Just surviving day by day.

I just seem to manage to get through every day at the moment, it’s been like it for months. Wake up wanting to stay in bed, get out of bed anyhow, do what is needed, nothing more, and then crash sometime around 1pm, get up in a daze at 4pm, stay up in a zombie state until 8pm or 9pm, go back to bed. An endless groundhog day.

I have managed a few out of the norm things, Jack and I went off to the Cairns Show, it was a great day out, but I ended it with an appointment I’d had for over a month, basically Dad picked up Jack from the show, and took me to the eye surgeon, as that was the appointment, eye surgery at the end of the day. The first eye had been a success (surgery for glaucoma), so that day was the other eye. Remind me next time not to have an overloading day before surgery again.

My FND was on edge after the day out ( too many people, noise, smell, just too much to overload my senses) and although the surgery went well, it isn’t pleasant. My brother picked me up at 6pm, and we came back home, then spent the night watching the NRL State Of Origin. Fortunately, our side took out the series, so was sort of worth being completely worn to bits. I was truly a one eyed supporter, seeing I had a patch on one eye !!

The next day, the fun began almost immediately. An alarming new FND symptom for me, although I wasn’t really alarmed as such, had arrived in the form of what I call the disco jive. I have never, ever had these sort of symptoms before. Yes, some tremors, some muscle twitches, but this was full on head jerking to the side, arm going like an octopus, and leg dancing around like no one was watching, plus a few random hip thrusts thrown in for excitement. I couldn’t make it stop, it got worse as the morning wore on, and although it was alarming to see, I went with it because I had considered myself lucky to that point that I hadn’t had that sort of thing before, and it is pretty common in FND. That’s why I wasn’t alarmed.

My son and Mum noticed, I know they were worried, so I said, ” don’t worry too much, I’m not, I am lucky this is the first time it’s happened, it is what it is”. I know it was probably pretty scary to see, but at least they weren’t physically experiencing it, and if I was okay with it, so should they be. They settled down and were okay.

I had pretty much had enough of it all by lunchtime, so went to bed and slept for 5 or 6 hours, when I got up it was more or less gone, but after about an hour up again, it did start to reappear, not as intense, but I could feel it building more intense as time passed, so 8pm, I was back in bed.

That all happened just over a week ago, and I have been on the verge of it happening again every day since, but as I feel it starting to take hold, I go to bed.

Just to make it more interesting, I caught a very bad cold, first time for 3 years, yes, I did have an official covid test to make sure it wasn’t covid, which kicked in the day after my disco jive session. So I’ve had a runny nose, less energy than even I normally do, coughing like crazy, which has made my abs so sore I should have a six pack by now, and just generally pretty much bloody over everything. It’s times like this I think of Dory in Finding Nemo……….”Just keep swimming, just keep swimming….” Oh, and yes, I have the short term memory crap too, so even reminds me of Dory more !!!

Today felt like it was going to be write off.

When I woke up this morning, I didn’t think anything much would be achieved. I was wracked with pain, and barely able to operate mentally, but I guess a couple of coffees helped the latter.

I didn’t actually do much this morning, moving was a struggle with the pain, but I managed to get moving enough throughout the morning to achieve a few things. I had a list I WANTED to do today, alas most of the list is still there, but a niggling part of the garden that needed attention finally got done, and looks so much better. I had to move a few pots around (one is a massive one with a standard rose in it that I have been working on for the past 2 years) and also helped my father put up a shaving cabinet on his bathroom wall ( drilling very thick ceramic tiles is a long arduous process, especially on shoulders !!).

We lost power for about an hour this afternoon, so I got the generator out and finally ran it like I have been meaning to, since it hasn’t been used since February 2021, so over 12 months ago. I started it and ran it, but didn’t hook it up, I was waiting to see how long the power would be off, and just wanted to make sure it was running before I needed to use it if the power was out for longer. So another niggling job out the way.

