Pig Headed

I’ve decided to be pig headed. I am going to suffer for it. I am currently without any pain medications, and I am going to let it all happen. I am determined to try, and prove a few things to people who need it proving to.

I know it’s going to be unpleasant, it already is, my last Tramadol was this morning, and normally, by now, I’d have taken my bedtime one, but I don’t have any.

Yesterday, I slept most of the day, and then slept well last night, in preparation, trying to get myself into a mental space to be able to deal with the pain I know is coming. My fibromyalgia is pretty bad now, and this little fool hardy enterprise will show others just how bad it is. I have a name for a doctor who apparently knows a thing or 2 about this terrible affliction, but can’t see her for a week, and I am honestly sick of dealing with doctors who are too caught up in the hysteria surrounding Opiod painkillers to prescribe them. Some people don’t respond to other treatments, I am one of them. Because of the paranoia surrounding these strong painkillers, I guess I am meant to suffer.

I am going to attempt to do what we have planned for the weekend still, regardless of how I am feeling. My son needs his father, and we need to have some sort of life together. It seems doctors don’t seem to get that, I thought they were meant take an oath to do what’s best for their patients, but obviously, that is a complete load of crap.

I hope I can get some sleep tonight, I will need every bit of it to deal with what I know is coming, I’ve been here before.

Andy.

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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.

Hmmm.

Feeling so wrecked for the past few days has been very difficult. I have somehow managed to drag myself through the day, even though I am sleeping poorly because of the fibromayalgia pain. It is so damned frustrating not being able to get comfortable in bed to sleep, you lie one way, your hip hurts, you lie another way, your shoulders hurt, or lying on your back, which doesn’t feel right to me, makes everything hurt. It’s matter of picking the least painful position to sleep and then hope you get some.

When I am like this, I feel a complete failure. That is the source of the related depression. You just can’t do anything. I feel like I am failing Jack, failing myself, just………, failure.

I hate it when I have stuff mapped out and planned, only to have this hit me, and then it’s just a huge game of catch up for weeks until I get to a point where I can make headway with the tasks I have underway. Sometimes, well lot’s of times, MOST OF THE TIME, I don’t even get caught up before it hits again, so I have this snowball affect happening, where everything I have going on just gets put on the back burner and gets further and further behind.

I hate how I, at 41, am in such a state, that I need to live at home with my mother again. Don’t get me wrong, it is easier knowing that when I am as bad as I am right now that there is someone around to help, but it does suck it out of you knowing that you just can’t manage completely on your own anymore. I will admit it, I’m man enough, it makes me cry at night.

Today we had to go shopping. If we didn’t, we wouldn’t be eating. Mum doesn’t drive, so I had do that. Well, we went out at around 10.30am, and got back around 2pm, we had our new floor tiles delivered this morning, so couldn’t go earlier. The later in the day, the more mammoth the task gets for me. Just driving up to the shops 15 kilometres away is arduous when I am like this.

Then, dealing with all the sensory overload while out just makes it worse. We stopped in at a fake plant place because mum wanted to see what they were like, and as soon as I went into this small, overcrowded with stock shop, and with the smell of stale human urine, I needed top get out, so I went out and waited beside the noisy, busy road, to have a smoke, as the claustrophobic feeling was one thing, but the stink was just too much.

After we went there, we went to the shopping mall, where we got a frozen drink to keep us going until we got home, and the noise was unbearable in the food court, as I guess, and from experience, all food courts in shopping malls are. Mum wanted to sit down but I was clearly not coping with it, so I said I didn’t want to, and walked around with our frozen drinks while we did the rest of the grocery shopping. They had some very noisy (and pointless) performance (you know, some dance school exploiting very young girls to make more money, while plastering the young girls in make up that looks good on nobody) on in the centre of the mall, which really didn’t help either. After we managed to get the groceries in the trolley, we ended up with the worlds slowest checkout operator, it felt like I aged 50 years while the transaction took place. What should have been about a 20 minute grocery shopping experience took 40 minutes, yes, that is how slow the operator was. I mean, I had 3 bags of groceries (well, if I packed it, it would have been just 2 bags…).

After we got home, we had a late lunch, I flopped onto the couch, and tried to interact with the rest of the family watching a movie on blu-ray, I was too wired from the outing, but too tired to move. I was bored crazy, even though it was a movie I actually enjoy, I was just too tired and not focused enough to actually enjoy it this afternoon.

When Mum, Dad and Jack took the dog for a walk this afternoon, I went outside and watered the garden, I just had to do something where I felt like I had actually achieved something. Doing the shopping I guess was an achievement, but actually doing something other than that mundane task was what I needed. Even watering the garden was tiring, but at least it means the garden will keep growing, and I will be able to enjoy it when it does.

