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.

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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.

Another adventure.

Today, at 8.30am, Jack, Mum and I loaded ourselves into the car for a well deserved day out. We headed on down to Innisfail, a town about 80km south of Cairns. It’s where Jack was conceived, so I showed him where he was made !!!

We had come through in November, when we moved here, but it was at the end of a 3500km journey, and we were all worn out by that stage, so we didn’t hang around there then. It’s taken until now to actually have the time to head down there again.

Innisfail is a town of Banana’s and Sugar Cane, and has one of the most amazing collection of authentic Art Deco buildings in the world. This was a result of a destructive cyclone in the same period that Art Deco style was all the rage. So, when the town was rebuilt, it was done in the style of the day, and also because it is a place that doesn’t tear old buildings down in the blink of an eye, it has this amazing range of Art Deco architecture for all the world to see. If you ever get the chance, and love Art Deco, as I do, go there and see it for yourself.

We had a bit of a lap around the town to the Op Shops when we were there, and I managed to pick up a chocolate mould to make Easter Eggs at home, as well as a set of car seat covers for my car, which, cost the princely sum of……$4. Considering the last set of brand new ones, which I bought in October, cost over $50, and they fell apart within a month, this was a complete bargain. I have washed them, and seeing they survived that, I think they will be good for a few years.

After our little trip, well, my little trip down memory lane, we headed down to my favourite beach in Australia, Etty Bay. The rainforest goes right to the sand on the beach, it is amazing. I sort of had an ulterior motive to go, as Jack hadn’t seen a Southern Cassowary in the wild, he’d seen one in a zoo last year, but not in the wild. He got the chance to see 2 today. Etty Bay’s little secret is that there are Cassowaries that wander right down to the beach. The 2 we saw today, were a male and a chick. Male Cassowaries, like me, are the ones that actually look after the chicks, the mother just lays the eggs and that’s that, wanders off and leaves the male to do the rest and raise the kids. They are truly amazing to see in the wild. Jack couldn’t contain his excitement.

On the return home, we took a drive out to South Johnstone, and had a look at the big sugar mill there, then headed towards Bramston Beach and had our home made lunch of salad rolls, which I made up before we left this morning, and put in the esky.

We got back home around 3pm, it was a great day out, nice to have a break from all the stuff we have been doing for weeks now. Mum made Tacos for dinner, I have done a crap load of washing, and now, I am just about ready to hit the hay. It’s been a good day.

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.

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

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.

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.

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.

Doing my best

With everything that life has thrown at me, the second most worst thing is Fibromyalgia, it is certainly the most debilitating, but my ex, and everything she threw at me (figuratively and literally) was the worst. But this is about the fibromyalgia, it’s in the present, the other in the past.

I have been wrecked for days. Not sleeping well, until last night when I had a can of Wild Turkey and cola before bed although I rarely drink, at least it kept me asleep all night, although I did wake up early again, who knows why, but my body, as exhausted as it is, still wants me to be awake at 6.30am. I have had at times excruciating pain as well, so a full blown flare up is under way.

As crap as I am, I have been promising Jack that I would go out on my pushbike for a ride with him, a decent one, so he could show me how well he is doing with the bike riding thing. Well, half awake this afternoon at around 4pm, we went for a ride, first it was to the park just around the corner, I wasn’t sure how far I could push him to go, but we got there in a breeze ( I haven’t ridden a bike for waaaayyyy to long). So we rode through the park, and down to the highway. Still, he was going great guns, doing it all easy, and even I was doing pretty good, all things considered.

We got the the highway, and I bit the bullet. The tyres on my bike were a bit soft, not flat, but nearly there, so I decided that we would ride into town. The highway is about a third of the way to town, so we went across when there was a break in the traffic, and kept going. Down past his school (which was a good test, as we may be doing the bike to school thing together every day when school starts), and on to the service station to use their tyre inflator. Once I did that, my bike was even easier to ride.

Last year, I bought myself a ladies cruiser style bike, very retro, it’s powder blue and white with some tropical themed trim, and a bit of tan on the seat, pedals and handlebar grips. It was my very first new bike in my entire life, every single one I had had in the past was secondhand. Yes, you did read correctly, even though I am a man, I bought a ladies bike. It is easier for me to get on and off, as it doesn’t have the cross bar so high, and with the fibromyalgia, coupled with all the problems I have with my back from breaking it in 2005, I need something that is easy to use. It has a wide seat, I do have a more than ample backside, and those swept out and angled back type handle bars, so I don’t have to lean forward to ride, I can keep my back nice and straight and upright. I have to say, it is so much more stylish than any men’s bike, men’s bikes usually come in a range of black or grey, and usually are mountain bikes, which, unless you are a mountain biker, suck.

