Restructuring

All I have done since I woke up is to cough. Yesterday evening even Adam broached the subject and asked if I thought it was getting worse again, in other words, he thinks it is. I had to be honest and tell him that I thought that it might be but I wasn’t sure if it was bad enough to require a call to the Doctor or if it was just to be expected. What I do know is that it is now centered on my left lung as the back and lower edge of that lung complains about every breath I take, but compare it to two weeks ago and I am as fit as a fiddle. I woke last night just before midnight coughing madly and Adam appeared once again with a measure of cough mixture that did the trick. Sleeping solidly from then until the alarm sounded was wonderful. I honestly don’t think I have had a full nights sleep since this whole thing began, which doesn’t make the rest of my life any easier. Today seems to be just like yesterday. At first I was coughing and finding nothing but the desire to cough again and again. Eventually, there was a small amount of the thick nasty gunk, then the water returned and it has been nothing but thin watery liquid ever since. Once again I can’t hear any crackle or wheeze, I just feel it in an intake of air and there it is suddenly drowning me before going quiet for another few minutes.

I have once again been doing something that in the last few years I have become an expert at, I have been putting things off. I now find myself with a list of things that I have no other choice but to do today. Top of that list is to have a shower. When I went for my nap yesterday, I fully intended to have my shower when I woke. The problem was that when I did wake, all I could smell was bleach. Adam had been going mad with it in the bathroom and even in the hallway I could feel the fumes cutting into my lungs, my shower wasn’t going to happen. I have shuffled it forwards four times now and, to be honest, I feel disgusting and the fact that the shopping will be here this afternoon, is the icing on the cake, I can’t let anyone see me looking like this. I also have to make two phone calls, first to the doctors as I have to be sure that the new calcium tablets are on the list of repeat medications. Then I have to phone the chemist to add them on to their list of drugs to order for me. I also need to have a word with them about my Amitriptyline. I have been taking it for years and although the brands change all the time, it has always tasted just like they all do. When my meds arrived last there was a different brand and I thought nothing of it until I had to take it. The only way I can describe it is to say that it tastes like soap. I am usually really good at taking anything, no matter how horrid the flavour, but this one has me stumped. It has got to the point that I now actually dread having to swallow the stuff. I find myself every night sitting on my perching stool in the kitchen just looking at the little cup with this stuff glaring back at me and wanting to do anything, other than have to swallow it. I have never asked a chemist to not send a certain brand of a drug before, so I don’t even know if they will be happy to change it back or not, but I have to try.

I can’t be sure what started it, or even when, but I have for some reason recently been plagued by heartburn. I don’t mean the normal stuff that we all know, no this is turbocharged. To me, heartburn was never more than a discomfort in the area of my sternum and a burning sensation in the back of my throat. I don’t remember it lasting more than maybe half an hour and then nothing for months. This is like someone has kicked me in the chest and the pain starts in line with my stomach and goes right around to my sides. I can feel it right up to my armpits and the only reason I know it’s heartburn is as within a minute or so, the normal heartburn symptoms appear and I have to drink something so that it doesn’t burn its way through my throat. I have lost count how many bouts I have had, but strangely I have found that even a few mouthfuls of coke have the desired effect on my throat, the rest of me takes time. I have never had heartburn that wakes me up in the middle of the night before, or appears even before I have had a chance to eat something in the morning. To me, this is really odd and the only thing that makes any sense is that when my diaphragm spasms are now tight enough to actually crush my stomach and forcing the bile upwards. I have for years now been on tablets that are there to protect my stomach from all the drugs that I take. I actually can’t remember having heartburn at all in all that time, then this started. I got Adam to buy me some suckable tablets that I have taken in the past, in the past they were wonderful, now they don’t seem to be doing much at all beyond what I can do just by drinking something.

