Breaking the fear

I have often found myself wondering when the day will come, that I get cabin fever. If you watch TV, it seems to happen to almost anyone who is confined for too long, but it’s those final two words that I expect are the key to cabin fever, “too long”. What is too long? Well, if you listen to the inhabitants of places like Alaska or Finland, too long, can be the months of darkness that every winter brings. If you listen to the average teenager, it’s probably around a minute, especially if their friends are going out. Yet, here I am, in my 9th year of being housebound, and I too spend my winters in virtual darkness. Not because the sun doesn’t shine here, but because the winter is cold and shut curtains, keep the warmth in. Recently, I have been taking it one step further. Again to save money, I have always been sparing in my use of electric light, but I was finding myself getting headaches, and my desk lamp appeared to be at fault. For years, I have been able to touch type, but never truly trusted myself to get it right. So I took the decision, that I was going to turn that light off, and go for it. Guess what, I can type far better than I thought, in fact, I’m making fewer mistakes, as I can’t just take a glance down and then hit the wrong key. That discovery, I think, is also a clue to my not being caught in a fever.

Although inside, I believe myself to be the weakest person alive, always doubting myself and never sure about anything, I know that isn’t how I come across, nor is it the truth. I am just the same as everyone else, my self-doubt levels are no higher than anyone else’s, nor is my strength or anything else about me. It’s all about self-belief, something all of us lack. It is hard when we compare ourselves to others, especially when they “appear” to be doing so much better than us at almost everything, not to see ourselves as a failure. It’s just the same when it comes to our health. Because we share the same diagnosis with someone else, or they share a symptom that we have, we can’t help but compare ourselves to them. We totally forget that different people are just that, different. We ignore the fact, that something as simple as a spasm, has a huge range of possible pains attached. We just see that apparently others cope better, but do they really? Our self-doubt grows even deeper when it comes to picturing our futures. I have had countless people say to me, that they don’t understand how I can be content, having been housebound for so long, because they can’t picture themselves being where I am for me than a day. Well, believe it or not, 15 years ago when I was diagnosed, neither could I. I like anyone else, looked with awe at those who were even partially housebound, surely all I had seen meant that cabin fever was a forgone conclusion. Yes, I could like anyone else, manage the odd week here and there, but weeks, months or years, never.

I have looked at my situation in so many different ways over the years. I have come up with theory after theory, and each has held rings of truth, but none totally fitted the bill. I don’t think that living as I do has any magical formula that makes it work, nor are there a set of steps that anyone can take. In a way it’s a little like my touch typing, it’s simply about doing it. Every single component of our health is simply about doing it. If you are coping with your health right now, don’t worry about the future, as when you get there, it will be just like the now, you’ll cope. Every step up in my health, at first, felt daunting. As the pain levels rose, I thought there was no way that I could take it, but I did and I do. It is a little like being on an escalator that you have been climbing for years. The higher up the stairs you travel, the more daunting the next step level seems, but when you do take that step, somehow, it feels right, a natural progression and nothing like you thought it would be like. By the time you reach the step level saying “housebound”, well, your ready for it. Your body doesn’t have the energy or oddly, even the desire to not rise to that step, it’s natural to be there. Hence no “cabin fever”.

I have no desire to go out, in fact, it is now the total opposite. The whole idea of leaving here to attend a hospital appointment, is more daunting, than the idea of taking that next step up my stairway. If there is a trick to surviving chronic illness, it is in looking only at the step you are on, not the one that is ten or twenty levels above you. Once you are on that escalator, you can’t stop it, learning that is the acceptance phase. I have come across people who are on that escalator and they are facing the wrong direction, desperately trying to run down again. It doesn’t work, no matter how fast they run, the escalator, holds them, just where they are, they just get more exhausted and more worn down. Once you have accepted, well, the rest just follows. It isn’t about hidden strength, or any of the other things, that people choose to pin it on. It’s simply about moving forwards and upwards. It doesn’t matter whether it is housebound, new symptoms or pain levels, as long as we’re facing up the escalator, we cope, we all do.

Right now, I am caught up in pain levels that are pushing me hard, but I am coping because I know that I can. If there is one thing that I have learnt in the last years, it is that. Those people in Alaska or Finland who suffer from cabin fever each year, do so because they’re healthy enough to go out. They still have the desire to be out there in the world, unlike those of us who are housebound by our health, there is no comparison between us, we’re in different worlds. So don’t fear your future because of how you’ll cope with it, because, you already have the tools to more than cope. You’ve learned them all already and you’ve already learned the greatest tool of them all, how to adapt.

Who survives?

