Im in a lot of pain this morning, I slept in so I missed my dose of pain medication by a couple hours. It lasts 12 hours and I went like 14/15hours so it would be wearing off. Also realised I hadnt changed my patch on Thursday night, its Saturday morning now, so that has worn off. I really should know better and will suffer for that today. It will take a while for the patch to start working again as it needs to build up in your system and I think its similar with the pain meds, just over a few hours where as the patch could be a day or two.
My OAB is really bad today, if I bend over quite regularly I dribble a bit. Its bad enough that I need to change and have a shower but I am waiting until it settles cause there is no point changing to wet another pair of pants. Its so embarassing and uncomfortable.
I really dont get my Dad. He has Non-hodkins Lymphoma so he is in pain all the time, he has access to pain killers but tends not to use them because he doesnt like the way he feels on them. There is nothing you can say to convince him over time that you get 'used' to it and it doesnt affect you as bad. He keeps going though, he worked for years like it but is retired now. We are on 3 acres and he does the maintenance and renovations, he pushes through the pain and keeps going.
He was laying slate tiles out the front, when it came to putting in the cement/lime/sand mix he ended up with chemical burns on his finger tips and knees from the lime. A few days after this he is out putting up sheets to make a non-see through fence, I think the main aim is to reduce the dogs barking at the dogs behind us. But he has to be in a hell of a lot of pain and he is doing this, which really isnt urgent, like it can wait a week. But Dad cant, he cant just sit and recover when he hurts himself and he wont take pain meds because it would mean he would have to take a step back and rest.
I mean he is 64 and he pushes himself like he is a 25 yr old. He has high expectations from himself because he is the only one that can do it but for the entirety of my life he has been like this, he has to be doing something, he has to be building, fixing, anything. It can be raining and he will stay outside and keep doing what he was doing.
He doest settle a little more now days at night, he will sit and watch TV, which is new, good but new.
Dad has been like this all my life and therefore never very accessable. I mean when I was a kid he was renovating our house when he wasnt working. At the time Mum was depressed, like severely depressed, so Dad was off unaccessable as he was renovating and Mum was well she was either telling you exactly what you were going to do an exactly how to do it or asleep on the lounge or crying on the lounge. My sister and I spent quite a bit of time alone with our parents.
Neither Dad or Mum were up for listening, to me at least. I retreated into my bedroom most of the time, Id listen to the radio, which would be confiscated regularly because Mum was convinced it was the reason for my bad attitude, the concept that our home life was shit didnt come into it. Id spend quite a lot of time with my gem and mineral collection, playing around with a computer or something else very nerdy. From a young age I was very isolated and it started at home.
I have been in pain for the majority of my life, I injured myself at work when I was in my early 20's and ended up in significant chronic pain with no real solution and was put through a pain management course, which is basically, your in pain, theres nothing that can be done, heres how you live with it. It helped and I still follow alot of it now days, primarily pacing so doing a little bit at a time and having breaks in the mean time so you limit the chance of agrivatting the issue.
Some stuff I avoid altogether, for good reason it immediately causes more pain. I can go from 4/5 to 8/9 very quickly doing certain tasks. Lifting anything of weight is one thing that will really cause immediate issues.
Ive had a range of procedures, specialists and doctors look at my back, all with different thoughts. Recently it was Sacroilliac Joint Dysfunction, I had the procedure for this which brought to light a secondary cause of pain which is significantly worse than what was being treated. Im even more limited than I was before and in more pain. I went from what I thought was quite a significant pain medication regime to drugs Ive never heard of and yet Im still in pain. I can go higher in dose but that would increase the reaction I have to one and if we did so with the patch I would just sleep or pass out regularly. So, Im asking if there is anything else we can try because of how limited I am regardless of the pain medication I am on.
Here's the thing Dad pushes through pretty much what ever he deals with pain wise, its like this man thing for him or something. He believes that he has to just deal with it. He has it in his mind that there is no other option but for him to push through and often its because he can get more money when he sells the house he is working on. He has a very strong financial drive, which I understand as he is relied on so heavily. But as my sister and I were just saying there is enough time for him to get stuff done later, allow himself the time to heal from the burns. He wont get over the cancer so I get having to push through that, though not as hard as he does. He can just take it at a more relaxed pace.
Im different, Ive had the benefit of some training. I know and practice pacing. I know when something is different and that I need to take a step back. I know how far I can push is, which at the moment isnt far at all, I listen to my body and see patterns. Like if I do these things I am sorer the next day.
