I found myself in tears yesterday afternoon, not because of the nebulizer, but because of the chemist. We had for the last few months handed over the job of ordering, picking up the prescription and delivering to our house of my repeat meds, to our local chemist. It had been working fine until this week when on Sunday, Adam who dishes out all the meds for me, announced that I had no more 60mg MST, which is my main painkiller otherwise called Morphine. There was just enough for him to put out my dose for Monday morning, but that was it. Clearly there was something wrong, but with it being Sunday, there was nothing we could do then. The plan was for him to phone the chemist before the ambulance arrived to take me for my appointment, or while we were waiting at the hospital, just to be sure they were delivering on Monday afternoon. When he did, it turned out they hadn’t even ordered them. Something had gone wrong and the note to order on their system just wasn’t there. He quickly phoned the doctor surgery and ordered it, then phoned the chemist to say they were there to pick up. I knew we would still have a problem as the chemist only picks up prescriptions in the morning and my Dr system. meant it wouldn’t be ready until the afternoon. There was one saving grace, I had a small stock of 10mg MST and there was enough to cover two doses. As is often the case it was Adam who reacted immediately by tying himself up in stress, I just stepped through it, accepting what had happened and tried to calm him down. He was rushing back and forward checking to see if the ambulance was there and muttering down the phone at different people trying to get everything sorted so that I didn’t have to swallow 6 x 10 mg tablets, which he wouldn’t accept wasn’t a problem.

Yesterday morning the phone rang and I was surprised to see that it was my GP, he was calling as he had received the letter about the new meds the consultant had ordered and just wanted to be sure that they had supplied the nebulizer. My brain being what it is, didn’t think about they way the prescription was going to get to me, if I didn’t do anything, the doctor would post it to me and I wanted it quicker than that. So I called the surgery and arrange for them to hold it so the chemist could pick it up on Wednesday. This, of course, meant I had to phone the chemist. I double-checked with them that my meds would be with me today and at that point I got a rather snooty response. In fact, I got the impression that they thought I was being difficult, that was when the first tear appeared. There is nothing I can do about it, when my emotions are spiked, be it by anger or anything else, thanks to the munching monster, I cry. It’s one of the reasons that I don’t normally deal with anyone on the phone, I only did it this time for speed as Adam was at work. There is something very embarrassing about finding yourself blubbing to a complete stranger who doesn’t have the slightest clue about the damage your health has done to your brain. I remember saying “hold on none of this is my fault. You were supposed to have ordered my meds and you didn’t!” There was a sudden change in attitude and she said that she would look into it and call me back and tried very quickly to cut the call and hang up.

Once those tears found their exit, they were off. I sat here for about twenty minutes, telling them to stop, blotting them off my face and trying all over again to get control of myself. My anger had to settle before that could happen, plus I think there was a large dose of yesterday lurking in there as well. Two stroppy people in 24 hours were just too much for me, I guess that I had been wrong in holding them back yesterday. The stress of the last few days had caught up with me and tears seemed be my bodies answer to it. I know all too well that sometimes the best thing you can do is cry, but I also know that to keep crying achieves nothing. I have to say, though, I did feel better in some ways. Oddly, one of the things I noticed was I didn’t feel so tired, I couldn’t work that one out for the life of me. Don’t get me wrong I didn’t suddenly feel invigorated, just that little bit brighter.

I did later in the afternoon received a call from the chemist, although there wasn’t the direct apology that I would have liked, they were both courteous and friendly and assured me that the meds would be delivered later, with a balance to follow tomorrow. I am glad though that I double-checked what they had there, as I was sure that the new meds prescription wasn’t going to be there. Earlier I had explained that the doctor had just written it five minutes before I called, yet they still tried to tell me that they might have it. They will pick it up in the morning and deliver it tomorrow along with the balance of my other meds. Part of their call was also about one of the meds that they did have the prescriptions for, oddly I had two prescriptions for two different types of calcium. I, couldn’t work it out so they sent both to me with the rest so that I could look at them and pick the correct one. When I saw them I realised that there was only one month of each and my prescriptions are for two months at a time. I, couldn’t understand it at all and of course, yesterday was Tuesday, my doctors are closed in the afternoon, so there was nothing I could even do about it. By that point, my head was buzzing and the word drugs simply made me want to scream. All the pressure about getting these things ordered and delivered was exactly what I wanted rid of, this delivery has been a total nightmare and I was totally fed-up with the whole thing.

