A path to happiness

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…..

 

 

 

 

Worlds change

I was talking to my daughter earlier in the week, she was doing one of her check-up on Mum calls, but, it left me with a thought, that made me realise just how cut off, I am, from the world. To be honest, realising that was actually quite a shocker for me. I am one of the few who actually watches the news channels. No, I don’t mean for half an hour twice a day to see what is happening, I watch it. The News has always been important to me, but when I became housebound, it became an important part of my day. The first two hours of every day, is nothing but News, an hour plus around lunch time, and another hour of so around tea time. If something major has happened, well it’s not unknown for me, to stay fixed to the News channel for most of the day. There is something about not being out there, that has made the outside world and what is happening in it, essential viewing. I don’t suppose that that is too surprising really, but even politics has ceased to be a turn-off. The one thing that hasn’t changed, is I hate with a passion, the so-called local news, note, I don’t even give it a capital letter, it doesn’t deserve one. But, I digress. My need to be up to date, to know the latest state of the world, has become one of my driving forces. This week, with the terrible terrorist attacks in both France and Mali, and the Russian airplane being brought down by an explosion last month, has more than doubled my viewing. Teressa said something to me that made me realise something, I’m not connected to the world at all.

She has been talking for a while now about the possibility of a new job, which at the moment although having been offered it, she hasn’t totally decided whether or not to take it. John and she, have lived in London ever since they arrived in the UK two years ago. This job would mean them leaving the capitol and moving to a part of the country where they would be able to fulfil a dream of theirs, to buy a home. As we spoke, she out of nowhere added a new reason to move, neither of them, feels safe in London any longer. A few years ago, I would have thought of that, less than ten minutes after the news of Paris had settled into my brain. It never entered my head. I came off the phone, feeling cold at my detached state. How had I become someone who thought no further than the place I am sat? That in reality, though, is just how it feels. Despite all my efforts, to know the world, and what is happening in it, I have not been seeing the bigger pictures. Don’t get me wrong, I have a huge amount of empathy, for all who have been injured or lost their lives, and I fully appreciate, the severity, and the snowball effect, of what is currently happening, but I am still isolated from it all. It is as though the walls that have been surrounding me for the last 8 years, have slowly been getting thicker and thicker. Teressa’s reminder that she, her husband, people I know and love, still face the dangers of life, even though I no longer do.

I don’t know when the walls started to get thicker, how my feeling of isolation, somehow meant, that everyone else was also in glorious isolation too. I have lived for so long inside my cocoon, that I had forgotten what it means to actually be outside it. We all measure the lives of others, using our own as our baseline. My baseline is so far from the norm, that my measurement of the world has become warped by it. I had forgotten what it feels like to walk down a road, one moment in the warmth of the sunshine, the next, inside a shadow so dense that it has turned the world cold, as my life, is now spent always in the sunshine. I have nothing to worry about outside of me. I am under no threat, from anything other than my own body, there are no shadows. I have no job to lose, no children to pacify, no meals to cook or shopping to do and no bills to pay that aren’t covered. I have no need to look over my shoulder, to question the footsteps behind me, no friends to disappoint and no enemies to plicate, none of the realities of life, touch me any longer. I don’t quite live in a gilded tower, more a gilded cage, where someone managed to slip the cover over when I wasn’t looking. Is it any wonder that no matter how much I have tried to stay in touch, that all I have actually done, is to constantly learn the events, but not their true and ultimate impact. Yes, the facts of life are important, but so are the emotions, there is a clear danger that I had missed. When you live looking outwards, but only feel inwards, the balance is gone.