Apart from that, I have now got a decent, over 16 hour, music playlist sorted out on my Tidal account, I had a few shorter ones, but they weren’t long enough for a decent day out in the car without hearing the same thing 2 or 3 times. Plus, I rediscovered a whole heap of music I haven’t listened to for absolutely ages, I have a few USB drives for the car, but haven’t used them since I changed the stereo head unit to one I could Bluetooth my phone to. It’s just easier to use the phone than having a USB drive sticking out the front of the stereo.

Anyhow, short and sweet, I am really tired now ( I actually made it through the day without a sleep, which is a bonus) and bed looks soooooo good.


Fatigue, my bad friend……

One of the most crushing elements to fibromyalgia, apart from the incessant pain, is the fatigue. You never NOT feel tired. Sleep 6 hours. Tired. Sleep 12 hours. Tired. Sleep 16 hours (yes, it does happen). Tired. You always feel tired.

Then, there are the times when the fatigue crushes you. You get so tired, that if you don’t go to bed, you’ll collapse. You may have slept 8 hours the night before, but only been awake for 3 hours, and it comes like a tidal wave, engulfing you so fully that there is nothing you can do except go back to bed, or seriously hurt yourself as your body MAKES you lie down.

I go through spells of it, the past 3 days have been like this. The completely crashing out after only a few hours out of bed. I try and fight it, you know, listen to the ‘experts’, who say to not succumb, to fight through it, otherwise you will never get through. Well, there is a reason why I type it as ‘experts’. The only real expert is the person who is the sufferer, no 1 hour lecture at university as part of a medical degree makes anyone an expert. Sufferers are the only experts.

The problem with fatigue like this, is if you push and push through, it just gets worse, not better, and with ailments such as fibromyalgia and Functional Neurological Disorder, it then sets of a chain reaction of the various symptoms of those as well. More fatigue equals more pain, more brain fog, more tremors and other neurological issues, speech impediments, all the lovely stuff that I suffer every single day. As and expert in my 2 major conditions, I know sleep is vital, and it is vital to sleep when you need to, regardless of how inconvenient it is for regular life.

With these sort of medical conditions, it is like you are in a constant battle with the rest of society. Unless they see you with a hand going spazz, or the twitching nerves in your face, the illnesses are invisible, so they think you are completely normal. It’s not like having a missing limb, or some other visible sign of disability. As the sufferer, you also tend to make this situation worse, because you avoid people seeing the bad stuff, for their benefit, because you know that most people feel uncomfortable if they see something going wrong with someone else. You’ll say, “yeah, I’m good”, when someone asks you how you are today, because, most people only only ask that as habit, they actually don’t genuinely want to hear that you can’t think properly, are struggling to speak coherently, and have your hand stuffed in your pocket so they can’t see it shaking like mad.

With the medical profession, they are the ones you have the real battles with. Fortunately, times are changing, there are a growing number of health professionals who don’t think they “are God and don’t you question me”, and do listen, and try and understand, but they are still light on the ground, and lots of old fashioned ideas are still floating around about these medical conditions, especially in Australia. Here, they still view these as mental health issues, but internationally, in virtually every other country, they have listened to the research, which clearly points to these being autoimmune diseases. Treating people for an autoimmune disease with mental health strategies, which is common practice in Australia still for FND and Fibro, is actually proven by international research to be very detrimental to the patient. My own GP is pretty good, she listens to me, and is willing to look at these things differently, but the guidelines for her profession in Australia complicate things. Until they accept the commonly accepted international research, we won’t get anywhere meaningful.

I must now go back to bed, I am barely awake.


Digesting another diagnosis.

Mid last year, I had my regular diabetes eye exam, and there was an anomaly. My eye pressures were too high. For anyone who doesn’t know, it is a sign of glaucoma. Glaucoma is where the eyeball pressure is too high, and it slowly destroys the optic nerve, making you go blind. Not exactly an exciting prospect for a photographer and artist.

One of the first signs of damage is losing your peripheral vision, fortunately, apparently my peripheral vision, according to the Professor who is now treating me, is better than a 20 year old still. I also have 20/21 vision, aka, very acute/excellent vision. But, unfortunately, I definitely have glaucoma.

