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fibromyalgia

Untitled Brain Splat

You know it’s been a while since you’ve blogged when you can feel the dust on your keyboard, and also that you get to smell it from burning inside your heater when you switch it on.

I don’t think there’s much structure to this post or any purpose. Other than to just dribble a little bit. It’s probably matching how my life feels currently. I’ve felt particularly overwhelmed, and I’m not entirely sure what or why, a combination of things perhaps?

I feel like I’m in search of some normalcy at the moment, work is overly busy and stressful, and demanding. My health has not been fantastic, my back is worse than ever, I’m back with regular tests on my parathyroid, dealing with my mental health. Then there’s the usual money problems, girl problems, car problems, and the list goes on. I’m trying to stay afloat, and some times it doesn’t just seem to stay there. It’s up and down and lately feeling like I’m sinking. But I can’t seem to find anything that I can cut out that’ll help me, and no one else around to really help me either.

I’m dealing with an internal identity crisis, and also what do I want in life? I ponder that a lot. But it’s always different each time. This time around it feels like a lot more factors are influencing what I want. It’s confusing, and also has my emotions all over the place. What do I do? I don’t really know anymore.

I feel tired, worn out, sore, stressed, overwhelmed, confused and exhausted.

Nanna Matt

“I’m not a doormat, I’m a welcome Matt.” – MJM

My Nanna always had this saying, I’m not a doormat, I’m a welcome Matt. I guess it came down to the fact she was friendly but not to be taken advantage of and walked over. I wish I had some of that in me, I’m still learning about not being walked over and used by people.

I’ve had several memories pop back in my head over the past 12 months from other people in my life. I do miss my grandmother, she essentially raised me on a part time basis. I used to take a trip from Victor Harbour to the City (Edwardstown to be exact) once or twice a month, via the bus, and stay at her house on a weekend.

She lived in one of those red brick housing trust places. While the house has been levelled I can still remember it like it was yesterday. The royal red shag pile carpet in the lounge room, the kerosene heater that was in front of the fireplace. The retro lino and the laminex kitchen table to go with it.

On the warm summer nights I used to lay on her bed next to her under the window, and she’d tell me all sorts of stories. How when people turned 100 they’d get a letter from the Queen. Although she never quite made it to get one herself. How when they used to go to the cinema as a girl, and you wouldn’t just see a movie. You’d get news and all sorts of other things, all of it being fictional, like going to the moon. When eventually became a reality which she got to witness. She got to see some amazing feats, but also had to endure two world wars, the great depression and a handful of other smaller wars as well.

My Nan always had a fantastic sense of humour too, never crude. But quick witted. When I was a teenager around 16 or so she started nicknaming me “Creepin’ Jesus”. Someone of my stature who made no noise, and still don’t do this day, when they walk around. Later in life she lived with us as her age was getting on, down in Victor. She would be making a cup of tea and I would come out from being asleep and scare her because I’d be standing next to her and she wouldn’t have heard me coming, “jesus”. It happens now even with clients at work. Maybe I could have been a cat-burglar given how quiet I am! 

I do miss her a great deal, I think she was always wise when it came to life. I didn’t see it back then but I certainly see it now. There are times where I wish I was able to go and ask her for advice, but unfortunately I can’t anymore, and it’s been a long time since I spoke to her. I always struggled when it came to seeing her, after her stroke I think I wanted to preserve the memory of how great she was, and all those stories she told me. Rather than to see a frail woman in a nursing home who’s stuck between the 1940’s and 1990’s on a frequent basis.

Last year would have been her 100th birthday too.

Great Scott!

Whoa, this is heavy.

There’s been a lot on the past week, and while it hasn’t been stressful it’s just been a lot to take onboard. Work has been particularly busy due to everyone needing to be able to work from home, or remotely due to the whole COVID-19 outbreak. There is plenty of work and I’m keeping busy, but also trying to keep my distance from clients in case of those who are infected and may pass it onto myself.

On Wednesday I had my first psychologist appointment, it was at least a comfortable introductory session where we could talk about what’s going on, why and how we can go about working on them. My main concerns have been the depression, which seems to have been a side effect of my chronic illness, the last six months have probably been the worst of it. Speaking with both my counsellor and my psych, we’ve ended up in the general ball park that the Fibromyalgia had the side effect of depression and anxiety. But also that it’s had another side effect of disassociating with any of the empathy that I had before towards others in my life. In turn, this has cause some friction with others, and hurt them as well.

So working on that will be my main priority, and the psych is also giving me tasks on helping me manage pain with Fibro and also mapping some new neural pathways. It’s a start, and I’ll just have to keep going.

Friday I had another follow up appointment with my GP, just to see how the anti-depressants are going, and so far no major side effects. I feel stable, while just a tad low in mood. But not as low as the Dothep I was taking. It’s certainly doing a better job. We’re going to see how it goes for another month and reassess again, and I can also look at going up in the dose if I feel I need it.

