Heatwave so hot for so long.

So it been hot lately roughly 35-40 degrees and I’ve been feeling ill, sweating patches off and getting a faster hence quicker intake.  Expecting tops of 41 degrees 3 days in a row this week!!! I don’t have an air conditioner. So it staying wet and in front of fans to stay at a reasonable temperature the anxiety and shaking has kept my weight down quite alot. Even if I eat my body just either gets rid of it or it makes me loose weight!!!. I’m not anorexic. Different people will say different things but Im definatley not dangerous. I will be soon If I keep loosing weight like this.

Note: 53kg this week.   58kg 2 weeks ago…

I will keep eating and remembering my medication so I am less anxious and feel like eating more often.

Peace,

NW

Hope it cools down soon.

Stay cool if ya feelin it.

The Current Flow

Over the last week I have had to take serious steps to take care of the T.N, anxiety and feeling down. As I am still waiting for further  medical help to get through each day with much more ease and probably will be waiting a while until things work out. But I can only imagine how much easier at this stage. The latest heatwave isn’t helping. I’m feeling quite sick every other day. I’m doing the best  I can to survive the weather with cool showers and fans.

I am still getting help from the local mental heath  support. Without I just couldn’t say. But I have been a wreck and been looking for help from them. I know I shouldn’t because they really are in no position to hear the crisis I am in. Regardless they did help me enough to go to hospital. They did talk me down from a very … place. I am calm and relaxed enough a majority of the time to realize anything I do I my decision alone and I shouldn’t involve anyone or I will just make stress for everyone. In the meantime I have caused so much stress already I don’t want anymore. I want peace. I want people to all be happy and at ease always knowing I’m doing the right thing by myself.

I have decided to do some thing rules for myself I guess you could say. these rules will keep me not only alive but maybe find times of true relaxation. Calling my friends and family more (when appropriate), Paint more, dance more. On the other end of the scale  Take time in the garden to relax. Find time to be alone. less things happening the better. can really only handle it when there is absolutely nothing happening. No colours no movement no eating. Well minimal eating.

After the latest stress from things I have gone to hospital for help I really need they’re help.DENIED again (It’s like they want me to die!!!)(people wonder why I don’t trust the system<—They should give me a reason to trust them.) –  I have also asked the mental health team (only to be judged and accused!!!) accused of what? your probably thinking.  After I told them about the girl they asked what was I doing at the change rooms at that time. I said because I was getting changed. I think they then said something like…”That just doesn’t add up”. “If you don’t tell us everything we can’t help you” I fell into despair when I realized they were not only not going to help me but they now thought I had something to do with that poor girls passing. I stumbled I stuttered and I was scared. I just wanted out.When they asked If I would come back. I thought I could just walk down the street with a dress on if I wanted to be scrutinized and humiliated. I think I left that one  unanswered. I will never call for help again.!?!?!?!

I was called by them on the way home on my mobile. I said I would call them back when I got home from the psych. 10 minutes later I called back I was received with a person who asked who I needed to talk to she then said the person who was expected my call had just knocked off for the day and the message left behind was. Client :nightworrier notes: stop support. No longer deal with. Not that I could be let down any more by any one but again another stab but hey what a stab when you already have multiple stabs to the heart.

I think I know the short answer to that. I wouldn’t talk during the meeting with them. Several reasons. They we not particularly welcoming. We walked down a hallway to a small room. I sat opposite 2 people I didn’t know (though one claims she has met me) I was very confused. Even on my regular medication I was hallucinating and had vertigo I was nauseous. THe taxi driver that drove me there was pissed off.  I had no reason to feel comfortable. So I could not talk and now they are paying me back by not helping me!!! Who’s crazy!!!

I actually agreed with doctors I need to go to hospital  in a psych ward before this gets out of hand. Even my partner can see that. I am broken when I wake in the morning I get up if I have to open a door Its like opening a floodgate of feelings. I feel like it’s going to happen again and again. My Psychiatrist said I was still stressed from the day. It was possibly going to take more then a couple of weeks to feel normal. I just don’t want this to get to the stage I was 9 years ago. Completely agoraphobic and scared of everything. Why can’t they help when I am in dire need. I don’t know how I will handle this Im still  skimming the surface of reality. I don’t blame the system for not helping me through this better. I am surprised I am left with this and no offer of real help.

