December 29, 2009
The new year is arriving and I have very mixed feelings. I’m feeling anxious most of the time but the level of anxiety has definitely lessen since I got to start a new pain medication that doesn’t yet seem to have side effects. I have danced a lot more with the crew which has helped get me through a lot. Even if I really don’t feel like it. Then again I don’t feel like doing anything!!!
Christmas. What was all that then? I went to my Dads for Christmas to meet up with family and give them presents. I felt not very welcome, I was not greeted by the step brothers out the front. Almost like I wasn’t there. I walked in the main room where everyone was sitting the looked at me briefly and carried on. (Like anxiety problems aren’t enough) It was mostly my Dads wifes family in there. They didn’t talk to me at all. I gave them some xmas cards. I saw my Nanna in there and gave her painting and card. She was surprised to see me. She thought I wasn’t going to be there.!?!? ( I have never missed a Xmas at Dads) She told me my Aunty was at the outside setting. I went out there to give her present and card. I was happy to see my cousin out there with his girlfriend. My aunty reacted quite similar when she saw me. Eyes wide open, jaw dropped. She then said sorry I didn’t know…? I was starting to feel strange at this point. My cousin was glad to see me. A few long minutes later my other aunty showed up. Again very shocked that I was there (at my Dads house!!!) She said she didn’t think I would be there once again. I was feeling less and less welcome. Dad came out and saw me briefly for a few second for use to exchange gifts. I didn’t get any time to talk to him. I stayed for a few hours. Then left with everyone else.
How did it come to this. They are close relatives. They didn’t know anything about my life. In fact not sure weather they knew I was alive. I can’t believe meeting up with everyone could leave me feeling this empty and alone.I feel at this time in my life I need to know people care about me more then ever.
I am still shocked. I thought that having family living close by I could have someone to talk to but as location and situations with both sides of my family I am feeling like I don’t have anyone go to.
On top of these burning feelings. I’m still quite anxious and having panic attacks quite often. Which is unusual because the ADHD medication usually decreases my anxiety. This is kinda telling me I have a long road to go to find relief from this awful monster. The depression as I mentioned earlier must be quite bad right now as my thoughts about things and the world are feeling %100 meaningless. I hate to get up in the morning I hate to live through the day and night time well it’s just another night. What is wrong with me? I have been feeling this way for about 2 months now. I haven’t told the doctor because if I do he will take me off my pain meds and that’s a quick way to kill someone with chronic pain and depression. I want to get better. I just have very little will atm.
So what do I have to be Happy about? Well I’m trying this new medication that probably wont kill me. (yay Sarc) I have a few friends but I don’t feel like socializing. The end of the year is coming. Goodbye 2009.
September 19, 2009
This day and night has been longer and harder then expected. I have been thinking about my dog I have been missing since he passed on in 05. I can’t help but feel all the feelings I felt on the day at least not so strong but I still miss him alot. Lil Blue pup has been comforting me all day. I have had a tonne of friends over. They always lift my spirits. They have all gone home now and it’s 2 in the morning. I actually really like to be alone. More time for freedom and time to think. At the moment all I can think about is Brusey boy.
Might sound like a cop out but I think I’ll be taking seroquel to sleep a bit tonight. I am still taking the stuff quite frequently to help deal with my problems. I have dealt with them all I can in the real world. Now all I have is thoughts. Not just thoughts but useless/ irrational/ scary and weird thoughts I’d rather not get into. It’s so easy for people to just tell me to think straight all the time and – Don’t do anything stupid -. I saw my psychiatrist couple of days ago and he asked if I had done anything in haste or had any “Accidents” lately while he was away. I swiftly answered ‘no!!!’. I guess I was just worried about his reaction. Plus I had signed a contract with him stating I will not do anything like that.
I sprained my ankle yesterday!!! I can’t believe it. Not again. I was just getting so good and strong. When it happened I sat for a moment in pain but it wasn’t the physical pain that broke me it was thinking about taking the next 6 weeks off dancing again. The embarressment of doing it again. The dreams that constantly come so close to brush by only to fade away. I am so sick of injuries. It was a stupid injury too. I was running through the crew’s bedroom and misjudged my footing and rolled my foot off the corner of a mattress. Ahhhhh. I don’t want to even walk now. My smile is very strained now aswell.
I would like to wake up soon and not feel like Im as weak as a twig mentally. I need to find a way to strengthen myself in the head. Ya know?
Well I needed to air some stuff and now I have I’m feeling a bit better. Off to have my shower then bed and an episode of Bear Grylls to cheer me up and remind me of great challenges that don’t involve red tape. Every time I watch it I want to sneak out and escape to the wild. Free from everything (Including TN).
Love u Bruse xoxoxo
March 26, 2009
Ok I must admit firstly the medication I’m on a mix of Fentanyl and clonazepam that makes life livable. The problem is the fentanyl does not last long enough and causes withdrawal very fast. When I started it and when it was working it’s best I was nearly overdosing (Fent is notorious for accidental overdose). It seems to not be consistant rate of transdermal delivery. Now that I am use to the dose I am safer but still get withdrawal on the 2nd day.
