Side effects or just life?

The final bag of meds arrived yesterday afternoon, I now have the supplies to keep me going for a whole month for the new ones and two months for the rest. All Adam and I had to do in the evening was to work out how to use all the new equipment. Yes, I did say all, something else arrived with my meds. I have a vague memory of seeing someone in a hospital a long time ago using one but had totally forgotten about it. It’s called a Volumatic Spacer Device and is a rather odd looking clear plastic canister. Two cones that you slot together and put one end in your mouth and spray the inhaler into it, rather than straight into your month. It is supposed to ensure that the drug is being delivered deeply into your lungs and belongs to the new steroid inhaler the consultant ordered for me no Monday. He never mentioned that it came with this strange looking object. Between it and nebulizer, my drug routine has grown ten times in length and has become a real palaver rather than a couple of tablets. Anyone in the past seeing me taking my meds might have wondered slightly at the array of different tablets, seeing me now, they would have only one conclusion, this person is really ill. I suppose that is partially what has been getting to me over the last few days, now it’s all real, my imagined picture is reality, I am really ill.

It’s odd the games that we play with ourselves. The way that even once I was housebound, I somehow shuffled it into the normal box and got on with it. How could anyone go through all the things that I have and still be able to think of their health as “normal” on the scale of human health? Give me a couple of months and I will probably be shuffling this into the same “normal” box. Right now, I am still feeling rather overwhelmed by all of it and it’s not just me, as Adam the other night said that it felt as though this week was never ending. It just all feels like it has been one thing after another and none of them has just happened simply. From Sunday evening on it has all felt like it’s been an ongoing fight, Adam and I against the world and not because we wanted it, but because that’s just how the world had delivered it. Even when the last bag arrived and I dared to think well this is it, all over, that front door is now shut and normality can settle back in, was shattered in second when I unpacked and found the Volumatic. I had everything new on the counter and I was sat on my perching stool looking at it, all that stuff, where was it going to go. The cupboard that I took over several years ago to store my meds is already packed tightly, here is even more stuff, loads of big boxes with nowhere to call home. It appears that I don’t only need to change cupboard around, I need to clean out anything that isn’t needed and make space for the invaders. No matter how much I love Adam and appreciate all that he does for me, he isn’t exactly a domesticated person who cleans out the kitchen cupboard before the shopping arrives. For years, he has just kept adding without really checking, what can go. Out of date stuff, not too bad, but unused, never will be used again, total failure.

I don’t normally read any of the leaflets that come with my meds, as I am a great believer that most side effects are imagined, thanks to people panicking after reading those sheets of doom. But the sheet that came with the Volumatic was as always in print only a spider could read, so I had to go online to find out the correct way to use it. To my surprise, it said that it wasn’t just to get the drug into you properly, but to help avoid some of the problems that these drugs cause with the inside of your mouth and that to be safe, you should clean your teeth straight after use. Part of me wanted to find the drug next and read all it had to say about it, but I again thought better of it, but I was glad for the warning. 8 pm came and the first round of new regime. It was Adam who suggested one change that I hadn’t thought off, instead of my going to the kitchen to take my drugs, he would sort them out and bring them to me here in the living room. That way it meant that I could sort out the two breathing apparatus and get on with taking it all. I sat with the nebulizer on for the about the same amount of time as I did on Monday at the hospital, then stopped it to see how much more I still had to go, I wasn’t even half way through it. Clearly the nurse had been in a hurry, as I remember thinking that her 15 minutes I was supposed to have resting had been on the short side. The biggest problem I had was saliva. Actually, I think it was that plus a large dose of the mist turning back to water in my mouth, either way, I kept dribbling, not exactly comfortable or attractive. A full ten minutes of sitting with a stupid blue tube in my mouth and machine so loud that it drowned out the TV, at least the other one was silent, stupid looking I am sure but silent.

