February has been a very expensive month for us. I'm not complaining, I'm very, very glad we've been able to buy the things we have. I take none of it for granted. A new bay window, more of my garden plans have come to fruition, and I've squeezed in a new bag from Lisa, and book purchase too. A few years ago our income was so tight, I was constantly worried about paying bills, we had one wage coming in, and we had to watch every single penny.
I don't work. I didn't choose not to work. It was never, ever on the agenda for me. I've always worked, since the age of 13, earning enough money baby sitting so that I could buy my own clothes. I left school on Friday and started work on the Monday. The week I left college, I forfeited a holiday with my friend, in order to start a new job. When the girls were little we both worked part time, and looked after them between us, we managed, and every spare penny we had went towards paying off our mortgage early. Now I'm so glad we did.
I worked for years with MS, struggling with fatigue, but not knowing what it was. When I was diagnosed, I chose to work part time in order to carry on working, and manage my condition. I tried very, very hard to make it all work. It didn't and four years ago, fearing I would be sacked anyway, I took redundancy and left the job I loved.
I can't begin to tell you how difficult this was. I was never defined by my work, but it was a huge part of who I was. I had poured so much of myself into my career, into helping others, that I failed to help myself, and see how the stress was making me unwell. I still miss my job, miss those I worked with...but I don't miss the work stress and the poisonous effect it had on my body. I now know I need to put myself first, and any energy I have, needs to be there for my girls, and their complex needs. If I was to go out to work every day, I wouldn't be able to function, let alone care for them.
Here in the UK, the benefit system for those with disabilities, is not fit for purpose. It's degrading and demeaning. It's almost impossible to navigate. It's extremely difficult to get what you are entitled to. It has been conjured up by those with very little empathy for the vulnerable, and very little knowledge of what it's like to live with a condition like MS. It's a system designed to violate, and therefore puts most people off pursuing a claim. Society, as a whole makes those receiving disability benefits feel unworthy, we are sponges, lazy...parasites. These are hard messages to shake off, especially when you hear them almost daily.
I've really, really struggled with being on the end of those stereotypes. It's had a big impact on me over the last few years, I'm not embarrassed that I have MS, but I am embarrassed that I claim a small benefit in order to pay the bills. This is despite the fact I worked tirelessly to support others for almost 30 years. How crazy is that?
Last year I was successful in being awarded my works pension. It's not huge, nothing like what I would have had if I'd been able to continue working until I was 68, but it has made things so much easier for us. When I left work I was told I couldn't claim my pension, at the time I didn't fight this as I was so exhausted. Now, I'm questioning this decision. I believe I should have left work, not with redundancy, but with my pension.
When I was awarded my pension, I felt lighter, someone believed the level of impact my condition had on my life. This was very important to me, meant I could hold my head a little higher. I'm fed up with society trying to make me feel embarrassed or ashamed. I'm not. I can't work, not through choice, but through need. There are many who continue to work with MS, with other condions and disabilities. I did too, for years.
So before anyone judges me, or anyone else like me, think how you would feel in the same situation. So many choices have been taken away from me. I can no longer choose to stay in the career I loved. I can no longer choose to walk the hills and dales of Derbyshire. I can no longer choose to walk to the local shop, pick up a basket of food, and walk back with it. I can no longer choose to travel the world as I dreamt of doing.
So what choices do I have...to look after myself, and build a life around me which I love, one that keeps me as active as I can be. I can choose not to accept societies stereotypes. I can choose never to take what I do have for granted, especially when I know that there are so many who have so little. So that's what I will do.
(I don't really know where this all came from...it's was just going to be a post about how February has been, I had even titled it Hello March...maybe that can be the next post. What I do know, is that I've had a huge amount of support from you lovely lot over the years, and I don't take that for granted either).
Amanda :) xxx