Anyhow, I need to go to bed, I dread it at the same time as yearning for it, I need it because I need sleep, but I dread the almost certain possibility that tonight will just be another crappy night of sleep.

Andy.

 

Barely.

Last night I knew things were going down hill. For a few days I had been getting some of the tell tale symptoms that I was crashing. I kept on getting very windy, which nearly always precedes a flare up of Fibromyalgia for me, but it was coming and going for the last few days without anything progressing further. My fatigue levels had been in the upper end end of the 1 to 10 scale, for weeks, but have been even worse this past week. And the pain has been waxing and waning as well, but a gradual overall increase has been the trend.

After dinner last night, everything started to hit, except a rise in the pain, which hasn’t fallen below about a 6 on the 1 to 10 scale for weeks. The fatigue hit me like a truck, I mean, I was feeling okay one minute, the next it was almost all over red rover. I have been getting increasingly unsteady on my feet in recent days, but last night it was one step forwards, 3 steps sideways until I crashed into something, the wall, a chair, the door….. It’s almost like I feel like I am going to pass out.

Nausea, oh so much fun. I eat a delicious meal, not at all rich or spicy, just tasty normal food, and then it comes like a wave. My left hand has started to drop shit all the time again, which is the hangover from the stroke, as the fatigue gets worse, my ability to cope with it all slides. When I am okay, you wouldn’t even know I’d had a stroke, but when I get heavily tired, then it just all falls apart. Last night, as I was doing the dishes, I dropped a plastic container into the sink of water, it splashed on me, and I just got so annoyed and frustrated that I yelled at my hand to settle down, and almost felt like ripping it off.

I am just frustrated and annoyed this is happening. I try my best to stay positive about it all most of the time, but today, I was completely written off, pain, fatigue, everything, and for the first time for a bit, I have found myself monstrously depressed about it, and feel like completely giving up. This afternoon, I popped out the front for a cigarette, and was staring off into nothing, and just thought that I felt like I wanted to just soldier on until I keeled over, and then it would be all over. I don’t know if any of that makes sense, it is just too much to deal with right now. I can’t enjoy anything. I can’t sleep well because of pain, I am always dead tired, I can’t eat anything without feeling nausea, or if that doesn’t happen I get IBS and farty as well, I can’t concentrate on anything much, I sit and watch TV, hoping to be able to take my mind off it, but sitting down hurts. Lying down hurts. Standing up hurts. I reckon that if I was in space, floating around would hurt.

I so much want to do things, but just can’t do anything. I tried to sleep today, but it was hopeless. I just couldn’t get comfortable. If it wasn’t great pain in my hip, it was in my neck, or one of my shoulders. My feet were just throbbing with pain. My forearms aching. I feel like screaming.

Well, for now, I will go and have a shower and try to sleep once again. I have dosed up on pills, trying in vain to reduce the pain to a bearable level, so I guess I know tonight is going to be hell, I have resigned myself to that.

Andy.

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.

Watching the storms.

Yesterday we had a pretty impressive storm outbreak, brought on by the remnants of Tropical Cyclone Penny. After lunch, Jack and I went off for a little drive, as the sky was looking menacing to the south and west of our place, and, of course, my favourite photographic subject is storms.

We headed a little east and north of home, trying to get a good vantage point of the storms across open ground looking back towards Walsh’s Pyramid, away from power lines and any other man made structure that wasn’t photogenic. It’s hard trying to get a good landscape shot without power lines, and I hate power lines. We sort of left our run too late, as we found a spot, and the storm was really advancing towards us very quickly. I did get a couple of shots, not lightning, the ultimate goal, but the storm was menacing.

This was taken not long after we got out of the car. The sun was still illuminating the foreground. That is Walsh’s Pyramid, the pyramid shaped mountain on the left. The foreground is a sugar cane field in fallow.

gordonvale jan 2018 001

Only a few moments later and the sun was rapidly vanishing, and so was Walsh’s Pyramid !!!

gordonvale jan 2018 006

This was the view to the west of our location, which was at a place called Packer’s Camp., a very turbulent sky indeed. The wind was astonishing as it came over. Under that rain on the left is where we live. There is a mountain about 900 metres above sea level in that rain.

gordonvale jan 2018 009

As the cloud front came upon us, this was the view of the sky to the north. Amazingly blue, with the menacing blackness over our heads.

gordonvale jan 2018 012

We quickly decided that staying out, trying to find a better location to get more shots was a daft idea, the wind was gusting very strongly, buffeting my little car very noticeably. And the rain, it was almost impossible to drive. The water was accumulating on the road so quickly (and these roads are made to cope with a big deluge and drain well), that it was like driving through a pond, the water was 3 or 4 inches deep just from what was falling from the sky.