Over the next hour, instead of my breathing getting easier, it was getting more and more stilted and small sharp shallow breaths, ones that sitting on the settee I was finding impossible to control. I was also aware of something else, my heart seemed to be thumping like mad. To me it was all wrong, wasn’t the whole point of the all of this that it was meant to make things easier, not harder? I didn’t say anything about it to Adam as I couldn’t help thinking that I had wound myself up and just put myself into that state. All I needed was to go to bed and rest and it would all settle down, it didn’t. I had been in bed for more than 15 minutes and my heart felt like it was trying to escape. I attached my monitor and was shocked to see that my heart was beating at 118 bpm and my blood gas was just 84%. Clearly you don’t need to be a doctor to know that that just wasn’t right, I, though, just went to sleep. This morning I decided to try taking the Nebulizer and the steroid inhaler the other way around. It worked to an extent, my heart rate an hour later was at 98, my normal resting rate is 84, but any movement just standing to read the TV screen can throw it up to 110. I’m not sure, but I don’t think this idea of putting three different inhalers into my lungs all at the same time, isn’t exactly a good idea. I think they could be mixing and causing problems. So tonight, I am taking my Seretide at 7 pm, my Nebulizer at 8 pm and the Aclidinium just before I go to bed and splitting the morning dose in just the same way. Oddly I remember apologizing to both my heart and lungs last night as I drifted off for putting them through all this.

I don’t know why, but I had this odd feeling in the back of my mind that this wasn’t going to be as easy as it should be. I think that the idea that closing the doors to the chemist delivery driver yesterday was the return to normality was more a wish than a belief. At least for once, I suppose because Adam is here right at this second, I have spoken to him about it while I have been writing. Adam decided to read the possible side effects and found out that it could actually be caused by there Seretide, raised heart rate is a known side effect. We are in agreement though that I should split them up and then wait for a few days to see what happens if it settles down, then fine, if not, I will call the doctor. I am honest enough with myself to realise that I might be winding myself up about the whole thing and causing all if it, although I am normally a very level headed person, not prone to panic or anxiety. But there is only one way to find out, put it all to the test. All I want is a nice quiet weekend and a touch of normality, a chance to feel like myself rather than some ill person who isn’t able to cope with it all. That is what I would like, but I know for a fact that what I have to do is sort out the kitchen. I also know that at some point over the next few days that the doorbell is going to ring and the bag for my wheelchair is going to arrive, yet another piece of equipment to add to my collection.What I want from my life in the next days just isn’t going to happen. Yes, I could put it off, I could just put it all to one side and take a few days out, but all I would be doing is making the monster ahead of me even bigger.

Please read my blog from 2 years ago – 11/09/2013 – Sod law or spelling out the future

The pain started to build again after I finished my post yesterday and I decided that I was going to try again with my GP, after all I had little to loose. I don’t know if I put it to him in a different way or if it was I simply had it all sorted and clear in my own mind, but to my shock the call didn’t go the way I expected at all. In the past the fact…..

6 thoughts on “Side effects or just life?

  1. Hi Pamela,

    There is absolutely no need to sweat the increased heart rate…it’s totally normal. Your 84 reading of oxygen saturation is low however, and I wonder if you aren’t getting a false reading, which can happen with nail polish, moving your finger, or not waiting long enough for the real reading to appear. I know whereof I speak, unfortunately…MS, COPD and another lung disease, and yes, housebound, since 1998. I nebulize two drugs twice a day and one 4-5 times, PLUS the handheld inhaler, PLUS twice a day for 20 min I have to wear a very large contraption called THE VEST which shakes me to clear my lungs. I keep my nebulizer under my bed. I end up in the hospital when I don’t follow my program, so I got tough with myself and feel so much better. but it is a pain in the kiester to have this routine, I know. I can answer questions if you like.

