It often a lot harder to find the right words when someone has just paid you a great compliment than it is when they have just put you down. That’s a fact, well at least for me. As much as I totally love twitter, I don’t think I will ever find the right thing to tweet in reply to people who thank me for what I do. What I do is nothing, I write, I put out tweets that I believe in and I do what I can to make others feel good about their lives. To me that is something everyone should do without thought, as that is how it feels to me, I do it because it is natural. Yet almost daily I find myself reading tweets that are so sweet, so lovely and so embarrassing, that I sit here with a suddenly blank brain that doesn’t know how to answer. I normally take the cop out route, I just click favourite and run red faced onto the next. So unless you want to leave me lost for words, don’t thank me. I get so much back from what I do, that your thanks aren’t needed, just keep retweeting as the numbers alone tell me you like it.
I often have messages that at some point say that they aren’t as ill as I am or living with the pain that I do and those messages make me sad. Trying to make comparisons between time periods of time or between two people with the same symptoms, is almost impossible. What matters is what is happening to you at that moment. Each of us is on our own personal, and I hate this word, “journey”, with our health. It doesn’t matter the illness or its stage, it is that moment in time we are each living in that we have to deal with as individuals. A fact from my health that I know to be true is that I never think it can get worse, but for me it always does. That doesn’t mean I am living a worse life than I did a year ago because I can’t compare them. I don’t see at all my life getting worse, yes my health, but not my life. I measure my life by the happiness I can find within it, not by my health. There are times in my life where my health was good, but I would without a thought say they were worse than where I am now because I wasn’t happy. There is a saying “You don’t know what you have lost until you lose it”, trust me, there are a million things we can lose, but none is worse than losing our happiness.
The pain I live in today doesn’t compare in any way with the pain I was living in a month ago or a year ago, it is just the way it is today. If you live with chronic pain, it is a mask to your life that in an odd way because it never goes away, you stop noticing. To someone who doesn’t live with pain, that will make no sense at all. If you don’t notice it, then why is it such a problem? Just like you will breath a million times and not notice one of them unless you have a cold or a chest infection. I spend every hour in pain, I notice my breaths because they cause pain, pain that I no longer react to, because it’s always there, just like oxygen. I react only to those that raise themselves above the background of my life, just as anyone would. It’s just my level is higher than a healthy person ever normally feels. The longer you live feeling so tired and so weak that you can’t do a tenth of what you did in the past, the more normal it becomes. Pain that I put in as my level 10 ten years ago might now be labeled around 5 or 6, as the scale is always changing. 5 or 6 is now what I class my background. If you were to make your own scale, well it might match mine exactly, or it might be so far apart that there is no comparison. That doesn’t mean yours or mine is worse or better than each others, as we are both dealing with totally different lives. Unless we could actually switch bodies, neither of us can know the truth that the other has to live with. But to each of us, our life is what it is and we can’t change it, so enjoy it.
It took me a long time to stop looking at my health as being all negative, all about lose and even more so about getting worse. I don’t know what made me see it as just part of my life, probably because no one believed me for so many years, but I’m so glad that I did. Life isn’t about any of those things, life is about being happy and when you put that down as your main goal, everything else shifts its position and simply doesn’t matter. I can’t change it, no one can cure it and it is never going to go away, so live with it. I don’t see my life as tough or difficult, it’s not what I wanted, but I have found happiness and that is far more important. There were two things that changed my life, firstly, I had to let go of my past. Not just once, but over and over. If you measure constantly what you can do today, with what you could do before at any point you choose, you will make yourself depressed. Live in the moment, not in the past. The second well I have Adam to thank for that, as he brought happiness into my life and without him, I wouldn’t be as happy as I am right now.
I think that this change of routine is going to make a difference, I don’t know yet if it’s the scale of difference I am hoping for, only time will show that. Yesterday, I got through the day without feeling so tired as I have in the past couple of weeks. That alone is so good to feel. I can’t be sure if it was the extra hour asleep in the morning or the combination of everything that made it easier, but it was good to feel. I still slept for an hour and a half in the afternoon, but the rest of the day, I didn’t feel as though I was moving through thick syrup, I was in a far more normal world. There is one fact that I have known from the earliest days of living with PRMS, if you aren’t dead on your feet, you can deal with everything, even severe pain, not with ease, but at least without wanting to scream and cry throughout it. Looking back to those early days I find rather funny now. I can remember thinking that I was dying, just because I was drained of energy and had aches and pains that no one could explain. I honestly believed then that it was as bad as it could possibly get, that there was no way that it could get worse. I was totally 100% wrong about that one. But if I had a choice, I would choose to stay exactly where I am now, as I am happy, something I know I wasn’t back then.
Read my blog from 2 years ago today – 12/07/13 – What is going on….
I woke this morning with one of those wonderful quandaries of life, I was desperate to go to the loo and my legs were so painful that I was in not hurry to actually stand on them. Just trying to find the controller for the mattress elevator caused so much pain in my back and hips that I had no choice but to take it slowly, slow with a full bladder really isn’t the……..