Eccentric, tea drinking, stationary addicted cat lady. Living with multiple chronic illnesses and a multipack of crisps, you'll most likely find me with a cup of tea, a new notebook and my kitty cat. Or in a hedge taking photos of wildlife. So grab a cup of tea with me, sit down and get stuck in.
…but it’s such an achievement for me, and I’m so proud of myself! Anyone wanting to give it a go should totally give it a whirl, it’s amazing the friends you make, the things you learn and the people who reach out to you.
Have a fabulous, healthy New Year, and happy blogging!!
Here’s an excerpt:
A San Francisco cable car holds 60 people. This blog was viewed about 2,500 times in 2015. If it were a cable car, it would take about 42 trips to carry that many people.
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.
Life with chronic illness has been a maze of challenges; trying to pace, keep up with work, look after my home and pets and maintain a social life.
To my surprise, the biggest challenge has been keeping a hold of friendships. Granted, I do live 200 away from home so a lot of my (very) small group of friends and I keep in touch via text messages and social media (one of the few joys of Facebook). Over the last 5 years in Brighton I’ve also built up a small group of friends in my new home town. But the sicker I have become, the harder it has been to maintain these friendships.
Over the past year my health has further deteriorated to a point where I rarely leave the house apart from to go to work. When I do have the odd afternoon out, I suffer for days. This means I’ll possibly be too unwell for work, and with ever increasing bills, sadly this is just not an option. It seems that some of my friends have not always understood this. Popping into town for a coffee is quick and easy, right? Wrong! Apart from enduring the journey, crowds of people and battling with my anxiety (that’s a whole other blog post for a later date) the process of socialising itself is utterly exhausting. Visiting someone at their house is just as difficult, by the time I realise I’m feeling really unwell and need to go home the damage is already done and the days of suffering begin. Wandering around the shops, sitting on hard wooden cafe chairs and travelling are now tasks I really struggle to cope with unless I have days of rest and preparation beforehand.
While I’ve always had a very small group of friends, this itself seems to have significantly dwindled over the year. Explaining your illness to people of so very hard, especially when it’s invisible. But I also don’t want to spend what time I do have with friends explaining the ins and outs of my painful, exhausting life. I want to enjoy the time with them and be ‘normal’ for an hour or two.
I think what I am trying to say in this blog is “please bear with me. I’m much more poorly than I look or will ever tell you. Instead of coffee in town, why not pop over for tea, cake and kitty cuddles. Or maybe just send me a text, or post something on my Facebook page. I may not feel up to replying straight away but it’ll bring a smile to my face. I don’t need you to do anything, just make sure you stay in touch, because I value my friendship with you so very much”.