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.

A lot of Things to Catch up on. (Or I’m not dead Ok!!!)

The last 2 months , Well since about my birthday I started dancing again. religiously 3 hours a day. I get a new move almost every week. Something that makes me feel good. A crew has begun at my house there are approx 8 members 2 oldskoolers and some new bboys They’re mainly seniors that come from the local school and train with me everyday. I watched them progress and now I see them dance with so much style and very smooth and natural on the floor. At first I was their instructor it seems now we are all helping each other out with new moves we are even better friends since the crew started. We have a lot of moves, tricks and routines now. I can feel that great rush of being in a crew again and dancing with others. What else is good is the families of the dancers are quite supportive of it all.

On a sad and rather related topic. A recent fallout with the neighbours through bitterness on theyre half. The Mother of the house has decided to start throwing random allegations about why students come to my house after school. Even threatened police involvement. I welcomed it and called my local police station and told them whats been happening.. So I have at least done my bit. She knows full well what we do and whats to cause problems. THis has not helped my anxiety one bit in fact it’s made me kinda annoyed. Actually very annoyed. As you all know Im just getting use to going out again and these threats and intimdation techniques are bringing back bad memories and dreams. I feel like I have no peace with her disrupting my life. Her son is a steroid fuelled idiot who whats to cause problems and start fights. He nce came to my house and beat up his younger brother in front of me. The younger brother had done nothing wrong.

Moral of the story…. If kids are coming around to your house to play instruments or learn arts or super soakers Watch cartoons and dance. Be careful there are plenty of people out there who are happy to guess what your doing and drag you through all kinds of threats and trouble. Some days I think it’s not worth it anymore but for what they get out of it it’s very worth it. So I’m gonna keep doing it regardless.

Wish me luck. I’ve had a short fuse lately,

Peace,

NW

Neverland now re-established

I’m sure this will cause some hate mail..It’s cool I got a seperate box to  put that in and one day I’ll publish it all for you. Proceeds will go to Childrens foundations.

Thanks again to all the readers who’ve been here since the start.

New priorities

Life survival strategy Plan A

1. Dance

2. Paint

3. sleep whole nights (even if it means knocking myself out with Stillnox)

4.  I really don’t like this number lets skip it.

5. Play/write music

6. read more (happy things like astronomy and animals.)

7. Listen to chilled out music.

8. Don’t accept peoples bullying or guilt ways.

9. Spend more time with friends family people and pets.

10. Try more new things.

11. Make all the above happen. make it real.

After all this I should be by all means a very happy person. With only my normal level of anxiety maybe less. I will probably deal better with the pain even.  It’s quite a tree to climb and I am surely gonna have a couple of slips not every arm of a tree is as strong as it seems. I have definalty learned that.

I wrote this today because today has been hard since I woke up. I had nightmares in the morning and a bit of pain I was getting quite upset with myself and found myself in a place I never like to be. (no it wasn’t the naughty room…almost). A bad place in my head. LD* will surely carry this on.

I’m getting somewhere.

Peace,

NW

Thanks to all.

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

I woke up early…finally

The last few nights I either haven’t slept or go to sleep at about 5 or 6 then wake up about midday or just after. Today I woke up after a rude phone alarm woke me up. I set it last night but forgot about daylight saving so I woke up even earlier. gotta love ADHD.
I’ve been painting like crazy lately. I don’t know why but I’ve used so much canvas and can’t afford to buy more at this stage might have to go back to water colour. I’ll have to paint some nice scenes. Lately my pictures have seemed a bit depressing or dark. Just a reflection on how I’ve been lately with the lack of sleep and worry about the future.
Next week is going to be hard. There will be a lot of things happening.
Yesterday my mate moved out and found herself a nice share house. I’m glad things are working out for her. She really deserves it.
I’m doing okay. Just a bit of worry throwing my sleeping out of wack and a few nightmares driving me crazy.
I’ll be fine.
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.

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

Time Out

I am giving myself some time out. Seems like in the last week things were very intense. I’m just taking it a day at a time. A simple cup of tea in the sun in the morning or just sitting outside watching the world. It’s been very basic in the last day or so. Its slow down time now. I’m not just referring the the medications. I physically need to slow down or my brain starts a riot for no reason.
My mate in Canada has been helping me hold up. I feel so much better after talking with him.
I’ve only just started to realise how much stress I have been putting my friends/ family and partner through. I’m so sorry they have been so supportive of me when I’m unable to get out of bed or eat or think clearly.
Another nightmare last night. Snakes again. I’m walking thru an amazon looking place and all the branches and objects start turning to snakes. I desperately tried to identify them but it’s always too late they’re surrounding me and I’m terrified. I woke up and was relieved even though I only had 3 hours sleep I was not going to go back.
Even going into the bedroom I start freaking about the dreams I’ll have the lack of light. See I really like to sleep with lights on. Which makes it hard for my partner who has to put up with all sorts. If im havin withdrawal on the last day of my patch I’ll be kicking the quilt off, clenching my fists, sweating till the bed is soaked and feeling like the devil is trapped inside and I can’t get rid of it. I used to cut to get it out and get relief. Then if I’m in pain I can’t sleep just hold myself together as best I can but I tell ya it gets really boring only sleeping on one side to avoid the TN. Nightmares also means I have to wake him up and tell him or I feel f***ed. Then there’s the constant sound of the blind outside hitting the house which keeps my nerves on edge. Yeah I know I should fix it but I just haven’t had the motivation lately to do things, Anything really thats why it’s time out a time right now to ease the stress of EVERYTHING.
Simplified my medications a lot even cutting down a bit when I can. But I still severely need some sleep or sleeping tablets. I’ll see the doctor soon and get something to calm me down before I go to bed or even enter the room. Then theres the problem that I’m gettin a bit nervous just to call the docs to make an appointment because I’m just so bad at remembering appointment times. If my local doctor got a cent for every time I didn’t turn up. He wouldn’t complain about having to bulk bill patients and run a good effective practice. I hate when I waste peoples time or money. I feel so bad about it. I get more annoyed with myself. so the circle continues.
Time to break the circle and possibly buy a straight jacket. There was at least 5 times in the last week the world would have been much happier if I were contained, hog tied, locked in an empty room. You get the idea.
Well that’s about all I have to say right now.
Peace,
NW