Semi-isolation, is not, a normal state for a human to live in. I am sure that I would be one of those people that trainee psychologists would love to do a case study on. I can just hear them squealing in joy, as they sat down and started to draw up a framework of questions and area’s to explore. What impact do 8 years or seeing few others than just one person do to someone? How psychologically balanced can someone remain without the normal interactions and pressures of life? I can hear them because I, and Adam, have heard the other side. The total disbelief that I can possibly be happy, content and not drowning in depression. Clearly, there has to be an impact, things that I haven’t noted, felt or seen, there must be, it’s only logical. The more time that you spend by yourself, the more you do look inwards. It isn’t meant with any malice, but it can be hard at times to hold onto, that those faces on the TV screen are real people. People with lives, people with feeling, people just like I once was, part of a bigger more vibrant world. At times, they even slip for two-dimensional all the way down to one. I have no line of reference to them, now way of connecting, as not only does the outside world often look alien now, it also sounds and feels it. It’s hard when your part of it, to understand what I just said, but it’s a little like having been in a coma for 8 years, one where some information filtered through, but still the world went on without me. Fashions change, people came and went, even some building managed that one as well. Words have snuck into the language that once didn’t exist, the entire make up of this planet, has changed in that time, and all I have had to keep up with it, is my husband, my TV and my PC. A vast quantity of available knowledge, but always controlled by what I knew, when I was last out there. How I react to that world, has clearly been changed by it as well.

Analysing my own life, is sometimes hard when you look at yourself with anything other than a mirror, well what you see isn’t always as pretty as you would like. Mind you, that sometimes happens with a mirror as well. We all change over time, but those changes are influenced by what surrounds us. I’m changing, but my surroundings, circumstances and company are identical, not changed in any way in all that time. As time goes on, I am sure I will miss as many of those changes as I discover. The good thing about the ones you don’t like, you can always change them back, which my unchanging world actually should make it easier for me, than it is for others.

 

Please read my blog from 2 years ago today – 21/11/2013 – The purpose of accountability 

It has been a strange sort of week, TV isn’t helping by being filled with little else than one of my favourite TV programs ever, “Dr Who”. I always thought that it was one of those shows that you grow up with…..

Even equations lie

It’s amazing, how when you stop just adding two and two together, to make a nice neat four and actually start looking around for the possibility, that there is another two lurking somewhere, that you actually start finding more and more of them. Unfortunately, life is seldom ever just neat little packages. There always seems to be those other strands of thought, that really should be included in the equation. Yesterday’s post really helped me to remember some of those fine lines of self-knowledge that get forgotten over time. I have often wondered if there would be any purpose in my actually going back to the start of my own blog and just reading it all, from start to finish. Part of me says that it is surely pointless, as I have lived it and written it, I know what is there. But there is another part of me, that fully realises that we all change, even in a tiny window like three years. I wonder if I did read it all, would I be surprised or disappointed by the thoughts and conclusions that I drew as I was learning to live this way? I know for sure that there is two thing that I would find. Firstly, disappointment, and amusement, at my learning process of how to write. Secondly, loads of little numbers, all waiting within my thoughts that I missed at the time, just waiting to be swept into my personal equation of life. All too often, I find myself writing when I am wrapped in pain. As you might have noticed, I don’t plan out what I am going to write about. I sit down each morning, come up with an opening line and then empty my brain onto the page. If you do that when you are in pain, the result is often filled with truths, that at the time, you simply don’t pick up on yourself. I know that both of those are true, simply because I have had cause occasionally to read a day from my past.

Despite the fact that the last month has been filled with symptoms running wild in different parts of me, my overall pain level is lower. Apart from moments of intense pain, on the whole, it has been manageable. Even the number of booster tablets I have had to take, have been not just halved, but quartered. I think that alone has added to my soul searching and inability to make sense of what has been happening to me. I know, you would think that with a clearer mind, and a body not in blinding pain, would make life easier. But when extreme pain and Morphine is your daily normality, life without them, feels vast and odd, so odd that I can’t even find the words. Even right now, when I am sat here with a diaphragm that has been in almost constant spasm for the last 48 hrs, if not longer, my pain level isn’t anywhere near where it normally is. I don’t understand it, it is so alien, that I find myself constantly questioning it. I have even found myself prodding at it, trying to trigger normality, but lightly because I don’t really want it back. Just a handful of weeks ago, I was considering phoning the doctor, with a request to raise my control Morphine dose. I was taking so many boosters, that I could only conclude that my twice daily dose of 70mg just wasn’t high enough. Now, I am quite content with them just as they are. The only thing that has changed in the same period of time, is the introduction of my wheelchair, the thief of my legs, and my new lung meds. One, or a combination of them together, has made a huge improvement in my life, but I am completely screwed up by it.