Somthing is bothering me right now maybe its the 40 degree heat and my patch or maybe Im just feeling a bit like everything is too much.

Peace,

NW

Thanks to everyone that has helped. Excuse my lack of communication I need this time alone. I have to many problems really holding conversation. Please forgive me in the future.

xo

Wish me luck. Peace to all.

Still waiting…

I’m still waiting for an answer back from my doctor as to weather I can change medications now. I really need to as I have little balance anymore. I can only dance for a short amount of time and there are so many reasons I want to change to something new. I never thought I would have to wait 2 years for the doctors to be able to treat my chronic pain condition.

Today was a slight hell with a earthly outcome. I went to court with my partner to clear some things up. I was so anxious I couldn’t leave the house so I took more then my usual clonazepam to stay calm and collected so I could explain myself. When we initially arrived I thought I’d be cool and collected but as soon as we walked through the metal detectors I could feel an agitation in me that was not going to be held down. When I got to speak I told them that they were messing with my life and I didn’t need any more of it. I made it clear I would give the judge a bit of what for. I lost it. But still it worked out ok for all involved (most).

On another note the neighbors next door are still being a circus act and trying to terrorize the neighborhood. I have had enough of they’re antics/betrayal and destruction and have called the police (I know I’m not good talking to people in authority or anyone new in fact) but they have been excellent help and understand the dangers and risk the neighbors are to many of the dancers and myself. I am soon going to have to give another statement about some vandalism to my house. I am glad that is happening. I have that fight or flight feeling when I wake up in the morning and when I walk out the front door I can say fight is defiantly the winner there. I get worked up in about .01 of a second and If they walk near my house I have to use every ounce of strength not to kill them. I guess I need more self control. bah that’s so easy to say. I think I would do better with benzos. At least I have the police ready to act which is way better and smarter then giving them the much justified Glasgow kiss they all deserve. Either was everyone (dancers/friends other neighbors and us) will be more relaxed once it’s all dealt with.

The good news is my friends have been getting me out of the house for some fresh air and new sights.

7:30 My very good friend called up and asked If I wanted to go to the movies to see ‘Those inglorious Basterds’ at a 9:30 viewing  With some hesitation I agreed I knew I would be okay with my mate and not too freaked out.

7:35 I waited for him to pick me up as I waited my chest became tight and it was very painful a very strange sensation not teitzies something very wrong

8:00 One of the dancers put the blood pressure machine on me which was strange readings roughly 90 over 50 with a 90-98 pulse over 2 hours and not beeping in rhythm with a regular pulse. It was noted every time it stopped beeping I would cringe and fold my arm to my chest in incredible pain. I told everyone in the room no matter what don’t call ambulance I had to keep the phone behind me. They agreed on the terms if I stay conscious. Which worked out well. But on and off it’s still happening.

9:30 I look at the clock and look at my friends and partner who all have now stopped me from going out. And I wondered why my friend hadn’t shown up. He’s very reliable and I was starting to get worried.

9:35 My mobile rings and it’s My mates wife. She asks if I’m ok. I said all but a sore heart I told her T hadn’t shown up yet. She told me he was in hospital and had had a bike accident on the way to pick me up. She thought I was with him. I felt so bad and I can’t get it out of my mind.

A few days later –  I am wishing his family love and healing to recover soon. I have talked to him on the hospital phone and he is in good spirits even with so many breaks even his back. He is a strong person and will be up and running for his new little girl soon I know. XOXOXO

I have been having the crew over alot Floor20 (Klean, Chas, Damij, Merlin, Jester,Lil Z and the new guys) and they have been instrumental in keeping me fit and thinking. Not to mention my local community peer workers who probably don’t know how much a short conversation can mean to me, It always helps me think of the future. Something I think very little about these days. They also give me a step up when I’m under. I wonder when/if I will be able to do this myself. If I see it not working I will not waste the communities time. The last thing I want to be is a burden on society.

If things get too heavy I will do another re assessment of life and maybe stop the world and get off. Weather it means running away or something but the pain and pain problems are driving me crazy leaving out all the other issues – anxiety/depression/family issues/money problems and the rest.