I have been working on what my new routine should look like. The biggest change is that I have built into it rest points, times when I simply stop doing whatever I am and go and do something else. For example, I used to have my breakfast while I sat here working through my online stuff. Now, I stop. I am taking my tablet, eating breakfast as a focused on meal rather than something that is happening in the background and once finished, I sit and go through what I want to add into my schedule for recording on the TV. I have allowed for short breaks like that throughout the morning. My work schedule is now constructed in such a way, that once I have finished my blog, and the tweets about it, the rest can be done whenever I want throughout the rest of the day. I am hoping that by just breaking the ridged structure down and stopping from time to time, that I will not wear myself out quite so quickly or quite so totally. Having spent a couple of weeks being forced out of my old routine may just have been the best thing that could have happened. Even what I put out on Twitter has changed, not in content, but in quantity. I no longer have this tight list that I stuck to daily, now if I don’t feel like doing this or that, well I don’t.

All that might sound really trivial and as though it is something anyone would do when they don’t have the health of a flee, but to me it is really hard just now. I have it so well ingrained into me that life has to be a productive venture or it isn’t worth anything, that being able to stop and do nothing of worth, is hard. I know without a doubt that I have been pushing myself too hard, but it is incredibly difficult to fight against everything you have ever lived by. Just stopping for a few minutes is hard enough, bearing in mind that I don’t remember ever taking a lunch break in any job I have ever done, yes ciggy breaks, but eating, well that could be done when the work was finished. When you are having to literally reprogram your soul, it’s hard. This new freedom to do what I want is odd, as I can’t find things at the moment other than games to fill the time. Years ago I would have sat and done some kind of handicraft, but with my poor eyesight and crap dexterity, well embroidery, knitting and all the rest of them, just isn’t possible. I might have eventually accepted that I am not up to being superwomen any longer, but accepting that I can even be a shadow of her, well it is both hard and it hurts.

For me, it doesn’t matter what my health throws at me physically, how much pain, discomfort, fatigue and all the other things it finds to play with, it is the mental attitude changes that I find the hardest. It is beginning to feel as though those changes are having to be made more often than in the past. I knew this time would come, the point when want and ability were two totally different things and that want would be the one to suffer. Even though I knew it would happen, it doesn’t make it any easier to actually accept.

Read my blog from 2 years ago today – 29/06/13 – Thoughts

Yesterday and so far this morning have been filled with pain in my legs, it is one of those shift about and twist days, but with little real relief. I sometimes wonder how I have managed to gain wait as although I would class myself clearly as immobile I rarely ever actually manage to sit still for long. I know that I frequently joke about switching them for…..

Getting it right

I woke yet again really not feeling well, this happens all too often for my like and I know from experience that in another hour or so, I will be fine. I don’t have the slightest idea what causes it or why it should happen so often, if I could link it to one of my conditions, well it wouldn’t make me any happier about it, but I would at least have a reason, something I have said often really does make a difference.

With this being Sunday, I thought that it was going to be yet another day of nothing to report in the world other than what I personally have to say about it, I couldn’t have been more wrong. Those who have been with me for a while now, will know that I have written pieces for other sites and even did a video for one of them, more about that later, well today I have all of a sudden had three totally seperate requests from other sites for me to submit a post for their sites. Once again, I have found myself saying yes without really giving any of it a great deal of thought. When I was asked by the COPD site to do an interview with them which included a video, I jumped into it feet first, I saw it as firstly a compliment that anyone would want me to play a part in what they specialised in and an opportunity that I couldn’t pass by as it was a chance to bring more readers to my blog, something I am always looking for. I had great hope built into the piece that I did for the “COPD Life is Calling”, having signed all their paperwork giving them permission to use my interview for a period of five years and for them to send out a reporter from London all the way to Glasgow, well it had to be something with clout behind it. For me, it was an exhausting day, but I believed it was worth every second of it, I didn’t have a firm date from them as to when the site would be launched so there was a lot of waiting to do, something I am not that good at, but I waited and waited. Finally at the end of November I received an email which said the site was live and rushed excitedly to view what I knew was going to be an edited version, I found nothing but a quote from myself, one on their Facebook page and another on the main site. I knew there was supposed to be not just an interview from myself, but from others too, but I could find nothing. After several emails I discovered that I wasn’t being stupid and just couldn’t find them, the truth was they are going to be using it along with quotes as and when it fits with what is happening online, which can be anytime from now to five years. Since when I have kept an eye on what they are doing and another couple of quotes have been used, but still no video, all in all I was left feeling disappointed and not willing to help any other sites in the future, in fact I did turn down two in December. I guess I was just left feeling battered and bruised by the whole thing and it wasn’t until today that I found myself eagerly saying yes, I guess the wound is now healed and to get three in one day, well I am was more than flattered.

