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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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Reflections on 2017

2017 has been a year full of ups and downs. Before I go on I will no doubt mention on numerous occasions:

Without further ado, lets get started…

January

My amazing friend Sabrina beat breast cancer then got married abroad, and I was lucky enough to be able to make it to her wedding reception for a couple of hours with the help of another friend. Definitely a highlight as I hadn’t seen her since I moved to Brighton six years previously.

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I also managed to make it to a tutorial for my Open University course at the London School of Economics – I finally felt like a real student!

February

The first two weeks of February were a washout with a nasty virus that wouldn’t leave me and more fatigued body alone. It was a long, horrible few days. A trip to see a friend in Midhurst was cancelled and I was pretty upset and blue.

On recovery I managed to meet Stuart in Preston Park where it snowed and we went on our first mysterious ‘assignment’. An utterly fantastic and hilarious afternoon.

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I finally got an appointment with a real medical professional who for once didn’t patronise me, tell me to join a gym or make me cry, I had some medication increased and was booked in a month later to see how I was doing.

March

My wife and I finally had a day out together and we went to Worthing. After hearing numerous horror stories I was pleasantly surprised at the beautiful beach, different wildlife and lovely town centre.  It was also the first day of two solid months of heartburn.

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I wasn’t well enough to make a tutorial at Kings College London, again, but did manage to look round a few old bookshops with Stuart instead.

I went on a solo mini trip to Seaford, a local town, to sit on the beach and write. Again, I was surprised at what this small seaside town had to offer in way of views and scenery. It was also a beautifully warm spring day.

I had to give up my university studies with The Open University. I obtained a letter from my doctor supporting my decision. the university kept all my money and sent a letter saying I have to recover by November or I lose it.

April

Stuart took me to his studio before we went on an ‘Industrial Assignment’. I came home to find my wife and brother in law tucked up asleep on the sofa.

The second week of April saw Nat and I celebrate our fifth anniversary and we had a lovely little treat planned. With a cat sitter booked in, we headed off for a delightful french afternoon tea at Julian Plumart, shopping for a Pandora bracelet and then on to The Grand Hotel, a stunning luxurious Victorian hotel on the seafront where we had a suite, a queen size bed and more floorspace than we knew what to do with. Oh, and a bath – all hail the bath!

May

I joined a local gym and before working out decided to get some expert advice. I found a trainer who said his mum had fibro so thought we’d be a great match. On the day of one of my first session I was very ill after a lot of overtime at work. After emailing to cancel he replied saying lying in bed won’t cure me and I should get off of my backside. I didn’t go back.

‘Assignment Carouselfie’ with Stuart. No further words are required.

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I met dad in London for a trip on a Route Master bus and took fun photos with my polaroid camera.

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We bought Suzie Smart Car. A lifelong dream come true!

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I attended Marie Clare Future Shapers in a flash London hotel. A great but utterly exhausting day, but I met another fellow Lancashire Lass living south and we spent the day hanging out together while she looked after me.

Woo, a busy month!

June

Nat and I visited the animal rescue centre Raystede. A beautiful day and nice relaxing drive through some quiet countryside.

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I was meant to attending a blogging event – Blogtacular – but wasn’t well enough to go, as usual.

The guys from work chauffeured me and Nat in a rather posh car to One Aldwych for afternoon tea, my birthday present from Nat.

July

My parents came to stay. A lovely weekend. We took them to Julian Plumart for afternoon tea.

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I stayed with my friend for a quiet, sleepy weekend in Midhurst and went to watch her perform in her local village choir. A beautiful evening.

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August

I bought Nat horse riding lessons for us both for her birthday. Note to self, don’t learn to horse ride at 31 and definitely don’t do it with chronic pain. I actually couldn’t sit down for a week. However, riding a horse over the South Downs was an incredible, if not extremely painful, experience.

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I had lunch at The Lanesborough in London following on from a work trip. A delightful, delicious experience.

Nat and I hopped in Suzie for a spontaneous trip to a small local farm. We acted like children, got lost in a maze and attacked by the most persistent wasp ever to have existed. A jolly good day in the sunshine.

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September

I met my buddies from the ME/CFS NHS group I attended last year – the first time we’ve all been well enough to meet up together. It was so amazing to see them again.

I had a brain and head scan to see what on earth is so wrong with my painful locked jaw. I must have a huge brain as it took over an hour!

October

On a way to a local cafe to meet Stuart I fell upon a book fair. Needless to say we had the most wonderful afternoon with some excellent antique finds.

November

I didn’t recover, thus lost my university fees.

