When will I feel normal again. What is normal?

3:16am the neighbourhood kids have left after there late night bmx session in the backyard. I’m tired but feel somewhat good. Really sometimes company and some good communication and learning can really lift someone.
I guess today wasn’t bad but it did consist of me falling asleep every 2 to 3 hours whilst lying in the sun. I think I haven’t been getting enough sleep. Not allowed to take sleeping tablets without permission by the pain doctor so that will be a while. He’ll probably say no. I can still drink loads of milk and get as much tryptophane out as possible. That works most of the time.
I miss my mates on livingwithtn.org I should spend more time there then I wouldn’t feel so alone again.
Well I just recorded for the sake that I survived another day on earth did a couple of paintings and feel ok right now. Thats a good thing to remember.
I’m watching some nature documentary now so I’m definatly staying up for a bit. Its an aussie one on Mangrove animals with sharks n jellyfish it’s pretty out there. I don’t think I’ll be swimming up north for a while.
While everything’s different I never will work out whats normal.
I can’t really sleep right now too many thoughts. Cant put down pen paper. Bit hyper tonight.
It’s that bickfords coffee syrup i bet hehe been drinking it all night to knock me out (with milk).
Peace Out,
NW

Mismanaged pain……… still

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.

Not More Doctors!!!

I went to the doctors yesterday which is four days since a simple operation I had. The doctor was worried about how much pain I was in so he wrote a referral to the emergency of the local hospital (Something I really could’ve done without. As my mental state was and still is very on edge)
So I did the right thing and I went to the hospital after giving up on loads of “panadiene’ 15 and ‘Ibruprofen’. I walked to the desk and gave them my paperwork from the gp. She got me on a bed so I could wail in pain without having to see people. Well that’s how I saw it.
When the doctor came he asked all the usuals? Why are you here? (I would’ve thought it was obvious from the gps letter but lets go on) Whats the rating out of 10 in pain. I replied 6. I said it was getting worse so I might need some relief if it becomes worse. approx 1 hour later a lady doc walked in the room looked at me and in a stern and angry voice said. “What are you here for?” again whats your pain. I can just bare to wimper …”8″ She promptly left the room. another hour later a student nurse came in the room and saw my pain and said she’d get the woman doc back but she never came. I was by this time in extreme crazy pain. Another doc arrived about 2 hours after that. asked where the pain is and walked out. He sent the student nurse in with an endone tablet. It was a joke. I asked for more paracetemol.
They said because I’m on fentanyl they can’t give me anything strong. So I asked for some anti inflamtory or nsaid that might work. I was getting extremely frustrated in them. They didn’t even do any tests. I told the doctor he was not doing his job and I’m here because I’m in unbearable pain that’s cause is not sure but probably related to the surgery. He walked out.
By this stage the pain had got so bad I was looking for a method of suicide in the room (unfortunately that’s not a joke). I collected my thoughts. I opened my bag and took 1 tramadol 1 clonazepam both for pain and a seroquel because I was really going nuts. They came back and saw that I was no longer curled up in pain. I was lying n my side and focusing on feeling no pain. The seroquel started to make me tired. The doctor asked why I looked so tired and couldnt string a sentence together. They said they’d get me the *special doctor. Which means a mental health worker. A familiar face entered the room. he sat down and said “you seem pretty drowsy? What have you taken be honest” so I was honest and it got me no where but a night in the hospital. They kept waking me up and didn’t like the blood pressure reading. I’m low anyway. Why all this fuss. The answer. The only answer. They think I’m there for drugs. Well thats what I think about that but now. Thanks to “my local friendly hospital” I’m on a mass of pain killers right now while Im writing this. The pain is still ridiculous and I am worried because the doctors didn’t have an answer in the end. Yes because they didn’t do ANY tests. And I have an appointment with a different hospital that specalizes in my problem tomorrow. So all I gotta do tonight is stay as pain free as possible. Its a real predicament. because tomorrow morning I have to see my pain doctor and I can’t put it off or Ill get days of Fentanyl withdrawal. It should be a good appointment as a social worker will be coming in with me. I am very quiet in doctors offices I always feel anxious to say anything. Well can’t keep on typing and venting my rage. I best get some rest it’s late. I need to deal with this pain for probably another 17 hours till I get to the hospital.
Peace,
NW
PS sorry about the spelling to much pain.

Still Can’t Work it Out

Life I’m referring to. I get up everyday do the same things in the same order with a few setbacks like falling asleep now and then. Same mi goreng, Same dinner rice or pasta. Usually rice. Same electronic sounds all day, microwave, TV, stereo, Things get better things get worse. Hey it’s almost like the birds make a noise at the exact same time everyday. I’m more and more convinced I’m living some kind of “groundhog day” (where I play a very unattractive Bill Murray). Or even worse “the Trueman show” Despite the nightmares I dread going to sleep because I know it leads to waking up. Waking up and starting over again. Then again and again.
Is it too much to turn the moon and sun off and have some peace. Maybe get a decent ship to get to space with. It’s about time we lingered with our old space relatives isn’t it???
Where have I gone. I’m so lost. I’m supposed to be getting better. I saw my psychiatrist today and told him how well I’ve been doing. It’s just this very lately 2 days. It’s been edgy.
I am still trying hard. (no Scars)
Peace.
NW

Everything is Crazy Right Now

Everything… I am quite beside myself with all these things happening right now. problems with the law (Sometimes police make bad decisions on behalf of the community!!!). I never really did get along with authority but they are really testing me. I have lost faith in the “police – making a safer community” It should be “Police – be afraid we’ve had 6 months training and carry a gun”
Nightmares have been shocking lately and taking days and medication to forget. I really don’t want to fall asleep but I have to as I’ve said before without sleep things get bad.
Every 2 days I start getting evil fentanyl withdrawals. I kick and squirm and tense and sweat and cry I just can’t take that sort of pain. I will have to tell my pain doctor what I’ve been doing to avoid hospital during withdrawals. He won’t be happy but how else am I to survive. (don’t worry I’m not injecting drugs or anything). I’m sure he will understand anyway. If you have ever had Fentanyl withdrawals you know what I’m talking about.
I’m tired of talking to doctors who I feel don’t respect me. So much so I have ignored any appointments and not going back. the doctor called today and said I have to catch up. Well here’s the thing. I don’t have to see the doctor it’s entirely up to me but he insists I see him this week. I have no plans on doing that.
Broke as. have big debts and no way of paying so maybe no net again for a while. Everyone needs my money and I don’t get anywhere near enough. I look at a 6 month outlook and I still wont be near on top of things. Its a very depressing feeling.
Personal and family problems I just don’t have enough words to explain. I don’t know what to say there.
I saw a doctor today who found a large cyst on a ovary which explains why I’ve been in pain. It’s taken about a month for someone to say that and I have had a lot of tests and scans at the local hospital but it was a different hospital who saw it straight away.
I’m working hard to keep myself together. People are still saying how well I look. Apart from today when my friend actually told me the truth “you look like shit mate” I believe were the welcoming words. Why can’t everyone else see me how I am. At least now I know I have to pick up.
I don’t really have much more to say. That’s sorta where things are at. Wish me luck I have a lot to do and I need a lot of strength. Thank you
Peace,
NW
BTW I won’t let things get any worse.