoothie, I’m in ccomplete heaven. 

Have you ever tried a home delivery service of organic and local produce? I’d love to know what your thoughts were.

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Life With Fibromyalgia

A friend shared this post on Facebook. I don’t usually read long posts like this, or even acknowledge them, but this one really rang true to me and I felt the need to share it to raise awareness, help understanding of such a misunderstood condition, and remind my friends, both off and online, what life can really be like for me.

#Fibromyalgia took hold of my life 15 years ago it was totally unexpected, it just took hold of me and changed my life overnight, people who knew me before #Fibromyalgia know I was a hard working person who enjoyed life, #Fibromyalgia took all that away from me… Don’t judge what you cannot possibly comprehend as if someone had told me about #Fibromyalgia before I was diagnosed I too would not have been able to understand. No one is immune it’s there just waiting for the chance to control your life, all I ask is that my friends are patient and understand sometimes I can’t do normal things without paying a big price a Flare up !

1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping yesterday, but I can’t help you with house/garden work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the curtains or listen to your child scream. I really can’t stand it.

6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

11. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

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The Ups and Downs of Being ‘A Part-Timer’

People say how lucky I am to only work 26 hours per week. And I guess I am in a way, who really wants to spend 40 hours plus a week at work? Well, I’d quite like to go back to a full-time nine to five actually.

I work so few hours because I really can’t work any more right now. I do this over a four day period with a mid week break which works quite well for me, but I’m still utterly exhausted and riddled with pain after every day, especially my one eight hour day at the beginning of the week.

Working part time doesn’t allow me to spend my time off gallivanting, skipping through meadows, or reliving my raving days. I don’t come home and cook up a daily feast at 3pm every day, or take myself off shopping for something I ‘need’ such as another large pile of books (although I quite fancy doing all of those). It allows me to rest, rest, rest and take additional painkillers so I have more time to deal with the side effects, then have another rest. On Fridays I come home and sleep for the entire evening, because I just can’t function in any other way.

At weekends I’m not bursting with energy after all that rest, I’m ready for more rest. Which is really bloody boring at times might I add. I’m a bookworm, someone who loves to continually learn, I love going for walks or discovering new places (especially now I live on the coast), I’m a gardener and a baker. But I don’t do much, if any, of that, because brain fog makes it difficult to read much more than short magazine articles, and I can’t walk far because I’ll be so exhausted by the end of the road and my body hurts too much to be able to support myself with a stick or crutches. I can’t bake because I don’t have the energy to do the big clean up afterwards (I’m quite messy – think Selasi in the GBBO) and my gardening consists of keeping my lemon verbena plant alive through the winter.

Amongst all of this I’m half way through getting an Open University Degree. I’ve had to defer twice, and it’s taking me far longer than ever expected, but somehow I’m doing it. I’ll be honest, I can’t really remember a thing I’ve learnt along the way when put on the spot, but I’m getting good at answering University Challenge questions with my parents so it’s in there somewhere. I’m dreading the exam next spring, but what will be will be. If it doesn’t work out I’ll just try another module without an exam.

Then there is the financial freedom that working full time could bring. My wife currently earns considerably more than me and the is some  pressure on her to keep it that way, much to my dismay. But I’m lucky to be in a job I love and earn enough to pay my half of the bills and buy all the boring household groceries (she gets the fun tasty food and treats) and still be able to afford to treat myself to a few subscription boxes a month.

So, while working part time isn’t all doom and gloom as it means I actually get to see my wife on her incredibly unsocial shift pattern, and I get extra cuddles with kitty, it’s not all it’s cracked up to be when you work less due to health reasons.

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Pyjama days and kitty cuddles

Karen xx

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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.

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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.

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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

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I adore taking photos of beautiful flowers.

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A Blustery Afternoon on Brighton Pier

A rare afternoon out lead to a wet and windy trip to Brighton Pier.

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After filling my face in Harvester (who can resist the endless salad and filled potato skins?!) we headed to the pier for some sea air and arcade fun.

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Seagulls fighting the gusts

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Living a twenty minute walk away from the sea front would lead you to think I’d be there all the time, and if I had my own way I would be. But chronic illness doesn’t allow for that so I make the most of it when I can.