Thanks to everyone who has helped me get to here. it’s been a rough road with many forks and dead ends. It takes a strong person to put up with me.

Lastly I must thank my partner for looking after me daily and helping me even when I have exhausted him. He some how gets it together to help calm me down.

So for everyone I love you.

Peace,

NW

-Reach for the stars-

PAIN!!!

A whole night of killer pain. It started as a toothache but the toothache st off my TN so  I didn’t get any rest from the pain even with my new patch on I was begging for help. I used half a bottle of benzocaine on my face and inside to stop the feeling but nothing seemed to work I used panadol and brufen every 4 hours and still I am getting about 1 attack an hour. Just because i need this tooth pulled. I can’t even really afford the dentist right now but my family are helping me out. They really try to help me. I wish I could help them too.

Well I have always dreaded this day. The Dentist vs TN and anxiety… how the heck is this gonna work???

Wish me luck,

Peace,

NW

Happy and Sad

Mixed feelings, The order of the day. I don’t know exactly why I’m feeling this way but I am okay. I know inside I will be fine soon. Maybe some more sunlight would be helpful and maybe if I wasn’t in this confusing situation with the law and maybe if I hadn’t busted my hand, so yeh that means no dancing for a while (for those who came in late… I breakdance so I use my hands ALOT). Its also quite hard to draw and paint. lucky I can still think and type. (Maybe slow but it’s worth it)

Had a bit of trouble in the middle of the night (why is it always at that time?) I guess because that’s when I’m truly exhausted from the day and I can’t take anymore stress that plays on my mind. It’s sometimes very hard to shut down. Woke up again in sweats from the fentanyl wearing off in my sleep. It’s quite a hard medication to keep level. Even with my safe method of usage. I really need to be changed to something else soon. It will happen I know.

Two days ago my dog Bonny had some puppies. That was a charm. The pups are beautiful. There is one a little one different colour and size to the others I guess you could call her the runt but I think little one is a better title for her. The others are all big and strong.  Six pups all up 2 boys 4 girls. I was told that made me a grandma now. Funny because Bonny really looks for help from me sometimes. I just watch them and try and keep them calm and quiet so Bonz get some rest.

So with all this I have a lot of animals to care for and concentrate on.  I think for at least 6 weeks. So it’ll be around my birthday when the pups are running around and chewing everything in sight. Watching my Bonz care for them brings such happiness. How can anyone be sad with all these little hearts needing some love. I’ll be fine.

Peace,

NW

Love ya all. xo

Performing… How and Why?

I got up early this morning because of withdrawals. Plus I thought I might start early again. Get my sleeping in order. I was browsing around on youtube when I found an old friend. He lives in another country far far away. I never expected to hear or see this person again. We only hung out for a week but we had a really good time. It was a nice surprise. I left him a message how he’d inspired me to get out and perform (good for the soul and good for the crowd) When he left to continue his stuff around the world I thought about how I could make a difference. He was a street artist/comedian.

About a year later when I was agoraphobic. I needed an outlet for my adreniline and nervous feelings. So I learned to dance (from the internet). At that stage I had forgotten the real meaning in performing to an audience. I spent a year at home practicing getting a bit better everyday. Then my mate from high school really pushed me(in a good way) to go to a dance studio and meet other dancers. So I did. I started a girls crew and we did really well. I left there and became solo again until another year later when I got an unexpected call from a 13 year old dancer saying I should do a show in the middle of the mall. I really respect this kid so I summond up the courage to do it. That day kicked off my dance with a bigger crew. They were really supportive as I was the only girl. They got me to gigs and shows even interstate show. I am forever grateful for. We have since split up but in our hearts we are still family. We will always be dancers and friends. So I am again solo. It doesn’t bother me but I would love to get down more with the kats perfoming in town and on the street. I know this is so cliche but I want to dance for the love of the dance. bboying will always be the bastard son of hiphop as long as people keep not accepting it as just as much important art form as scratching, painting, emcing. Very rarely respected enough by the rest of the hip hop community. One day it will get the respect it needs I’m sure. But in the meantime Im gonna dance till I drop. The earth is a really big dance floor. Thats what makes me happy.