I was really stoked at how well Jack did with the ride, we ended up going right into town, which is 4 kilometres, and then back again, which is a slight uphill ride all the way. I think he was thrilled to do it, and especially seeing me out riding a bike, I think he didn’t think I could do it !!! To be honest, I am really stoked that I managed to do it too !!! And, considering this was the first time I had gone for a decent ride on the new bike, it blew me away as to how easy it was to ride, it is such an awesome bike.

Before our little outing this afternoon, we went into the city, as Mum wanted to buy a new TV.  She ended up buying a 50 inch screen one, and after watching an action movie on it this afternoon, all I can say is, wow ! Its Ultra High Definition 4K, and with the new Blu-ray player she got, it is just amazing sound and clarity of picture. I now have my TV back, it’s only 32 inch, but that is perfect for my bedroom, and it’s nice to have my TV back in my room so if I want to watch something on my own, I can.

Anyhow, I am completely wrecked, my evening painkillers are beginning to kick in, so I should attempt to get some sleep I guess. Goodnight.

Andy.

Landscaping

For the past few days, I have been working away at a patch of the backyard that we are going to use as our main food production area, as well as an outside seating space where we will have a fire pit. It was a run down, weed and rubbish plagued area. Before Christmas, we took 2 trailer loads of rubbish away from this space, pulled down the already falling down chook run, which we didn’t want anyhow as chooks in suburbia don’t work, and the fact that if you watch the news, this part of Australia gets mega sized pythons, so the chooks wouldn’t last long anyhow.

So, this is a couple of shots beforehand, taken by the realestate agent to sell the house, so good camera angles don’t show how bad it really was. (I forget to do before photos all the time…..)

There was a lot of rubbish down behind that shed too.

So, I have removed the chook run, and will be able to re-use most of the materials, I did send the chicken wire off to be recycled, but some heavier mesh, most of the timber, steel posts and roofing iron will all get a second life. That project will be the next one.

I have made a large vege garden along the retaining wall, as bending over to tend veges is so, well, in your 20’s, not fibromyalgia affected 40’s. In between the posts of the verandah in the 3 spaces, I have strung plastic coated wire, and now have 2 varieties of grapes and a passion fruit vine planted, which will be trained up onto the wires, thus creating a screen from the neighbours place, as well as producing a bounty of food.

It may not look pretty right now, but the big area to the left was where the chook run was, and was very uneven, so required a lot of earth to be moved to level it. The other dirt patch near the vege patch was a huge dip in the ground, now it’s nice and level. The end posts of the chook run will stay, as I am going to attach the previously mentioned heavy wire mesh to them to grow beans and kiwi fruit on.

These are our first green leafy things, lettuce, spinach and rocket for salads, it’s the real pick and mix salad, we will just pick the leaves as we need them and leave the plants to keep growing.

This is our passionfruit vine. I have already tip pruned it to encourage some laterals to grow, to train out onto the wire. There are 2 wires, so it will be trained onto both in time

Below is one of the 2 grape vines, this being a white table grape, it’s been in the ground for about 3 weeks now, and is nearly high enough to start training as well.

Below is the newest grape to be added, a Red Globe table grape. It’s still very short, so I will stake it up soon once it gets some length, and then hopefully by the end of the month, it too will be ready to train onto the wire.

This space beside the shed will be producing bananas and Paw Paws. I have seedlings of the Paw Paws growing in seedling trays, once big enough they will be in there too.

Lastly, this was the gift from my brother for Christmas, a weather station. It measures wind velocity and direction, temperature, rainfall and humidity.  The panel with the data is in my bedroom on the desk, and it will be invaluable with the whole food production thing.

I don’t really know how I have managed to do so much, I have been very fatigued for weeks, and in pain, but being out there doing this has helped take my mind off it, if only for a while. I haven’t done it all in one hit, just as I have been able, so sometimes I have just spent 20 minutes doing some, then other times an hour.  The feeling of achievement is so worth it. I guess the food will be too, once it grows !!!

Andy.