After a slightly nerve wracking drive the 10 kilometres home, we pulled up in the carport, went out the back verandah, and found 2 inches of water across the rear verandah, it was raining so hard that the drain couldn’t get it away quickly enough. I ended up going out in the rain with the shovel, and dug a trench about 3 inches deep to get the water to flow away down the slope, it was raining so hard, just 10 seconds out in the rain meant you were drenched right through, and the rain was cold !! The trench worked rapidly, and it drained off, even while it was still pouring down. We ended up with 60mm of rain in the space of 30 minutes. in the old scale, that’s probably a bit over 2 inches. In 30 minutes.

Later in the evening, we had a round 2, with lightning flashing intermittently to the west and east. I went out by myself after Jack went to bed, but didn’t capture anything worth sharing. It was nice to see some lightning return after a couple of weeks of nothing.


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Today, it has rained a bit, we’ve had about an inch of rain again, but nothing as spectacular as yesterday. We woke this morning to a bit of a disaster from our elderly dog, we have to contain her during the night in a playpen, so she doesn’t do her business all over the house during the night, we have a tarpaulin under it so if she does anything, it goes on it, and not the floor, and we just take that out to wash it off and clean it. She is very old, nearly 17 years old, and a Jack Russell, she is an awesome dog, but just getting a little incontinent. Dogs, or any pet for that matter, are for life, and you just have to take that getting old will happen.

The disaster was her best yet though. It was contained, but all over the tarp, her bed and bedding, her, it was just full on, and it stank so bad. Even when it was all cleaned up, the smell lingered, and we sprayed every version of room deodoriser we have around. Some just made it worse, as their scent, mixed with, well, the smell of shit, was more revolting than the smell of the shit on it’s own. I know, it’s hard to imagine air freshener making it worse, but trust me, it did. I ended up going over the entire floor, even though it wasn’t on the floor, with a very strong bleach and water solution with the mop, and after that, the smell was gone. I think the bleach dissipating into the air actually killed the smell that was lingering. Tonight, you wouldn’t even know there was such a mess this morning.

My fatigue really is a problem right now. It just doesn’t seem to want to subside. The pain is going from uncomfortable to bad on a roller coaster over the days, today wasn’t so bad on the pain front, but then I have had all sorts of gut issues, and nausea. This fibromyalgia is just sooooo fun !!!

It wears you down.

Andy.

Having wins when losing

The fatigue and pain have driven me into being very absent minded at times recently. I had a spell late 2017/early 2018 when I thought I was losing my mind, so forgetful and just felt like I was going crazy. This isn’t quite as bad, yet, but it is certainly disconcerting to be going through it all again. I also have moments during the bad patches of fatigue where I start slurring, the result of a slight stroke a few years back, when the hospital put it down as a “migraine”, and then a week later they discovered, after I went back with another excruciating “migraine” that my blood pressure was through the roof and I should have been having either a heart attack or a stroke.  They never actually tested me to see if I was, but gave me pills to bring my blood pressure down quickly. The slurring is just one thing, I also tend to let go of things unexpectedly with my left hand and my left foot drags when the fatigue gets bad as well. Oh, what a barrel of laughs my life is !! At least I can say it’s not dull !!!

Today I had a pretty major win, I still had to get school shirts for Jack, like, the ones with the school logo on them, as that is the requirement. I went on a whim to town (well, I needed smokes, so that was the real reason), and decided to take Jack along and go look at the Op Shops, as Jack loves Op Shopping. I have scoured them for school shirts for weeks, to no avail, and then today, I walk in to the Lifeline Op Shop and there they are, 4 school shirts. I was going to buy 3 brand new at the school, as I had failed to find any, they are $30 a pop, so just to keep him clothed for school for 3 days, it would have cost me $90, a lot of money when you don’t have much to go around. Today’s stroke of luck cost me $16 for all four. So, I saved big. It’s nice to have a win.

Apart from that little adventure, I have been completely wrecked by fibromyalgia, we’ve had the vinyl floor removed ready for tiling, I’ve named all of Jack’s school stuff, and, well, I can’t think, mind block. It’s been a crazy day. Right now, I need to go to bed, hopefully, hopefully, I will sleep all night and sleep in tomorrow, I should be so lucky. We shall see. (I apologise now if any of this sounds disjointed, it’s just my head).

Andy.