I woke this morning with the pain in my left side that I had the other day, it wasn’t anything like as bad as before but it was there, just as it has been on many time before. It took me until last yesterday to be sure, but I honestly believe the pain is coming from my lung, I have written many times about the pressure and discomfort that I get when lying down, well this is in the same source point, it just stronger and further reaching. I have noticed many many times now that one area starts to really hurt, to produce pain above what my meds can handle, it seems to trigger pains elsewhere, I don’t know if I am right or not but I have this idea that what is happening is that my natural pain relief centres on the worst area, leaving the rest of me to just get on with it, the result I become aware of pain that was there all the time, just masked. So much of living with any illness seems to be guess work, there just isn’t enough information anywhere to tell you exactly how a body responds to different situations or how it could possibly affect you, all you can do is try and work it out for yourself. There is one thing I am sure of and that is there is so much personal research and so many possible theories, sitting in millions of blogs, giving fuller and more detailed information than any doctor could pull together and no one is using it for anything. I know it would take a lifetime of work to do it, but there is a full-time job for anyone who wants to work on any individual chronic illness, I am sure there will be thousands of breakthrough items just sitting there doing nothing.

Of course just knowing that the pain is coming from my lungs, still doesn’t answer if it is my MS that is causing the pain or my emphysema, on one level it doesn’t matter, but on the other it really does, as if it is my MS then there is nothing, no medication or physio that could possibly help, but if it is a sign of my emphysema getting worse there is a possibility there might be something out there to help in the future to control it. More guesswork, more waiting and more time spent dreading it happening again at full strength, as it would again pose the question that I raised the other day and I am still no closer to answering, is how long do you wait sitting there in pain, before you call for help? Once again I have searched online in vain for an answer to that one, but nowhere does it say act at this point or that, the concentrate on long-term control, not sudden acute attacks. I remember quite clearly when I had pneumonia, I called the doctor to the house who wrote a prescription and brushed the whole thing off as not important, despite the fact I could hardly move and when I did the pain was unbearable. 6 hours later I called again, the pain wasn’t worse, just no better and I was at the end of my tether, unable to find even a minutes relief. A different doctor arrived who called an ambulance and gave me a painkilling injection, I was in the hospital for 4 days on intravenous Morphine and constant oxygen. It is the luck of the draw which doctor is going to help you and which will do absolutely nothing, I am still convinced if the second doctor had seen me the first time round, he would have done exactly the same thing, he wouldn’t have left me there in pain. I don’t speak to my GP that often but I have made a mental note, this is a question that I am going to ask him if I remember!

A couple of days ago I was asked by one of my Twitter followers if I would retweet and appeal for them, I always check them out as I have found in the past that often it is someone trying to drum up votes for some on-line competition, or businesses trying to sell something. I don’t forward those sort of tweets as I had always held it to health issues or issues around children, this person didn’t settle for one request sent when I was offline they sent it about 10 times to me within an hour. I as always took the time to read through what it was all about and found myself angry and absolutely not sending the tweet on to my followers. It had come from the husband of someone who like me had MS, his wife had a lifelong dream that he wanted to make happen for her, so far no problem, what annoyed me was he was asking people for money as his pay, wouldn’t stretch to cover the cost. I could totally understand his motive, but what made me angry was that I too have unfulfilled dreams, so do millions of other, but I wouldn’t ask anyone to give money to make them happen. Yes, if it was for a child who is dying, that is totally different, but for an adult, someone who has had a life, who has had the option to make it come true themselves and still has much of their life still to live, no. I sent him a private message, just saying I didn’t approve but wished him luck with his endeavour. It was clear he had already managed to raise some money, but I personally just don’t get it at all, there are so many people out there who struggle to just live with their illness, due to bad housing, or pure health care, or lack of adaptations and equipment, they are the people who should receive help, not an adult with a dream. I don’t often give my view on things like this, but to be honest it really made me see red, even though I remained polite. I know it is up to an individual if they give money to this sort of appeal or not, but the site they were using to collect the money on was filled with appeals from individuals, most with little true value behind their appeals other than to give them money, internet begging if you like and most worrying, none of them had any proof of who or where the money was going, sorry to say thing but I think that most of them looked like scams, so please be careful if you to are contacted in this way, think twice and if you want to give money, give it to a recognised charity who desperately need everyone’s support.

Please read my blog from 2 years ago today – 30/05/12 – The medication quandary 

Last night I found myself online at a time of day that I usually spend with Adam, he had come home from work then gone to the chemist with my prescription which had arrived that afternoon. Unfortunately, the Oxycontin wasn’t in stock so he will be picking that up this evening, so another day of not knowing how to sit stand or move. When he came home I unpacked all the meds, two carrier bags full, they were all sat on the kitchen unit looking like a weeks shopping, rather than the medications by one person just to get through life. During the winter we spend…..