All over the show, and other crap.

It’s really hard to keep a positive focus all the time, especially when you’ve hit about day 8 of a really bad patch with fibromyalgia. Add to that the 242 days since my father decided to tell us he hated us all on Jack’s Birthday, yeah, a real classy move that, and all the continuous crap to do with that since, and yeah, it’s fucking lovely. It was true, he still hates us, because if he didn’t, he wouldn’t such an arsehole. The only consolation is that he hates everyone, and anyone who knows him, the feeling is likely mutual.

I try hard NOT to be my father. I think that that probably has irked him more than anything, seeing how Jack and I get along so well and what a fucking brilliant dad I am, and what a completely pathetic one he was, and still is. I certainly didn’t learn it from him, that’s for sure.

Yes, I am being really negative. I don’t really apologise. Right now, I don’t even think a holiday surrounded by beautiful women would fix me up. I am worn out, ground down, there really isn’t anything much left. I need a lucky break, but it just isn’t, and probably won’t happen. Can I just go to sleep and someone wake me when this shit is over ?

242 days ago, I was going to delete my Facebook account, and because it was glitchy that day, I didn’t get a chance. Yes, I actually hit the button to delete my account, but it didn’t work. Now, I am getting close to doing it again, starting a brand new one under an assumed name, and choosing who I want to remain friends with, people I KNOW I can trust not to pass crap on to people I want gone. Oh God, this post is all over the place, but I will keep going as is.

When I go through a spell as bad as this current bout of Fibromyalgia is, I get to the point where I get scared. The main thing is I get scared about if it’s going to end. The longer they go, the worse it is. I really don’t know how I get through it. The pain and fatigue just grind away, until, well, I don’t know, it just gets so demoralising.  I don’t know if anyone understands. I just want to feel normal, what ever that is, for just a bit. It is so hard.

Don’t think I’m a snowflake. I’ve worked 18 hour days 7 days a week as a stockman, I’ve been kicked by horses and bulls, and just got back up and back into it. I have worked damned hard in my life, and barely complained. Broken bone, if it didn’t stop me I didn’t bother to go to the doctor, it’ll sort itself out. I’ve been stabbed, and just held the wound together and driven myself to hospital. I am pretty tough. But this cruel illness has stuffed me. My mother has it and she reckons the pain of a bad flare up is worse than child birth.

I don’t know what to do. I don’t know what to do. I used to be the person who everyone came to for answers, and I can’t find the answer. I’ve got to stop writing. I am alone, I don’t even have a loving caring partner to help me through this. No, I’ve got to stop, all I am doing is getting myself all upset and crying. This is how bad fibromyalgia is.

Andy.

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Pulverised

I am feeling the most shattered into little pieces I have for quite a while. The fibromyalgia is just bearable, meaning the pain side, it’s constant and quite intense, but not quite yet at the, “shit, I need to go to hospital” stage. I don’t have any of the stronger stuff, well stronger than tramadol, to fall back on at the moment, so I guess I will be finding myself a new doctor in the coming days. I haven’t got a new doctor since moving from interstate, so necessity is calling to get on with it.

It’s hard to get on with it though, when you are basically feeling like you are being squished to a pulp.

I had a dream sleep on my new mattress last night. Yes, I finally got my trailer sold and the very next morning I ordered it from the store up the road, and it was here by lunchtime the same day. That was yesterday. Last night, I got into bed, and instead of tossing and turning for half an hour before finally getting comfortable, I was comfortable as soon as I got in, and went rapidly to sleep. It’s a pity the fibromyalgia is giving me hell, because I did wake up a fair bit during the night in pain, but every time I lay back down, I was out like a light in no time flat.

This won’t be a big post, as I am really ready to sleep, today I have been on the verge of sleep since 10am. Just haven’t been able to do it. I might just wrap it up here, because my hands are starting to get very painful, and typing is becoming difficult, but that how life is right now. Not so good.

Andy.

Just………..well, just

I am just hanging in there. This is one of those posts. You know, where I lay out how bad the fibromyalgia is, and the struggle worsening today. Well, it is, but isn’t one of those posts, but it is. Wow, that was a great bit of back and forth, wasn’t it ???

I still try and make myself laugh when the fit hits the shan. Yep, there I go again. Today has been rough. Real rough. This morning I woke up asleep, and really haven’t shifted past that all day, but somehow I have managed to get to this end of the day. And pains have been popping up everywhere. At one stage, the stage where I had to drive the car to pick up Jack from school, my right arm, around and just below the elbow, got so painful that I couldn’t hold it up and hold the steering wheel. “So what?” I hear you say. Well, I drive stick. I hate automatics. That’s the so what. So every time I had to change gears, I had to move my arm up in agony to steady the wheel while changing the gears (yes, I am Australian, we drive on the correct side of the road !!!)

It started waking up asleep, stepping out of bed, and as I took my first step, pain shot through every single toe on my foot. During the day, it’s been between my shoulders, and travelling up my neck, and randomly appearing in my calves, my feet, fingers, arms, and anywhere else it tickles it’s fancy.

Anyhow, not to let being absolutely crippled get me down, I  actually managed to mow the grass, and finally sold my trailer. I have been getting stuffed around by half a dozen people, they arrange a time to come, then no show, or turn up, agree on a price, say they are going to get the cash and come back, never to be seen again. Well, today’s chap contacted me last night, drove a 2 hour round trip from the Atherton Tablelands, this afternoon, and after about 2 minutes looking it over with his Uncle, handed over the cash, did the paperwork, and that was that. I have been stuffed around for over 2 weeks, and then this fellow made it all so easy. It was refreshing to finally encounter someone who has manners enough not to stuff someone around.

Now I have $500 in my pocket, part of which is buying me a brand new mattress tomorrow, the first brand new mattress I will have ever had in my 41 years of life. The rest is going to be rolled into a business venture that I am going to try and embark upon. I will fill you in on that as it unfolds, but just let me tell you, it will be multi-faceted.

The other little bits of today where I was capable of anything much, I managed to get Jack to and from school, it may not seem like much, but today it was climbing Mt Everest, I cleaned out a bunch of plastic milk bottles that we need to take to the container refund scheme, yep, a stinky job, and popped a cutting of turmeric, that the chap that is tiling our place brought with him for us this morning, into a pot.

On the subject of tiling, he is nearly finished, and it looks fantastic. The renovations are nearing completion, well the major bits anyhow, with the last major thing to do, the removal and replacement of the kitchen bench tops, being done early next week, yet again, by me. We will be without a functioning kitchen for about 5 days, but it will be so worth it. That is the time it will take to remove it, get the new tops made to size, and then for me to fit the new ones once they are ready. That will be the last majorly disruptive thing to be done. Over the next few months we will paint the place as well, but that is easy and will be done in small bits, as finances allow.

Well, for now, I might leave it here, I need sleep, and my body feels like I have done 20 rounds with Mike Tyson (minus the ear biting bit), so hopefully, seeing the pain killers seem to be just kicking in, I will be able to sleep.

Goodnight.

Andy.

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.

 

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.