They say when you watch something, it never does what you’re looking for. Well, mine eventually did. I’ve been staring at the phone on my desk, willing it to ring, for the incontinence nurse to call me and let my know what her boss said. When she did, you would have thought that she was reading out the results of some sort of competition, giving me all the points that they took into consideration, before just telling me what I wanted to know. They have looked at all the scan results and my history and present problems, especially those being caused by my intestine and bowels and for now, they don’t think that I need to have any form of a permanent catheter. What they want me to do is to be careful to be sure that my bladder is as empty as possible whenever I go to the loo. This means that I have to double void each time. For those who don’t know what that means, I have to stand up and move away from the toilet for a minute or so, then return and try again. I also have to use a method I have already been using for years, to rock gently side to side and back and forward, which as I knew already, makes the urine move out of it’s hiding spots and out of me. They believe that if I continue to do this, I should be alright until the problem with my bowels is sorted, when hopefully, the problems should lessen. She once more added that if I do find again that I can’t empty my bladder, then I must call for medical intervention immediately.
I didn’t tell her, but when I spoke to the district nurse on Friday, I had talked through with her, the reality of implementing her final point. She was just as I dumbfounded by the idea of calling 999, within minutes of finding I couldn’t empty my bladder. We talked it over and quite rightly she agreed with me that that was just not a viable plan. I can with ease sleep for 13 hours without once getting up to go to the loo. Therefore, my bladder, nor I, am in any type of danger for that length of time. That is, of course, as long as I am not in severe pain. As she said, I’m not stupid, I will know in myself if I need help or not, but maybe that guideline of 13 hours, should be my max. I am also not stupid enough to leave it any longer than that, as I am well aware that urine can turn toxic to my body with ease. Which is a problem for anyone, but for someone like me with a compromised immune system, something I need to be careful about constantly, hence the double voiding. Should I feel at all that I need help, then I should call NHS 24 or my doctor for help. There should be no need for me to be dialing 999 unless I know something is horribly wrong. Both NHS 24 and my doctor would be able to send out a district nurse armed with a catheter to my assistance. After that, well then we can talk it all through again and possibly include a detailed chat with a urology consultant.
I have come to the conclusion that the continence nurse who has been coming to see me, just likes to scare people. There was no need what so ever for her to have worried me the way that she did. She could quite easily have left here without saying a word about permanent catheters at all. Returned to her place of work and talked it through with her boss, then telling me, exactly what she did, when she phoned me. If she had done that, then I wouldn’t have landed up feeling as I did and I would have had a much better end to my week. I have learned one lesson from all of this, should I see her again, I will not let myself be wound up until she has checked her “thoughts” with someone else first.
I have to admit that I have been lucky and I haven’t come across many like her. On the whole, the medical profession has always told me their thoughts, but done so in a way, that it felt like they were imparting information, not telling me that there was no other option when there was. Just like the consultant who I saw about my bowels, he laid out all the possibilities, what they could and they couldn’t do and what they thought needed to be explored first, hence the enemas. Even though I left there knowing that this was the last possibility, but at the end of the day, if I couldn’t cope with it, the final option was down to me, I could request a stoma. When I left there, I felt a little shell-shocked, but I didn’t feel as though I had lost control. In fact, it was the total opposite, and it left me with a new problem, when and how to make that decision, and I still don’t know how to do that.
It took me many years to realise that the medical profession doesn’t have all the answers. What they have are possibilities. In an emergency, they make the decisions for us, but when it comes to those things that aren’t going to kill you in the next ten minutes, the choice suddenly becomes ours. No one can do anything to you without your permission, that’s clear as you always have to sign those disclaimers, but there are times when you want them to tell you, not suggest to you. About three years after I was diagnosed, my health was so bad that my Neuro offered me chemo. It was all explained to me, how it would affect me and most importantly, what they expected it to do for me. What they were offering me, was a way of turning back time, they could say how well it would work, or if the results would be long term, or just short, but it was the only option there was. To me, that was an easy choice. Without it, I was heading downhill so rapidly that I would have been a vegetable long ago. It didn’t feel like a choice, it was a no-brainer. Everyone wants to live, to be able to function as a person. I wasn’t going to say no, if I had, I would have hoped that they would have sectioned me and done it anyway. Where I am now, is totally different.
If the enemas work properly, they will not only move the faeces out of my body, but they will remove the pressure and pain that I live with daily. The short spell I had last month when it appeared it was working, I found a new appetite for food, I could breathe with far more ease and both the pain and pressure were gone, even my mood improved. It was wonderful. Now, we’re back at the start, it is as though none of it ever changed. If I have the stoma, well it removes the problem of getting rid of the faeces, and hopefully the pressure, but there is no guarantee it will change the pain in any way. The pain is caused by my nerves and removing them and my intestine, might not change the pain at all. I will also spend the rest of my life with a bag attached filled with poo. How do you choose?
This week, we’re stepping the enemas up to three times a week, if that doesn’t do it, I could have them every second day. How many weeks or months is a fair trial? What if they never give me the result that I want? Am I asking and expecting too much? When do I say enough and if I do, will I be any better off? This isn’t a no-brainer, this is a brain destroyer.
