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Rediscovering My Spiritual Self

I started off 2018 on a real high, determined to make it the best year yet, make it ‘the year’ as I kept telling everyone until they were sick of talking to me. Things have certainly come my way to test that theory but I keep on bouncing back, and for that I am endlessly proud of myself. I have worked so hard on myself this year and I’m really starting to see the benefits. It’s a practice, an endless process, and it really is quite wonderful.

Last year I started working with Jody Shield and her team and became a founding member of TribeTonic, an amazing guidance, healing and spiritual support system of mentoring, live sessions and endless support. The tag line is ‘get your spiritual six pack’ and I can honestly say, with a lot of help from Jody and Jeanine (Gasser) I am well on my way there. This year I have put a real focus on healing sessions, meditations and being open to what the Universe has in store for me. It’s helped me see the positive in every situation by reminding myself I’ve got through things before, and will do so again. As Jody always says, you are not your mind, and always be in your ‘yes’.

It’s interesting how I’ve recently realised that as a child I was actually quite spiritual, but as a teenager, trying to be cool (not that I ever got anywhere near) I dropped it all in favour of things slightly more acceptable for a kid in the late 90’s. From about the age of ten onwards I developed a strong interest in crystal healing, reiki and aromatherapy. I had my own little collection of stones and oils and an array of books my mom’s sister passed on to me. I had meditation cassette tapes and often listened to them on a Sunday afternoon before the school night blues set in. Then life got in the way and it all gradually fizzled out.

As the years have gone on I’ve continued to feel a spiritual calling but I wasn’t sure what it was, I exploring religion a little but realised that while I do have certain beliefs, it’s not quite the right fit for me. Then I read Jen Sincero’s You Are A Badass. I’d always been a little put off by this book as the first page mentions God, The Universe, Mother Earth etc etc but get beyond that first page and the book opens you up to a whole new world. One you are already living in but didn’t quite notice. After seeing her speak at Future Shapers Live I knew it was time to get over my awkward embarrassed phase of feeling but not being spiritual and just get on with it. I’ve never really bothered what people think about my eccentric ways before and I decided it wasn’t time to start now.

I came across Jody Shield’s book, Life Tonic in a magazine and got my hands on a copy. I struggled a little with reading it (chronic fatigue and brain fog will do that) so I stepped out of my comfort zone a little and listened to the audio book. Then when the Tribe came along it just felt right, so I signed right up. And I have to say it’s one of the best things I’ve done in a long time.

Mentoring from Jody and Jeanine has lead me to read/listen to a rather different selection of books than in previous years. My new favourite genre of books are spiritual self help. I’ve recently finished Light Is The New Black by Rebecca Campbell. A beautiful selection of poems, prayer, journal prompts and insight into the spiritual world. A calming and peaceful read this is definitely one I’ll be returning to time and time again. Currently on my audible playlist is Big Magic by Elizabeth Gilbert who has the most soothing voice I’ve heard. I’m so glad I chose to listen to this on audio book as I don’t think I would have felt the same effects reading it on paper. Even if you aren’t in touch, or haven’t got, a spiritual side I’d definitely recommend both of these books as they create an escape from the chaotic non stop world we live in today.

As I’ve got back in touch with my spiritual side, rediscovering who I am, I have slowly grown my collection of crystals, guided meditations, yoga flows and breathing exercises, all of which are extremely helpful when it comes to living life with both physical and mental health issues. I also journal more regularly too.

I remember endless journalling starting around the age of nineteen when I was training to be a nurse. Each night, or morning depending on my shifts, I’d write sides and sides of A4 about my innermost feelings, journals which I still have to this day. Again, it’s something that stopped, this time around the time I became unwell at twenty three. My thoughts all just felt too overwhelming and it was easier to bottle them up and file them away as opposed to getting them on paper. I’ve since dabbled with journalling but 2018 has proven to be a year of both insight and relief by getting things down on the page. I have a beautiful hand crafted leather bound journal that I take everywhere with me and is more like my 2018 Workbook than just a journal.

As I mentioned above, discovering and working with everything the spiritual ‘you’ has to offer is a practice, it never ends, and it never fails to surprise and delight. It’s helping me cope with chronic illness, change and the stress that comes with every day life. I have a new morning routine which consists of meditation and writing before work and I try and do the same before bed. I’ll add some relaxing oils to my burner and set aside half an hour for myself, to be undisturbed, no phone calls, emails or social media, just me and everything that I am.

So don’t turn your nose up at spirituality, you just never know what you might discover, after all now is as good a time as any to try…

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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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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.

Uncategorized · yoga

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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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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My Actipatch, Chronic Illness and Me

Recently I wrote about trying an Actipatch, and how it helped a little before coming to the conclusion I need a giant one for my entire body.

I had lots of feedback from people and found out you can buy patches designed for all parts of the body. Great, I thought, that’s my hips shoulders and knees sorted. Then I saw the cost of them. It would appear it would cost well over £100 a month for me to benefit from having one on every problem area. Not practical, and that is over 10% of my monthly wage! I could indeed sacrifice my yummy treat filled diet for ripping plasters off my body every day, but life with chronic illness has to be more than that surely?

Once my seven day trial was up, the light on the patch went out and it went off to the scrapyard in the sky. A little piece of me wants to go and buy another one, or three, but it’s really not an option. Instead I am sitting here in pain, waiting for my next doctors appointment to see what zombifying hallucinogenic drug they fancy prescribing me next. Pregabalin has given me so much more energy, but it would appear after a blow out week I’m not well enough to use that energy yet.

I’m hoping to work with the lovely Grace Quantock in the coming future to learn once and for all how to deal with chronic illness, live and work with it, accept I need ten times more rest than I currently give myself, and still be me.

I also try and practice yoga at least 5 times a week followed by a short meditation (Yoga Nidra is simply amazing). So far I’m finding this really calming, and I appear to be developing teeny tiny muscles from a rather lot of downward facing dog. It also helps stretch out my hips, shoulders and chest when they get locked in a relaxing and non-painful way.

My work for Fibro Action is going really well, and I can’t wait to go to the fibro conference next month and report back as much as possible (before brain fog makes me forget it). I’m taking my lap top with me so I can get on the forum each evening and give my lovely friends and forum buddies an update. If you want to keep up to date with the conference next month, and in the meantime the lovely forum, click on the Health Unlocked link below.

And finally, plans to open a little online business and market stall are well under way.Trinny’s Stationery Store will be beautiful stationery; pens, journals and everything a chronic lovely such as ourselves could need to get them through a day in bed while their mind is racing through thoughts. Eventually I’m hoping this will also include some lovely craft work from Wendy Lawrie to brighten up your day. But this story will continue in a couple of months time.

For now, check out the below links, go chat to my fabulous friends on the forum and keep in touch.

Have beautiful weekends!

Karen xx

Important links that are a must see (at your own leisure of course!):