Uncategorized

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.

16174690_10155056447296907_4752227315021474934_n

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.

16602509_10155124601236907_8977211409611069126_o

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.

IMG_1779.JPG

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.

18422900_10155401621261907_2851015703548279051_o

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

18422154_10155422580236907_1290778723834684990_o

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

18765791_10155478201076907_3044603515205219314_n

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.

18814837_10155496728816907_6328524442598961635_o

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.

20108114_10155651964326907_6819382201700508169_n

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.

20229036_10155673477146907_2557398163153603697_n

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.

20841022_10155735025021907_4214024322612970801_n

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.

21167252_10155775524721907_8249931427569513595_o

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…

16684147_10155173646481907_3733264187291190499_n

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!

Uncategorized

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.