Dad I feel sees it as me not being a man, being weak and pathetic. At the moment they dont know what is wrong, so I dont know how far I can push without potentially injuring myself further. He and my family, dont realise how much I was pushing before this issue arised, it didnt seem like I was doing much or that I was pushing because others in the family are in pain and they do more, but Im not comparing pain levels but it should be believed that I am in a lot of pain and am doing the best I can, which isnt sufficient apparently. I feel like the family considers me as lazy, though I am being active with other activities, Im not sitting vegging out, eating Cheetos and watching TV. Im doing things to improve my mental health, Im dealing with my sisters issues where I can, I am doing random bits and pieces that I can do, I mean Im back feeding the dogs and even modifying the process to accomodate my pain levels Im still in a lot of pain part way through and it just builds from there.
Im in constant pain from between my shoulders down to my butt crack, there is no position where I find absolute reliefe from the pain. The pain medications help minimise the pain and control it but only so much as when I am doing very little. If I do something then the pain becomes more intense, ill get what feels like a sword going into my back, just above the butt crack, I get pain like an anvil pressing into my spine at the pointy end, sometimes its like having your arms forced behind you excessivly, well beyound what can be tolerated, I dunno how to explain it. I get intense sharp pain my thorasic. When I walk my lumbar has intense pressure, like an extremely heavy object is pushing its way inside me.
Walking is difficult, I cant do it long before Im in pain and it doesnt take long before the pain is overwhelming. Standing I can do for even less time, especially standing still, shifting weight doesnt help much. Sitting is ok, I can do it for a while but I will move around a fair bit, sitting oddly at times, like with a corner between my legs, etc. Laying down I can probably do the longest at a time, I move about in my sleep alot but I get up a few times a night to sit, I dont know exactly why but I have to sit for an hour or so before I can go an lay again to get some more sleep. Feeding the dogs causes most of that to happen, even with a decent break half way through it feels like from my thorasic down is on fire, there is so much pressure, its not like weight on the body, its pressure that is intertwined with the spine etc. its like a tree root growing through an old swirly fence or something. One thing that really triggers pain quickly is bending, bending over multiple times is really painful, bending over slightly is insanely painful. I dont know what it is but it sets off the lower and thorasic back area like nothing else. Even bending over slightly sets it all off. Bending is not my friend, though I dont understand why sitting is so ok cause thats a lot of bending.
Then there is the pain medication, my patchs are fine but the tablets are causing me to be really itchy, especially when warm. Add the break through meds and Id like to take a rake to my face. I also get really tired with the pain killers, I dont get drowsy, like Im alert but it feels like bed time part way through the day. Then I go to bed quite early and wake up pretty late to want to sleep a few hours later. Sleep, while I am up and down alot is a significant portion of most days, days where I cant because I have other things on etc. are incredibly difficult.
Something that has bothered me, other than my family not understaning the pain is my sister doesnt sleep for days at a time for what ever reason. As far as I can tell there is a significant amount of choice in that, for example she choses not to take the med at night which helps her sleep. She takes her other meds and intends to take her sleep ones later but then it gets too late and she cant take them. Just have a set time when you take your night meds and stick to it. When she was in hospital it was 8am -1pm-8pm and it apparently worked well. Now she has come home and has now changed it so it is like 8am-1pm-10pm ish. She needs to set the times as in hospital and leave them and just go to sleep when its time too. It would be good for her to be in a proper sleep routine, which will start with adhearing to a med routine.
This isnt the thing that really bothers me, Dad is all compassionate and sympathetic to her, in general but very much regarding her sleep. Im in excessive pain, if I do anything its so much worse. But my sister choses not to sleep for days at a time and its all the love and compassion in the world for poor sister. I get that there is more to her not sleeping that a choice but I have no choice in the pain, my choice is to deal with the attitude for not doing stuff etc, to deal with the rejection, the lack of understanding, the BS because I have to slow so far down due to my pain. Where as we are all praising sister, upbeat etc. when she sleeps and we allow her to be a bitch to everyone when she doesnt.
Dad, as much as he says hes going to help my sister and everything now that he has retired has still dumped her on me. She is still my responsibility, I still do her medications, I still talk to her doctors. She might talk to Dad a bit more at night but for the most part Im the one watching over her. Then there is this thing of "is your Mum up", "whats your Mum doing" I have no idea, I never really have any idea. I rarely go down to her, I might occassionally get a text from her but thats incredibly rare. Mum and I do not talk that much, less so now that I refuse to wake her up in the mornings. So, I have no idea why I would have any information about Mum being awake, what shes doing etc. Generally, and not to sound cruel or something, I dont really care. She is old enough to wake herself, let people know that she is awake, etc. The rest of us make it known to each other at some point that we are awake and we let someone know what we are up to. Mum has chosen not to participate in this, she has isolated herself from the rest of the family and doesnt want to join in with these norms Im not going to chase her up to try and get her to be apart of this.
