Above and beyond

I made a breakthrough last night and it came in a way, I never expected. The pains in my abdomen were so severe, that I, myself, was beginning to think, that an ambulance might be a very good idea. There was no bloating, no feeling that there was anything there, other than what I had consumed. The pain had shifted from imitating first stage labor, to full on second stage, just not quite in the right places. Some of it was low down, but the bulk, was in the middle and yes, across the top and into my back. By the worst of each wave, it had taken over my entire abdomen, from my pelvis to my shoulder, and I could feel it right through my body as well. Each wave varied in length and with each, I found myself naturally controlling my breathing and rubbing my back. By early evening, the pain was causing me to break into a sweat and to feel sick. I tried an anti-nausea pill, but it didn’t touch it, which told me, it was the pain, not anything else.

At 8 pm, it was time to take my meds, but, I couldn’t trust myself, that I wouldn’t throw up, so I took the decision, to make myself sick. I couldn’t believe what I threw up. It was 4 hours since I last ate, so there shouldn’t have been much there, but I found, at least, a liter of liquid, mixed with almost everything I ate at 4 pm, but no psyllium pancake. The pain didn’t change, but the nausea vanished, and I took my meds with ease. I sat with Adam and we mapped out a timeline, not just of what has happened this week, but right back and we think, that my splitting the dose of my psyllium pancakes into two, and raising the dose, could be behind some of it. We think what is happening is the first is causing a plug if you like, that moves forward slowly, not a problem with 24 hours between them, as overnight a gap is formed. But if a second is added 4 hours later, well then there is nowhere for anything that follows to go. So, I am backtracking 100%, as of today, I am back on the dose I was on 4 months ago. It’s going to take a few days for my system to clear through, and at this second, I am in bad pain again. There is nothing that I can do right now, but put up with it, but just having a plan, somehow helps. If in a weeks time, I am still like this, then I will phone my doctor. I’m waiting because if I’m still like this, then I will be able to say that there has been a huge change, in what is going on and without a doubt, I can’t live like this forever and whatever the solution is, I want it.

I know that it will sound stupid, but I quite simply haven’t been putting two and two together lately. I have been feeling so rotten and so tired in the last month, and for some reason, I haven’t been associating the fact that this pain is most likely, behind at least part of that. Because it’s been all centered around my guts, I have continued with it, in silence most of the time. When I saw the consultant who put me on to the psyllium, he was quite open, that there was nothing he could do about the pain. Until recently, his solution has worked. I was never free of the pain, that was just one of the things that was part of my life, so I lived with it. There have been many days when things were just as bad, as they have been this past week, but, they were just days and they passed. When it changed and became once again difficult to rid myself of my intestinal contents, not because I was constipated, once they move, my stools are perfect, but because there just wasn’t any movement, I did what I thought was logical, increase the dose. I was trying to increase the bulk so that it would move, but all that extra bulk is doing, is causing me more pain, but I didn’t see that either.

It appears that intelligence doesn’t grow with age. That it doesn’t matter, how many years you pass through, when it comes to stubbornness and that stupidly taught stoicism, they only increase. Just because someone says “there is nothing they can do about the pain”, it doesn’t mean, that you have to put on a smile and live with it. These last few months, that is exactly what I have been doing and where has it got me? Somehow, I have separated the pain in my abdomen, including my chest, from the pain in the rest of my body. Why I have separated them, I don’t have the slightest idea, as the cause is exactly the same, my PRMS. Yet somehow, I decided that the results were two different things. When I contacted the Doctor last month about increasing my pain relief, I still wasn’t including this pain. I was looking for help with the rest of me, and that was exactly what I got. As I said yesterday, pain isn’t just pain, there are so many different sorts, and so many different locations and just as many cures. The Gabapentin deals with pain caused by nerves, this isn’t nerve pain. This is the pain from good muscles trying to compensate, for muscles that no longer work. They are having to shove like hell, to move the contents past the dead zones, and that also hurts like hell. The answer, I don’t have a clue. As my consultant said, the psyllium provides the bulk and the lubrication, it can’t do the work of dead muscles.

So right now, I am writing because I don’t know what else to do to take my mind off the pain, but as you can see, not even this is really working. Every time I have tried to pull away from “it” as the subject, I have landed right back there. I don’t have the slightest idea now what to do, as I have taken right up to my maximum dose of Morphine and although lessened, the pain is still here, still hurting, still draining me. As Adam is at work, I don’t have to sit here with a smile on my face, I don’t have to pretend that nothing is wrong, but oddly, I’m still sort of doing so. Even now, I can’t drop the act, it’s part of me, it is me now. That’s the problem when you’ve been ill this long, it’s actually really hard, to know where the real me starts, and the act takes over, or is it possible that I have been ill that long, that it no longer matters.

