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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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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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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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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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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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Last Week

My week in pictures.

  • A flower amongst the over grown pot plants.
  • A train ride
  •  ME Management Group
  • Cuddles with pets
  • Living in pyjamas.

The pictures disguise the difficulty of the week, but show how my pets are such an important part of living with chronic illnesses.  I don’t know where I’d be without my regular kitty cuddles.

Karen xx

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Yoga for Pain and Anxiety – My Story

The idea to write this post was given to me by my fellow Twitter and blogging buddy, Ness who suggested it’d be a good idea to share my story of yoga and chronic illness.

Lets start at the beginning; roll back about eight or nine years. I was a member of a Virgin Active gym where the local Z-list celebrities were said to go, not that I can say I ever spotted one. Pre-illness days involved lots of running, body pump classes and the genius idea that yoga would be easy, and almost certainly relaxing. I turned up for a two hour session in a room above the pool, it was hot, humid and the mats smelt of sweat and germs. A beautiful zen-like teacher swept in and began her class by singing to us, ahhh perfect. About ten minutes later I was making a ‘basket’ with my hands and someone was pulling my legs into a headstand position. All I remember was somehow managing to drive home and making it as far as the dog’s bed in the hallway and joining him on it. I was in agony for days. For some strange reason I continued to go to those classes until I left the gym. Then I moved to Brighton, got splattered by a bicycle and life was never the same again.

In January of 2015 my wife found a deal on Groupon for a year’s membership to Yoga Download for £18. We’d been chatting about how unfit I felt and how I missed exercise and that I’d like to try yoga again. For £18 I had nothing to lose, so I signed up. The selection of classes on the website was amazing, and I went in hard. 45 minute classes every evening at advanced beginner, because obviously I knew what I was doing from my previous yoga experience, right?!

I now know I should have only practiced the very basic classes and moved into more restorative poses such as child’s pose for the asanas I couldn’t, or shouldn’t, have attempted. My body was sore and I was feeling more tired than ever, yet I had an immense feeling of wellbeing. Despite the classes I attempted being too hard for me the poses and focus on breath had actually done me some good.

At the time I was struggling with my anxiety. After a few years of being stable and knowing where I stood with it, it reared it’s ugly head and as threatening to make my life a complete misery once again. It wasn’t possible to just remove the stresses in my life as one very unhelpful GP suggested, but I inadvertently found that yoga really helped me. The focus on slow, deep breaths, as simply as it may sound, was just what I needed as a chronically worried, anxious, stressed out girl. Yoga Download also has meditations available so I decided to try out a yoga nidra practice.

I’ll be honest, having dabbled in meditation before I was dubious as I really didn’t seem to be able to get the hang of it, but I needed support with my anxiety so I decided to give it a go. As soon as the recording began the soothing voice of the very lovely yoga teacher Celest Pereira had me zoned out and dozing off well before the 25 minute session was up. I still use this recording on a regular basis as it is everything I need to calm me down. From the relaxing body scan, to the counting of breathing and focusing on certain sounds in the environment around me, it really is just perfect. I strongly recommend checking out her website and Youtube channel, while lots of the videos are for the more advanced yogi, she doesn’t forget about us beginners and her videos are just so positive and upbeat you come away feeling pretty damn great!

Anyway, back to yoga. In addition to Yoga Download I started attending classes at my local studio, a five minute walk away. One or two classes a week was such a lovely get away from reality. I explained to the teachers my health problems and they were always so supportive, gathering blankets, bolsters and cushions to support my practice. Ultimately, I couldn’t afford to keep paying for classes, and in the end my health got so bad last year I stopped practicing. Whilst I was gaining physical strength, muscles were reappearing and mentally I felt much better, my body was crying out for relief, a rest and just to relax in some gentle poses instead. Overdoing yoga didn’t cause the downward spiral of my health, but the way I was forcing my body to practice for an hour or two at a time really wasn’t helping.

Fast forward to 2016, I have practiced yoga 5 times per week for the last two weeks. Doesn’t sound like much does it? Well for me it’s one heck of an achievement. I’m going through a pretty tough flare up at the moment but have discovered a more suitable website with lots of very short beginner classes, some less than ten minutes long. Movement For Modern Life seems to be well suited to my abilities. The longest class I have completed is fifteen minutes and the shortest is four. Bedtime yoga has sent me into a deep slumber for the first time in months, meditation classes have calmed me down on painful days and the overall sense of wellbeing it’s given me is such a wonderful feeling to have.

A five minute class is an achievement, I learnt to recognise that the hard way. Five minutes of yoga can leave you feeling chilled out and wonderful if you let it. Don’t push your body, when it’s ready to move forward it’ll let you know, but in the meantime keep it simple, your body will thank you for it in the long run.

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.

 

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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