Not many people out there will understand what it is like to manage to do things when you have Autoimmune disease/s, except other fighters.
When we get sick or our health declines (slowly or quickly) it doesn’t take away our will to do things with it. That can even grow stronger inside us.
It is one of the hardest facts, and the most common thing that healthy people will almost always take for granted, which is that we want so desperately to be able to achieve things and accomplish goals.
Some of the most talented, creative, motivated and intelligent people I know battle these diseases and yet it is rarely recognized, the tremendous difficulties we face each day; even by health care professions.
Everything we do, or try to do, has a price and a toll. We rarely ever tell people these facts and we do our best to hide and conceal it from the world.
I recently connected with a talented interior designer and artist who also has Sjogrens and SLE. Like many of us who are creative, she battles the fatigue and the pain to do the things she loves. But undoubtedly there is a price to pay for doing these beautiful things and she pays that price.
My artwork and blogging causes pain and vision problems. My gardening causes pain and sun exposure, which in turn takes a long time to recover from. But the alternative is painful too.
Everything that you can imagine doing causes a flow on effect which ordinary people will not be able to conceive let alone appreciate. Most people don’t want to know.
Our renovations, which has been a huge undertaking for us, has also been some of the hardest times for so many different reasons.
In order to change the kitchen so that I will be able to move around it more easily we have had to pack the entire kitchen into boxes that have been piling up in the house. This in turn means that I can’t move my walker or wheelchair around the house, which means that I have been confined to one area of the house. This has been the situation for over a month now and it has been so hard. Moving around boxes has meant the back pain that I had recently undergone spinal injections for has returned, which means I spent another birthday in awful pain. It’s been heartbreaking. Everything has a price. The flow on …
Just like a small stream can lead to a mighty river!
Delays in painting has seen me attempting to do some painting myself from the chair and this has been excruciatingly painful to my hands, hips, back and vision. But I just can’t let my husband do it all himself, so I try to push through, and then return to bed in tears, pain, tremor and spasms. One day like this means I will suffer all day and night for weeks, which means extra pressure on every other daily activity, like showering.
Everything has a price. A very high price.
Recently an autoimmune friend spent a day at the beach with her precious family which caused her a week of pain and suffering, but I have no doubt she did it all for the family she loves and for a moment to feel alive. This is why we do it. To feel some life and a little pleasure that so many people take for granted, and we also do it for the people we love so desperately.
My husband and I have often discussed the terrible price I pay for doing even the simplest of things, perhaps we will always have this discussion and debate about how to pace myself better. It is always a difficult topic as the line keeps moving everyday and is so unpredictable.
However much I suffer and struggle, however much I may cry and battle, the truth is at the end of the day I am the type of person who always looks back and regrets the things I didn’t do rather than the things I did do.
Perhaps this is a fatal flaw in my personality and reasoning, and also one of my hardest battles with chronic illness?
I hope that one day I shall find an answer it all, in the meantime I am so grateful for the fact I am not alone.