    I especially want to tell you to look up periodic limb movement disorder. It sure sounds like you’ve got what I had, and the crippling fatigue we assumed was from MS was solved overnight last October from one clever doctor who asked if my husband had ever mentioned my twitching at night . It keeps your brain awake though you may be unaware of it. My miracle pill was Ropinirole, brand name Requip on this side of the pond. It is cheap and no side effects. Don’t wait until you fall asleep standing up and fracture your spine, like I did in 2012! I became so sleep deprived I’d lose consciousness several times a day.
    Best from Vivia

    Liked by 1 person

    • I’m afraid that the 84 reading was right and it’s not the first time. I did take the monitor off and try it on three different fingers, as I didn’t believe it at first. The hospital like me is totally convinced that it is my MS causing more than half the problems thanks to the spasms I get in my diaphragm and intercostal muscles. My consultant thinks that I am getting minor spasms all the time in my lungs and areas are collapsing. He is hoping that my regime is going to help keep enough open and also stop the pockets of fluids building up. He says it should also stop me feeling like I am having a heart attack as I have on a couple of occasions. The VEST sound somewhat horrific, I shan’t be suggesting it right now that is for sure.

      I don’t have the twitching you mentioned. In fact, I am a dead lump when I am asleep, I can’t even roll over any longer, again not helping with the fluid build-ups in my lungs. I also sleep like the dead, only disturbed by my bladder or really bad spasms. I would have thought that my antispasmodic drugs would have dealt​ with any mild ones if they were there. But thank you for the heads up.

      Do you also have a raised heart rate from your meds? Sorry if I sound thick but I thought that a raised heart rate was always important?

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      • Yes, I do; and the increased heart rate is par for the course with the albuterol for everyone. My resting heart rate is around 100 and in the 120s is an everyday thing for me. It is a tradeoff for relieving the bronchospasms. Nebulizing is a piece of cake. Try to take it in stride and you’ve great will be more relaxed. Do it while surfing the web and you’ll be surprised how fast it goes!

        The PLMD comment is related strictly to what you’ve written in your blog about Adam mentioning your twitching at night. Look it up and you’ll see the bed partner as they call it is the one who notices it. You will be asleep but it wakes your subconscious each time you twitch. I feel ten years younger at least from the first dose of ropinirole😁 . Amazing but absolutely true.

        Liked by 1 person

      • Sorry, I should have said that I did read it before replying and checked out the drug you suggested. It is a prescription drug in this country, which means if my doctor prescribed it, it would be free. I even searched my recent blog to find the word twitch, but couldn’t find anything that might have made you think it was a problem, but of course I don’t know how much you have read.

        Adam used to complain that my legs jumped and that I had a really bad habit of raising my knees and slowly letting my feet slide down the bed until they suddenly dropped and bounced off the mattress. But in the past few years I have been so deeply asleep that I frequently don’t move at all. Pain is the only things that disturbed me, I even seem to be trying to get out of bed, so far I haven’t actually stood up and gone anywhere. He also has pointed out that when my daytime twitches are bad they also appear at night, but it isn’t a long term problem or one that happens even consistently​, more sporadic.

        I thought it was the Albuterol. I have to say that I am a little surprised the consultant didn’t warn me as he went through how to put the nebulizer together and how to use it. No mention at all of the Seretide at all, or the fact it needed the Volumatic to go with it.Hopefully I will settle to it in time, it’s often a case of just getting used to things.

        Thanks for you help with the inhalers x

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  2. WOW !!! THE FIRST DOSE AND YOU DID SO WELL. I THREW UP, COUGHED UNTIL IT HURT AND ALMOST BROKE THE DAMN THING FROM ANGER AND FEAR. SMOKERS ARE GOOD AT INHALING, SO YOU MIGHT BE ABLE TO RID YOURSELF OF THE CONE. SPACING EACH PROCESS WORKS GREAT.SOON IT WON’T BE SO STRESSFUL, SO YOUR HEART DOESN’T WANT TO RUN AWAY. IN NO TIME, , IT WILL BECOME PART OF YOUR ROUTINE AND MAYBE YOU’LL SEE THAT IT HELPS. FOR THE FIRST DAY,YOU DID WELL. USUALLY, I’M THE ONE WHO CAN’T SEE ANY SILVER LININGS. YOU ARE CHANGING MY OUTLOOK. I HOPE YOU ADJUST COMFORTABLY.I KNOW IT’S HARD.IF IT HELPS, IT IS WORTH IT. WE ALL WANT PAMELA, TO BE WITH US FOR A LONG TIME,,IN ANY WAY. HOPEFUL……..NEVI

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