It is treatable, I have commenced 2 different eyedrops, one I was using for a few weeks, and a new one I started on Tuesday ( the day the diagnosis was finally confirmed), which are supposed to help drop the pressure in your eye ( I have glaucoma in both eyes…..). They sting like crazy, and my eyes are like they are full of sand, they are that sore. I have also had some very weird visual things going on, predominately when I am looking at my phone, or looking at things in detail. I can focus on it, but only briefly, then it is like the signal between my brain and my eye goes nuts, and everything is like it is zooming in and out and swirling at the same time. This is my eyes adjusting to the lowering of the pressure in them, but it freaky deaky, I have to say. Hopefully it settles down quickly.

The next part is going to be the fun part ( as if this craziness isn’t fun enough !!!), in about 4 weeks, I am going to have laser surgery on one of my eyes, followed by the other 4 weeks after that, the procedure is designed to open up the way the eye releases pressure, and once done, I shouldn’t have to use eye drops again for about 5 years. The procedure is done every 5 years but only 3 times (so basically it will work for about 15 years that way) , it can’t be done anymore after the third time.

When I have the first eye done in 4 weeks, I will have to wear an eye patch for about 4 or 5 days apparently, when I told my son, he said, ” well you’ve got the bald head, you’ll look like Nick Fury”. Obviously, we watch too much Marvel !!!

It has been a lot to digest and process, especially with the weird visual things going on with my eyes due to the treatment so far, but I am now just going with the flow. It is what it is. I seem to say that a lot. I have so many things going on, what else do you do? Curl up in a ball and cry all day? I have to still live, so you just make the best of what you have got. Life isn’t easy, how you deal with the things thrown at you is what makes it easier, or harder. As long as I can find something in life that makes me happy, then I will be okay.

A day in the garden

Today, after a very late sleep in, I have been so heavily fatigued recently, I managed to get motivated to find some energy from somewhere and get into the garden.

I always have multiple things nagging away at me, little jobs here and there, some not so little, and it is always an achievement when something gets crossed off that list. Today I got a few plants planted, finally, that had been sitting in their pots for weeks, sorted out the vege patch a little, put 4 big bags of horse manure into the 2 vege boxes that aren’t planted yet, and just did a bit of general tidying up mainly around the food production area of the garden.

I also got some solar lights sorted out that have been irritating me recently, a couple have been moved, so now down the side veranda I have nearly a full strip of lights ( the light bulb strand type ones) that I am patiently waiting to see how it looks once it gets dark in the next half an hour or so, and moved some others to bring more light around the compost bins (so when the compost is taken out after dinner, you can actually see). I had one string of the light bulb lights across the front of my shed, now I have just one much brighter side mounted light on the awning at the front, excited to see if that has turned out the way I am anticipating when it gets dark as well.

It has been raining on and off, and the butterflies and birds are all over the garden at the moment, even the Sulphur-Crested Cockatoos and Kookaburras are making their way back, as the season changes. Although, it looks like later this week the Wet Season is going to have one last gasp, so I am waiting until that has cleared away before I tackle some of the bigger plant moving jobs that need doing. I have a heliconia to move, it is in the wrong spot, and also an ornamental ginger, which is also in the wrong spot, but at the moment, if we get a proper blow from this last gasp of the Wet Season, I want them where they are as they will offer some protection to the car and other parts of the property.

Tomorrow, I have a pretty full on day, I have to have my corneas scanned, as they are trying to work out why my eyeball pressure is high, it is usually a sign of glaucoma, but every other thing that would point to it being glaucoma is actually indicating the opposite, they think my corneas may be thicker than average, hence the scans to be done tomorrow, to see if they actually are. If they are, it isn’t a problem, and I don’t have glaucoma, but if they are normal, then the testing merry-go-round will continue. I can’t drive tomorrow, as they have to dilate my pupils to do the tests they are going to do, so luckily my brother will drive me, as he is on holidays.

Anyhow, it is time for my dinner, so I will leave it here for now.