Please read my blog from 2 years ago today – 08/08/2014 – The small things
Once again I crawled off to bed at 8:30 and slept all the way through, which of course leaves me with a problem as to what my new drug routine is doing, as every night I have taken my drugs later, I have gone to bed early. Now that doesn’t make any sense to me at all, surely not taking my drugs should make me want to go to bed later not sooner, as I have shifted my routine and once……
You are one strong advocate for your own health!
Thank you, but I also hope that I say something helpful in every post for others, to find their own strength in. 🙂
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I find your posts very helpful to understand what may be going through in someone who has MS. I don’t normally have a lot to offer as a pharmacist but it helps to understand what are your every day challenge. Thank you for sharing your experience and to encouraging the strength in others who may be going through the same journey.
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Learned so much from this post, thank you. Also, it isn’t until you become really ill that you discover much of medicine is uncetainty.
We all expect our doctors to have a magic pill for every ailment, the truth is they don’t. But how they approach us, inform us or even just talk to us, can change a lot. None of us, including our doctors really know what the outcome of our health will be.
Take care 🙂
Inspirational in parts, with the insight only you could provide. A good read. Twitter bought me here.
Thank you for reading and I hope you return 🙂
I am sorry you have to contend with these issues. I understand the frustration when dealing with doctors & their vague responses. A short story if you don’t mind. There I was, laying in the ER. The CDC just put out an alert regarding tainted epidural shots. Black mold injected in your spinal fluid. The alert stated these injections cause fungal meningitis and needs to be treated immediately. I had three injections that were tainted. First the ER Doctor stated he know what meningitis looks like and I don’t have it. I told him this is not like regular meningitis, it is slow process than you standard meningitis. Again he offered the same response, how stupid of me to question his abilities to property diagnose any illness. I told him to look on the CDC web page and he will have a better understanding of this outbreak. I had a 1 of 3 letters from the pain clinic that injected me stating I had received a shot from one of the three tainted shot and instructions on what to do. GO TO THE ER AND HAVE A SPINAL TAP DONE IMMEDIATELY. He still insisted on his ability to diagnose meningitis. Now my wife is getting frustrated, she demanded that this well skilled ER doctor to call my regular doctor. He left the room and said my doctor said not to give a spinal tap unless I demand one. So now the decision is in my lap. Well if my doctor said that then it must not be a concern to them. Well the ER Doctor lied, my doctor told him to do the spinal tap asap. My wife and I decided to go home. 5 days later I was in the ER again different hospital. They made the decision to proceed with an array of test including a spinal tap. When did it become the patients choice too diagnose themselves? This is insanity, doctors one should be aware of CDC alerts and respond accordingly. Doctors should offer options and allow the patient, if they are capable and coherent if not allow the spouse to make an informed decision based on the doctors options and which one is the most prioritized. Not just oh well, I am god and what I say is always right. Anyway eventually I was diagnosed with fungal meningitis and on similar drugs compared to the likeness of chemotherapy for 18 months. 77 people died from this outbreak and over 700 people handicapped by it. I could have been counted as another death had I not gone to another hospital. So in a round about way I understand your pain, frustration, & the difficulty making a life decisions based on a doctors vague options. I pray & empathize for and with you. I wish I could provide words of wisdom that would help. Although, I would be in search for a better doctor. Keep us posted so we can pray for you & your needs.
Thank you, I know medics make mistakes, it took the NHS nearly 30 years to just diagnose me, but they got there. You were so right to have sought out a second opinion. Unfortunately, when it comes to the stoma decision, well it was a second opinion. The first landed up more or less the same, but without the enemas. Even the nurses have said that it has to be my decision, it’s all about what I can take and what I want. It has come down to just these two options, I have been through all the others and without any success. PRMS is a condition that is closing down my bodies. I though a few years ago, I had found the most painful and scary thing it could do, when it started playing with my lungs. I didn’t realise this was all just waiting to join in, less scary, far more painful.
I hope you haven’t been left with any more health issue from your brush with medical madness. I will of course continue to write, and to continue to keep everyone up to date with what is happening in my life.
Take care (((Hugs)))
You are an amazing young lady. Thank you for your kind words. I also understand if I do this will it be tolerated or add additional pain to what I have already. You are an inspiration to me and I am certain many others. Although, we share different ilnesses and pains, I can empathisize. God bless and you are being prayed over.
District nurses must be a blessing! I wish the USA had them. First learned of them in “Call the Midwife”. I always “double void”, didn’t know what it was called. Don’t have the stoma unless you absolutely must. Stick with the enemas. I’m not chronically ill, but have used enemas for over 30 yrs. Gives control!
We are so lucky to have the district nurses, unfortunately too many take them for granted. So far the enemas aren’t bringing the results that were hoped for, but we will see. There is still plenty of time to see if they will work or not. The biggest issue I have is the pain I am in. It’s a complex situation and only time will tell 🙂