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…..

 

 

 

 

 

 

Facing the facts

I realised after I had completed yesterday post that I hadn’t mentioned what the Doctor had to say, eventually, about my mole. I phoned on Wednesday afternoon and luckily didn’t get the somewhat moody receptionist who I have mentioned in the past. It was to her email account that I had sent the photo’s. I did actually call back on Monday afternoon to check she had received it, as I had heard nothing. The receptionist who answered the phone had to check but then confirmed that it had arrived. By luck on Wednesday when I called back, my Dr was free to talk to me. He was apologetic, as he had asked that an email was sent to me, to let me know that he thought there was nothing to worry about. Because of the fact that it had changed, he wanted the hospital Dermatologist to check it out and had requested an appointment for me. All of which he said had happened on Monday morning, so when I phoned on Monday afternoon, she could have passed that message on to me, or taken the hint that I was seeking an answer of some sort and sent out the email as she had been told to. I had half expected the doctors response and that I would once more be on my way to the hospital to see yet another consultant. So, it’s just a matter of waiting for an appointment to eventually arrive.

When Adam was home for lunch yesterday, he mentioned that he had requested to have next Tuesday off. I couldn’t for the life of me think why he wanted such an odd day off work. After all, taking the odd Monday or Friday, allows a long weekend, but a single Tuesday is just odd. As far as I could remember there wasn’t a reason why he would want to be at home that day, but with my memory, well there might just have been. He said that it was so he was here for the appointment with the MS nurse. He thought that I might like some support when he came to see me, which was really nice, but he was coming to see me next Monday, not Tuesday, well that was what I thought. It is, in fact, another good reason why Adam normally opens all my mail or at the least reads it. I had got the wrong date in my head, it’s the 22nd, not the 21st. He also thought that it might be a good idea for him to meet one of them so that there is a note on their records that he is now quite clearly my carer. Hopefully, that will make things easier going forwards as they will at least know who he is if he needs to contact them on my behalf. I know he is right, just as it’s right that he now attends all my hospital appointments with me, but somehow someone coming to the house felt different. It took me a few minutes to get it all straight in my head and I worked out why I felt the response that I did. The flat is my domain, I am so used to the idea that this is my world and that I can cope within it, that I hadn’t even thought about the fact that this was an outsider, someone who is as likely to confuse me as many medical people do.

Every time that the MS nurses arrive, they start their visit with a questionnaire that covers all the basic things. Am I still able to dress myself? Can I prepare my own meals? How am I coping with my medication? Can I still wash myself? The list goes on and on, but for the first time in years, my answers are going to be so different. I hadn’t put that much thought into the time scale over which the most recent changes in my health had happened. Thinking about it has made me realise just how stark those changes are and how quickly they have all really happened. Our last meeting was just a year ago and it is like chalk and cheese, I have at last reached the point that not including his love and emotional caring, as I said the other day, without Adam, I wouldn’t any longer be able to cope at all. I don’t think that I have ever actually written or said that before, but it’s totally true, in one year I have gone from independent to reliant and it’s a fact that can’t be ignored. I guess that I have been playing games with myself, tricking myself by skirting around the actual facts and it is all too easy to do. Saying to myself that I have lost my independence and saying that I can’t cope are two totally different things, and their psychological impact doesn’t compare at all either. That is the equal beauty of our language and a huge danger zone for those of us dealing with medical issues of any sort.

Fact, there is always a nice soft cuddly word that sounds similar to those nasty spiky ones that none of us wants to use. It is too easy to sit here and make it sound as though there is nothing really that wrong with us when the truth is the opposite. There is also a huge difference between deluding ourselves and misleading our medics, the second could actually be deadly. As long as we are hiding the truth from ourselves, how on earth are we going to get the treatment and care that we need and probably deserve. Two days ago I sat here analysing my loss of independence. I wrote a whole post about it as though what I was talking about was being unable to change a light bulb, I just didn’t want to face the truth. It has all come to ahead simply because of my wheelchair, but that is now clearly just another symptom, it wasn’t the answer I was hoping for. Somewhere in the back of my head, I had this picture of sitting down over those wheels and the world would suddenly become shiny and new again. It wasn’t, and I have to admit that even an electric chair isn’t going to have that effect either. It will make life so much easier, but it isn’t going to give me back either my independence or my health, or make it possible for me to cope with life by myself. No matter what aids or gadgets we acquire, I am never going to be able to cope with normal everyday life again, fact.