Crazy times and resetting life

First of all, I have been so negligent of this blog for so long, I feel guilty, but everything has been pulling me this way and that with life, I mean, life is life, it’s unpredictable.

I could attempt to do a big post to catch everything up at once, but it wouldn’t really achieve much, except to exasperate my limited mind. That last statement probably gets you pointed in the right direction with why the long hiatus from writing here, the daily struggles with Fibromyalgia and Functional Neurological Disorder limit my abilities to do much a lot of the time where concentration and focus are prerequisites. Most of the time I can’t even speak properly, those around me every day know what I am saying, they can decipher the foggy brain and the jumbled words, writing is a friend, at least I can make sure it is right before I publish. Verbalising words is the tricky bit, because between my brain and my mouth, words change, I might be saying something like “I need to go to get some things from Bunnings”, but instead it might come out like ” the things need me from Bunnings”. Yep, it makes me feel as crazy as it sounds, but I am used to it now, it’s been happening for a few years, it’s just how life is. The worst thing is when my brain completely swaps out a word with a word with a completely different meaning to what I was intending on saying. You can understand why going out in public, or talking on the phone, is something I am not so keen on anymore.

I have been busy with numerous projects over the past few months, garden projects, arty projects, some videography projects and also getting a few nagging tasks sorted out which have been waiting for a day when my body would allow me to put the time necessary in to complete enough of it to be worthwhile even starting it.

I have mild panic attacks from time to time, most of the time they are fleeting, I get a handle on it quickly and it passes within minutes, but I am now up to number 4 of the really bad ones I have experienced in my life, like, going into a complete overloaded mess. The most recent one was a doozy, and it caught me so off guard. I knew I was approaching a mental state where there was too much stress going on in life, the morning before it happened, I started getting a few “off” feelings, and said something to my mum about it, but pressed on with what I needed to do (I really had to do this thing, it was something that someone else had stuffed up, but the only person the stuff up was going to affect was me, and I was the only one who could fix it).

So, I go to an office to sort this mess out, it would take time, and sometimes when you visit this particular office, it could be a three hour or more epic (sort of like staying on hold when trying to call this office, without the drive you to commit homicide music). I get my dad to drop me off ( because my car was out of action, one of the stresses that was building up), go inside, and every thing runs smoothly to start with. I had taken my headphones to listen to music to try and limit being overloaded by the noise in the office, but because I had to listen out for my name to be called, I decided against using them. Mistake 1. I sat there for a while (it didn’t actually take too long to get the business I had to deal with sorted in the end) and found myself getting overloaded by the amount of people, the noises, and generally the increasing anxiety of having to speak to a person to sort out the issue (which when stressed, the inability to properly communicate issue gets worse). Then the clincher came in the form of a small child, kicking the front of the customer service desk. It wasn’t a frenetic kicking, the mother was trying to stop it, but it was this slow, thump……thump…….thump…….of a small child kicking a particle board panel of a desk. My heart was racing, my head was spinning, I was starting to hyperventilate…..this couldn’t be happening !!!

So, I closed my eyes. I started slowing my breathing, concentrating on each inhalation and exhalation, counting “1” in my head for every inhalation, and “2”, for every exhalation. It slowed my breathing, it slowed my heart rate ( I had my fitness tracker on and it was about 180 beats per minute when it went ballistic, I got it down quickly to about 85 within about 3 or 4 minutes) and eventually I was calming down. Very soon after, my name was called, and I got the issue sorted out very quickly, and got outside as soon as I could, where I immediately lit a cigarette, and tried to relax. To be honest though, I was a mess until I got home, I had to wait for my dad ( he had an appointment at the hospital) to pick me up, and we had lunch while we were out, but until I got home, I had this overwhelming uneasiness, and also a nagging nausea that wouldn’t budge. Once I got home, I collapsed into bed, exhausted, for about 3 hours.