Yesterday, was also my birthday. Schfifty-five, no. Just kidding, Thirty-Seven. I don’t feel any different to be honest. Maybe a tad of anxiety around life that I’m late 30’s and not doing all the things other people do like marriage and a family. I’m still trying to find my way. But that’s been a low level lingering feeling for quite some time. I’ve never been a big birthday person, I got a message just after midnight from Riss saying Happy Birthday, in her own way too. A few from the other people that count, and the ones I usually expect won’t remember or message.

I caught up with an old co-worker/house mate I haven’t seen in a couple of years, but we’ve kept in touch online a little, and he’s only 20 minutes away. I spent the evening with my parents, a simple dinner, some cake that put me in a sugar coma until this morning, and also watched John Wick with Dad as he’s never seen it. He enjoyed that and is going to watch the other two.

Today is just kicking around the house and doing a few things, and hopefully I get to hang with one of my favourite humans later this evening.

Having a Macbook dedicated to blogging is also helping me write more frequently and also have ideas for other things to talk about.

Last Summer

I don’t know what I did last summer, to be honest I don’t think I’ve really done a lot of summer things. I know last year I played cricket, in what was likely my last full season ever. I played one game this year, but given how Fibromyalgia is, it’s a struggle for my body. I’m in pain and aches most of the time, but I try and ignore it while I’m playing. But the recovery time after can be over a week, so it’s not something I can do weekend after weekend anymore.

When I think of Summer there’s cricket, warm weather, going down the beach. Which are things I take part in, but there’s also BBQ’s and swimming, day trips to places. None of which I’ve done in years, I think it’s been at least 4 years since I’ve been in the water properly at the beach. Even then, I’d just had my tattoo so I couldn’t fully go into the water.

This summer I’ve wanted to go swimming in the ocean, and I’ve never got much of a chance. When I’m down the beach I’m usually by myself, I can’t really leave my car keys etc out as they might get stolen, and I can’t take them in the water with me or they’ll get ruined. I did think I could probably put them in a zip lock, and then into a zipped pocket and I could go for a swim. I’ve also wanted to do things like a day trip down south and go with someone. But no one really ever answers if I do ask, so I’m stuck in this limbo of going on my own and feeling like shit, and never going because I don’t have anyone to go with and feeling like shit. Which in turn, makes me end up being anxious and not going anyway because I don’t want to go alone. It’s a vicious cycle that I haven’t been able to break for a long time.

I’ve been to the movies by myself, but I guess I can deal with that because I can hide in a cinema for a couple of hours and no one will see me. But I feel disappointed because I haven’t done any of these things, and while there are people I can consider close who would do it, they seem to leave me as an option for when they have nothing else to do rather than someone they want to spend time with. It’s a shitty feeling.

Two Hundred Crappy Words a Day

I think I have tried multiple times to blog more often. I have my desktop pc and my Dell laptop, but I always find myself distracted. So I bought a cheap Macbook (that’s also pretty old) with the only intent of using it to blog, which so far I’ve done maybe 95% of the time. I had to use Google to turn off iMessage on the Mac, and also logged in to update some work info. But other than that, it’s stayed logged into my blog permanently in Chrome.

Since my diagnosis of Fibromyalgia, the use of my hands has deteriorated a bit, to the point where I can write in my journal for all of maybe five minutes and then my hand cramps up. This could also be due to me not doing a whole lot of writing onto paper anymore, and that I spend most of my time on a computer typing instead.

For now, I’m blogging and also trying out some handwriting exercises I got through Reddit that can help improve my handwriting. I guess not only am I trying to write two hundred words a day into my blog, or a blog post but also get two hundred words out on paper so I can build up my tolerance to writing with a pen again. It’s been slow going but I’m getting there.

I’m not really sure what else I can write about on here, other than just expressing my thoughts each time I feel the need. I’d like to put something up regularly but there are times when I don’t have anything to say really.

But we carry on, two hundred crappy words a day.

Getting comfortable with the uncomfortable

Two hundred crappy words a day…

One of my first counselling sessions was about making me comfortable with the uncomfortable things in my life. While it’s small things to some people, they are big ones to me. Things like receiving gifts and compliments would make me uncomfortable, and I had to get comfortable with those things. Why? Because I was taking away someone else’s happiness in doing so. I never felt like I did anything to earn them, as I’d spent most of my time doing something to earn something.

Last year I had to get uncomfortable but not offering financial assistance to those who were in a tight spot, and start doing things like sending myself on a holiday, doing things I want and giving myself that mental freedom. I guess I needed to be a bit selfish. I did that, and it was uncomfortable. I had to distance myself from people, I had to not text them, not spend time with them. Change my habits so that I could look after myself. It wasn’t a comfortable place to be in. That continued through 2019 and I kept feeling uncomfortable with a lot of things, the second major one was standing up for myself, holding people to their word and calling people out on their behaviour towards me, and that it’s not okay to treat someone like they have. It may have caused some issues but it was something I needed to do.

