I don’t know what I’m doing….

Living with this crappy ailment means half the time, I don’t know what I am doing. Ground down by pain and overwhelmed by fatigue, you lose your mind. I can get up whilst thinking about what I am about to do, like go and make a drink, or hang the washing out, and by the time I have walked the 3 metres from one side of my bedroom to the door, I will be wondering what it was that I had got up to do. It’s absolutely crazy.

If I get distracted, by something else, or someone suddenly talking to me, that’s it, it will take ages to remember what it was I was up to again. I know now that it’s all fibromyalgia related, at first I was really concerned I was getting dementia real fast or something, but then when I had a better patch with the fibro, it got better again.

I have had a really weird day today. Plans thrown out the window, firstly, because of the weather, we were going to a market, been planned for the past week, but now we are under a tropical storm, that has dumped nearly half a metre of rain on us in the past 36 hours. So, we could drive a couple of hundred km’s to get there, as the direct, 30 km route is too dangerous in this weather, it is very mountainous, very narrow and winding, and very prone to landslides with heavy rain. The prospect of driving all that way, although I was excited to go to the market, was not exciting at all.

So, I spent, and wasted 2 hours this morning waiting for a bloke to come and buy my trailer, who never ended up showing up (the second one now), then he organised to come this afternoon after 4 pm. He still never showed up, and now wants me to wait until next week. Then he might not still buy it. What is wrong with people ??? We decided after the morning debacle, to head out anyway, but closer to home, not half a days driving.

We went to a few Op Shops, which was productive, we got a few things we were looking for, and then went to Bunnings for some stuff to finish off the kitchen renovation. Then, I treated mum to lunch, and we wandered around the shopping mall for a bit, got a few other things we needed, then headed home to be back in time for the chap who never showed up.

We pottered around this afternoon when we got back, I contacted another potential buyer of the trailer, who is just as fickle as the previous two I have discovered, put the last 2 handles on the new kitchen cabinets, tidied up my tools which were spread everywhere, cooked some steak for dinner, and now, I am just about ready for bed.

We have had so much rain, it’s incredible. While driving around today, it was torrential. In some ways, it was time to come home when we did, with basically rain so heavy that even on well drained roads the water was at least 2 inches deep, and with even deeper puddles where the rain was frantically trying to get away, it was exhausting. You have to be on your toes when it’s that wet, especially with so many lousy drivers out as well. Since I started writing this 20 minutes ago, we have had 25 mm of rain, or about an inch. I told you the rain is heavy.

It’s actually funny. Last night, I went to bed at this time, and we have basically got exactly the same amount of rain as the same time last night. This time last night we had had 189.3 mm, today, up to now we have had 186.9 mm. The rain is supposed to be like this for a few more days, and it is currently being slated by those in the know to be the biggest rainfall event in over 2 decades. Crazy, the first few months we have been here, we have had the highest daily temperature ever recorded here, and now we are experiencing the wettest period in over 2 decades.

The past couple of days have also been tough. Every time we have gone out, and then returned home, we have been expecting to let Smudge out after being inside in the air-conditioning to do her business, but she is not here. Same in the mornings when we get up. You get so used to having a pet around, I mean, 17 years is a long time, that it is all the regular things you do automatically that catch you off guard. I am sure it will be some time before we get past this, she was such an amazing little dog. Gee I miss her.

Andy.

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Worn down by an invisible illness

It is unusual for me to write 2 posts in one day, but I didn’t want to load up the previous positive one with the downer of the suffering of my Fibromyalgia. It is getting tougher and tougher.

I read an excellent piece by a woman on a website a few days ago, where she was talking about how difficult it is to live life with Fibromyalgia. It was really well put, but right now, for the life of me, I can’t find where the page is, or what it was called. That’s the fibromyalgia right there. Bloody makes your memory shot to pieces.

Anyhow, she was talking about how, even when you have a good spell, it’s not good by the normal sense, it’s just less bad than a bad spell. It is exhausting having this illness.

