Usually when I sit down to write it just flows. I don’t think much, I just spew out whatever happens to be on my mind. This topic, however, is different. This topic is fraught with complexity and emotion that can be very difficult for me to express. So I guess I will “start at the very beginning, a very good place to start” – to quote one of my favourite movies.
I have Systemic Lupus. I have had it for the past 14 years complete with a seizure,a stroke, blood clots, low platelets and bleeding , pain and extreme fatigue among other things, including many hospital visits. I read a quote once that said -more or less- that every time something difficult happens in your life yell “plot twist” and keep going. I couldn’t think of a better way to describe lupus. It is a disease of constant curve balls and “plot twists”. You never know from one minute to the next what might thump you in the head and send you off in another direction of more meds, more pain or more parts of your body deciding to go on strike.
Since I was very young my biggest dream was to have a family. I didn’t want a big corporate job or to save the world – I just wanted a family. And you know what – I have been given my dream, as simple and unambitious as it may sound to some, I have the very thing I have always wanted. For that I will be eternally grateful, no matter what.
Unfortunately my daughter, who is currently 14, has also been diagnosed with chronic illness’ – both Coeliac Disease and Rheumatoid Arthritis. As a mom it breaks my heart to see her struggle daily just as I have for the past 14 years. I have seen her strength and this family’s strength in coping with two chronic illness sufferers. I am extremely proud and thankful to have a family of extraordinary people, including my younger daughter and husband. It is never just the ill who have to deal with the illness, it involves every member of the family and they are all a shining light in my life.
You may be wondering what any of this has to do with teddy bears and cats. Well, being ill so much of the time, with constant pain and exhaustion, means that I spend a lot of time in bed. My Companions? You guessed it – my teddy bear and my loving, warm, snuggly cats. Although I do get a little suspicious when, in the winter months, the amount of cuddling substantially increases! I’m just saying.
Loneliness can be a huge factor when you are ill – not being able to participate in life and do all the things you used to do, not having people understand that you can drop off the planet at any time because you do not feel well enough to engage with the world. This is where my teddy bear and cats come in. They comfort me as I lie in bed and keep me focused on the love instead of the disease.
I am not my disease and my disease is not me. It may debilitate me and put tremendous strain on my family but I am still me and I still have my dream and that is what keeps me fighting every day for a better day.
Teddy bear hugs
Tonia
Beautifully put. You are all a gift to us both .Thanks for sharing- I know you don’t find it that easy.