I have to dance at a show on this Saturday. My fitness isn’t up to sctrach so I’m riding my bike going for walks and dancing to get back there. I have a few combos and sets ready. The main thing is I’ll have fun and I’ll have in my mind this dance will be for my dear friend that passed away in 2005. He was a magnificent mc. He even did a song about me. I loved all his rhymes.

I know everything will be okay,… Wish me luck anyway!!!

Peace out G’s

Night Worrier

Thanks to bboy Katsu (JPN), Budda (Canada), Storm (US), Kool Herc (US)  You’ve been a huge inspiration for my dance. And of course all my close friends that have stood by me and helped me through the hard stuff.

Peace

Anxious again

It’s been a while since anxiety has reared its nasty personality. It’s once again a wall in my everyday life. Fortunately my partner is dragging me out of the house for a walk with the dogs in the reserve/quarry. It’s a nice walk down the hills to see the city scape. My dog runs around and playfully attacks her mate Davey the older dog. I keep trying to keep my brain steady on simple things/thoughts.
I’m anxious again.. I can’t believe it. over nothing… I guess that’s why they call it a mental illness. The Clonazepam has been helping me keep my feet on the ground so I don’t get carried away. The fentanyl is doing it’s job much better now and feels more regulated. I haven’t had a bad hit of TN for about a week (that’s great). At the time I was very anxious as I didn’t know how long it would last and it turned from a stabbing to a burning all over the area. I think sometimes the pain causes anxiety then there’s the fact I’m probably stressed over some small things.
It got so bad the other day I spent 16 hours or so in bed. I refused to get up. when I did I checked my email had a quick check on my net friends and crashed again for another day. So your probably thinking I feel refreshed well no. I feel like going to bed again. Maybe my doctor was right maybe I’m going to be depressed this winter. I know Paranoid Andr. you’d be thinking – it’s not that cold here but I think its relative mate. I think we do get a bit SAD here.  I have that tendency anyway.
I explained to my doctor. I had a contract with my psychiatrist that no matter what I would contact 1 of three designated people unfortunately there is only 1 person left on that piece of paper I can talk to it probably needs an uppgrade. He pretty much laughed and thought I’d never take that contract seriously. I still have it in my wallet. I guess whether I use it or not depends doesn’t it.
I got a big day tomorrow. My fear is its a very look here I’m about to take a spill type activity. I’m going canoeing again. This time I will be seeing it from a different but equally as enjoyable view. I now know what animals lurk beneath. Last time we were there and there was a dead stingray near the boat launch. I like rays. I hope I see a living one if not I will bask in the fact I know they’re there.
I don’t know how I’ll deal with the anxiety. It might be fine tomorrow I might wake up and realize there is no monster at the end of this book.
On the other hand I could have nightmares and get there tomorrow shaking in my shoes with a handful of Clonazepam (don’t worry I won’t over do it) I’ll wait till I get there before I decide what my brain will do.
Where do I go from here?…
Bed again I guess.
Peace,
NW

Love to my family and friends forever. xxXOOOXxx

Fatigue and Mentalness

I woke up this morning and walked into the lounge room where my mate was sleeping. We slowly walked outside while complaining of our pains (like the couple of emo’s we sometimes are.) to have a smoke. I noticed I felt very tired. I don’t feel like doing anything.I’m just too tired. I haven’t even had my medication yet. Well after this post Ill do that.

I recently met someone who is into all the entertaining things I like we emailed for a while and I wasn’t feeling as alone. I’m pretty sure we can’t mail each other now *update* ( I can still keep in contact- Its been ok) . But as they say All good things must come to an end. I think that sayings crap (I still agree this saying is crap). It  seems like everything in my life comes to an end before it even begins.

Well back to this tiredness. I will go to bed early tonight as I have to see the doctor tomorrow. Probably be thrown around mentally so much so I don’t say anything and life continues its chaotic route. Oh yeh lucky me I get to see a copper aswell.

Are we getting closer to the monster at the end of this book!!! What ever you do I pray you don’t turn the next page.

You did it now we’re even closer to the monster.

Ahh no I need some real sleep.

Peace,

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.