Adam and I had already decided that this system just wasn’t working for us at all. What we are going to do going forward is that Adam will arrange the prescription then tell them that it will be ready to be picked up the next day. Hopefully, that way will get rid of all of this. It is so easy for doctors to say take this, and this, and this, and to keep on adding and adding. Once you land up like me with a list that fills three carrier bags for so many different conditions, it just becomes an ever growing nightmare. Twice a day going forward I am going to be faced with sitting down to take a collection of tablets and liquids, followed by inhalers and then the nebulizer. It isn’t just swallowing a few pills any longer, it is a process, a part of my day and now Adams, where there is no focus other than my health and somehow that focus now feels negative. Yes, I know all of this stuff is to help me, to make me feel better and that should be positive. I see that, but that doesn’t make me feel it. It just makes me feel even more taken over by the whole process of caring for these things that live within me. The simplicity of just living, of being what I would call a normal person is being stolen from me. I know that getting the wheelchair out is my idea, it the only option open to me, I have to be able to get around the flat in safety. Finding myself suddenly attached to equipment, tied to inhalers and machines to keep me going is mentally chipping away at me and I haven’t even started living that way yet, but it hours away, not weeks.

I can’t even compare it to anything I have been through in the past, as I have never felt this way. I loved my wheelchair when I was using it to keep me in the outside world. I have swallowed my body weight multiple times in tablets and I even spent three years attached to a gastric nasal tube and it’s pump. All of them were a breeze as I still felt reasonably healthy. There was a clear positive to all of them, even before any of them started and they were still in the planning stage, I felt good about them. So much has changed in the last few years, things that you don’t really notice on a day by day view, it takes being able to see things in a longer perspective. Right now I am no longer physically strong. There is this general weakness that fills me all the time, but as I have already said, it goes deeper, right into those muscles that no longer have the strength to hold me. I feel as though I am fading and that added to the new drugs regime, well, it’s affect has just thrown me off balance in every way. I guess that I am just feeling the truth that my health has finally taken over everything and somehow, I have been ignoring that fact. Well, I am awake to it now.

Being housebound and not seeing others who have the habit of spotting those things that have changed, you actually live in a bubble. I have been here 8 years and in that time, yes there have been changes that I have written about. Problems that I have faced and got through, but other than that initial diagnosis of COPD 2 years ago, nothing feels as though it has changed that much. I know I am weaker, that I am not capable of doing everyday things like reading my mail, dealing with the outside world, or even getting me own medications right, but somehow I still felt like it was my life and my body. This working towards getting things ready so that I can use my wheelchair and this stupid nebulizer has woken me up to the reality. This isn’t the body I called mine, how can it be, it isn’t capable of anything on its own any longer. It can stand, walk, process food or even breath without intervention. That isn’t my body! I was always fiercely independent, look at me now. All I can do for myself is to sleep or sit here, that isn’t me. I have woken up to the changes that I had missed, not processed or simply ignored. 8 years of change is a huge amount to catch up with and a huge adjustment to make. I know I can do it and that I will, but I need a little space to do so, a little time and a little understanding. I’m human, not a machine and I occasionally have to actually act like a human. I guess that this is one of those occasions.

Please read my blog from 2 years ago today – 09/09/2013 – Searching for life

There is never a simple answer to anything once you are either past that certain age, or you are no longer fit for purpose. I remember clearly when I was in my early teens thinking this would never happen to me, I was never going to be…….