Most days, you wake up tired. You might have had a great 10 hours, or even 12 hours sleep, but you are exhausted. Some nights, if you are lucky, you sleep all night without waking at all. Other nights, you toss and turn, either you just can’t switch off, or you just can’t seem to find a way to lie in bed without pain. For me, it’s about 3/4 of the time that sleep is restless.

Then, every day, you have to summon out of somewhere the strength to do anything. You have stuff to do, but most of the time it is just so much effort to do anything that you feel like you are running 20km. Trust me, I do actually know what that feels like, I was an endurance runner in my youth, and have run that distance several times. Most of the time, I push myself through the day, even though all I feel like doing is sleeping, and also, although I don’t, you feel like taking any drug that will numb your body. I have in the distant past, and before Jack came on the scene, smoked marijuana, and it is virtually the only thing I know of that actually gives relief of any sort to chronic pain. The pills, like Tramadol and Panadiene Forte take the edge off the pain, to just bearable, but they don’t give the relief that pot does. I do have to say though, after I had a bad flare up a couple of years ago, I was given Oxycodone, and I pretty much didn’t feel anything for the 2 or 3 hours it lasted !!!

So every single day, you seem to get more and more exhausted, the pain just wears every single bit of positivity out of you, and somehow you have to stay positive. Also, the apparent experts say that you need to get exercise, and guess what, I get more than most, but it is a struggle, and no, it’s doesn’t improve it. It’s all a big myth that the experts spin. I think you should attempt to get as much exercise as you can, but it truly is a superhuman effort for anyone suffering from Fibromyalgia.

I consider myself lucky to some extent, as I am not the only person in the house with Fibromyalgia, my mother has it too. She has said that her worst flare up, which saw her needing to go to hospital, was infinitely worse than child birth. She’s only had to go to hospital once with a flare up so far, where all the medications the doctor gives you doesn’t reduce the pain, I’ve gone through that about a dozen times now, and the only thing that reduces it is the one thing they hate giving you, and won’t give you a prescription for in Australia, Oxycodone.  Well, they won’t give you the thing that does work that is less harmful, but that is because of it’s irrational illegality at the moment still here.

The multitude of other things that are symptoms just make everything seem too much most of the time, if it’s not the constant pain and fatigue, it throws nausea, IBS, completely stuffed memory (which if you have a long spell of it you start to feel like you are losing your mind and start to worry you have Alzheimer’s), and, well all sorts of other small things that you just don’t realise are related but generally stuff you up. Imagine having something that makes you not able to regulate your temperature well, well Fibromyalgia does that at times. Imagine having a bout of skin so sensitive that it is painful to even wear anything, sit on anything, be touched by anyone or anything, that’s what fibromyalgia does as well. It really is, no way to put it nicely, fucked up.

I honestly don’t know how I don’t just curl up in a ball and give up.

I was talking with my mum this afternoon, as she has had a rough day with it today, and we were talking about a friend that has it too, who basically will bail out on things at the last minute, because she just can’t deal with it. Mum reckons that I must be made of tougher stuff, because she seems to think I have it worse than the friend. I said to her that although it is tough to deal with most of the time now for me, I, at this point, have the viewpoint that I can’t stop life for this. Every day is a struggle, it hurts, I am half asleep basically, but I just can’t let myself give up on life. In all honesty, I really don’t know how I do  it. I think it is a mind game I play with myself, my brother says I am an all or nothing person, so if I do something, I don’t stop until it’s done, I over do it. But, when he said that to me over a Christmas, I said to him, that if I don’t have that attitude, then I just couldn’t do anything, and I may as well end everything now.

I do feel sorry for myself, but try not to let that rule everything. I have the condition, but the condition isn’t me. I don’t know why I have this condition, I don’t know why fate has dealt me this hand, but I have to keep going. I guess one day I may not be able to, I feel like that now, but right now, I am going to try and still have a life, regardless of how hard it is to have one.

Andy.