I headed for a restful weekend in favourite place on earth – St Annes on the Sea. With the help of staying in a luxury guest house a two minute walk from the seafront I had a relaxing, sleepy time and saw some of the most beautiful sunsets and chatted to some wonderfully friendly people. Lancashire is definitely my spiritual home.

Nat and I stayed in a hotel on Brighton seafront a few minutes in a taxi from our home. With a mahogany four poster bed and sea views it was a lovely treat, and dinner at Prezzo was indulgent and delicious.

I started working with Jody Shield – the healer, coach and mentor and got taken under the wing of her and her amazing team.

Nat and I went to a local Christmas Craft Fair at Brighton Open Market, a stones throw from our house.

December

Mom came to stay while Nat was at a Buffy The Vampire Slayer Convention. We had a lovely festive weekend including a buffet and Christmas song evening with Stuart.

I attended both the Advent and Carol services at my local church which is a beautiful example of architecture with stained glass windows and a stunning original organ.

Christmas (early) at my parent’s house was the most festive I’ve felt in years, with gifts, decorations and Christmas dinner it was quite perfect indeed.

Nat and I also went with Stuart to a traditional night of ghost stories as told by the Victorians in the run up to Christmas.

And so I finish writing this on the 21st December, with the real Christmas day still to go. I have of course omitted most of the parts where I have felt dreadfully unwell for most of the year, and I simply couldn’t include every wonderful lunch or tea/coffee shop visit with Nat, lunch and serious selfie dates with Stuart (or Dr Mystery as I prefer to call him) and the many wonderful times with my parents or I’d never get this post finished! I have also seldom mentioned my beloved Trinny, the fluffiest, prettiest nurse around. 2017 wouldn’t have been the same without her…

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I also haven’t written about my job. I work with an amazing group of people who I am proud to call my friends and colleagues and I am being supported in my ever changing career no end. They take me to and from work to save on energy, run my errands if I am too unwell to go out and are just an awesome bunch who look after me, so a huge thank you to everyone at Consec 🙂

I am currently working on my hopes, dreams, goals, aspirations (whatever you want to call them) for 2018. But the product of that is definitely for another blog post…

So as I bid farewell to 2017 I want to take a moment to express gratitude to the friends who have checked on me when I’m ill, not got annoyed when I cancel plans for the fifth time and bought me loads of tea!

Here’s to a fabulous 2018!

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Taking Medical Leave From University

Deciding to do a part time degree, while working part time, and living with ever changing chronic illnesses has always been tough. I may never have got the best marks but I have somehow managed to complete three full years with the Open University and overall my scores were good.

The latest module started in October and was the first level three, or third year for full time universities. I cannot describe the change between second and third level, it was so much harder. But I found it so interesting having the freedom to independently study and use my research in essays. Despite being persistently behind I achieve the best scores in my university career to date. However it got harder and harder to keep up. As my anxiety greatly worsened at the beginning of the year I found my studies were only adding to the exhausting endless turmoil in my mind. I certainly don’t need help feeling exhausted, and I got to the point when I knew it wasn’t doing me any good, in fact I felt it was being detrimental to my health.

I chatted with two good friends about my thoughts to defer and take medical leave, which gives me the option to return and use the credits I have within twelve years of starting. It took a while to sit with my thoughts to know what was truly the best thing for me, and my health, both mental and physical. It was on the short walk home from a coffee shop, whilst propped up with Sticky (my latest walking stick) that I made my ‘executive decision’ (I always call important decisions executive, I think it gives them a bit more oomph!).

I called the university on Monday, a call back never came, so stressed out and pacing I called again on Tuesday and finally spoke to someone who said I wouldn’t be entitled to a penny back of the hundreds of pounds I had paid for the year. After pressing the matter more, I was told I would urgently need a letter from my GP to state it was is not in my best interests health wise to continue studying. My GP have advised this will take three weeks and will cost me £20. I have never requested a letter from my GP for any reason, not for any type of benefit, not for work, never, so I am saddened and angry I’m expected to pay yet more on top of my taxes and prescription charges.

The first days after cancelling my course and getting those dreaded emails through were hard. I had a sudden realisation at work that I was no longer a student and that it is probably for the longer term, if not for good. But as the days have gone on I feel a great sense of relief, a huge weight feels as if it has been lifted off my shoulders. I am free to use what little spare time I have doing what I love; reading, taking photos, spending time with family and friends. And most of all I don’t have to feel guilty for napping, for sleeping, or for taking entire days in bed with cups of tea, my cats and a steady supply of painkillers because that’s what my body needs.

So I’m not a student any more, and I may never graduate. And that’s ok. Because I come first, education will always be there, and I have already achieved so much despite all the things set against me. So if you don’t mind I’m off to stick my head in a magazine and have another cup of tea.