I remember writing a post a long time ago, where I posed a question about suddenly being cured and how I would cope with such a possibility. Clearly, on the surface, it sounds like a wonderful thing and those who have never been iller than a cold, would expect that I would step outside straight away and go and get a job. That is a shallow conclusion. I know for me, without a doubt that being cured, would be just as traumatic as being diagnosed, and a lot of people agreed with me. With a little considered thought, I am sure you will understand why. In some ways, this change in my life is contained in that same thought patterns. Losing the use of my legs is huge, even though they filled my life with danger in every step and I lived my life stressed by it. The fact still remains, we have legs to walk, I have legs for what purpose, two or three steps in safe areas, to complete my transition from one place to another. That’s not legs, that’s an aid. I might have walked nowhere other than around my flat, but I walked. Now, I don’t and that is emotionally painful. As I concluded yesterday, that is a reason to grieve.

So here I am safe, on wheels that I am at one with. That carry me everywhere I want to go, without banging into anything and have given me a new lease of life and freedom. That has reduced my pain levels in my legs, reduced my fatigue levels and seems to be a boon in every regard. Yet, I am still grieving my loss. If you still don’t understand, think of it this way. It’s like buying two puppies and one dies. No matter how much you still love and enjoy the one that lives, you will grieve for the one that died. This is just the same, but I haven’t lost a puppy, I have lost half my body. In the midst of that pain, I have a two huge improvement in my life. First, my chair, but second are the new drugs for my lungs. I actually didn’t think of that one until today. They are keeping my lungs more open. It is only when my PRMS throws one of it’s mad fits and clamps my lungs tightly, that I now find air hard to find. When they are milder, I can feel a change, I can get more air without having to fight with them in the way I did. There also used to be spells when oxygen felt reduced, I can only guess they were caused by smaller deeper and more internal spasms, where pain isn’t registered the same. Although still there, I don’t seem to have so many unaccountable spells of feeling short of oxygen for no reason. One of the inhalers that I use is a steroid. I know there are loads of different steroids and they don’t all do the same, but I can’t help but wonder, if that is somehow helping not just my lungs, but my PRMS in general. Steroids are one of the drugs used when I have a bad flare, it’s just a thought.

Yesterday, I added two and two and it equalled four. Today, I have added and added to that equation, as I said, life doesn’t happen in neat packages, there is always more to it. I am sure, that I if I sat and thought about it for longer, I would add more and more, but they would truly be small and would have nothing like the impact of the others. My normality, has been challenged, ripped apart and left in pieces, no matter how much better life is, when it is so different that it doesn’t even feel like your life, you will be left wanting answers. Questions, have one odd habit, instead of giving you just a goal to head for, they are like rabbits, constantly breeding. You deal with one and another is bound to pop up. I think if I did read my entire blog from the start, that too would be the result, so many questions that I didn’t really answer at the time and disbelief, at some of the ones that I did.

Please read my blog from 2 years ago today – 15/10/2013 – Taking the dream

You can sit all day, wondering and dreaming about what will never be, but it never really gets you anywhere, as dreams come in different shapes and sizes. I even once believed Adam’s dream that a cure would be found….

What next?