 

Please read my blog from 2 years ago today – 27/02/2014 – Hypochondria?

This is day 3 so I can now say with confidence that I have a mild dose of Bronchitis, the important but odd word there is “mild”, I’ve never had a mild dose in my life. I can only guess that my meds for my COPD is holding it at a low level, so I am just going to wait and see what happens, not point…..

 

 

 

 

 

29 thoughts on “Above and beyond

  1. Ugh, I’m sorry you’re in so much pain. You have my complete sympathy. Abdominal pain is tough to treat, and to me what you’re describing sounds EXACTLY like what I go through when I have a bowel obstruction. Have you ever had an obstruction? Cutting way back on fiber for the time being will definitely help. If it doesn’t start feeling better SOON, I worry that waiting a week will be too long. Maybe call your doctor’s office just to see what they think? If it gets worse, please get to the hospital. Obs are nothing to mess around with.

    Liked by 1 person

    • I’ve never actually had an obstruction, but I had considered it because of the pain levels. As the pain is in more than just one place and the fact that I have been to the loo, several times in the past week. I dismissed it. As I said, it all appears perfectly normal and actually going to the loo, isn’t painful in itself. It’s just the process of moving it through me.

      This morning, it has settled down a bit, back to first stage labor. I will see how it goes and if I gets worse again, I will call 911 at the very least and see what they say.

      Take care 🙂

      Liked by 1 person

      • I’m glad it’s getting a bit better! I didn’t mean for that to come across as pushy, if that’s how it seemed. I know you’re more than capable of crisis management – you’ve been at this for a while. I’m just a worrier 😉

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  2. I agree go to hospital and try to get some relief. If your leg was broken you would go. What is the difference? You need care and treatment. It does matter, you matter. X

    Liked by 1 person

  3. As you said, you’ve been tired and so much pain has caused inability to put it all together, going to the hospital is a good decision. They have the knowledge to put it all together and can take it from there to get you relief and make sure there IS no emergency. YOU are important to to your family and to us. Please go.

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  4. Honestly, I think we begin to doubt ourselves when doctors get tired of us and stop looking to improve our health and I know how ERs can be. They may roll their eyes and think “oh brother” but bottom line you should have your pain taken care of no matter what. It can be a big mistake to start dismissing things when you have new or worsening symptoms. Stand in the truth that there IS a reason. You or the doctors may not know what it is, but the absence of an identifiable structural cause does not mean it’s hypochondriacal. The body is a complicated thing and you are a human being who deserves to be taken seriously and treated with dignity even if to just have doctors help you come up with possibilities to reduce or eliminate your pain.

    I have come to the conclusion through my own difficult process that ignoring it and doing nothing is not the answer. I did basically that for 10 years and now I’m much more disabled. The problem could be on an electrochemical level if not on the structural level and for that reason oftentimes the standard tests might not find it. Even if it turns out to be some issue of brain processing or signaling your pain is still worth relieving, even if others react with less pain.

    The whole medical system is flawed and the real/unreal paradigm often applied in disease is not helpful. All it does is separate two tiers of patients; one whose structural tests show positive results, treated with respect, and those whose tests don’t reveal such results, relegated to a perpetual state of purgatory and their credibility called into question.

    It is the doctors who set up an impossible standard to “prove” the presence or absence of disease and in the focus on diagnosis the patient and their needs get lost in the shuffle. I’m sure this adds stress and then that’s used against the patient as further “evidence” of “nothing wrong”.

    This approach dishonors the patient and it forces them to “prove” every single thing in order to obtain what they need to relieve their symptoms.

    I’m facing a huge shut-down on my testing and treatment and this has totally destroyed my relationship with my GP that I’ve been seeing for 12 years. He has suddenly decided that I need to be protected from myself and that I cease to have a voice and thus has been scrutinizing every request and regarding me with cynicism and disbelief, thus prolonging my suffering.

    Bottom line; doctors need to understand that their place is not to be a gate-keeper and to strong-arm you into meeting their agendas, but instead respect that you’re a competent adult who owns your own body, and has the last word in how it is treated. If your current doctors and/or the emergency room will not respect your needs then tell them to go fly a kite and find somebody who does. You are important no matter how long you are ill. A life is a life and medical professionals instead of merely dismissing you after you don’t get well in a specified period of time need to understand that there’s still a human being in the body they’re charged with worthy of compassion and care. If it takes 30, 50, or 80 years then so be it.