When your energy levels are limited, it is always hard to know what is and isn’t a good use of that small pool. It doesn’t matter if it is doing the housework, cooking a meal or just sitting here writing, it all takes something out of you, some days writing is the worst of all evils, but I still have this drive daily to put down whatever it is swimming around in my head. When I started to write I admit I felt guilty using the time I had to do something so frivolous and of no value to man nor beast. It took me a long time to see what I was really doing was doing something I could that didn’t mean I was standing, walking around or climbing ladders, all things not advisable for anyone with PRMS at the stage mine is. It took even longer to realise that this was also the thing that was keeping me, the person who never sat still, busy and content as it was something I could still do and stopped me from listing the things I couldn’t. I have come across a lot of people who do nothing but that, all they can see is what they have lost, what they can’t do any longer and what they miss doing. When I let myself, well yes I can make huge lists of “can’t do any longer’s”, but lists, not even “to do list’s”, achieve anything unless there is action that comes out of them. I strongly believe that we all have something we can do, regardless of our health or our disability and it is important that we do them for as long as we can. If I didn’t write, I would wallow and believe me, I am as good at that as the next person, I am just lucky that I have a stubborn streak that says I can and I will, I am also lucky to have learned a third trait that keeps me in line, pass yourself. Replying to those three emails has now put me in the position that I have to fit into my routine, three ad-hoc events, ad-hoc doesn’t actually fit into routine in any way what so ever, but I am still happy that I have said yes, as I still believe that stretching ourselves in what we can do is good for us.

When it comes to living my life, I don’t believe that I am that different from anyone else with chronic illness, I have learned how life works for me and I try to stick to that as if I don’t, well I normally pay the price. I have heard some people saying that living to a strict routine is boring, I have to actually disagree with that, as long as part of that routine is something creative, it can’t get boring. I know that not everyone can write, or bake, or paint, or even do embroidery or knit, but everyone can learn and lets face it, we all suddenly find ourselves with more time when our health stops us living the average life. If that fails, well strangely I found that a jigsaw fills the same satisfaction space, especially the really big ones with lots of the same colour. The biggest problem I have found in having a routine is the frustration when something happens and you are running behind time, or someone stops you totally, some days the only thought in your head is your routine & not always what they want. When I first started living by routine, I made the mistake of thinking that every minute of my day had to be filled. Read back and you will come across posts every now and them saying that I need to change things as I could no longer fit everything in, even then I just removed something small and went on as was. Routine isn’t about filling your day, it should be about ordering your day, to have slots where you do this or that, but not down to the second. It also has to have wiggle room, space for the ad-hoc, be it a phone call or writing an extra post, space that if not needed for the ad-hoc, well you can relax, I missed that out totally, outside of watching TV during the evening with Adam.

Right now, my routine says that I should round this off, so does my brain. Get your routine, your creativity, your freedom and your inspiration right and you will find happiness and a life that doesn’t leave you making lists of what you can’t do.

 

Please read my blog from 2 years ago today – 08/02/13 – What was the point? 

Everything is behind time today, as I have at last been to see the Pain Clinic. I have always refused to go but then thing got bad and the MS Nurse convinced me that they would be able to help me. I really wish I had stuck to what I had been doing for years, refusing. Already I know you all have realised that they can do nothing to help me, yet another door has………….