It's New Year's Eve, so a goodbye to 2016 and a huge Hello to 2017, I love New Year's Eve. The chance to have a brand, spankingly new year to dream to plan and to be happy. I am hoping for new medication to make living with my awful disease easier.
I have Mixed Connective Tissue Disease (MCTD), which is Lupus, Scleroderma, Raynaud's, Sjorgen's and Polymiositis all wrapped up in one huge hurty package. Some people with MCTD don't have all these and some have it at different levels, trust me to get the lot and at times it is pretty bad. To top that, I have Fibromyalgia, degenerative Arthritis in my spine after a car accident and Bechet's Disease. Phew, no wonder I get knackered so much.
All these diseases have inflammation, fatigue and pain as a symptom. For me, the inflammation causes swelling around my joints, my connective tissue is hard, bit like it should be a chamois leather mine is like a dried up chamois leather, so stiffness and yet more god damned pain. Mine affects my organs, so if around my heart I get pericarditis, pain and irregular heartbeats, lungs I get Pleurisy, pancreas, pancreatitis and so on. The Bechet's causes ulcers where you have mucus membrane. so, eyes, nose, mouth in your pants, on your skin. They hurt like hell, all this coupled with fatigue.
At times it feels like an endless world of pain and fatigue, months of not feeling you can get out of bed, and losing days with pain, which is intense. BUT, i have found what helps me is to try and distract myself. I liken the pain as like being an orchestra on full volume. If I don't find a way to turn that volume down, life would be unbearable, so I learn new things, I craft, I teach myself to play instruments, I would sing, but my vocal cords have been affected.
I have Mixed Connective Tissue Disease (MCTD), which is Lupus, Scleroderma, Raynaud's, Sjorgen's and Polymiositis all wrapped up in one huge hurty package. Some people with MCTD don't have all these and some have it at different levels, trust me to get the lot and at times it is pretty bad. To top that, I have Fibromyalgia, degenerative Arthritis in my spine after a car accident and Bechet's Disease. Phew, no wonder I get knackered so much.
All these diseases have inflammation, fatigue and pain as a symptom. For me, the inflammation causes swelling around my joints, my connective tissue is hard, bit like it should be a chamois leather mine is like a dried up chamois leather, so stiffness and yet more god damned pain. Mine affects my organs, so if around my heart I get pericarditis, pain and irregular heartbeats, lungs I get Pleurisy, pancreas, pancreatitis and so on. The Bechet's causes ulcers where you have mucus membrane. so, eyes, nose, mouth in your pants, on your skin. They hurt like hell, all this coupled with fatigue.
At times it feels like an endless world of pain and fatigue, months of not feeling you can get out of bed, and losing days with pain, which is intense. BUT, i have found what helps me is to try and distract myself. I liken the pain as like being an orchestra on full volume. If I don't find a way to turn that volume down, life would be unbearable, so I learn new things, I craft, I teach myself to play instruments, I would sing, but my vocal cords have been affected.
I thank whomever for where I live, my house is my safe place, I have such wonderful views and spend hours watching the birds from my window. We have feeders by each, so I get to take photographs, watch them bringing their babies to the feeders and trying to stop the cat nabbing them for a crunchy lunchy.
I would love to have a bit of relief from pain, I am now resigned to having to use a wheelchair, not just for going out with the dogs, I need one for indoors too, but that's OK, if it gives me more freedom, then it is good. Just have to not concentrate on the negative.
I am writing this blog as a distraction, a way of keeping in touch with friends who are all over the world and to, hopefully, help people to understand chronic, enduring pain and chronic disease. I hope it doesn't end up one big pity party, that really is not my way.
We'll see, if it gets too bleh, then off with its head!! I am going to start 2017 busy keeping a daily journal. One of my interests is geneaology, I have managed to get back to the 14C and while it is nice to know the names of my ancestors, I know very little about who they were. So, I thought, I'll write a journal and hope that future descendants get to know the old bat in the family tree that is me.
So, enough for today, just laying the foundations for this blog, it will get not so drawn out, just putting down the concrete, so to speak.
Have the best New Year, we are spending it indoors, just me and he and the animals. A T Bone steak, chips and mushrooms, followed by chocolate pudding and strawberry custard, as requested by Mr T. Then slobbing in front of the telly, Hootenanny, champagne at midnight and off to bed. Oh back in the day I would never have believed my New Year's celebrations would be so sedate. But we will dance, just he and me, we will be outside watching fireworks at midnight and so the old year slopes off and the new one comes bounding in. Super excited at what it holds.
Have a lovely night and a great start to 2017 xxxxx