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…..