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………….
EVERY TIME YOU SIT TO WRITE, OR DO AN INTERVIEW OR ANOTHER BLOG((EVEN, THOUGH IT IS EDITED AND YOU THINK YOU’VE WASTED YOUR TIME. YOU; HAVE NOT.EVEN IF YOU ONLY REACH ONE PERSON, THAT IS ONE PERSON, WHO’S LIFE YOU HAVE TOUCHED OR EVEN CHANGED. I AM ONE OF THOSE PEOPLE.I AM SPREADING YOUR NAME, AND YOUR CHALLENGES WITH PRMS, WITH ALL THE PEOPLE I TALK TO IN CANADA AND U.S. WHEN YOUR BATTLE IS OVER:: YOU WILL HAVE A BOOK FOR THOSE FIGHTING AN INCURABLE AND RARE DISEASE. YOU WILL BE A HERO,TO MANY….NEVI