Blustery weather is one of my favourite times to visit the pier. I love the sound of the pebbles rolling in the waves, the sight of waves crashing against the sea and rocks, and dodging the crashing water splashing everything it comes within fifty feet of.

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The West Pier left in ruins in the distance
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The sound of the pebbles crashing in the waves makes me feel so content with life.
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Brighton Marina is almost invisible in the mist of the sea and rain

After an hour on the pier and emptying a two penny machine of Love Hearts for the grand total of £2, I was ready for the dark bus journey home.

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The tourists stay out longer than me

Of course, this afternoon out means it’s compulsory rest with my kitty the following day, but the pain and exhaustion was totally worth it. I had the best afternoon in what feels like forever. I can’t wait for next time!

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Listening to happy music with Trinny

Karen xx

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Achievements in 2015

2015 was a tough year in a number of ways. My health deteriorated from the get go and this prevented me from doing many of the things I had planned. I didn’t get my business started, had to defer my degree, had to give up my voluntary work with FibroAction, I didn’t make it to all of the events, shows and exhibitions I had planned and I didn’t manage to keep up all of the healthy lifestyle changes I made at the beginning of the year.

But enough with the negative! Here’s what was acheived:

  1. I went to the Fibromyalgia Conference, learnt lots and made some wonderful friends.
  2. I learnt gentle basic yoga which I hope to ease back into soon.
  3. I went to The Stationery Show, my first professional event in years, and I did it with confidence!
  4. I managed to hold down my 30 hour per week job despite my health trying to tell me I couldn’t.
  5. I created a (admittedly)  basic website for my business idea. Yep, this technophobe right here!
  6. I had the courage to step down from my voluntary role before it got the better of me and my fatigue.
  7. I finally put enough pressure on my (many) GPs and got referred to pain and fatigue clinics.
  8. I learnt to control my breathing when I’m having an anxiety attack or a particularly bad pain flare.

All of these begin with ‘I’ because I want to remember that it was me who managed to do all of this, and that’s always a positive, right?!

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The list may look a little feeble, but it was a difficult twelve months, and every tiny little thing meant something to me.

What achievements have you had in the past year? Share them with me, and others, in the comments below or over on Twitter.

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I hope last year was successful for you and one to remember, and I hope that this year is brimming with achievements, happiness, good health and positivity.

Karen xx

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Ambitions and Chronic Illness

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Like any other 29 year old I have hopes, dreams and expectations of what my life should be like. Most of these ideas and expectations have come about since I became ill four years ago. Until then I was just plodding along with life. I left school before my sixteenth birthday and have mainly worked in admin roles which left plenty of time, and just enough money, for fun; shopping, baking, gardening and evenings out.

Chronic illness means I now spend most of my time at home with more time than ever to think about what I really want my future to hold. I started an Open University degree in politics, started this blog, and realised I’d like to run my own little business.

I’ve always been a stationery addict. I blame my mom and her pencil collection! After much thought, chewing the ears of my wife, friends and family, I decided I wanted to try and start and online stationery business, with a stall a few weekends at my local market in Brighton too. This would fit around my day job and maybe bring in a little extra income in addition to my part time wages.  The hope in the long run was that in a few years maybe I’d be able to reduce my working hours and be able to work from home, giving me a little more flexibility with my illness. If I was too sore to get dressed, then I could work in my pyjamas. If I’d had a bad night, I could pack orders later on in the day. No set nine to five and no travelling would make my life much less exhausting.

But there have been many hurdles. This year my health has worsened, and trying to plan and set a business up, live with chronic fatigue and pain and work a thirty hour week is completely impossible. Throw my degree into the mix. No way was this going to work.  Attending tutorials, trade shows, conferences and networking events was completely draining. I’ve had to take the tough decision to defer my studies for a year and put the business trinnys.co.uk on a back burner.

In one way I feel lucky to have had the time to realise what I really want to do with my life and notice that opportunities for people like me really are out there. If I hadn’t become ill, would I have realised what I wanted to do, or would I have just continued plodding along nine to five in a dead end job that I hated? I need to stop agonising over the potential future I may have lost through illness and focus on the present. For me that means spending the next few months learning to manage my illness as well as possible. This will involve routines, addressing sleeping problems, rest breaks and most importantly I feel, pacing. Hopefully I’ll be able to merge my studies into my routine next autumn and maybe one day, my little business too.