I have spent the last few days umming and ahhing as to whether to write this blog. It puts me in a vulnerable position and reveals a lot about me and my own life. But, after consideration I felt I should write it in honour of all those who spend their days horizontal..
I first heard about people who lived their lives from a horizontal position during spartacus, out of which the term from bed activism was born. Liz Crow then took this further with her 'bedding out' activism. I have always been a very private disabled person and didn't feel able to join in with sharing me with the world. However, my recent experiences have compelled me into writing a snippet of my life.
I have spent the last three weeks in bed. horizontal and unable to function. Although this is/was a temporary position for me it has given me a great deal of respect and admiration for those who have to do this day in day out with no prospect of recovery like I have.
Having to rely on someone else to get me food, drink, entertainment, well everything and anything has taught me a lot of resilience. I am stubbornly independent and the orders that I keep giving out to people still feel like begging and forcing me to reduce myself to a lesser being somehow. To be completely dependent on someone else is, at times degrading and always difficult. I am just grateful to my husband that he has accepted the role of carer/ servant with such good grace. It makes it easier to bear somehow.
I dont pretend to know what it could be like to do this on a more permanent basis, but I have a much greater respect for those who do now. The term 'from bed activism' was just that, a term. Only now can I somewhat appreciate the sacrifice people are making to get involved and to keep fighting the government and welfare reform whilst being unable to function themselves. Thank you.
These last few weeks have been isolating. I can't even get on to twitter for some reason that this laptop wont divulge (again my husband has swapped to my desktop so i can have his). I have been scared to reveal how bad things are to my friends for fear of sympathy, and on the rare day or 2 that I make it.. outside I want to enjoy it and not spend the time talking about not being well. lack of understanding and fear of being labelled has left me dealing with this on my own, again though I do have my husband.
I spend my days refreshing facebook, messageboards, emails, anything and everything to make me feel like I have some sort of connection to real people, the real world. I have watched every online tv show I can find to watch. I am thoroughly bored and probably a bit depressed.
But I guess thats why I am writing this. To remind myself that this is temporary, and I will get better. I hope that this doesn't come across wrong, that I am somehow 'rubbing others noses in it', but that I should be grateful that it is temporary and that I admire and deeply respect those for whom this is more permanent. I have never truely appreciated your activism and spirit until now. thank you.
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