At the minute, I feel as though all I am doing is complaining about one thing or another. Which honestly isn’t the normal me. It’s just at the minute my body has switched into hyper drive and takes great pleasure in confronting me daily with some issue or another. I honestly don’t know when I last had a day, where I can say my life has been normal. It has been a slow ratcheting up process and I know where it all started, as the base problem is with me every single day. The pain and discomfort in my abdomen was and still is the start point of every day. I haven’t been free of it now for over three years, but it was livable before, now it consumes my whole day. I am constantly shifting trying to find a way of shifting the pain areas or relieving the discomfort. The third batch of tablets that my GP prescribed have reduced the spasms dramatically, but the spasms are only part of the problem. It is the constant pressure and feeling as though one area or another is about to burst, that really gets to me. Once again last night, just before midnight I woke ready to throw up, but through a process of relaxation and breathing, I managed not to. I don’t know what it is about that point of the night, but every time I have thrown up, or been close to it, has always been just before midnight, eight hours after I last ate. Luckily this morning, I went to the loo, so it has reduced the pressure slightly, as always, what I passed was normal and it’s transit painless.
It goes without saying, that when you have problems like that with your intestine, you are going to have issues with your bladder. It’s either pressure that keeps you running, or blocks all real flow. The antispasmodic drugs mean I am having, even more, problems emptying it. I know I should just give in and use a catheter but as long as I can manage I will. I’m not getting any messages that it needs emptying and when I do, well it dribbles, flow, stop, dribble a bit more, stop then gush and so on. I am wasting more time in the bathroom these days than I care to think about, even more, in the energy draining trips required to get me there and back.
It would be bad enough if it were just my lower abdomen, but as always when one thing is upset, it upsets others. From my written history, it’s easy to know that it always upsets my breathing as well. The constant pressure from my stomach causes both diaphragm and intercostal spasms. My PRMS already causes me enough daily issues with the entire mechanism of breathing, without added extras. I had until a couple of weeks ago been really quite happy with my lungs. They weren’t perfect and I know they never will be, but I was content. Now I have sporadic pains appearing throughout my lung cavities, as muscles within them respond to the constant compression, all of which means that my oxygen levels are all over the place. At times, there is no doubt, that that is what is behind the lightheaded almost drunk sensation, but not at others. It is a feeling beyond a need to sleep, it is almost a desperation that is too hard to fight, but I do, especially in the evenings, as those hours are my highlight, the time I won’t let my health get in the way of.
As all of us know who have MS, if there is something going on in our bodies, whatever the source, it triggers our screwed up nerves. Thanks to the pain, the pressure, the difficulty breathing and anything else you can think of, my entire body is permanently alive with warped sensations. Every nerve seems to be alive and transmitting back whatever it chooses to at that second. Most of the time, it is nothing more than a gentle buzzing sensation, which shifts around my body, area to area. Frequently, it will simply consume me, holding me in a bubble of frenzied activity, then die away again, returning to simply passing the message to its neighbour, before resting a while and waiting to once more join in. That doesn’t sound like much, but when it’s constant, when the only peace that you can find from it, is when it is replaced by another bizarre sensation, or you attention is grabbed by something happening somewhere else in your body, it drains you. It also appears to me, to be behind another annoying symptom, the tremors. Frequently I have found that when the buzzing sensation becomes intense the muscle responds by twitching and jumping. They become hesitant in their actions and miss fire extravagantly, possibly amusing to others, but annoying to anyone who has to live with it.
I’ve been through all of this time after time, after time. All of these symptoms I know well individually, but when it turns into this clamour of activities, well it always comes down to my intestine. I know that if I could just get it to settle down, to return to its norm of odd spells of pains and discomfort, then that the rest will settle down too, but nothing is working. I quite simply don’t know what to do. How can an intestine that isn’t constipated, or actually even if it was, cause so much trouble? I’m waiting for what will be my third round of seeing a consultant. So far, not one has fixed it, one helped a lot by removing my constipation, but this pain has gone on for far too long. I don’t know what the answer is, but there has to be one, but until I see the consultant again, I promise not to complain and moan about what my stomach is doing to me. Well, not unless that damed pressure actually explodes.
Please read my blog from 2 years ago today – 29/03/2014 – Time together
For the second night in a row, I went to bed early and I slept like a log, normality for me as It only takes my head to touch the pillow and I know nothing until the alarm sounds. I count myself as so lucky that sleep is my peaceful escape from everything, yet I can’t help equally to curse it for taking so much of my life from me, so many hours wasted and gone, without the slightest memory of even one. I know I must dream, but for me it has always been the case that I just don’t remember them unless something really odd happens. My hours of sleep are like someone just switching me off, then eventually on again many hours later. It doesn’t matter how many times I tell myself that my body needs that sleep, going from a person who used to sleep……
Moan and complain all you want! This is your diary! We get it as we too have many issues! I really do understand and how else do we know we’re not alone in our symptoms and pain. I’m sorry you’re going through it. It’s terrifying when we find out just what our bodies can and are doing to us.
Hang in there and hopefully something can be done to ease your pain.
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I can’t begin to understand what you are going through, but I can empathize. I have relatives with the more common kind of MS and have watched their struggles. Just a thought…has your doctor ever tested you for non-alcoholic fatty liver disease? It might be a precipitating cause of your abdominal distress.
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I’m not sure, but looking at the list of symptoms, I think it’s unlikely as I’ve never had either high blood pressure or high cholesterol. I will bear it in mind when I eventually get the appointment to see the consultant. Thank you for think of this and me though.
Take care 🙂
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I am praying that at least one of your consultants can ease your symptoms. You are an extraordinary woman and I greatly admire your courage. Your blog continues to be one of the best I’ve read. Blessings to you.