It has never been my wish that Adam should leave me, but my measure has been for so much of my life, thanks to my first husband, “Can I really manage on my own?” Being able to answer “Yes” to that question was so important to me, that it has remained with me right through the last 26 years. Until the last 6 months, I was still able to answer it with a “Yes”, well there were a couple of tiny issues, like emptying the bins, but I was sure I would find a way around them. But for the bulk of everyday life, it was “Yes”, now it’s a “No”. I have been fooling myself in the last few months, no, “lying” is actually the correct spiky word and the true one. I was lying to myself, as the truth was just too painful for me, but I don’t have a choice any longer. I have become that person who has to be cared for, as without it, very quickly I would die. How long would it be before I took the wrong drugs at the wrong time? How long before I developed an infection because I hadn’t been taking care of myself, by washing and showering without someone to make sure that I did? How many important appointments would I miss? How would I manage having to speak on the phone on my bad days? How could I cope with dealing with people, without floods of tears or confusion? How could I clean the house? Do the washing? Sort out the shopping I can’t even lift? How would I just deal with everyday life? The answer to all of those and many more is always now in the negative and my need to no longer be on legs that don’t carry me, has just made every single one of them harder. I can’t cope on my own, full stop.

So I have said it! I have admitted it! Does that mean I accept it? Not quite yet, but I am getting there. Well, I hadn’t admitted any of it until in the last few minutes, it will take longer than that. Pouring my mind out onto the screen may be my way of writing, but it has a downside. I can’t control my brain and it often exposes things here first, then gives me the task of dealing with it. Yep, I hate my brain!

Please read my blog from 2 years ago today – 18/09/2013 – Professional patient

I took my first boosting 10mg morphine tablet, the pain in my ribs was really bad and yet again finding peace to just sit and watch TV just wasn’t there, so I took one. I couldn’t believe not just how well they worked but also the fact they worked really, really quickly! I don’t believe that I have…..

Arguments inside

I have been reading through old entries in this blog, it is hard for me to get my head round just how much I have written in one year, mind you if you write everyday if is bound to add up quite quickly. When you sit down everyday with a purpose that says you have to write exactly and truthfully, how you feel and what has happened in the last 24 hours, it may sound either really simple or really difficult. To begin with it was both, but now it is part of my life and like any daily ritual, you do it without a great deal of thought. Luckily it has become one of those rituals like eating, that I actually enjoy. I know I have said it a million times but finding things that you enjoy is really important, yesterdays blog kind of told me that again as I was left thinking about my future and wondering if I should just bit the bullet and try once again to get to grips with the program I have on my PC which allows me just to talk rather than type. I tried a few years ago to get the stupid thing to understand me but I wasn’t getting far, as I don’t know if it is my accent or my stutters and slurs, but what it typed and what I said were totally different things. As much as I love technology I also find it can cause more frustration that it is actually worth. I know that the program I have is several years old now, but it is so hard to find the right one for you without spending huge amounts of money, on something that may not work. I have taken many speech programs over the years on free trial, some on recommendation from others, but with the time it takes to get them to work for me is often longer than the trial. Those restrictions of course grew when I lost my income, so what I have is what I will have to use, like it or not.

There is though for me at least a big block in the way, it’s silly but I expect I am not alone in the fact that I don’t want to set up the things I might need in the future before I really do need it. It is a bit like if I worked on the program so it was perfect for me, it was then an invitation for my hands to stop working. Stupid to the nth degree, admittedly, but I can’t help feeling like that. Right now I could have grab bars around the house, walking frames and so on, all here to help me, but I can manage well enough without them. It isn’t just that I don’t want our home to look like a hospital, it is also that if they were there, I would disintegrate somehow faster than I am already doing. Getting past that has been impossible all the way through, I’m not sure though if it is coming from my pigheaded side or if it is coming out of fear of facing the future. Being an ostrich is all part of being human I suppose, but like the day I had to give in an accept my wheelchair, well it is painful. It’s pain that I can do without.

The other thing that I don’t like and that is what I am doing right now, arguing with myself, that was also what I did on the lead up to my wheelchair. Is this arguing actually all part of my admitting I need more help. By degree over the last couple of months, which I suppose even to the outsider reading between the lines, I have been constantly arguing. I have been slowing bit by bit admitting that I am moving downwards in everything, laying out what has changed and what is getting hard to do. None of my muscles are as strong as they were compared to a few months ago. Right now I can sight a perfect example, I have just been to the kitchen to fill my coke glass and fetch a biscuit as well. Stretching up into the fridge to put a new bottle in place to cool and then stretching the same arm to pick up the pack of biscuits from the cupboard, has left my are exhausted. Add in how my legs feel and I am a mess after one small journey to another room and back. But I am not mentally ready to give in, to admit to myself, far less the medics that I am failing to cope.

I don’t understand why I can write this but not talk about it, putting it down in words anyone can read, is admitting it, but it doesn’t feel that way. I haven’t had that discussion and I don’t really want to, I know 100’s read daily, yet there is still a feeling that this is private, just between you and me, and no one else. I guess that arguing is going to go on a little longer, it’s just my way of settling thoughts in my mind and for now they are anything but.