When I saw my pain doc today with my community support worker. I asked to get back on the old medication I was on. back then my pain was stable and tolerable. But the doctor says he won’t prescribe me tablets. He even said something like I wouldn’t be able to trust the people I live with not to take them or do any other suspicious activity with them. Crazy I thought. Why wouldn’t they take my fentanyl patches then. Whats the difference. The difference is Fentanyl is 80 times stronger then morphine. So heres a bit of math. I was on 60mg of oxycontin which equates to roughly the same in morphine. The dose of fentanyl I’m on would be about 900mg of morphine (let me know if I’m wrong but that info is from an opiate conversion chart.) thats right in simpler terms the doc has raised my optimal dose to a massive dose. I know he’s trying to help but if he really wants to help he would put me back on the same dose and medication that worked for me for six months. I’m not letting this go on. He must see reason soon. He is smart and has the power to help. I don’t want to ever go back to self medicating. I want to trust my doctor to do the right thing. It will even give me back some faith in the system.
I ask myself over and over why?
Is it because he wants to cover as much pain as possible by huge dose?
Is it because he is getting kick backs?
Does he not trust me?
His explainations are just not good enough for me. All I can say is that I’m grateful he is trying and has eased my pain substantualy when it seemed no other doctor would.
I am incredibly unhappy with the way things are. Not just the medicne side of things but many things. What does the future hold for a young person with TN?
I hope more then this.
Sorry yet another venting entry. At least soon I will catch up with my old doctor who I got along with great and I really respect.
My support workers are doing an amazing job keeping me breathing. They have gone above and beyond to help me. I’m glad I found them.
Love & Peace,
your anon friend NW
BTW If you are out there suffering like I have. Please try and hold hope that things will get better. Easy to say I know. But I am going for another day. See what it brings and try to continue.
October 20, 2008
I hate being left alone. My partner has gone out just to the shops. But it’s long enough for my brain to start racing and feeling uncontrollable. I must admit when I was in hospital I did feel a bit safer. Only a bit. But it was safer then being alone. I hate when my TN triggers in front of people. But whats worse is when it happens and they’re not around. I’m left with my own thoughts and judgement which are majorly impaired (re- last year of my life).
I guess half of me writing this was so I wasn’t alone.
If you feel the same way I do. Write it down or play a video game anything you can thats safe to keep your mind from going down.
March 3, 2008
Considering I woke up pretty early with my partner still in bed I can enjoy some of the peacefulness and enjoy looking at the unmoved things from the night before and the silence. Hmm the silence what can I say? Astounding all I hear is the cpu fan running. Ah no I speak to soon he’s getting up and soon Yep he’s just walked past. That means the techno will be cranking ( I really only have a problem with techno but in the morning It’s so fast and makes my brain and heart race ( somtimes just complete panic. I don’t think humans were meant to listen to that kinda beat upon waking. and the sound of breakfast and food preparation will take over. I might go for a walk later n try n chill out. Gotta loose some weight (feeling last nights pizza.)
Yesterday my mate came over. Real good mate. It’s like they feel they have to give me intervention for everything! Stress, Getting over my problems, long term goals how to not have Trigeminal Neuralgia. Yeh ya heard me they reckon I should just not complain about it ever! cos it’s just an ailment and I don’t have the right to be in pain. I’m apparently suppose to be in a higher realm where people don’t feel pain. WTF this isn’t Scientology. Even if it was I’m pretty sure the pain would still be there.
Well all that said I love my friends but hey just let me do things my way. If ya aint gonna support or understand don’t kick me when I’m down. I’ll kick myself . Trust me.
I’l find somthing to do today treatment wise. maybe just a walk around the block. Or do some shopping. might even boil down to just can I do anything I’m pretty nervy today.
Here we go the dog and the man are running around the house yelling and barking (Yes for fun). Is it just me or does that sound primitive.
The only reason he spends more time with the dog is because he speaks dog and chooses not to speak to me. During the day there will be more then half the time he says something he’s actually talking to the dog. Yes it does make me feel less of a human. Maybe I’ll do a painting or continue my sketches down at the creek. Yeh thats sounds like a plan. Sounds quiet too, Which I think will be todays theme. As it should sooth the nightmares and bring me back to some kind of reality. I’ll also get straight onto the medication cos the TN is grabbing and making me pretty irritable not to mention excruciatingly sore.
I need to try some self -help stuff. No not my usual methods. Something different. Wish me luck
February 7, 2008
I’ve had a hard couple of days mentally. Seems It’s not easy as I thought this getting better business. Struggling hard after I wake up to separate dream from reality. This plays a nasty part of my day and anyone who wakes up around me. It also means you may catch me drinking or taking a couple extra benzos. Usually trying to fade the day away till Its gone. So I didn’t want to go down either of these routes yesterday I chose the uncommon and highly unpopular way of dealing with things. Cutting. Yes it may be low call it what you want it was my way of dealing with it at the time. I know of other ways of coping but I just havent done them. eg, rubberband flicking, distraction.
I feel stupid now so It’s not like I’ll be rushing to do it again. But hey who knows. The future is’nt predictable. I’m just gonna chill n play xbox till the bad feelings pass.