As much as I still hate it, the fact is that my health has confined me to my bed more often than I could ever have imagined. Even after all these years I am still the worlds worst at being confined to a bedroom, and I am not proud to admit that I do not make it easy on myself or my partner. It is my sincere hope that I will become better or make a peace with it eventually.

Being confined to a bed is not the cozy, peaceful, fun, lazy or self indulgent image that many healthier people like to imagine. Far from it. I suspect that it is what they imagine because that is what they know. I only wish that it was how bed confinement was. Truly. But it’s not at all like that for me.

When I find myself confined to the bed and surrounded by the four walls of my bedroom it doesn’t take long for my spirits to drop and my emotions to become unstable. Pure frustration is added to the pain and suffering I am already going through. It makes for a truly difficult time for me and my partner.

When I find myself confined to a bed I tend to do two things a lot; suffering and thinking. When I am not struggling with the pain of the circumstances I will spend a lot of time in deep thought. This has proven to be my greatest achievement and my darkest demon.

I can spend far too much time thinking backwards and remembering things I once could do and things that I wish I could still do now. It’s the worst torture imaginable! I have learned that it is best to distract myself when I feel myself sliding too deeply into the ‘what was‘ or it will only hurt me emotionally; but it is so easy to do!

Recently I remembered myself back in my career and the countless hours I had spent doing planning, meetings and managing, all from my confines of my desk. I worked very long hours and, more often than not, I would work 7 days a week. I can remember I rarely had time for entertainment and relaxation because of the workload and my responsibilities at the time. This got me thinking about my current circumstances and doing some deeper soul searching.

I have recently been training myself to see these current times as being more like my new job and my new working environment. Instead of spending many hours at a desk and computer in the middle of the city I am now shackled to my bed and room working every bit as hard, if not harder! This has become my current workspace. Every day that I would spend at my desk I endeavored to make the most of my time and the best use of my skills. That was my focus then and it is still my focus now. This is what I try to do everyday with every little bit of my strength and ability.

In this sense I have always asked myself what things can I do and how can I make the most of my time, and ultimately my life. When I am crippled in pain or fighting some other debilitating symptoms I am invariably thinking and planning what I can do next. I am writing my blog in my mind or planning the next grocery list or project. I am even be scheduling visits to the vet or listing all the things that need to be done around the home.

As well as planning I am also problem solving issues or difficulties that my partner and I may be facing in our lives and with the outside world. The problem solving and creating that I once did for other companies I now do for us from my home office. My bed.

When physically able to I will fold washing, iron, peal vegetables, order groceries online, design home renovations, write business plans and develop ideas and suggestions which could make our lives better, more secure or more livable.

I have never believed that it has never stopped being my job to contribute in any way I can.

When I look at my time spent in bed as being doing my job to aid my body, and yet still do whatever I can to aid our lives, I feel less distressed when I have to face days, weeks or months without being able to leave my room. In fact it’s the only way I can bear it!

From the confines of this bed I have managed to do, and to organize, things that I could never have dreamed possible and to achieve things that have even surprised myself. In fact even bedridden I am working harder than I ever worked before. It’s an endless job with never ending challenges and I can never know when I will ever get a break. Ever.

If I am not writhing in pain and doing what I can to help this struggling body I am doing all I can to help my family, my relationship, my loved ones, my friends, my autoimmune community and myself.

I know many people will never truly understand what I have described, and it is not easy to explain to people in general, but living outside the norm is never an easy thing to do and many struggle to do so.

My job is not an easy one, it’s the hardest thing there is in the world to do, but I have always tried to do the best job I can every day.

Gentle hugs,

Trish