I’m experiencing another kind of uncomfortable at the moment and I’m not entirely sure where the cause is. But I’ve been in a low, depressive state for some time now. I would say since late 2017 is when it started. It could be from the fibromyalgia, it could be from being overwhelmed with too much going on, or given my families mental health issues. One of those could be coming to the foreground. But either way, I needed to deal with it. While I think maybe I’ve dealt with it too late, and I’ve hurt people I love and care about. I still need to deal with it and hopefully I can repair some of the damage, create that safe space for people around me again.

I’ve had to do some things that are also uncomfortable, and confronting. I’ve had people call me out on my behaviour, and I don’t think I’ve been totally aware of it. I’ve had to see my GP about a mental health plan, organise other things with my existing counsellor. I started on anti-depressants last night, I’ve been on several before but they were with the main aim of helping my Fibromyalgia and reducing the pain and effects. This time around I’m taking them for depression, mood swings, low mood and all the other shit that comes with it.

It’s been confronting, and uncomfortable. But it’s not something I can just mull on and do whenever I feel comfortable because that’s how I’ve done it in the past and it hasn’t gone to plan.

I’ve booked in with a psychologist, and started the anti-depressants. I can only see how it goes from there, there won’t be trying anymore.

Do or do not. There is no try.

twentytwenty – the year that wasn’t

If I had to sum up 2019 in one word, it would have to be “Shit”. But that might not accurately describe it, 2020 isn’t off to a great start either, and it’s not even the end of fucking February.
While I spent most of the year uncomfortable due to growth in several aspects of my life. The usual shit life throws at you was on top of that as well.

Dad having a stroke in March was the kick off, it’s left me spending a lot of time thinking about my future, and what I want. Or more morbidly, what am I going to do once I have no family left? Dad and his wife are all I essentially have. The closest after that is Riss and the boys. But I don’t stay in contact with my other siblings and have no desire too. No wife, no kids.

Later on Riss having a stroke compounded that, to nearly lose one of the closest people in my life left a horrible feeling in my gut. One that makes me feel like I haven’t accomplished a lot with myself, and also… That I wasn’t happy.

I’ve definitely been in a funk, and looking back on how long it’s been going for. Around late 2017 is probably when it went low, and it’s stayed there since. I can’t be sure if it’s from all the various medication I’ve had to take over time, or just that I went down the rabbit hole and I’ve been there since.
Having to deal with one ex this year be someone I didn’t think they ever could be, nasty and vindictive and getting lawyers involved. Was almost the icing on the cake.

But I stuck to the things I had learnt through my counsellor, my logic and it was settled in the end. But it still doesn’t make me feel good after that, I still feel horrible. Not as in a horrible person, but that someone could be so horrible. To twist the truth and even make themselves look like the victim to my own lawyer. I’m not sure that’s how lawyers work. I guess that’s what happens when you call someone out on their behaviour, they’ll lash out.

My uncomfortable space is telling people “no” and standing up for myself. Rather than have them walking over me like most have been doing, I’m no longer a bank, I’m no longer someone’s counsellor, and I’m not there for people when they have a bad day and need their behaviour to be justified.
I’ve created more time and space for myself, and now that I’m on a roll. I’m not going to stop, I have things I want to be doing, things I want to be creating. Things that are good for the soul and give me some happiness and satisfaction with what I’ve done, and I want to be able to do this without anyone’s opinion, or approval. Or telling me what I can and cannot do.

After a lengthy conversation with a friend in the UK the other week, I said I don’t find a lot of happiness, I don’t find a lot of joy in anything, to which she said “you’re depressed”. And she’s right, I would at a guess say that I’ve been avoiding it for quite some time. Where as usually if something comes along and presents me with a challenge I’ll tackle it with a solution head on.

To add further on into the year, while I’m in my uncomfortable place and dealing with bits and pieces internally. My best of all friends attempted to take her own life, triggered by a lot of stress and being stuck in a place with no way out. I think a lot of people tend to know how that feels. But I feel shitty because I wasn’t able to help her, but this time it would have been help in the form of friendship, or advice, or at least picking her up when she got down. But I was at that stage when I couldn’t be a bank or give financial help anymore. Which is something I’ve had to stop doing for my own good.

It’s been a hard road, up and down emotionally. I can be great and 10 minutes later I’m feeling infinite sadness. Is it the fact that I’ve trialled so many medications with my fibromyalgia that it’s started to play with my mind? Depression and anxiety are two of the major side effects of the chronic illness, and I even begin to question my own sanity at times, and my choices.

