There have been a lot of changes in my life in this last year – I was made redundant from my well paid job, I believe as a result of my health issues, and had to take a minimum wage, physically intense job to make ends meet. This took a toll on my health and I recently left that job.
I am now working as a bookseller – which is something I love doing. I literally get paid to talk about books with other bookworms, and I am so happy I could do the Carlton dance- you know, if I had the energy to do so. The downside to being a bookseller is that I am on my feet for a large part of the day – I can sit down if I need to, and have numerous breaks, but it still leaves me exhausted.
If you saw me in the bookstore where I work, you probably wouldn’t realise that there was anything wrong with me – I try to be cheerful, usually have a book related item of clothing or accessory on, and will happily go and get a book from upstairs, for a less able-bodied customer.
Yesterday I was working; I had a brilliant day and actually stayed late to continue talking to a customer about books. This morning I woke up in extreme pain, unable to move for about an hour. When I was getting ready for bed I had to apply Deep Heat to my knees and hips, as my joints were all aching and this helped massively.
I am now on the settee with a blanket wrapped around me, drinking tea and reading a book.
I am finding that the key to living with a chronic illness is balance – I work part time, so as long as I rest on my days off, I can usually summon the energy to do the job I love. At the moment the ratio is 2-3 days working, 4-5 days resting.
I can’t really afford to buy new clothes or shoes anymore – which is why I’ve missed out on the last few Irregular Choice launches, sob. Despite having less expendable income, I am a lot happier.
I’ve lost a lot of the weight I gained when I started taking prednisone and have more energy. I credit a lot of this to my decision to change to a LCHF diet. My energy levels are a lot more stable.
I also have two lovable fluff babies – Harry and Fred, my cats, who have brought so much joy into my life. When I’m having a bad day, Harry will stay with me and keep me company.
I used to feel really bad about all the things I can’t do, but I realise I am in a better position than a lot of people, so I am making an effort to appreciate the good things in my life.
When I’m having a good energy/low pain day I embrace it, and do some of the things I wouldn’t normally do – like go urban exploring with my husband. On a low energy day I get cosy with a book, or binge on some TV. Either option is a good way to spend a day!
I decided to stop taking methotrexate- after speaking to my Rheumatologist, as I didn’t feel that it was helping me. I continued to get sinus and kidney infections, and it just made me feel terrible all the time.
I think today is the first time I’ve woken up with severe sinus pain since I stopped taking the methotrexate- I’ve had a few nosebleeds in the last week, so it’s probably another infection. Yay!
One of the biggest changes is that I’ve stopped apologising for being ill – If I have to miss a friend’s party, or not go on a day trip that’s been organised, it’s not the end of the world. I have to put my wellbeing first.