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    • I am sorry to hear that you are having such a terrible problem with you GP. Mine is actually the opposite. He just loves sending me to the hospital for tests, without carrying out any himself.

      This current problem started years ago and I was told then, they could do nothing about the pain. I guess that’s why I have taken it for so long. Your right though, I shouldn’t. Who other than I, knows the level of the pain I am in and what it is doing to me. It is my fear of landing up on drugs that muddle my brain further than it is already. Pain is an issue that we all hate and I honestly believe that our doctors, are just as much at a loss, as to what to do, as we are.

      I hope you find the care you are looking for, and soon.

      Take care. 🙂

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      • I drafted a confrontation letter to my GP over the weekend and will probably fax it to him early in the week to let him know he is not helping by buying into the BS these neurologists are using to cloud the underlying condition. My GP rather than go against his colleagues has chosen to throw me under the bus and get in line with them to cover his own butt.

        Over here in America there seems to be pressure for doctors to blame the patient when they don’t get well after a certain amount of time. The ER was who really made things go off the rails and then it had a snowball effect and other doctors just followed suit after reading the ER notes. It’s a nightmare and I know the only way to really correct it is to get evaluations outside that system to dispute it and add those records to the ones where I go for my healthcare.

        I hope some people will start posting comments on my blog. I’m not sure whether they’re not seeing the box where to post or what, but the format I have on mine is that the place for comments is a little lower down on the page. They even put a box for ads to appear closer to my post. I’m not sure why especially when I registered and paid for my own domain even though it is a WordPress blog.

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      • I don’t know what the problem is, but I just clicked on your avatar, this would usually take me to your blog, I was going to check your lay out to see if I could give you my opinion. When I clicked on it, I was taken to a blank page. I have to admit, I have always found you through the reader. There may be a problem there.

        I hope your letter helps. I know what it is like as I had the same happen to me years ago. I was lucky, I moved house and the NHS lost my notes. So they started a fresh set. After years of fighting to get an diagnosis, I at last got one. So I totally understand what it’s like to have an adverse set of notes. I hope you get something sorted out 🙂

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      • Glad you were able to find my blog. So the comment box is not too obscure? Apparently in order to not have that ad box above it you have to have a premium WordPress account so that’s why it is up above the comment box. Still it does seem like they should put the comment box directly underneath the post. I’ve heard that comments significantly increase the search rating of a particular blog.

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      • I’ve never heard of that, but as you know from my site, there are loads of different placings of the comments box, some don’t have them at all. I guess it’s about finding the design that you’re happy with.

        I just tried your avatar on this comment and it’s still not taking me to your site? 🙂

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      • Got there! I had to find you in my followers list and that worked fine. I don’t see a problem with the layout. I find that I get about 1 comment from ever 10 or 12 visitors. Once one comment is left others follow.

        I have to say that I am guilty of not leaving comments. For some reason, my mind goes blank when I try to find something to say, but when something hits me, then I do. Unfortunately, I think there are a lot of people like me 😦

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  5. I am getting ready to try CBD edibles soon, some yummy chocolate covered pistachios I from a seller on Etsy. I’ve read alot about how these products greatly improve all sorts of conditions such as chronic pain, spasticity, sleep problems, seizures, digestive problems, etc. This might be something you can try if you’re interested. I don’t know what the laws are where you live but the edibles sold on Etsy have no psychoactive agent that would cause a high.

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    • It’s quite simple here, it’s illegal. Even the medically produced forms, can’t be just prescribed by your doctor, it has to go forward to a panel, who assess your situation. Even then, most are turned down due to the cost and disbelief that they work.

      I hope yours are successful for you 🙂

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      • Oh, that’s a shame. For them to be so biased against what amounts to an herb like any other when there are still people out there whose pain is not being relieved. I hope soon it will be legalized everywhere. There are cultivators who are developing targeted strains for certain diseases, and hopefully more research papers about positive outcomes will be published in esteemed medical journals.

        I’ll keep updating things in my blog about how it’s working for me. The woman who made these shipped them on the 26th, so I hope to get them early in the week. or by the end of the week at the latest. She recommended eating about 3 nuts a day at first and working upwards from there until I notice relief.

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      • Have the boards made a distinction yet between CBD, which is made from hemp, and THC, which is made from marijuana? If you can get hemp oil, which is often available in health food stores for its healthy fatty acids and made into salad dressings, you can simply take a teaspoonful four times daily, that is, with meals and at bedtime. This helps many people with cramps, spasms, and other symptoms.