Please tell me what is so hard about just going to bed when you are tired? It seems to be something I am doing less and less when I need to and more and more because the clock allows me to. I have been pushing myself to at least stay awake until 9 pm, that way I have at least a couple of hours with Adam, but all to often, like last night I found myself sitting there watching the clock, wishing the hands to turn faster. If truth be told I wanted to go to my bed nearer to 8 o’clock, but at that point there were two things holding me to the settee, the second was the TV. I just don’t seem to be getting it into my head that I can now watch anything at almost any time, I have managed to get the message through my think scull when it comes to programs shown after 9 pm, but before it, I still feel I have to sit there and watch, just in case I miss something. I find myself all to often looking at the list of programs I have recorded or downloaded and wondering when or if I will catch up before the system deletes them. Is it me or is the stupid delete date, for a program you have loaded on to your hard drive, simply stupid? It has left me in the position that I now watch the ‘On Demand’ before I watch the recorded and they just pile up, giving me more and more reason to not sleep as much as I could or should. I so often look at my life these days and I see so clearly that I have replaced every pressure that I used to have through work with something else, be it the TV or what I do here on line. It is almost as though I have some need for a certain level of stress and achievement without which I don’t feel that I am functioning. I know I could sit all day on the settee, doing nothing else but watching TV, or I could spend the entire day in my bed, there is no real pressure on me to do anything. There is no one who stands over me asking for this or that in such and such a time scale, what I do and when I do it is because I want to, but still I have managed to turn it into a demand not a want, I have recreated the atmosphere of work, almost as though without it I just wouldn’t feel alive.

If you are going to win when it comes to living with chronic illness, routine is essential and I am not the only person who says so, all those I have met who are successfully managing their condition and their happiness, all agree on that one big thing, routine. If your day isn’t structured you start to drift and all to often do land up lying around making yourself feel worse and worse, as all you have is time to think about what it is doing to you and what you have lost. I think why I have structure my day the way I have is because I worked from home for several years, so it was a natural change for me to take the hours I worked and to replace them with the hours of writing and twitter. This, has become my work and I have also taken up the roll of demanding from myself a level of ‘work’ that means I am pushing myself all the time, just as I did when I was working. I have for a long time now known that I have actually taken it too far, I am putting too much pressure on myself and I need to change it, unfortunately to date I have failed to change anything that has had any great impact on my day and I know exactly why. I don’t want to admit that I am failing, failing to do what I have done now for 2 years. It is all part of the same circle that illness brings with it, you don’t want to admit that your health is stopping you from doing anything at first, but slowly you have to. You accept that walking stick, the wheelchair, the working from home and so it goes on, but every single one of those acceptances is really hard at first. Not being able to keep up with what I expect from myself now, is no easier than it was for any of those other steps I had to take. Just like fighting to stay awake for that extra half hour, I fight to do everything every single day that I have done day in, day out. I’m human, I don’t want to fail at anything or give up on anything, that allows me to be proud of myself. Illness strips you bit by bit, taking away this or that and you cover it up and move on, but eventually someone notices and you are forced to accept, being forced into to doing or accepting anything isn’t easy.

No matter how much warning you have that your illness is progressive and what that will eventually mean for you, you hold on to the idea that somehow you will be the one who makes it, that will manage to go so far but never reaching the worst case scenario. Every step that challenges your belief is as equally painful to take regardless what it is, having to use a walking stick took as much out of me as finding I couldn’t manage a zip any longer, what the step is makes no difference, they all hurt and you will fight not to take it. Only Adam and I now see any changes, but we don’t really talk about them unless something makes us do so, I know he is just as aware as I am that I don’t have a fraction of the ability I had just a couple of years ago. Some how I have found myself in a position were I know I have to make changes but I haven’t the slightest idea of how or what to change, or how to make it work. Change is really difficult to work out, as I said earlier routine is important, so what ever is changed, has to still be within a routine that I already knows works, but takes away some of the pressure that I now feel is building again. I guess it is going to be a slow process, which is probably a good thing.