No one wants to be housebound, but it is a place that anyone can find themselves at any time. You don’t have to be chronically ill, to face a future of your world being restricted in this manner, all it might take is an accident, or a stroke, or simply old age, for you too to be here. Yet it is the last thing that any of us really takes as a serious possibility. Even I didn’t really see it as something that could seriously happen to me. Yes, I knew that there was a possibility, but if I had taken that chance seriously, we would have moved home as soon as we could once I had my diagnosis.
Like many couples once we were married, well buying a home rather than renting made sense, and like most couples, we bought what we thought was our starter home. Money was tight and basic was a luxurious description of what our home looked like. With a lot of hard work, and living on a tight budget, we transformed it as fast of we could. We had just had the kitchen fitted and were still decorating it when the news arrived, I had Fibromyalgia. Six months later, a second slap around the face, brought my PRMS. We couldn’t afford to move and with the fear of having to give up work, well we made the only choice possible, make this the best home we could. At that point, we still had the hope of moving in time, but within a year, that hope was destroyed by the recession and negative equity bit. That is how quickly and simply you become stuck with a house, millions out there just like us, were caught in the same position, unlike them, I became housebound overnight by a flare. At the time, I couldn’t use my wheelchair and I couldn’t walk more than 15 feet. I was stuck inside what was now our much loved second floor home, with four steep flights of sandstone stairs descended between me and the outside world.
I managed to hold on to my job for three years, but then, well then I was made redundant. In a way, it was a blessing as I managed to pay off a chunk of our mortgage, which reduced our monthly payment to a level we could cover without my wage. Money wasn’t going to make the slightest difference by then, even a ground floor home wouldn’t give me freedom as fatigue had reduced my activity to almost nothing. Where ever I was, I was still going to be housebound. I am telling you all this, because if it could happen to me, it could happen to you. No matter how well you plan, how well you are at this moment, your whole life can be flipped without any action from you in any way.
This is my 9th year of being housebound, my 9th year of not seeing the world in the way you and your friends and families do. Where I am, is to a great extent is a place where time no longer exists. Nothing, other than the electrical goods that have reached their preprogrammed obsolescence date, has changed within these walls in any significant way, as I was the DIY’er and the instigator of change, not even the walls have been painted. Every day I have woken in the last 9 years, my world has been identical. The one action that we took that I am so glad that we did, was when we decided to make our home the best that we could. I may have seen the same walls every day for 9 years, but I made sure that they are walls that I love.
I can’t work out if it is me, or some odd thing that goes along with my health, but I am the total opposite of my home, as a person I have totally changed. If you had asked me 15 years ago, when I was diagnosed, if I could survive being housebound, I would have given an emphatic no. I was like anyone else, I enjoyed going out, loved walking so much so, that I’d never even wanted a car, or learned to drive one. I enjoyed socialising, but I admit that I had recently matured past the party animal mode, married life was too good. More than a weekend without leaving our home wasn’t something I would have even considered. Housebound would have sounded like hell, yet here I am happy. My life now, compared to my life then, is like chalk and cheese, but inside, I don’t feel as though I have changed, even though to survive I must have.
All you have to do is read back through my four years of writing, and you will see that I have tried many time to work out, how this all works. Not once have I been happy with my answers to all the questions that still spin around in my head. I think part of the reason I have failed before, is I have only looked at it on two levels, me as a person and my health. Not once have I taken into account the outside factors, the everyday pressures of life that we all live with and the role that they played. Without a doubt, the stress of buying our home, which to me was something I had never done before, were huge. I was newly married, a new homeowner and newly diagnosed with two life-changing conditions, all in the space of two and half years. In the following six months, I was promoted at work, to a much more intense and responsible role, and we lost our fight with the insurance company over a policy that should have paid our mortgage because I had MS. Then came the recession, locking us into not being able to even move. It really isn’t any surprise that my health went into free fall when you take all that into account. Two years later, I was housebound.
I know without a doubt, that in the first two years of being housebound that my health improved dramatically. I learned to eat again, got rid of the gastric nasal tube and gained three very needed stone in weight. Life was getting better so I had no reason to believe I would be here forever. During that time, I learned to live day to day, to not look too far into the future and to be happy with life as it was, because I believed it to be temporary. I now believe that it was those first two years, played a huge role in my ability to be happy in a housebound world. If I had known it was forever, I doubt I would be as happy as I am today. Throughout that time, I believed that I was getting stronger and that I was working towards returning to normality. That mindset meant that I had a goal to work towards and all I had to do, was be content until that point. Somehow I knew the worst thing I could have done was to circle a date on the calendar as being my freedom date. I didn’t want to be like a kid counting down to Christmas, especially, as my Christmas might be canceled. My goal was to get fit, not a date. Life became one day at a time, never looking past tomorrow but always living for today. For my own sanity, my days had to hold a routine to them, a structure that kept me on track and always with the goals of, work for my brain, food for my strength and sleep for my energy.
When my health plummeted again, yes there was a danger all of that could have been undone, but I maintained all of it, I also adding in a process of trying to find the good in every day and enjoying it. Add this together with my post from a couple of weeks ago, “Breaking the Fear” and at last, I think I have made sense of it. Like so many things in life, it the perfect storm, all the element came together and here I am. When you live day to day, time oddly stops, something that has been probably helped by the fact my home hasn’t. If I didn’t have it written down, I wouldn’t believe for a second that it is now my 9th year. My concept of time, routine, daily normality have all been changed forever. From the minute I wake at 8:30, I am focused only on what I do online, that takes me through to 6pm, then to those three hours daily where Adam and I are together, followed by bedtime at 9pm. There is my life. It doesn’t sound like much, but to me, it is now everything. Despite once never believing that it was possible, I’m happy. If there is a secret to a happy housebound life, then oddly I think I can now bring it down to one word, simplicity.
The changes that hit our lives aren’t always in our control, but that doesn’t mean that we can’t adjust to them. It’s easy to say, why don’t you do this or do that, but the truth for most of us, we can’t do anything to change where we are. Yes, at one point, improved finance might have changed it all, but that time came and went, there’s no point looking back with what if’s, we all have to live for today, some of us more than others.
Please read my blog from 2 years ago today – 27/03/2014 – Spasms and more
I woke this morning at just before 5am, my legs were screaming at me in a way they haven’t done for a long time at night, in fact, I don’t think I have felt it like that since before I was prescribed morphine. It wasn’t just the spasms that were shouting for my attention but I also had pain coming from the work that the chiropodist did yesterday, both my big toes are red and angry where she clipped and scrapped away all the dead skin, with them so raw the pressure of the duvet was just too much for them. I sat up and reached straight away for my booster tablet and glass of coke, I knew that there was nothing I could do other than take the meds and try to massage them until they calmed. Breaking the spasm isn’t the end of pain, it continues to hurt for a considerable…..