The last time I had a panic attack like that, was at least 8 years ago, my son was around 3 at the time. Previous to that, I hadn’t had one for nearly 15 years (that was after the death of my grandmother, a house fire, and my former wife having a miscarriage at 8 months, which all happened with 2 months of each other), and the first one I had was when I left University because the pressure that had been put on me to succeed during my High School years by my father came to head, which led to a panic attack and a full blown nervous breakdown. Note to any parents out there, NEVER put that sort of pressure on your kids, being a teenager is hard enough, let alone making them think their life will come to an end if they don’t make it to university. I made it to University, well and truly, but all that pressure was too much, so I couldn’t complete that course. It took me years to step back into tertiary education, but I did, under my own terms, and not under the pressure that had so selfishly been put upon me.

Anyhow, I am getting very drained mentally (obviously talking about these things is mentally depleting), so I will leave it here for now, I have got a couple of other posts in the process at the moment, so hopefully I will get something else out to you all in the next day or two. Until then, look after yourselves.


Where’s the Lemonade?

They say when life gives you lemons, make lemonade. So, where’s my lemonade?

I have been flattened by my multiple issues for weeks now, and just as the sun was coming over the horizon, and the fog lifting, I ended up in hospital.

No, my multiple issues weren’t the cause. Somehow, I ended up with a massive, very severe, intestinal infection. Like, things that ring alarm bells coming out the wrong places bad.

I got home last night, after a 3 night stay at hospital, it should have been 4 nights, but my mental health and coping mechanisms after 3 nights were failing, predominately because the enormous stress put on my whole body from this life threatening infection was enough to start having a cascading effect on all my other issues, in particular the functional neurological disorder. Yesterday I was on a rollercoaster, wanting to come home, not sure if I could, my body was going through the final stages of purging the infection, and I was just so emotional and confused, it was beginning to get to the stage where I didn’t know what way was up and what way was down. Thankfully, by lunchtime, a major hurdle was overcome, my bodily processes started being normal again, and because the blood tests were good, when I asked, finally, if I could come home because I wasn’t coping anymore, they let me home early.

The folks at the Cairns Base Hospital were brilliant all the way. I was severely ill when I entered, and although very weak, still a bit emotional, and still trying to get myself back on track otherwise, they did a superb job making me well again, and treating me well, especially considering my neurological disorder and my autoimmune disorder. Any stress, be it a physical one or an emotional one is very dangerous for both, and they made everything as easy for me with both of these in mind.

I know the coming weeks will be hard, I know it, it will take time for my gut to heal properly, but with the infection gone, it’s just healing. The effects it has had on the other things, well, hopefully I can manage that as well, and hopefully those effects of this major illness don’t linger on too long.

Right now, I am thankful for modern medicine, professional medical practitioners, and a health system that cares for those who don’t have unlimited resources. I seriously think that if I was living in the USA and relying on their uncaring health system, I probably wouldn’t be here anymore, yes, that is how seriously ill I was.

Anyhow, I must take my wreck of a body to bed now, and hopefully soon, things will be brighter.


Changing routine

I have been analysing my daily routines over the past week, trying to figure out how to get more out of each week, and to achieve some of the things I am wanting to, but so far have failed to. Half the battle, I believe, is to get your head in the right space.

So now, I have a few major, non-negotiable things I have to do most days. Wednesday and Saturday are washing days, Saturdays are cleaning the house days, and during the week, I home school my son, so all those things have to happen that way. It’s the fitting in of other things that always seems to slip up. So now, I have started to make sure I am doing other activities with the same sort of regularity. I have started doping a session on the treadmill after lunch every day. I hate doing daily walks in public right now, I am self conscious of my weight, maybe when I get down a few more kilos, I won’t be so bothered, but for now, treadmill it is. I have one at home, so why not use it?

I am also doing weights now, which seems to be helping quite a bit with weightloss, I started doing it before the treadmill, about a month before, and lost 5kg’s just doing that. I still have a lot of trouble with my shoulders doing weights, but I persevere, as I know it’s doing me good. I am trying to make sure that it is one of the first activities of the day, and then I do another shorter session in the afternoon before dinner.

