I have tried so many times to analyse why I manage to be housebound and happy, when so many, find it hard enough dealing with just being chronically ill. I always come back to a short list of things that I believe have made the difference, but even that doesn’t feel like the full answer. Briefly for those who don’t know what they are,
1) Making your home the most pleasant, luxurious and comfortable, that you can financially afford to make it. A simple logical step, everyone is happier if they are comfortable in their surroundings.
2) Stay busy, don’t just sit in front of the TV, have hobbies, be online, whatever fits with you, but stay busy and stay entertained.
3) Have a routine that keeps you living at the same time of day as the rest of the world. Don’t start sleeping all day, and being up all night. Get up just as you would have when you were working and have a bed time and stick to them. Humans are creatures of routine, some may not like that, but we are, boring or not, we do thrive on it.
4) Have goals, big ones, middle sized one and small ones, the size doesn’t matter. It can be anything from writing a novel, to just making your own lunch or even cleaning your teeth, you must have goals and loads of them daily, a personal todo list with bells on, that you can keep chipping away at daily.
5) Following goals, comes achievements, that is the whole purpose of them, we all need to be able to pat ourselves on the back at what we achieve daily. It takes us more effort to do those things so achieving them is a big thing, feeling proud of ourselves is a fabulous mood lifter.
6) Be pigheaded. Don’t give up on things, just because something fails once, doesn’t mean you are a failure. Clearly there is a point where we all have to accept we can’t do certain things any longer, but as long as you have tried and been determined, we can say you didn’t give up, then you can never be a failure, just ill.
7) Don’t be hard on yourself. You have to love yourself, you have to be able to give yourself permission to stop, to rest and to take some time out, if that is what’s needed. You have to learn to strike a balance between number 5 and 6.
8) Having someone who cares for and loves you. That can be a partner, a child, a friend, a carer, a neighbour or even a pet. It’s the feeling that matters, not where it comes from, or where we are returning it to, but our emotions need a focus to feed from and an outlet to pour them back too.
As I said, it’s a short list, but those eight things, always seem to me to be the most important thing anyone needs when it comes to surviving being housebound. It doesn’t seem much when I just write it down like that, it actually seems kind of obvious, as, without those seven things, anyone’s life can be hard. In many ways, that is the point of this post, it’s the one thing, I think, that so many people miss, housebound really isn’t any different from life anywhere else, it’s just life.
I don’t know what it is that other see as so hard about being housebound or chronically ill. I have questioned that over and over, and to me, if there is a problem with it, it more that we believe there will be, than anything else. Clearly, the physical aspects of illness aren’t pleasant, but even they, I believe are imagined to be worse than the reality. No, it’s no party, but once they get your meds right and you learn what is required of you, to keep your own personal monster happy, life does get easier again. Plus there is actually a saying that is truer than many think, “You really can get used to anything,” even pain. The picture painted by the media and our imaginations when it comes to chronic illness is of someone who is frail, almost withered, sitting slouched in a wheelchair, constantly in unbearable pain, unable to speak or make themselves understood and being spoon fed. That might be for many of us our ultimate destination, but there are many many years for most of us, in a life far more normal, than most think. Many, like me, manage to hold down a responsible position within a company, where my work and decisions had a huge impact, not just on the company, but the staff. From onset to housebound, is a very long road and one were many observers don’t even see. That is actually I believe is part of the problem. People fear those words “Chronic illness” because they only see it from the start of the closing phase and mainly never see the actual close.
By the time I eventually left my office for the last time, my staff had become used to seeing me buzzing around the office in my wheelchair. I had lost a lot of weight and was being fed by a nasal gastric tube. I wouldn’t be surprised if you tracked one of them down and mentioned me, that their first words would be “Is she still alive?” The assumption would have also been mine, if the shoe had been on the other foot, my knowledge of chronic illness prediagnosis, wouldn’t have fitted the reality at all. I am almost certain that if all of us who are ill, were asked to compare our reality with our pre-illness belief of what it meant, all of us would paint very different pictures from our realities. That I believe is the real problem, that for far too many years, our real lives have all been hidden from the world. Until very recently, it was expected that if you were diagnosed with something like MS, that you gave up work instantly, as you wouldn’t be capable of continuing, and not for just MS. The old expectations and behaviour has led to the world believing that a diagnosis is as good as a coffin nail. People are clearly not just scared of being told they have a chronic condition of any sort, they are terrified. They don’t know or even have any expectation that their lives can continue almost unchanged for many years, in some cases, for their entire lives. Life can go on and it can still be a good life. If they are terrified by the thought of getting ill, is it any surprise that they can’t get their heads around being housebound as well, to me, not at all.
I can’t speak for the rest of the world, but here in the UK, all of this hasn’t been helped by our benefits system. It is something that is being rectified now, but the assumption was until recently, that a diagnosis was a ticket to the easy life. You could give up work and receive, no not a huge sums of money, but more than enough to live, especially if you were in rented accommodation. When I was first diagnosed, Adam and I went along to an MS support group, we only went 4 times, as there was no real support at all, unless you were having problems navigating the benefits system. That was the only thing they talked about, how to claim and how to get, every penny out of the government possible. We went because we wanted to learn about MS, I was wanting help with how I could as time went on stay working, but we found none of that. There were people there who were far fitter than I was at that point, who had already given up work, simply because they could. It was like a badge of honour, they had MS, so they were due a living from the state, it was as simple as that. I don’t blame them, they were just following their leaders, the people who have lived that story over and over as far back as the creation of the welfare state. As I said, it’s changing now, but it’s a long slow road and it takes time to re-educate people’s expectations.
Until the time comes when people are more willing to talk about their health, and the reality of life with chronic conditions is common knowledge, the fear won’t go. I think that that fear is what still holds onto even those who do have a condition, when it comes to being housebound. That is a much harder fear to break. By the nature of the word, no one sees us. How do you teach the world not to be scared of something they can’t see? It is as hard a job, as teaching it to not be scared of disease, full stop. It is an irrational fear to even have. Are you scared of going home to your own house? Are you scared of having to stay in for a whole weekend, or even a couple of weeks if you are ill? What is there to be scared off? There is nothing now that can’t be done online. I can shop, speak to people, see a movie anything that I once did when I was out and about, I can do now. So OK, no I can’t go to a restaurant or a party, but they aren’t thing you do every day, the are blue moons. Everyday life is as easy and as enjoyable when housebound as it was when I was mobile, in someway’s better. I don’t have to worry about clothes and makeup, freak about deadlines as I can never be late. I don’t have to worry about buses, taxis or trains, I health has ridden me of so many pressures, that at first, my health even got better. Like so many other things, our fears towards anything is learnt. Just as no one is scared of the dark until some nice person tells them about monsters and ghost, no one would be scared of living my life, if someone hadn’t planted the idea in their heads of just how bad it really must be. Well really, it’s not.
We are the only people there are who can teach future generations that OK maybe having a chronic illness or being housebound isn’t something to aim for, but it isn’t something to live in fear of either. This circle has to be broken, life goes on, it’s changed, but it still goes on.
Please read my blog from 2 years ago today – 01/11/2013 – Positive about me
How we see ourselves and how we see our role is something that actually grows, not diminishes as illness redefines us. It can be hard to just look in a mirror or to try to cover the body we don’t recognise with clothes…..