A new path, a new train of thought

I found myself apologising to Adam once again for the fact my body does nothing other than fall apart. We have been married for nearly 17 years, when we married, I honestly didn’t foresee myself being in this condition for at least another 20 years, yet here I am constantly crumbling. Clearly, we had been discussing the visit from the podiatrist and the impact of what she told me, is going to be on both of us. That’s one of the constant problems of living with chronic poor health, it no longer just impacts on me, it impacts on us. Every small change, every new development influences both of our lives. Nothing, not even my feet, are just another part of my body any longer, they are another part that needs Adams attention. Yesterday wasn’t just a wake-up call to me, but also to him. It turns out, that both of us thought that my feet were looking better than they had in a long time. So to hear that it is in fact, the total opposite, has left us both at a loss and grateful that she is posting out a leaflet which will show us both, what to look out for. I don’t know if it has affected Adam in the same way as it has me, but I have found myself thinking about various part of me, and wondering, if I am also ignoring something else, that I shouldn’t be.

That feeling isn’t something new, it has just been given a new boost in its intensity. When you have an array of conditions, pains that appear and vanish as quickly, others that stay there nagging at you, well, you have to wonder just what is behind it. There was a time when I noted them all down and took them with me to each doctor appointment, now, well now, I mainly dismiss and ignore them. I can’t help though but wonder, if, I might just be ignoring something that I shouldn’t. Yes, our doctors are there to diagnose or put our minds at rest that there is nothing wrong, but if you were to run to him daily, he would soon stop doing both. So you start to ignore or you start diagnosing for yourself. It is amazing just how much you can put down to your main condition, I do it now, as, on the odd occasion that I have pursued it, that is exactly what the doctors have landed up doing. My course of action is just saving the NHS a fortune in tests and adding another fuzzy question mark to my collection of uncertainties. If the truth be told, I frequently still add one, even after the doctor has placed the blame at my PRMS’s feet.

So what do we do? If we run too often to our ever nodding doctors, they start to dismiss us, to see us as a constant annoyance. Their rules, say that they have to treat us, they can’t dismiss us or swat us like flys, but I have been faced all too often by those who I can see would just love to do exactly that. There are those who prefer to put our symptoms down to some kind of neurosis, or our misunderstanding of just what our conditions can do. No matter how strong other tell me that I am, I have never, found the strength to simply turn around and say, “I’m not going home again until I have an answer. I am in pain and that pain doesn’t go away. I need something done, something that is going to put an end to it. You’re the doctor, treat me!” I have lost count the number of times I have wished to say just that, but what do I do? I do what I believe far too many of us do, I nod in return and I leave with the exactly same problem as I arrived with, with nothing done to even help me in the slightly.

If Doctors can’t or won’t treat the things that are major to our lives, what chance do we have when our health turns silent and painless. Yes, we are now aware of what could happen to my feet, but I have been left wondering what happens when other sensation nerves die, when I can’t feel pain in other parts of me. On the surface, pain vanishing sounds like heaven, but, I now see that if any pain suddenly vanishes, the truth is, I probably have a much bigger new problem, than I did before. I can’t help but wonder, what my doctor would say if I were to phone him, worried about the fact, that some pain has vanished. I always knew that loss of sensation was part of my future, but for some reason, I never saw that as a problem. I never once thought that loss of sensation could be dangerous, well not beyond having no sensation in my hands, that one is obvious. But what happens if you can’t feel the fact you’re having an appendicitis or that you have kidney stones. Feet are simple, you or someone else can see your feet, but what happens when there is no pain in a place that can’t be seen?

I’m sorry if this seems like a somewhat odd post, but I have spent the last 24 hours, thinking about my future health in a somewhat odd way. Like everything else, all I can do is wait and see. That’s another problem that comes with chronic ill health, all we can ever do is wait. For every answer we think we have found, it always finds another question, another problem, one that we didn’t expect, one that wasn’t planned, to throw at us, and all we can do, is wait, for the impact to arrive.


Please read my blog from 2 years ago today – 24/03/2014 – Breaking the myth

“There is little or nothing that can be done”, that’s a phrase I have read over and over again in comments and posts almost daily since I started blogging and posting on Twitter, it’s also the identical phrase I have heard for much. much longer, from my own doctors. For all of us I am sure it isn’t just not what we don’t want to hear, but is also the one thing that we thought we wouldn’t hear ever again once we had that all so important diagnosis. So much so, that apart from getting us through the benefits system and an answer to all those who look at you as though you are a nutter and there isn’t anything wrong with you, a totally pointless effort in obtaining. I have written before…..