It will be a good New Year

The start of year nine, I don’t know what I thought would happen when I became housebound, but I never once thought that I would be sat exactly where I was nine years ago, counting the years. Mind you, do we ever look that far ahead of ourselves in our future reality. I know we all have dreams and plans, but that’s not the same thing, what I’m talking about, is really imagining and putting ourselves “into” our future. I don’t think any of us do, simply because we can’t truly see our future. It doesn’t matter how much detail we amass about our health, none of us can truly imagine ourselves in those final stages, not us, other people but not us. Even when we were diagnosed with whatever horror our doctors found, we didn’t actually look into our future in detail, only in the most general of terms. All of us draw up a worry list, almost immediately those words were spoken. It probably started with the fear of having to stop working, how we’ed pay our bills and would our families stand by us, or vanish as we grew iller. All valid concerns, but none, have a single thing to do with how we would feel, how we would survive mentally, emotionally and even physically, or how we will deal with our health vanishing and not being able to do anything we wanted. We don’t think of future pain, future inabilities and how long we will have to live housebound or bedbound. I for one didn’t think about any of the things, that really matter to me as an individual, not as a partnership, or a member of a family, I mean totally and narrow-mindedly about myself. Every single thought I had, somehow, included Adam. Now that’s not a bad thing, but as this is happening to me, why didn’t I think about me?

It was in the first week of January 2007, that I had to come home from work as I couldn’t manage my wheelchair as my left hand was dead. Not being able to manage my chair, meant I couldn’t manage the office and I was going to have to work from home. I don’t remember it ever entering my head that I wasn’t going to be able to leave here alone ever again. At first, I know that I thought it was just a matter of time, my arm would recover and I would be free again, but by the time it did, other things had progressed, and I was never to leave again. So maybe that’s why I have no memory of looking into what me true future was back then, because, I couldn’t see it, I couldn’t believe, that I was housebound forever. Looking backwards, it’s easy to see why we don’t see the truth, even when it’s staring straight at us. We lie to ourselves, over and over again, painting a glossy picture, as we’re us. What the doctors or those websites say, is about other people, not us. None of that, well maybe the mildest parts might, but the bigger, bader picture, no, not us. Those lies are what keep us sane, able to cope, able to get on and live our lives, even if that life is a lie, it’s better than the truth.

I remember when I was at the hospital for my chemo, and there in the waiting room was this lovely and loving man. He was sat there talking to his wife, who was sat in a wheelchair, not like mine, but one that she was strapped into. Her head hung to one side and her voice was so weak and so slurred that only he could understand her. He sat there wiping away the saliva that escaped the corner of her mouth, ever time she tried to say something. Although he was clearly engrossed in his wife and her needs, he took the time to talk to me. His wife was my possible future, she too was there for chemo, just two months earlier, she had been fine, then she had a flare, the result was there in front of me. I felt like a fraud. My health was bad, and I was creeping forwards far too fast, towards losing my job, but in comparison, I was fine. I still hope that the treatment worked as well for her, as it did for me, as I never saw her again. Even then, at that very second when we were facing each other, I couldn’t imagine I could ever be like that, because, I was me. Conceited, no, just self-defense, I didn’t want to believe, I didn’t want to see or even think, that such a thing could happen. My blinkers were firmly fixed and firmly closed, to my future. This, though, was the year, when I first saw a single sign of that lady, in me, and it hurt, it really hurt. None of us want to believe, the worst can ever happen, or the end is ever getting closer.

It’s been a year where anyone who has read my blog throughout it, will know that my health started to race, started to take me into places, I hadn’t wanted to even think about. The start of year nine, finds me in a totally different place, than the start of year eight. Even this time last year, I couldn’t see or believe that what has happened, would or even could, yet here I am, still me, but a lesser me, a somewhat diminished person compared to just twelve months ago. The new year is all about looking back and looking forwards. It’s taken me almost every year of my age, to realise, we are actually only capable of doing one of those things. None of us can even glimpse our future, without having touched it. When we look forwards, what we see is totally determined by just three things, our belief in ourselves, our attitude and hope, the strongest of the three, has to be hope. The belief in ourselves will take us a long way, if we’re determined, even our health can’t take everything we dream of away. Our attitude, well that takes us that bit further, as used correctly, it sees our dreams as never defeated, just needing that bit more work, but we’ll get there. Hope, well hope is going to make this a wonderful year, as it’s hope, that fills in the adds the gloss and the glamour, that makes life far more than just worth living.

My ninth year of being housebound is going to be another good year. I know that, I can’t see it, or predict it, I just know it. Just as I knew every previous year would be and was. Life is good, if you can smile and laugh, if, you can feel the love, of those you love, if, you can feel the care, of those you care for. Whatever our health does to us, well if we have all that, we can survive it, more than survive it, we can get on and live our lives, in hope and happiness.

 

Please read my blog from 2 years ago today – 01/01/2014 – Happy New Year

2014, well it’s only begun so I have incredibly little to say about it, yet, give me a couple of days and I am sure that that will change, but of course  I hope all of you have a Great New Year. I didn’t make it…..

 

 

 

 

 

 

Side effects

I’m still not really back to normal or anywhere near, but there are windows when I can share a laugh with Adam and I don’t think about my legs or the pain my my torso or anywhere else. I have to say with all the upset on Friday I totally forgot to mention the new symptom of pain in the center of my chest, which no Adam has nothing at all to do with my heart! I really think it is all part of what is wrong with my digestive system as it is always connected in time with eating or drinking, mind you I drink all the time, one of those things anyone who is on tablets all the time will tell you, you have too.

I actually a couple days ago sat and read on line what the side effects of some of my meds are as it had been said several times that the MST can cause problems with digestion, which I know could be part of it but I wasn’t on MST when all this started and switching didn’t make it any worse. I landed up laughing at all the things that could go wrong, just because of the tablets I am on and how many of the actually cause side effects that are actually normal to MS, and nearly all of them say they could make me sleepy. In the past I was on a med that was supposed to keep me awake, in layman’s terms it was speed, it didn’t effect me at all but I used to laugh at the result as I worked them out on a score system was I should have been on the ceiling asleep. These days the result of all my meds is I should be asleep and that’s it in simple terms, it works as I already sleep 12hrs a day. What actually made me read it, was something that was said to me in hospital. They raised a concern as to how effective any painkillers they could give me on top of what I already take. I know that I still feel pain, there is no doubt about that, but I have been left wondering what would happen if I say fell and broke a leg badly, what would they be able to do for me? You don’t think about these things until something happens, but I have been given a warning of the future. From what I can make out because I am on such high levels of painkillers, they really wouldn’t be able to give me much more, so finger crossed that I never need any higher levels for acute pain, as I’m going to have to manage it myself.

Teressa phoned me this morning on her way to work just to see how I am but I have been left worrying a little for her as things are just not going to plan with getting John over here in time for the wedding. I had been worried she was rushing making all the arrangements for the end of January, they thought he would be here for Christmas but that is not going to happen, all the details they thought they had sorted out for immigration has turned out to not be complete and they are now trying to obtain all the other documents as fast as they can, as with most things in life it isn’t as easy as they thought. I am not sure what they are going to do if there are anymore hitches, if they had to move the wedding she is going to be in difficulty as like everyone else there is a limit to the money they have, I’m not in a position to help either. It is great that she is back in the UK and wonderful that it means I get phone calls out of the blue, as well the cost doesn’t matter so much, but I really just hope that moving back here isn’t going to turn in to a nightmare.