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Spring At Home

Spring is such a beautiful time of year, it’s a close second the array of bronzed colours Autumn brings.

If you’re a regular reader of my blog you’ll know that I don’t often get out an awful lot, and I certainly don’t have a garden to admire from the dark basement flat that is my home.

The winter had left me feeling rather down in the dumps and generally fed up of the four dark damp walls of my expensive Brighton rental home. With no grass verges outside, few trees and not a sparrow or starling to be heard twenty minutes inland from the sea, I was desperately craving some greenery and colour at home. But with the lack of sunlight I have always been convinced that no plant could survive here, just as I appeared to be struggling to.

Then I read a magazine article about how good it is for your mental health to fill your home with plants. I am lucky in that I have huge Victorian windowsills on the two windows in my flat so I decided to hot foot it (get the bus) up one of the steepest hills in Brighton to my (very) local garden centre.

I’m positive that once inside my wife despaired of me, I was thoroughly excited by the greenery an houseplant options that surrounded me and she promptly abandoned me for the book section! Cautious of the poor light I finally came home with a couple of plants, a cacti pot and some pretty pots for them.

A few weeks on, they are alive and well so after a doctor appointment we went to the local florist at our market who always have a lovely selection of plants. Having read aloe vera plants are good for aiding sleep and need little light, this insomniac got her hands on the biggest one there for the bedroom windowsill along with a beautiful red edged grass of which I’ve not a clue what it is.

Finally, I needed some floral colour, so a trip to Marks and Spencers gave me the opportunity to be treated by my wife to a couple of lovely bunches of flowers and daffodils that cost just 25p because one flower had started to open, bargain!

Having been a keen gardener back in my home town of Birmingham, and even volunteering for a Jacobean walled garden, this green fingered girl (ok, woman)  is loving chatting to and watering her plants, I forgot how much I missed it. I’ll certainly be getting a bunch of flowers every week too.

Here is a small snapshot of some of the colour that is currently filling my home. I hope you like it as much as I do!

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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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Living the Best Life with Fibromyalgia – A Book Review

Last summer I was contacted by Alisha Nurse. She’d written a short handbook based upon here experiences of living with fibromyalgia and asked if I’d have a read to see what I thought. Well, the months ran away with me in a blur of flare ups, hospital appointments and a few stressful events, and I never got round to reading the book. I never forgot about it though, infact I thought about it quite often. I made it one of my New Years resolutions to read the book, and last night I finished it.

The book isn’t too long, 78 pages on my Kindle Fire, and it’s clear from the beginning it’s written by a fellow sufferer. I instantly found I could relate to the author and this made me want to keep on reading and not put my Kindle down until I was finished. Many books I read on health subjects tend to be patronising, use positive thinking and distraction to make it go away kind of books, but not this one.

Alisha is honest about the ups and downs of life with both fibromyalgia and clinical depression. She begins by telling us about her childhood, family remedies and about her battle in both getting diagnosed and getting the help she really needs. The fact this books touches on her ongoing fight with depression is a good move in my view, lots of people with fibromyalgia have depression or know someone who has it, so it makes it even more informative to read, leaving you feeling closer to Alisha and like you really know her.

My favourite part was the recipe section for her healthy, clean diet, and the fact that it includes so many recipes based on her family history in Trinidad. Ginger tea, garlic tea, fish, burgers, soup, there’s something there for everyone, even fussy old me.

She also details the supplements she takes, some of which I take too, so it’s great to know we have quite a lot in common and I’m heading for the right track. She talks about pacing, getting back to work and meaningful living, all of which is not necessarily new to us, but combined in a great little handbook together like this, is just the thing I personally have needed to re-evaluate where I am with my health and what I can do to improve things without waiting for the help of the NHS on my months long waiting lists.

Ultimately the book details how Alisha has learned to live her life as full as possible, whilst managing the symptoms of her illnesses as best she can. And I think she’s cracked it. It sounds like after much trial, error and a little help from her friends, she back on track, and she knows exactly what she needs to do to keep it that way.

I personally have found the book empowering and, as I said above, it’s made me step back and take a look at how I am dealing with my health, what I can do to improve it and how I can keep it that way.

If you suffer from fibromyalgia I would strongly recommend this book to you. It took me just a couple of short evenings to read, was fibro fog friendly, and is something you can constantly refer back to if needed, if not just for the yummy recipes.

You can find Alisha’s website here and it’s also worth giving her a follow on Twitter if you’re a Twitter gal, or guy, and of course there’s Facebook.

I really hope you all find the book as interesting and useful as I have.

Happy reading!

Karen xx