The start of an idea

The shadow of the night before hung over much of yesterday, but I was determined to shake free of it and move forwards again. You can’t make yourself breath in a different way when either asleep or going to sleep, but you can when you’re awake. Well, some of the time. I tried to make a conscious effort to take more air in whenever I could, or whenever I felt I was slipping slightly. It’s one of those things that the I just can’t say if it worked or if it didn’t. You can’t measure what didn’t happen, without know if it would have if you didn’t intervene. What I do know is that the morning was harder than the afternoon, but in the morning I am busier and distraction is equal to sleep, you forget to do things. I did have total failures, spells where I was clearly on the edge just as I was the day before, caught in the feeling that here wasn’t where I was supposed to be. But just like yesterday they passed, did breathing deeper make a difference, who knows. Just taking more air into lungs sounds so simple, but when you have those tight bands around you, it’s a true struggle. We are all programmed into not causing ourselves pain, I don’t need to even try taking a deep breath, I know what it does, it hurts. Pushing against that isn’t easy, but I can take in more air than I would if I didn’t try. It appears that I have fallen into a pattern of underestimating the amount I can stretch those bands before they trigger true pain. The only problem is it takes concentration, any distraction, even the tiniest and I fall back into normality.

After my bad nights sleep, I fell into a deep sleep within seconds of lying down for my afternoon nap, just as I did when I went to bed last night. The bad part is both had something in common, I woke with a terrible headache. In fact, I still have the one from last night, something I have often had in the past month when I wake. If this was the first spell of nightmares/hallucinations, then I would be far more worried by this than I am, but it’s not. I have just four weeks until I see the consultant and unless something dramatically worse happens before then, I am sure that I can wait. My lungs do have a slight wheeze to them in the last few days and yes, I have been short of breath just moving around. Again, though, I have had many spells of that in the past few year, so it’s not exactly something to start sounding alarm bells over.

I still find it incredibly hard to know when, or when not, to start getting worried about the things that I live with, or even if there is any point in worrying about any of it. I always find myself caught in two minds about making a fuss about things. I know that I am far from the illest person out there, but I don’t know when compared to those in my peer group what is counted as a medical emergency. To me, a medical emergency is something that means you go to the hospital because they can do something about it. Like a heart attack, where they can get your heart going again, possibly do an operation to stop it happening again and you carry on with an improved quality of life and also an improved longevity compared to doing nothing. I don’t feel that I ever fall into those categories. When you are living with a series of conditions that interlink to make life hellish, all that no one can do anything about, where is that emergency point. A mild rise in one symptom isn’t an emergency if I hadn’t had that, let us call it a dream for now, if I hadn’t had that dream and those feelings. I wouldn’t have mentioned it at all. Shortness of breath and pain are everyday events. Feeling fuzzy, light-headed and waking with headaches are everyday events. There is no emergency. Even the fear that my brain isn’t getting enough oxygen all of the time isn’t an emergency, it’s a fear, one I have had for a while and I am still here and still myself.

The doctors can’t fix me, there is no operations, no medicine, and no treatment. Yes, if it’s proved to be a lack of oxygen, they can do something about that, but I doubt they want me in A&E when I have an appointment in a couple of weeks. There are so many isolated events and symptoms that I and others live with, that at the time feel like the end, but never are. Which ones are the real problems, the real emergencies? There is also one other factor that I am sure every single one of us who are caught in this progressive illness nightmare struggles with, is there really a point in running to the doctor every few minutes. The ticking clock in the background of my life isn’t ticking any slower. I know that this is going to sound wrong but is there a point in running back and forward trying to make it longer? I know that my prognosis isn’t pretty, I have always known that. When you get as far along the path as I have, the questions about the end of that path start to grow louder. I like most, have no desire for a long slow painful end. One where I would need to be nursed through every day, is something I don’t want. I always had this view of my life as being that person who worked right through to my last hours. Just like my grandfather did, he collapsed at work and died within a week. That to me is the way to go, not lying in bed for months maybe years. Sometimes the idea of totally losing my mind or a bout of pneumonia sounds like a gift.

As I said, I knew that would sound wrong and it does. I don’t want to die today or even tomorrow, I want to live, but the idea of a life that is out of my control holds none of the things that I see as living. It’s so wrong that the biggest thing ahead of me is totally our of my control. I know I still have a long time ahead of me in which to work this all out, but it’s something that plays on my mind. I don’t even know where to turn to get any of those answers I am looking for. I don’t even know what help and support is out there for when things get to the point where life is truly tough and truly heading off where I don’t want it to go. How do you plan the rest of your life when so much of it is already written and you can’t actually change that? What help and support is even out there to turn to? My experience so far is that there is really very little, and that was the experience of someone who was still reasonably fit and healthy. Housebound is a major barrier to getting help, as oddly all the help that I ever found set up for those who have a chronic illness, requires you to go to them. What when you can’t financially afford to get there? Or when you physically can’t manage to get to them? Well, so far that has come back with a brick wall. The answer, even from those who should know better, is if you can’t come to us, well we can’t help. Being a none driver and living like most on a budget, has meant that on many occasions long before I was housebound but was in a wheelchair, the little help that was out there, was out of my reach. Now being housebound means there is even less than there was before. It appears that care and support are more a question of what you can do for yourself, when it should be what we need from them.

So far I come up with only one thing that seems to be for sure, there is no right or wrong answer to any of it. You are the only person there is to pursue and seek out what little support there is and even then, you are mostly on your own. How do you find out the options on your care when your health is beyond what you can do for yourself? Who do you turn to when you need to start planning and preparing for what lies ahead of all of us? If you want to plan your will or even your funeral, you can do that with ease and no one bats and eyelid or thinks it’s strange. But if you want to start planning your death and your care for the months and years before, suddenly you are some kind of alien. I don’t want to leave it down to chance. I don’t want it to be that sudden horrid monster that appears and you are suddenly at the mercy of the system. I want to know what might happen in all the variables that lie ahead of me and just what they are. It might sound like a huge demand or even a morbid one to some, but I don’t really have a life to plan for. I have already done that. I just want to plan what comes after so that I am not faced with a nightmare that’s out of my control.

Please read my blog from 2 years ago – 04/08/2013 – 1 hour is changing my lifeĀ 

Sometimes it take something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me………