This will be the first post where I will talk about my daily living in detail; the things I am grateful for and the things that I simply have to do. One of the hardest things to do when you have any chronic illness is to find a healthy balance between life and your health. It may sound simple, but until you have to do it you won't understand just how difficult this is. The main thing you will realize is that you may have to let go of some of the things you did before, so you may continue to work, but then you can do nothing in the evenings or at the weekends. The life you chose to live will come down to your personal circumstances and your mental health as much as the physical.
So here is how I have changed my life to make the most out of it, without compromising my health.I choose to continue to work, but I know I am lucky
I am lucky enough to not have had to give up work, I know how lucky I am for this. There are many reasons why I have been able to continue with my job. Firstly it's down to the type of job that I do; I am a writer so the majority of my day I am sat down which helps. If I was in a physically demanding job it would be game over by now. Then there is the location of the office to my home - it is very easy to get to physically which cuts down on traveling time and gets me home with enough time to rest. Finally there is the fact that to continue working in a job that I love, I have had to give up a life in the evenings and even at the weekends sometimes.
People have asked me why I have chosen to stay in work and give up nights out or even the ability to move from the sofa in the evenings. The only answer I can give is that I love what I do and it gets me out of the house, the significance of which is huge. While I can work I will work...well that is my motto anyway. That doesn't mean that I don't feel grateful for the fact I can still do it, I just get so many questions about what it is like to work with this disease I felt it was time to explain.
There are some struggles during my working day that I have learnt to deal with. Probably the worst for me is the leg pain from sitting down all day. I have very understanding bosses and colleagues who are more than used to me getting up every hour or so, listening to me have the odd moan and understand when I need a 5 minute break. I know that if I didn't have such understanding people around me I would not be able to continue.
Brain fog is another of my daily struggles in work and as we all know, there is very little we can do to get over this symptom. The best way I deal with a loss of words (not great when you are a writer) is to make notes, lists and if I am really stuck simply walk away and re address the issue another time. Project management is key to making sure I complete my working responsibilities without making myself ill. Also get yourself a good notebook, this is my most important accessory in work.
What have I given up in my lifestyle to be able to live and work...
Oh so much and please don't give me sympathy for this, remember this is my choice and I wouldn't change a thing. Before I got as ill as I am now I was a full on, live music loving, festival girl (as I aptly named myself). I was out two or three times a week witnessing the beauty of live music. Then there was my love for pub quizzes...oh the joy when you win a free beer or bottle of wine. These were my favorite kinds of nights. I also worked a physically demanding job within the mental health sector. I would often work until 8 or 9pm and have to be up again for an 8am start. I would work hard and play hard, giving my body little time for rest.
Finally there was my love for my daily swim. Not a slow swim, this was long training sessions that kept me physically fit and made me happy. There were no problems that a swim couldn't fix; the freedom of the water, the exercise endorphins and the achievement at the end of a long swim - it was nothing short of heaven.
I was ill during this period, but I could do these things as long as I had medicine and maintained my positive outlook. However there was bound to come a day when I would have to make a choice about my lifestyle and future. If I was to continue to work I would need to readdress my lifestyle, cut out everything that I can and look for other things to enjoy. Was I sad about this.......oh god there are not enough words to describe the loss of independence I felt and sometimes still do feel. The fact of the matter was that I couldn't keep up this life and survive much longer. The choice to give up my evenings to the lupus was easier than my choice to give up training...oh that is a blow I still feel.
So what is the balance?
Growing up has given me some balance anyway. In my early 20's, especially during university, I just wanted to be like everyone else and I pushed myself far too hard sometimes. I made myself ill just for the chance of a night out with friends, knowing that it would take me weeks to recover. The wild days were great, but now I am in my 30's my priorities have naturally changed as has the disease. I have also learnt new found love for many hobbies I have taken up as I cannot go out anymore. I love nothing more than listening to my vinyl...I recently got Dark Side Of The Moon for my birthday...oh on vinyl it sounds delicious.
The main balance for me is how I choose to live during daylight hours. As I continue to work, I have had to balance out the day between concentrating on work, getting up to avoid stiff joints, battling the brain fog, eating regularly and saving enough energy to get home. You may think that this leaves me with little choice in the evenings other than sleep. Whilst I do sometimes end up in bed at 8pm, a normal night will include a good film, reading a book, listening to music and spending time with my loved ones. I can still live, I do still live and yes I miss the old me sometimes but I wouldn't trade the new me in for any amount of money.