I have something like 40kg’s to lose, so any way I can make it come off, the better, and the sooner the better as well. I have lost 40kg’s since my heaviest, which was due to medication I should never have been on and bad medical management by my former GP, I was put on it when I was 34, and now 10 years later, and 5 years after I stopped taking it because I knew it was not doing me any good, I am getting it off again. I actually lost 20kg’s after stopping the medication within about a month, with no changes to diet or exercise. That shows you the negative impact that medication was having.

My current GP, who is, quite frankly, the best GP I have ever had in my life, thinks that this medication I was on actually created a situation called metabolic syndrome, which actually makes it very difficult to lose weight, so the fact I am means I must be hitting the right chords with slight changes in diet (mainly just dropping my 1 sugar from my coffee, not much else) and doing the weights and walking. The weights have seemingly triggered something that walking alone wasn’t.

Along with getting more structure in the exercise stakes, I have also started to set aside dedicated times for doing my art, doing photography, editing photography and video’s I create, and now also writing back here on this blog. I want to write most days, so here, day 2 of hopefully every day or close to it, I am writing again.

Next month, I am going on 5 day photography trip with my brother, just the 2 of us, in the Outback about 200km’s away from here. We are going to visit a place called Mt Surprise, part of it will be landscape photography, but my brother wants to do some astrophotography as well, and early September is pretty much the last chance to almost guarantee clear skies at night out that way, because from mid September the very early Wet Season Storms start out in that region. Personally, I am looking forward to being out there then, but also, I am starting to get very excited about the now not far off Thunderstorm season, as that is when the camera and GoPro will get a real workout.

Anyhow, I’ll leave this here for now, until hopefully tomorrow, when I write again.

Hey there.

Okay, so first things first. No, things didn’t work out, but they did. We have amicably decided not to continue. I think the age difference was a bit too much for both of us in the end. The good thing though, is it has given me a new confidence in myself, and we are still friends.

Now, I am seeing someone a bit closer to my own age, and apart from being closer in age, we seem to have a tonne in common, which is making things feel good. I am not going to jump the gun, we will see how it all goes. So far, so good. This dating thing is scary as heck when you are 44. It seemed so much easier at 24. Anyhow, at least, after 9 years, I am dating again. Finally feel the need/want for it, and feel ready.

Unexpected surprises.

After a lengthy break from the online dating thing (because it wasn’t working, and geez there are some frightening women out there who scared the heck out of me) I decided a few weeks ago to delve back in to see if I might have some luck again. Some things certainly haven’t changed, I have got some pretty scary, pushy messages, but something unexpected happened as well. I think I may have found someone.

Now, I am surprised as much as anyone. I have not been in this position for a decade. More my own fears stopping me than anything else. We are actually even going to go on a date soon, we have it locked in. The thing that has surprised me the most, is that she has so many things in common with me, and we have just sort of hit it off. Well, that isn’t the thing that has REALLY surprised me the most, it is the age difference between us. There is a bit. But, she doesn’t seem to be worried about it, and neither am I, surprisingly. With everything else going for gold in our relationship so far, I don’t feel it’s an issue. I was sceptical when she first sent me a message, but something made me respond. I don’t know what it was, sixth sense……

The funny thing is, she was scared to send the message, but did. She even said in the message that she hoped I’d respond, but she was nervous I would. The two of us, nervous about it, but, something has happened. It has felt like a whirlwind, and I can’t believe how……I will say it, how in love I have fallen for her. Okay, I will fill in the age question, she is younger than me by a bit. She is real, not a scammer, I do know this for a fact.

I seem to have really got lucky. I had dreamed of meeting someone with a few things. She has them. She is intellectual, which I have craved for in a relationship, she is even University educated and is working towards establishing her career in that field now. She is incredibly empathetic, so reassuring for someone like me who is also an empath. And luckily for me, she seems to be right into me, even though I am a single dad !!

I am not quite jumping on couches with Oprah, but I am feeling the happiest I have felt for a while. I can only hope that it is the start of a new chapter in my life, a happier chapter.