The worst thing is I’ve lashed out unintentionally at those I love and care about, I’ve compromised their safety, and also that I’ve been a safe space for them to go and that’s been cut off with my behaviour. Recognising it is the first step, doing something about it is the second step. I went to my GP and talked about a mental health plan, and also my counsellor as well. While I’ve been seeing one for a few years now, I’m at the stage where I need additional help for my mental health. If I don’t, it will only continue to spiral downward, affect those I love and care about. Hurt them and have them step back or be pushed away.

I struggle to grip a pen now with the pain that fibro gives me, so I took the plunge and bought myself a cheap Macbook Pro so I can have distraction free writing and use this more as an outlet. As it was said by someone in Mark Mansons novel, “two hundred crappy words a day”. So lets see how I go with two hundred crappy words a day. Not as seperate posts that is.

Wintery Wooden Wonderland

Another season of cricket is coming to a close, this time with a new club. There are about five more games left, and inevitably I will hit that stage of the year where I will go “what the fuck do I do with 8 hours on a Saturday?”, and of course. During winter. I debated trying a winter sport, or some kind of activity out of the house. Photography only gets so far, if it’s raining I can’t take the camera out in it as it’ll ruin it. I can still go to the beach when it’s stormy, and I will because I enjoy the beach regardless of the weather.

I debated getting a mountain bike and going out with mates, but given my frame of mind lately. I’d like to start building things in the shed, I’ve refurbished some furniture before but haven’t built anything from scratch since I was in high school. I’d like to replace my computer desk which is currently a flimsy IKEA piece of cardboard with some legs on it. My entertainment unit is falling apart, and I’d like to replace my coffee table and dining table (not that I used it much) as they aren’t mine.

But I think spending some time away from a couch, or a screen, or binging Netflix would be good for me. I’ve done it before and I’m quite happy to light the fire outside and potter away in the shed for hours on cold nights with some good music.

Ketogenic Unknown

Another long weekend has rolled around and I’m using my Monday day off to continue with the binge watch of Anthony Bourdain’s, Parts Unknown.

While I’ve been watching it to reignite me going into the kitchen and cook, instead of hating the space. It’s also made me think a little more about the food we eat, and that’s besides that I’m trying ketogenic again.

There are a lot of other cultures that make everything from scratch, mostly with natural fresh ingredients. Cuba is essentially an organic country because they don’t have the economy to support pesticides and what not to keep bugs away. So they grow and use everything that’s seasonal. And not much is preserved either.

Some countries and cultures have a lot more time to cook and prepare food, and by having a simpler, slower way of life. They live longer and healthier. Their diets aren’t carbohydrate based like most of the western world.

First came 30 minute meals by Jamie Oliver, then 15 minute meals. Designed so people who wanted to cook still could around their busy schedule. But does any of these people slow down and spend hours cooking something from scratch? Do they grab a can or a jar for the convenience? And has it just become a reflex to do so? And I don’t think anyone ever really stops to think about what’s in that jar of sauce. It’s not hard to boil, peel and turn tomatoes into pasta sauce, add in some salt and pepper, basil and other stuff and you’ll have something that’s not filled with a whole bunch of names you can’t pronounce.

The same goes for that jar of honey soy sauce, have you thought of adding soy sauce and honey to your stir fry? It’s not hard and it’s probably quicker to do when you spend 5 minutes trying to open that jar.

I’m making more of an effort to give myself more free time and dedicate it to cooking better. Lets see how long that lasts though.

Riddle me this, riddle me that

Who’s afraid of the big, black, bat.

“New Year, New Me”. Fuck that shit. Same shit different day, and you shouldn’t need a new year to find motivation to make life changes.

However, my life changes have been slow. Almost caught up in too much thought about what I should be doing instead of taking the jump. Taking a jump, a plunge or just doing something that can step you out of your comfort zone can be completely daunting.

Life is at a crossroads.If I go down path A, I will no longer live the current lifestyle I have, which I find boring and depressive. Which sounds bad, but I have nothing to stimulate my mind or have much to be passionate about. But it means more freedom and probably better mental health. Or do I go down path B, where I would have less freedom, but be keeping myself busy, more productive and a potential career change and doing things I’ll be passionate about. Or at least something different than my usual day to day job. But how will that impact my mental health? And also my chronic illness?

I guess I’ll have to find out along the way. Both paths are enticing to go down, freedom versus doing something I really think I would enjoy. But may still give me the option of path A later down the road.

This is how my life works, a constant state of my head feeling like a washing machine going while full of scrambled eggs. The same goes for people and potential relationships, they say one thing but do another. Add that into all the other factors of those scrambled eggs spinning around and my head is just a place of violent, mushy clutter. My mind is set to “slow grind” and will leave me with a cluster of riddles to solve.