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Thank you (((Hugs)))
I agree.. 😊
I agree too….. X
So sorry you’re struggling so much. It’s exhausting to manage all of these symptoms and to try and function. Never apologize for you being your authentic self. The world may not understand, but those of us who struggle with chronic illnesses understand the grief, frustration, and difficulty of managing pan and the importance of making sense of it.
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Sorry to hear about your pain, I also deal with chronic pain, may you find some relief soon.
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You summed it up perfectly about how an MS body feels (or at least mine) can I take you to my next doc appointment? It’s so hard for me to find words to describe how or what my body is doing. When I hear myself say things out loud I think I’m crazy. All of the research and reading I’ve been doing about MS I think I am in SPMS so I asked my doc why he thought I was in RRMS he said because I’m still presenting with new issues. He is right about that BUT, these issues popped up years ago and left and up and left and were all ignored by my younger self because work was too important and when I finally did start inquiring about them they were ignored by my docs..and now they are back and with new ones as well.
I hope he is being honest…I really like him…but most of my docs are in it for the money/kickbacks of the big pharma. He was real fast to put me on Copaxone and if you are SPMS Copaxone (or anything else on the market currently in the US) will not help. Sigh…I guess I will have to wait it out and hope that putting yet another medication into my body doesn’t kill me…some days, I wouldn’t mind if it did…just sayin’…MS SUCKS BALLS!
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The hard thing with the type issue, is they have to monitor you for several years before being totally sure. Just as my all my cognitive issues had to be tested three times, each a year apart, before they admitted what I was telling them, they were going down hill fast. Doctors have to have proof. What we say, to them isn’t proof. What they can test, record and measure, is. It’s tough I know to stick with them, but until you have been seeing them for their own set period of time, there is little they will do. Most will stick you straight onto the standard drugs, as there is a fact, no two people react the same. I have PRMS, but I still trialled the basic drugs, not one touched me, but it was still worth trying. Far better than doing nothing.
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It sounds as if your peristaltics were going haywire, sometimes pressing their contents back up into your stomach and making you feel like throwing up, sometimes pressing into the right direction, sometimes parts of them pressing up and other parts pressing down, thereby causing cramps with colicky pains and bloating.
I have no idea what one can do about it … your would have to ask a doctor.
I am so sorry, what you are going through sounds dreadful! You are so brave!
I have to say that is the first time I have ever heard that one, it does actually make a lot of sense. I know already that nothing moves through me at pace, I assumed once again due to nerve death, but the pushing back part, I’ve never heard or thought of, but it fits. Thanks for this one 😀
Hi dear, I am so sorry you are suffering. I just followed you recently, so I am not sure if you are known to some of these tricks against nausea but I will tell them either way. I suffer from gastroparesis and achalasia (motility disorders of esophagus and stomach, the ones I blog about) and I am very nauseous all the time. My food just won’t digest, so it sits in my stomach making me feel sick. What helps for nausea and digestion of food is ginger tea. Horrible taste in my opinion, but I got used to it. Other thing is camomile tea. Do not add anything (no sugar or honey), just the tea itself is best. Also, if you wake up feeling like you are about to vomit, take a wet cloth and put it to your forehead and neck. Also putting some water on your wrists helps. I have no idea why this helps, but this has prevented me from vomiting multiple times. I also take a very strong anti emetic, Zofran (generic name ondansetron), but that can cause multiple side effects that your body will not take well. Such as constipation, headaches and hot flashes. It is also dangerous to use when suffering from prolonged QT interval of the heart. There are also medicines that speed up motility which are domperidone (Motilium) and metoclopramide (Reglan) but mabye a doctor has mentioned medicines like this already.
Hugs and stay strong, you are very brave. ❤
I am already on metoclopramide and it is very effective when I am awake, unfortunately, I’m mainly sick in the middle of the night. I actually know and already use your tricks for that one, sometimes, my guts are just too determined to be rid of it’s contents, nothing stops it then.
If you don’t like the ginger tea, and I have to agree with you on the one, try ginger ale, not ginger beer, although it helps, if you don’t mind the fiery edge, but the bubble size is bigger and makes you burp badly, not good with nausea. Ginger ale is also easier to find if you happen to be out at the time. In fact, ginger in many forms will help, just some faster than others.
My food in general is getting well past my stomach, it always feels as though it is about half way down into my actual guts, then for some reason, it’s not. All I really want is for the doctors to tell me what is happening and to arm me with the tools to handle it, rather than just add notes to my file and send me home again. It’s gone on too long.
Thanks for your suggestions.
I don’t view this as complaining. You’re just being real and really that’s the best way to let people know what life is really like for people with long-term chronic illnesses. If you’ve read my blog you know I don’t candy-coat anything 🙂
I can really relate to the GI issues as mine have gone on too long too and doctors haven’t seemed interested at all until very recently. It can feel really awful when it goes on for a long time with no real hope of relief on the horizon.
That’s one reason I’m seeking IV Saline; to give my stomach a rest. I think it’s probably digesting less and less well (not to mention I’m not processing salt and water properly no matter how much I take by mouth) and now my oral medications are irritating it too.
In the meantime I’m thinking about trying honey because of some of the immune properties in it. Alot of stuff going on in the gut seems to be stealth pathogens that are reaching critical mass. Alot of research is bearing that out nowadays in a number of chronic diseases.
I always write the truth about how things are, but it just feels as though I had written about little else other than my internal workings. To me, it just felt as though I had said everything, more than once, so saying it all again, felt wrong and not very interesting for those who have read continually for months. Even I am getting fed up with it, but probably in a very different way, one much closer to yours. (((Hugs)))