Remind me, what are lungs for?

I had a bad night. Most of it was spent in a shallow sleep. Constantly been broken by the pain in both my stomach and my chest. I knew what was wrong, but there was nothing I could do, I just had to wait until my body, was ready for me to go to the loo. I had been uncomfortable all yesterday, so I knew it was on its way, what I am hopeful might be the last of these excessively painful episodes. If I have worked it out correctly, this is the last of the large bulks of psyllium, from here on in, it should be the moved by my two half doses, taken at different ends of each day’s food. My intestine had been niggling at me since last went to the loo three days ago, so the timing was right. I gave up on sleep just after 7 am, two hours later, at last, I found relief. Everything my consultant told me 18 months ago was true. Psyllium is, without a doubt, the substance to keep things moving, but it would do nothing to help reduce the pain. I am sure that he patted himself on the back when I left his office, and I admit, I was patting his back as well. Wrongly, I thought that having everything moving, had to help with the pain, it had too, it was only logical. I quite honestly didn’t believe that it was just going to continue and at times be even worse. I guess, though, that when the nerves that control everything starts to die, the strain put on the remain ones, is always going to be painful.

I had hoped that once that was cleared, that my lungs would ease as well. Normally, they react badly to the pressure that appears across the top of my abdomen, so I always accept there will be pain and problems at times with getting air. My diaphragm starts throwing spasms and extra tight MS hugs appear. They quite often burn and my oxygen levels plummet. Last night, several times when I woke, I wasn’t quite sure exactly what it was that roused me. The pain in my stomach was bad, my breathing was tight and difficult, and just for a change, I was also having palpitations and sweating. Why do I never just have one thing, a single thing that I can say “Yes, this is it”?

For years now, I have been personally blaming my guts for triggering everything that is wrong with my lungs. Admittedly, there were occasions when my stomach would seem quiet, and my lungs were going mad, but this last month, they haven’t given me any peace at all. Right now, despite the fact there is no pressure at all coming from my stomach, my lungs are more than unhappy. I have known now for a few weeks that my lungs are worse off, than I have not only not been admitted in here, but also to myself. I even went as far as not bothering to use my oxygen level monitor, because I didn’t like what it was telling me. I was used to living with just 93%, but when it frequently appeared in the high 80’s, I didn’t want to know. If that’s not burying my head in the sand, I don’t know what is. I have only been telling half the story, yes, I have been tired, I’ve been battling with pain in different places, slowing down and not being able to do as much as I once did, but the one thing that could be playing a part in it all, I ignored. I ignored it, because, like everything else in my life, I can’t do anything about it. I’ve already been told it is probably the thing that will kill me, but outside taking the tablets, using the inhalers and using my nebulizer, I or the doctors can do nothing about it.

The last time I saw my chest consultant, at the end of our consultations he asked me when I would like to come back. I said “About six months from now”, he said, “let’s make it four”. I guess he knew something I didn’t, that things were moving faster than I thought. I can’t remember the exact date, but I know that it’s at the beginning of March and for once, I actually have something to say to them. Yet, I am sure I know exactly how the consultation will go. I will tell them how things are, he will send me through to the nurses, who will run a couple of tests, he’ll look at the results, up the dosage of whatever thing he thinks will help my lungs to cope better, when being crushed, then he’ll smile nod his head and send me home, for another two or four months. It doesn’t matter which part of my body it is, that is what all consultants ever do for me, because, it’s all they can ever do, for most of us.

The predictability of Hospital appointments is one of the biggest symptoms of chronic illness that I know. The longer you’re ill, the more you start to spot the similarities, the mundane relationship between each of them. I have come to the conclusion that they are all taught that knowing nod, that feigned look of interest combined with great knowledge, followed by the reassuring murmuring of caring, but predictable parroting. It doesn’t matter what their speciality is, when they are dealing with someone that they know they can’t cure, can’t even really help, they all fall into the same routine. I have even found myself becoming more and more lost as to why they ask us to even come back. Surely, it would be easier on us all, if, they just wrote up a set of prescriptions, that tweaked the drug regime every few months, rather than making us go back and forward, over and over. The only problem with that is, that they wouldn’t get paid for having a full list, always up to date and always appearing fully required.

Neither they nor I can change what is happening. The only good thing about seeing them is that they help me track the progress of this damn illness. Occasionally, they give something away, just a clue as to how you really are, and what they really expect to happen next. But still, the biggest clue of all is the time to the next appointment. If it’s a year, you’re doing well, even six months isn’t that bad, less and you can start to worry, or start preparing yourself for what is coming. Right now, I am tired and if I stop writing now, I will have time for a much-needed nap. You see, it doesn’t matter what’s happening, something, just have to stay the same.


Please read my blog from 2 years ago today – 13/02/2014 – Why are you following?

I managed to free my pinky on my right-hand last night of the two rings that I thought would have to be cut off! I guess the reduction in fluid did help a bit, but add in the booster pill I took and I was able to just pull……




10 thoughts on “Remind me, what are lungs for?

  1. I’m sorry to hear you’re suffering so much.
    Just a thought… do you have an air purifier? I’ve had one for a month now because my lungs are damaged (bronchial asthma / bouts of bronchitis) and I’m fighting black mould in my bedroom, and I’m feeling the difference. I can send you the link of mine if you like? 🙂
    ((( Hugs ))) 🐻


    • I don’t have one, but unlike you, we don’t have a mould problem in our house. For me, the problem is mechanical. The consultants are purely trying to keep my lungs as healthy as possible, but my PRMS is the true issue.

      Thanks for your kind thoughts, but I doubt it would actually help me at all. 🙂

      Liked by 1 person

  2. Hi, I just want to share this. Have you heard of Wahls Protocol? Its about a doctor who has MS and managed to reverse it. I have MS too. Im only into the diet for 2 months now but I see improvements in my symptoms. Thought that this might help 🙂


    • I have tried so many different diets over the years and unfortunately, none showed me any change. I don’t know how long you have been ill, but there is a point where you realise you have to make a decision, alternative or conventional care. I have gone for conventional as I feel it offers me a better chance.

      I hope the diet continues to work for you, but for me, it’s tablets all the way.

      Take care 🙂

      Liked by 1 person

  3. I hope you are feeling better after a nap! Sounds like a very rough night, and I’m very sorry to hear about the pain and alarming situation with your lungs. I admire the grace with which you are navigating these rough seas. I know I don’t know you very well yet, but from what you’ve shared, I picture you like a boat or a ship on the ocean floating atop the waves without sinking and continuing forward despite the winds and rain that come and go. I hope that’s not too strange of a thing to say, I just got this image in my mind.

    Liked by 1 person

  4. Yes. The more closely spaced appointments but with less or no exams (e.g. preliminary X-rays or whatever) seem to be a good indicator of where (they think!!!) one is heading, That they will still want to see you is presumably part of reports and statistics. “I told patient X not to come back and do not know what happened to him/her since” is not very acceptable to health authorities

    Liked by 1 person

  5. My heart goes out to you. Being up awake at night not being able to breathe is a scary event. Doing it alone, with no one to take you to the ER, even if you know you’d never go in the end, is very harrowing. You are a brave, strong woman ❤ Soft hugs.


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