The start of the beginning

Something has aggravated my diaphragm big style. When I woke with the pain yesterday, I was sure that it was once again down to my intestine. I had been to the loo the morning before. That meant I was due to go again anytime in the next couple of hours. Knowing that, I brushed aside any concerns and I just got on with my day. Sure enough, about an hour after getting up, I went to the loo and the pain subsided. The worst of it was relieved and what remained was my normal background annoyance. I honestly believed that was it, the day would continue without any need for a booster pill. I do my best not to just reach for my 10mg Morphine tablets at the first sign of raised pain levels. I know that a lot of people wouldn’t even give it a seconds thought, but I live by a rule that says I don’t take drugs that I don’t really need. Pain has to be constant and bad enough to make my daily life difficult before I boost my normal background meds. To my surprise, despite having a not totally but reasonably empty intestine, the pain started to rise again within twenty minutes of sitting back here at my desk.

The pain was running along its normal track. Right across the front of me following the line of my lower ribs. Dull across the central strip and reaching a sharp jagged pain near either end. As long as I am sat here not doing anything beyond typing, it is livable. That doesn’t mean that it’s ignorable, just not bad enough to stop me doing what I want to. When you have lived with something unchanged for over 2 years, it doesn’t matter what it is, I have found that you do eventually adjust to it presence. Having said that, there are different levels within what I now call normal and this was above my normal background. I was nearing the end of yesterday’s post when I was suddenly aware that I had without realising adjusted my breathing. I was once again settled into breathing in a very shallow fashion. It used to be not just a conscious decision, but a real effort to make myself do it. Our bodies are designed to ensure we have more than enough oxygen in our system. Making yourself restrict your intake because doing so causes pain isn’t normal, even essential at times. It used to take intense concentration to find a level where I had enough air, but without straining against the already tight muscles. Even then I knew there might be a price to pay. If I didn’t get it spot on, my lungs would take a sudden gasp, that, is a pain no one wants to have. There have been a few occasions where I have found myself shallow breathing on instinct when I was lying in bed, but to find I am now doing it whilst up, kind of surprised me. I don’t know why, as it makes sense that our bodies start to adjust by themselves, it’s just to date this appeared to be the exception to the rule.

All day yesterday, there was no relief from my diaphragm. I did around 1 pm, give in and take a booster. The pain wasn’t only worse, it had by that point spread all the way around me. Still worse on the left than the right and the pain was by then travelling upwards into my armpits and on it’s way triggering intercostal spasms as well. By 1 pm it had reached the point where it was driving me nuts. Plus Adam was by then sitting in the living room. Shallow breathing and talking have never really worked together. I hadn’t thought about it until yesterday, but I think that might well be the reason that I manage weekdays taking far fewer boosters. Monday to Friday, I have no one to talk to all day, so my diaphragm can do what it wants and frequently does. Booster pills may take away the pain, usually, but it doesn’t change the fact that the muscles are still tight and not working normally. As the day passed, the muscles of my chest where determined to remind me at every breath just how difficult it can make things if they choose. Breathing when you quite simply can’t expand your chest is difficult, these so called hugs must once again been coming from a Polar bear. As long as I stay relaxed and calm, no matter how tight, I can keep myself breathing. I know it is probably my imagination, but I have become convinced that at times, I can actually control it right to the point that I am breathing using only one lung. I am sure that is impossible, but it does feel as though that is what I am doing. Between spasms, the odd sudden intake of breath and just fatigue from constantly being controlled, by bedtime, there wasn’t a muscle in my rib cage that didn’t at least contain residual pain. It was another night where I could toss a coin as to whether I went to sleep or passed out.

I have little doubt as to what today will contain, my ribs told me that the second I lifted myself off the bed. A thumping headache told me just how last night was as well. I haven’t had a bad spell like this for a few weeks now. Everything has been surprisingly quite, not painless, or discomfort free, just at a level that I could handle without any thought at all. When I don’t think about things, I don’t write about them. I just wish their absence from my posts actually meant an absence from my life. The biggest thing running through my mind is not how it feels right now, but how it is going to affect me in the future. I have had a growing awareness since the COPD exacerbation that on certain days, I am getting slightly breathless just doing things like walking to the bathroom or kitchen. It’s not all the time and I haven’t been able to pin point what causes it, other than it happens more often later in the day. To date, just as when my muscles go into spasm, if I stay relaxed about it and just breath steadily, it settles down. To date, though, I haven’t actually had both at the same time. I don’t have the slightest doubt that I would manage it just as I do everything else. What I am thinking about is the future where that might happen all the time and much more severely. I am beginning to think that it won’t be a case of one or the other killing me, but a combination of the two working together.

