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…..
When a Dr dismissed my pain or confusion I too dismissed it. Clearly this was detrimental to my health. We relie on them to know more and take care of us but it comes down to nobody knows what is normal for us and what isn’t. Sometimes we are lucky to find a Dr to listen and sort it out. Run the right tests. After all, that’s why they’re paid the big bucks.
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It sounds as though you too are caught with the same problem as me. I trust doctors too much. Why can’t I just say, “That doesn’t help me, or change the fact that I’m in pain”. As you say that’s what we pay them for. Just because the tests they did, didn’t show anything up, it doesn’t mean there isn’t a problem.
I guess we both have to grow a back bone 🙂
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I think I probably have. Hopefully soon I’ll be able to handle the MRI from brain to thoracic. Too much pain to lay still right now. My new neurologist needs this as it’s been almost 2yrs. I stayed with the first one until I could see she was done trying to be my Dr. I’ve lived with this long enough without any help. My patience is at the end.
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So empathise with this. A lot of doctors I’ve come across have been anything but sympathetic, and often seemed irritated with me going back again, asking the same questions, struggling with the same pain. The attitude is sometimes that we should get on with it and stop moaning. Thankfully there are some out there who really get it, or try to, and give their time to you. Sorry things are so hard. Chronic illness sucks.
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Maybe what we all need, is specialist in Chronic illness, not just in the condition that we have. If we all agree there is a problem out there, then surely there has to be a way to fix it.
I agree, it sucks big style!
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It’s not an odd post, it actually seems timely. My doc has put up with me for 23 years (and I say “put up with” because we have had some difficult, knock down, drawn out fights in his office when I’ve frustrated the stuffing out of him by not taking something as seriously as he would wish).
Do you feel comfortable writing your challenges down and emailing them to your doc? I can tell you, that’s made a huge difference in our lives for working together, as I refuse to live each day as if I’m dying, and he’s finally come to accept that I have value to add to my care plan as I’m not dead yet.
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I actually did write him a long description of what the problems I was having at one point. He read it, worked on some of them, and that was more or less it. Even when I have referred him back to it, his answer is always the same, he has done all he can to help me with those issues. Yes some did improve but others didn’t. Maybe, I am looking for the impossible, but I don’t believe so.
This is a very good and thought-provoking post! It seems to me that once you’re unaware of losing sensation they should start doing regular follow-ups to check out your body for disease-progression. That would be the best way not to ignore it or miss something. If you went to your doctor and said this it might actually be done. Tell him that since the new development you want to be proactive to make sure that you take as good care of things as possible.
My health has gotten worse lately and I now have to be very assertive to make sure my doctor doesn’t brush things off and ignore them, especially now with what’s going on politically where I have all my doctors.
I’ve gotten very bold now because I know that I have to be if I’m to get through this. I have no caregiver and no family to advocate for me and as I continue to decline my voice has to get louder to compensate. I believe that’s the only way I’ve made it thus far.
Sometimes it’s hard to insist and I worry I’m going to be viewed as a “problem patient” but now I no longer care anymore.
It’s come down to me or him now and when push comes to shove I’d rather ruffle a few feathers than to let things go too long, and in a sense my growing irritation has helped motivate me to continue to stand up for myself. My suffering with Dysautonomia has been ignored; a problem that should have been treated 3 months ago and wasn’t and I know that’s not a good standard of care.
You could also ask Adam to say something on your behalf about the pain needing something done about it if he can go with you. Sometimes doctors are more likely to do what a man says than they are a woman. It’s worth a try.
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Adam does come with me to all my appointments, but you have made me think that maybe what is needed is for Adam to talk more and to do so not apologetically as he does, but with a bit more assertiveness. He always starts every sentence with, “excuse me”, or “sorry can I just ask”. It might be at least worth trying.
I’m glad to hear that you are at last getting the care that you need. I so admire those who are going through chronic illness without a partner. I doubt I would cope so well on my own. I draw a lot of strength from Adam.
Take care (((Hugs)))
I read an article today about a chronic pain patient who took drastic measures (self-amputation) because he felt the doctors refused to help:
But the doctors said:
‘There is no evidence that amputation removes pain. In fact nerve pain is often generated in the spinal cord, rather than in the painful limb itself; so for many people, the pain continues. They can also get phantom limb pain after amputation, and therefore may be in a worse situation than they were before’.
Doctors can diagnose, advise, and prescribe, but when it comes to the treatment of pain, there’s only so much they can do. Because my TMJ causes referred pain in every one of my teeth, I asked a dentist once about having all my teeth pulled. Surely, I thought, if the teeth were gone, the pain would be, too. But that’s not how it works, and removing teeth can cause even more problems, including phantom tooth pain.
You’d think that numbness would decrease pain, like the drug Lidocaine. (Hey, that rhymes.) You’d think that having over-active nerves burned away might also decrease pain. But as many pain patients have learned, these treatments don’t work for everyone, or for very long. And they can make things worse, too.
I’m reminded of the episode of Dr. House when he treated a young woman with the genetic condition where she couldn’t feel pain. She had to go through a whole routine, every day, checking herself from head to toe. I believe diabetics who suffer from neuropathy have to do the same thing.
When you suffer from chronic illnesses, you become your own doctor. Paying a “professional” to advise you becomes very expensive (and is mainly for rich people). There are doctors who treat chronic medical conditions:
“Palliative care is a multidisciplinary approach to specialised medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness—whatever the diagnosis.”
There just aren’t many doctors who practice in this specialty, and those that do usually only work with terminal patients (a least in the U.S.).
In the UK the system seems to be that you are in the hands of general doctor until they can do no more and your time is limited, then your passed to the palliative care team. Your main medical care is still under you doctors, but the palliative care team give input to it.
I guess getting our care right is quite simply a difficult path to tread. It can feel as though we are the first to ever feel this way, as when you ask anything of importance, they never have the answer. Being our own doctor only helps, when you have at least the knowledge of others to support you. I get the impression quite often that not even the knowledge is there.
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