Vasculitis Update – Living with Less

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.

2 thoughts on “Vasculitis Update – Living with Less

  1. I”m glad you’re doing better! I can relate to having less fun money when your income drops like that, but I’m so happy to hear that even still you are so much happier. And working with books!? How awesome!!!


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