It’s odd how I still persist in trying to keep my different conditions totally separated from each other. I know this particular separation was first caused by the consultant. He did say that even if I stopped smoking, that my PRMS could still stop me from breathing. He gave it that picture of one or the other, where the truth will probably be that they work together. That was part of the problem during the exacerbation, I kept getting extremely painful spasms. Lungs filled with water when crushed by muscles that don’t want to let go, don’t leave much room for what should be there, oxygen. Probably the only really good thing you can say about being that ill is that your brain doesn’t have the energy to really grasp the situation yours in. I didn’t once perceive any danger, other than landing up in the hospital. That was enough to be terrified of, more than enough for any one brain to deal with at one time.

It two months on now, yesterday was the kick that I needed to actually start think about it. I seem to need to have something that upsets my normal life for a whole day before they make it past my determination to ignore everything and just live. The thoughts started last night and were still there when I woke this morning. What is happening to my lungs is a complex mix and I am going to have to treat it as such going forwards. Clearly shallow breathing keeps the pain down, but I doubt it actually does the congestion in my lungs any good what so ever. Just as my immobility and spending 13 hours a day flat on my back isn’t doing them much of a favour either. I already know that I hardly cough, I never really have. But the danger of infection has to be raised by all of that and infection is the last thing I need. It’s taken me a while to realise the impact, but the only thing I have any control of is my breathing. I can reduce the amount of time I spend shallow breathing, I might just be better off taking a bit more pain and a few more painkillers for my overall health.

This morning, the pain is still there and not only did I have a headache when I woke, but I’m tired. Not fatigued, I’m tired, which means my sleep wasn’t right. Overall, I don’t feel great, but there’s nothing I can do about it. As I said something has aggravated my system. I have a growing feeling that I am at the start of some kind of flare. I could be wrong and I really hope that I am. All I know is something is wrong, something is pulling me down. Life doesn’t feel right in so many tiny ways, none big enough to pinpoint outside of my lungs, but combined are enough for me to fear that this is the start of something.

Please read my blog from 2 years ago – 17/08/2013 – Thanking the past 

I can’t find the reason for it but for the last couple of days I have been somewhat emotional. Silly things happen or come into my mind and there are these tears fighting to escape from my eyes…….

4 thoughts on “The start of the beginning

  1. I REALLY HOPE THAT IT’S JUST A SLOW PROGRESSION AND NOTHING MORE.YOU DESERVE A BREAK.I WON’T BORE YOU WITH MY 3 DAYS OF HELL FOR ME, EXCEPT I HAVE ONLY ONE DAUGHTER(SIX KIDS),WHO GIVES ME A HUG AND TELLS ME “I LOVE YOU”. THEY JUST FOUND A BRAIN TUMOR.SHE’S ONLY 22.I CAN’T TAKE CARE OF MYSELF; HOW DO I CARE FOR HER?? THIS IS A CRUEL AND UGLY WORLD…THIS IS SO WRONG. SHE DOESN’T SMOKE, DRINK, DO DRUGS, NOTHING.WHY??

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    • Often when we are at our lowest life gives us a reason to push ourselves to be our best. She will need you, no matter how your body hurts or how you feel, being a mother is what will pull you through being there for her. It doesn’t matter how we feel, love is the one thing that puts everything else in perspective. No matter how ill we might feel, or how destroyed our bodies are, the love of our children and the fact that they need us, keeps us going.

      There is no right or wrong as to who becomes ill, or what causes an illness, if there were, only bad people would ever be ill. We both know that isn’t the way it works.

      Liked by 1 person

      • THANK YOU,FOR TAKING THE TIME TO TYPE FOR ME.I KNOW IT HURTS YOU JUST TO SIT. I KNEW WHAT YOU SAID…..I JUST NEEDED SOMEBODY LIKE YOU WHO UNDERSTANDS TO REMIND ME . THANK YOU SO MUCH, PAMELA

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  2. Thank you for the hug, I too live with many of the same symptoms each day, with the MS, COPD, and a host of things that end with itis, especially around the left rib cage with costochondritis. It becomes a real challenge, what strengthens me is the words of another sister or brother, and sharing my poems…I am always reminded it could be worse…but I find a perfect peace in sharing. Hugs and blessings!

    Liked by 1 person

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