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      • I just checked on line to see if I could by Hemp oil with CBD, as there seems to be a different types. It is available but would cost £140 per day in the UK, to take that sort of dosage, I couldn’t even afford to try it, far less take it all the time 😦

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      • Good heavens, that’s awful! How many ml do they want you to take, or is it in mg? I imagine they don’t grow hemp in your country, so you’d have to buy it on Amazon or eBay, wouldn’t you?

        I feel guilty now. I had my appointment to sign up for a medical marijuana card in my newly adopted home state of Arizona. I saw two doctors. The first was a pain specialist, who did such a thorough examination of my spinal stenosis (which is largely the problem at the moment), she uncovered issues I didn’t even know existed. The second one mostly wanted to talk about my service dog, but whatever, as long as he recommended me for the card I don’t care. Assuming my card gets approved by the State, I’ll be able to purchase enough plant material to make myself salves to calm my aching nerves, aching all the more at the moment thanks to the excellent pain doctor knowing exactly how to make them hurt. I hope it turns out to be a good pain investment…

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      • Were you trying to buy it online from a UK source or American source? If you’re allowed to order from the US you might get a better price or are you talking about the price you’d have to pay because of shipping?

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      • It was from a UK source. I might get a better price, but then the shipping costs would push it up. Oil is quite heavy, add in it being packed well enough to get it through all those postal systems. It would probably come out not too far apart in price.

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  6. It certainly sounds as if you have gut paresis. I don’t want to frighten you, but I must tell you that you are at risk for developing toxic megacolon, which is what can happen when the muscles don’t move fast enough and the bacteria have a chance to multiply too much. The fact that your symptoms lifted a bit after vomiting raises my index of suspicion. I really think you should not wait to see your doctor, since this is getting worse. You can tell me to sign off if you want to, but having read this it’s my duty to tell you my thoughts.

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  7. I have one friend with MS – as soon as one condition is alleviated another one crops up. She is such a brave lady. She always tries to keep a smile on her face and I love her dearly. I’ve also been there to see her fall apart because she just wants a solution. My hubby to be’s Mom has had MS fro over 30 years. She is wheel chair bound. She doesn’t go out much. There is always some kind of pain being felt. I admire her strength too. I think one thing people can over look is how physical illness and chronic pain has nothing to do with a persons mental state of mind. The two are so inter connected. I can only say I think you are courageous. I don’t know how I would cope with what you have to cope with daily. I do think blogging /writing is a great distraction xxx

    Liked by 1 person

    • I recommend writing to everyone, it is without a doubt, the best way to get things out of your head. No matter how many people we have around us, we can’t turn to them, to listen to us day in day out. I try not to tell my husband how I feel all the time, but he reads my blog, so he knows, but our time together, is ours, not my healths.

      I hope you never have to find out about the realities of chronic illness first hand. But if you do, you like the rest of us will find the strength is inside us to survive. 🙂

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  8. Pamela I would urge you go to your doctor. I have twice ignored severe pain and twice it nearly killed me. The first time was peritonitis the second septic shock. I’m not saying you have either of these things of course but I just feel it is dangerous to wait. I know that I ignored things because I couldn’t face any more hospital stays and all that goes with that. I live in France so it also meant speaking French which my poor MS brain can only sustain for so long before I become a jibbering wreck making no sense in any language! Both times my GP failed take my symptoms seriously enough to realize I needed to be hospitalized. With the sepsis he actually admitted to my daughter that he should have realized how ill I was. I also have severe intestinal problems causing pain, constipation, diahorrea etc etc so I understand how you feel. I now have only one functioning kidney after the sepsis which I have to maintain with a lot of meds and a very strict low potassium diet. Any pain in the area of my kidneys, back etc scares me to death and I can worry for days wondering if I should do something about it. Then it will lessen for a while and I calm down a bit. Because I am so disabled my GP comes to regularly now and I have regular blood tests and urine tests. I know in the UK it’s not quite the same and getting to the docs can be a struggle. Please take care of yourself, life with chronic illness and disability is so hard I know how easy it is to explain things away to avoid the next struggle. ((((Hugs))))

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    • Do you do mind reading for a living? If you don’t understand, you will if you read tomorrows blog, which I am half way through writing. The idea appeared and I knew if I waited for tomorrow, I would have forgotten it. As you say, our MS brains aren’t to be trusted, especially when needed.

      I have spoken to my GP and things I hope are in hand. It is very different here in the UK, getting a doctor out to your home, even when your housebound and can’t get to them, is almost impossible. Mine though is at least enlightened enough, that when I call, he phones back within a couple of hours. I’m waiting for a hospital appointment, with his permission to call if I need further help before. Not sure what he can do over the phone. LOL

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