Earlier this week I was contacted by a company who are on behalf of a medical company are setting up a new website, yes another new site, this one though is a social media site. They are trying to set up a new help site for people with COPD and their families and having found me through my blog, even though COPD is for me a secondary condition, they want me to be one of the people who will be videoed as part of the main site at launch. It has taken me a couple of days to make up my mind as to whether I was up for this or not, it wasn’t so much if I felt I should, as I always feel I should when it comes to helping others, what was holding me back was much deeper than that and still something that is concerning me. The interview they will be doing with me will be one hour long and clearly, will be covering area’s of my life that are all documented here, but talking about are actually a very different thing. My MS is going to make this interview really hard for two clear reasons, my memory and my inability to control my emotions. I don’t want to come across as a blubbering idiot who stutters and comes across with nothing of value to actually say. The pressure for me is clear and stress isn’t a good thing, taking part is far more than just being a voice, it is about being a useful voice, one that is understanding and helpful. They wanted to do the video next week but I have asked for it to be the week after as with Teressa and John being here and Adam on holiday, it would be just too much for me, I know that without even trying.
I find this all so odd, I have been working towards making changes in my life and heading into a less busy phase, having made the first moves a few weeks ago, dropping two of my sites and reducing what I do on twitter, to then get the invite to be part of a new social media site, blew me away, the timing was beyond freaky, then this on top, well it get freakier by the second. I have though agreed to both as I think my input will be limited and up to me how far I want to take it after the initial set up. Fate sure has some strange bedfellows. Clearly, I am not doing this totally out of a desire to help others, but my secondary reason is still found in my first, I am hoping that both will bring more people to this blog.
Yesterday I did some more work on reducing my activity on Twitter, I have once more cut back on the number of daily tweets. Twitter is the thing that takes up the biggest part of every day, so it has to be the thing that is trimmed, I am hoping though that I don’t need to cut anymore as to do so, well it would take it below what I am happy with as I do actually really enjoy it as well. That is always the problem now, all I can do is cut back on what I enjoy, even though it does apply the pressure to my day, to open up space to do other enjoyable things which don’t have pressure attached. Life is really odd now!
Last night I found myself for small silly reasons constantly getting up and wandering around to do small things, but all things I need to do then which couldn’t be gathered up into a group into one movement. Every time I stood up, I could feel my limbs draining that bit more and wanting less and less to do as I asked them. The result was that by 9pm, bedtime was more than just needed for sleep but was also needed because my entire body had nothing left to give. My final trip into the kitchen to add some coke to my glass for the night was the final straw, even when I headed into the loo, I knew that I was in danger of not making it back out, as there was nothing but pain, lifeless pain in each and every limb. Even when I was standing in the hall saying goodnight to Adam I was totally unable to lift my left arm up to hold him, it was dead, just hanging there heavy and not wanting to move.
When I got into bed I found myself just lying there without the duvet pulled up, I just didn’t have the energy to move it. I lay there with every part of me just too tired to even sleep. That type of tiredness leaves you feeling like the most useless thing that is still alive, you want to sleep but sleep is held away from you because your body just won’t shut down. It’s odd just lying there, feeling your body disappearing because it doesn’t know anything else to do, but wanting it to release you just so you can sleep. All day I have coughing on and off, my chest has been quite clear for the last few weeks but yesterday every time I coughed I could feel and hear the phlegm moving, but I couldn’t clear it. Once I was lying down, I could feel it more than I had all day, as is normal these days lying down brought on the crushing sensation of my two new night time friends the upper ribcage hugs, trust me coughing when your ribs are locked isn’t fun. All I could do was try not to cough, but that quickly caused pain not just in my back, but also in the centre of my chest where your windpipes split into your lungs, every breath was burning and rattling, something I know all too well as a sign that I might just have a chest infection. Adam has said that for years when I sleep I wheeze, infection or not, I know he is right as I hear it nightly as I slip into sleep, but last night it was painful too. Forcing myself to cough wasn’t funny, I had to make a choice, one pain or the other, as breathing is actually one of those things rather high on my list of must do’s, I coughed. I don’t know how long I lay there for after sorting out my breathing and I guess that my body did give in eventually, as I was suddenly aware that it was midnight and I was freezing with pain in my stomach so bad that I tears appeared in the corner of both eyes as I opened them. I had once again taken a laxative as it was once again two weeks without my bowels working at all, if there was one set of muscles that I truly wish MS had left alone, those is the ones, for once though I guess they did me a favour as I pulled the duvet up, let the pain pass and slept.
This morning I am still paying, all I did to put myself through all of this was make two extra trips to the kitchen and two trips across the living room to my PC from the settee, four journeys that each took at the very most one minute, but I have paid big time for it. My arms are still wanting to do nothing and my chest is screaming at me with every puff or my e-cig, but interestingly not so much the real thing, even right now air is causing discomfort right across the line of my second hug, right behind my breasts. My body is filled with painkillers including a booster, something that I always note as I hate to think how I would be feeling right now, or last night, if I didn’t have a single drop of morphine anywhere near me.
Read my blog from 2 years ago today – 02/08/12 – 12 and still counting
I am on my own again this morning as Adam has gone out for the day to spend it with his mother who lives thirty miles away. She moved there a few years ago wanting to be away from the city before she reached retirement age. Now retired it means her visits into Glasgow have reduced and to see each other takes a bit more planning than when she lived just down the road or drove……