I often think that after writing for four years, that I must have covered every single topic possible when it comes to living with chronic illness. Yet, every day, I sit down here and I start typing and every day, I find something to write about. I have never believed in the idea that you plan what you’re going to write. This theory that every story must be laid out with a clear beginning, middle and end, before you even start, just doesn’t add up to me. Nor that it has to flow bringing every single point within it, to a conclusion, as leaving some hanging, makes people think. Other than the last, if my posts do any of these things, it just happens, I never think beyond the next word, which always somehow, just appears. I’ve never been good at planning, for me. On a business level, I was great at it, I had to be, it was part of my job, but planning for myself, well, I never even tried. I know some people have their lives planned from today into the distant future, but just like writing, I’ve never seen the point in either. Yes, I’ve planned things like special meals or events, like our wedding, but when it comes to the average daily things, why bother. Life, like my writing, just happens.

I left school without a clue of what I wanted to do, other than to earn enough money to cover next month’s rent. I had already been living alone in the YWCA for over a year, and my father was to cut off all payments to me, on my 16th birthday. So at Christmas, I left school and started working on the 3rd of January, as a receptionist for one of the many oil companies in Aberdeen. The only plan I had was to save enough in 5 week’s, so that I could carry out my birthday present to me. To change my surname, so I had no connection to my family, and to put a deposit down on a flat, as I didn’t want to live in the YWCA, any longer. What would happen after my 16th birthday, who knew, or cared? Life did, as that was nearly 50 years ago and I’m still alive, married, owner of a nice flat and happy. I did it all without a plan, so why bother with them?

I never planned a career, yet, I always had a job and in the end, a good job, but I didn’t plan to get there, it too, just happened. I never thought that after my first marriage ended, that I would marry again, in fact, I was dead set against the whole idea, then I met Adam. I never thought, or wanted to own a home, yet once again, here I am, and I sure as hell, never planned to spend my final years, housebound and chronically ill, it, all, just, happened. Just as all this happened, I didn’t have a single clue, what I was going to write when I typed the first sentence. If I had been one of those people who had had a grand plan for my life, who had like so many other an in detailed plan laid out before them in their minds, becoming ill, would have destroyed every single bit of it. Could you imagine what that might have done to me? It would have destroyed me. Just as it destroyed so many people, people who fall into depression, because they have had all their dreams, and plans, snatched from them.

When I became ill, I didn’t have to learn how to go with the flow, I had been doing it all my life. I wasn’t thrown by not being able to do whatever I wanted either, as I did very little that I wanted for the first 28 years. I either did what I was told, or I did everything that simply had to be done. On top of that, I was already a homebody. I wasn’t one of those people who worked so they could pay, for that annual holiday, when they would jet off somewhere to lie on a beach. Yes, I looked forwards to holidays, because, they meant I could stay at home and spring clean my house, or do some DIY. I haven’t left the country since I was 12. The first holiday I went on since that time was when Adams family, asked me to join them in Arran for a week, I was 37 by that time. I had only one more holiday after that, again in Arran, just over a year later for our honeymoon. Good or bad health, my home is the place I have always been the happiest. In many ways, I know that that too, has made the lifestyle, that being chronically ill, has forced on me.

I was halfway through the second paragraph of this, when, I realised just where this was going. I guess my subconscious must have known, but I honestly, didn’t when I started to write, I never really do. Just occasionally, yes, there is a kernel of an idea, like when I wrote about the card, that my Mother sent me, but, I didn’t have the slightest idea what or how I was going to say what I did. Like always, I have meandered my way through this post, making individual points, and as I do so, I have drawn my own conclusions. I do actually believe, that if there is a type of person who will find chronic illness, not easy, but easier, it those who are similar to me. If you have planned your life to the last second, if you have grandiose expectations for yourself, then you are going to find this type of life, a total living hell.

There is also another thing that I have just thought of, that also possibly helps me to survive, I’m not a “what if” sort of person. I can also honestly say, that I haven’t once sat and thought about how my life might be now, if, I hadn’t become ill. Which is probably why I don’t have the feeling that I am missing anything. Where I am, what has happened to me, is just the way it is. All I can do is make the most of it, just as I have, where ever I’ve landed up over the years. There really is a lot to be said, for not making plans, and just living.

(No, I didn’t plan that last line either, it just appeared and rounded everything off nicely.)

 

Please read my blog from 2 years ago today – 22/02/2014 – Is stress the trigger?

Lately due to reading my old posts from two years ago, I have been wondering how it is that for two years I have written daily and not only daily, the posts have become longer rather than I would have expected……