Now if Dad wants to know where she is, if shes awake. If he wants to chase after her (which is what she wants to happen), all power to you. But stop asking me for information about her. I am not going to start calling her again to make sure shes up, Im not chasing after her. Of all the people in the house she wants to talk to me the least, if anything she wants me to do stuff for her but she doesnt want to have a relationship beyond that and essentially we havent had one for years so I dont feel like Im missing anything.
Mum is/has been more interested in having a relationship with my sister, they were really close friends for years but that has changed in recent times. Though Mum is putting a lot of, poorly directed, effort into getting that relationship back. My sister had a significant trumatic experience in her 20's, since then Mum has pushed a very close relationship with my sister. As their relationship grew, mine and my Mums as minor as it was dwindleds. She spent as much time as possible with my sister, she and my sister would go away together, I think the relationship between my Mum and sister after the incident was important but it grew into something all encompassing and it isolated both my sister and my Mum from people in their own age groups and normal sphere of contacts. I mean Mum and sister would go on to work together, they did almost everything together and if they went out with friends, it was their friends not to each individual friend. Things broke down between them, which is where we are up to now. Which is where Mum is trying her hardest to regain the relationship they had.
Mum puts and hasnt put much effort into her and my relationship for decades. Dad doesnt put nearly the same effort as Mum does into my sisters relationship into his and mine, not that I neccessarily would want him too, it would be weird and strange, like Mums and sisters closeness they used to have. This despite Mum effectively assigning me to Dad. You take him away, you do this. Mum didnt want to do it and quite obviously neither did Dad. It was another chore he needed to do, and he was ill equiped for it. So other than a surface relationship I have little to do with either parent. I dont doubt they care for me, but showing it, I dunno I just dont feel like the effort put into a relationship with me and the effort put into a relationship with my sister is anywhere near simialar. Its like my relationship is transactional, I need something, they need something. Ive needed a fair bit in life, things havent worked out for me, especially financially. Ive put myself out there with moving out for a long time, which I did and managed until I had a brief psychotic episode. I ran a business for a number of years with a decently sized contract. I have held down a job while running the business, a job I still have, had it for 15 years. But there have been plenty of times I have needed their help. But that seems to be the extent of our relationship.
I started to go to Church and got quite active in it, Mum then started wanting me to come to stuff when Church events were on. It was like she was trying to pick an issue, selecting times where I would have to chose between Church and them. These were my friends, I was actually doing well and she had to try and pick that apart. When I was free we could never do anything, nothing was ever on when Church wasnt. But there was a number of years where getting on the same page seemed impossible and looking back kinda out of the blue. I mean they didnt want much of a relationship before Church and since Church they really havent either. Mum was there for me when I went into Fullarton Road Private, when I was having a Brief Psychotic Break.
Thats a thing with our family, when tragic events happen, when one of us is in hospital etc. someone is there, everyone gets behind them. But once its over, once it comes to dealing with the issue and ongoing maintenance, poof everyone is gone and your on your own, unless they decide they have an issue with how your dealing with it and decide to 'correct' you. Though that might just be for me, like when things happen in my life the expected response, what they should do, is done. The visable actions of what is expected, but what was behind the scenes that has a very limited life span.
I will admit that I am stand offish, I prefer my own company and I do my own thing. Though I think there is an element of my life that has caused that to be apart of my life. I think the events of my life both school and home essentially educated me to be this way. I was isolated at school and at home. I cant say Mum was a bad Mum nor Dad a bad Dad. They both have flaws, Mum was sick, Dad is similar to me or me to him. Mum and Dad loved us as best they could. But the depression for Mum, the make coffee while the rest of us sit back, the closeness of my sister and Mum, the distance between Dad and I and so on made me feel very isolated and unwanted. Then of course the information that I was accidental while my sister was planned didnt help. Maybe I read into it but there is a distinct difference between the treatment of my sister and I from an early age I would have to think that she is just a better person, a girl or just the wanted child.
For some reason my back is a lot more painful this afternoon than normal, Im actually starting to find it quite hard to deal with. Im incredibly tired, I just want to have my take my meds, have my tea and go to bed and its just on 5pm. I sent Dad a message last night about needing dog food but he obviously didnt do anything about it, so I am waiting on my sister to bring some home from the shops so I can feed the dogs. Its annoying cause I should be done now and Dad did go into town so it would have been really good if he had remembered. So I have to wait for dog food and feed them, which takes a while at the moment. Then I can worry about my stuff so I can go to bed. I didnt have a nap today which is why Im so tired and probably why the pain has increased.
