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Overdoing It

Chronic illness is a funny old thing (not as in haha funny, as I’m sure you’ll understand if you’re reading this!). Sometimes you can do nothing and feel absolutely awful as if you’ve run a marathon then had the remainder of life sucked out of you by a Dementor, Harry Potter style. Other times you have the luxury of doing a little bit more than usual and feeling ok, no post extertional malaise days later, you just keep on plodding along. And then there is actually overdoing it and your mind and body punishing you for it as if to make sure you never leave the house again.

Last week I worked a couple of extra hours, had to get to the vet with my kitty cat (old lady check and essential vaccines) and like an idiot decided to book a ticket to the (very) local book discussion at a book store to see my favourite writer, horticulturist, and all round awesome woman.

Extra hours worked, no more than two I might add, lifts to and from work all week by my wonderful team of colleagues and friends I was doing ok-ish. Getting to the vets with my wife which is five minutes away wasn’t too troublesome. But as we were sitting in there waiting for the nurse to find the kitty blood pressure cuff (by the way the cutest thing in history – see here), that feeling came over me, as if someone had pulled the plug out and I needed to lie down immediately. I couldn’t string a sentence together, support my own body weight – thank goodness for the kind nurse who brought in chairs – or feel like I was going to be able to keep my eyes open. When that feeling hits I feel like I could collapse at any given minute, something which thankfully has only happened once and luckily I made it to my sofa in time. As soon as we made it home my wife helped me put my pjs on and I made it to bed, tramadol, a bottle of water and a very upset kitty cat for company. I slept solidly for three hours.

As the week went on I became more and more anxious. My generalised anxiety disorder (GAD) has no known trigger but tiredness makes it so much worse. I couldn’t face the book talk, could I. At the last minute I awoke from a nap just in time to slowly get ready and get the bus which thank god is only five stops and door to door. Disability pass in hand I bagged a front seat and the driver waited until my backside had hit the itchy nylon cushion. Alys Fowler is a true hero of mine, she inspired me to garden when I was housebound for almost three months with the onset of GAD, got me obsessed with growing my own fruit, vegetables and cut flowers, study floristry and she writes an awesome book. I got the lift to the third floor, folded up Little Johnny and made it just in time. For that short period of time I forgot about being ill in the intimate setting of the small discussion and enjoyed myself more than I have in a while. Everyone I told bar my parents said I need to get out more and am too young to watch a horticulturist impart her life wisdom in my spare time, but I’m so glad I braved it and made it. My hair may have been a disaster, make up smeared around my eyes post nap, but I didn’t care, and neither did Alys when I had the opportunity to chat with her.

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Next comes the weekend. A time to have luxurious lie ins, wander about the local area (I live in Brighton’s iconic area of coloured terraced houses and steep streets), eat great food and meet friends. Er no! My so called lie in woke me at 3am Saturday morning so dizzy I had to hold onto the wall when popping to the loo, lie down in stages as my head was swirling as if I’d drank one too many bottles of wine, and of course, couldn’t get back to sleep. Dizziness to this extent is reserved for times when I have seriously overdone it. I assume this means going to the vets and sitting down to watch a 45 minute book discussion. Really living it large! The dizziness intensified and waned throughout the day depending on how close I was to my next nap and all hopes of cooking delicious healthy food went out the window for a takeaway. I felt as if I was floating all day, was nauseous and a strange pale shade of grey that matched the dark circles under my eyes. I fell asleep on the sofa, awoke as dawn broke and spent the next few hours waking up every half hour. Exhausted and still dizzy I gave in at 9am and made myself a cup of tea. Unable to get to sleep for a nap I decided to get out my notebook/laptop and write this blog.

Tomorrow the cycle begins again, my alarm will go off and my incredibly boring, sedate, yet exhausting routine starts all over again…

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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.