I think Im a bad person, a bad son. To not be able to have any friends essentially ever, not through school, not after, to not really even have a relationship with my parents and my sister and my relationship, she cant even be honest with me and accept me and my flaws. Maybe I expect to much from people. Maybe I dont do enough to conform, to twist myself into the mold others want me in. Maybe Im just mentally unacceptable or I have too many physical defects that I cant put to the side to be who others want me to be. I dunno, maybe Im just not enough as I am, I just fall short of the expectations of others and I dont put in sufficient effort to do something about it. Maybe I just need to be someone entirely different to find some kind of acceptance either socially or family, maybe I shouldnt exist at all and then people wouldnt have to pretend or fell obligated to "be" there for me.
Of course if I said anything to the family about this, about the way I feel, about the way I feel about the way they treat me I would be wrong, not overboard, not sensitive, flat out wrong. I know this because in the past I have stated some of these feeling and that was the reception I was met with your wrong. Maybe I am, maybe they dont want to see what they are doing/not doing, maybe they just dont give a shit.
It gets me Im a big bloke, 148kg last time I checked. I drink 2ltrs of iced coffee a day which is my down fall. I like some chips occassionally and same with chocolate. Normally I eat one for a few days at a time then stop and I wont eat either for a while. I normally have 2 Lite n Easy meals a day and drink a further 4 Mothers a day, or another kind of No Sugar soft drink. Of late Ive been struggling to eat much at all, if I get 1 Lite n Easy meal down a day Im doing well. My diet has some positives but overall I wouldnt say its great. I dont excersise for obvious reasons, pain makes it a real challenge. I am going to be starting with an excersise physiologist soon however. Im kinda hoping that this will help with the pain, or at least get me moving a bit.
What I dont get is my Mum and sister are not small and complain about how big they are all the time, like my sister is on about it most days. My Mum was on about seeing the gastric surgeon again to see what can be done. Yeah all 3 of us have had gastric surgery. I personally dont care how big people are, I would like to be smaller, it would make things much easier. But my Mum and sister are great for eating take away. Like instead of getting Lite n Easy (because of the cost) they will spend twice as much on take away. But the following day and sometimes while eating it, they say Im a fat pig, or words to that affect. If eating it there will be a great big smile on my sisters face. But then one or both will say something about my weight, like having a go at me for being bigger than them makes their obesity any less, they remain just as overweight as they did before they had a dig at me, the only thing thats changed is I feel worse for a bit and want to be around them less for longer.
You know each dig, each comment, each time they deny my level of pain, each time the drag me down builds up. I think I do a good job being as pleasent as I am to them. It all turns into this mountain of hatred for me, from all of them, piled up into one. I find it hard to distinguish who said what at times particularly between my sister and my Mum. I know I dont always treat them well, but I feel like this distain for me has been there since I was young, growing each year bigger and bigger. As I got older I became more useful, so I was given tasks, like the coffee thing. That just added fuel to the fire for me. Looking back it just makes me feel so much bitterness that I had so many expectations from such an early age, I had to be so mature. I had to do stuff for Mum in particular, I dont feel like I really had an opportunity to actually have a childhood. Just as an example of stuff that goes on, and it just happened, Dad just walked out of the pantry and asked my sister if she wanted a bun, she said no but there was nothing to me asking me if I wanted a bun. Even asking how you are, I never get asked how I am, though I ask everyone I see everyday. Through out the day I ask if they are ok, especially if the dont look right, but ask me, dont be silly why would they. I rarely say much about how much pain Im in or how sick I feel, though you ask them and it would be that its constant from me. I am actually really quiet, I dont say much at all, I sit and watch TV and type on here, or do something else reserved and quiet. So the few times I talk I might say something about pain or sickness it would appear thats all I talk about, I just dont have much to say and the only thing really going on in my life is pain.
Dad clearly doesnt want to see Mum or talk to her at the moment. He seems to be doing all he can to avoid her and he is sending me down to her. He knows the steps down to her room is painful for me, because I struggle with the back steps that I have to go down to smoke because he has singled me out not to smoke in the house. I get he is in pain too but he chose to go out and put up metal sheets, tried scrubbing the tiles with a mop. He decided to do those things, where I am saying I cant do stuff. Then he sends me down to Mum to take stuff to her, then she rings me asking about yogurt which I now have to go down to her again to take to her. Though I said I have to wait until pain killers kick in which will be a while. I seriously dont understand how I can make it any more clear that I am in agony and I dont need any help to make that worse, because just being alive makes it worse.
Im incredibly tired and is immense pain tonight. Im about to have tea, my first/only meal today. The pain has been building up all day, there is an element of being pushed more and more but other than that I dont know why my pain is increasing, I cant say why its been getting worse today. The only thing I can put it down to is that I am having to feed the dogs at night, walk more and stand more and that must be aggrivating things.
