3.37am

So I drunk alcohol with caffeine in so gone 3am on New Year's Day and I'm still wide awake! 

Happy new year to you all. Hope you managed to usher in the new year with minimal pain and to my usa friends I hope you enjoy the rest of 2014. 

I'm happy as I get my cast off tomorrow....woooooo! 

Merry Christmas!

Happy Christmas to you all. I had a fantastic family day full of hecticness, laughter and love. It was perfect!

1. Diagnosed when? March 30th 2010

2. Decompressed, if so when? July 29th 2011

3. Other additional conditions, if so which ones? Pernicious Anaemia, scoliosis and pressure issues

4. Have you personally met someone else with Chiari? Yep, about 20, maybe more

5. Most challenging symptom(s)? The headaches, they drive me nutty

6. Most embarrassing Chiari moment? Being shouted at in the street because someone thought I was drunk, I wasn't, I was just having a wobbly day.

7. Biggest Chiari frustratsions(s)? Struggling with uni work as my brain is so fuzzy

8. Number of medications in your personal medicine cabinet? 8, all different painkillers, antidepressants and antipsychotics

9. Number of Doctors/Therapists stored in your phone? 3, my GP, neurosurgeon and my psychiatrist

10. Do you attend Dr appointments solo or with support? I used to go alone, but recently I have been taking a friend or a family member
11. Biggest regret that Chiari has created? I try not to have regrets, so I am oky with everything

12. Biggest lesson that Chiari has taught? To never take health for granted, I was young ad foolish when I was diagnosed, I feel I have grown up a lot since diagnoses

13. Favorite non-medicinal therapy? I discovered acupuncture recently as I had whiplash and loved it!

14. Worst medicinal side effect? Fuzzy headedness which makes my thinking much slower than I am use to

15. Biggest change in your life since diagnosis? I quit my job and went back to university!
16. Worst medical test? I HATE lumbar punctures, I've had about 20 and have so much scar tissue there that when they put the needle in it hurts and it gets worse each time.

17. Hardest thing to give up because of Chiari? Working

18. Have you become more or less religious since diagnosis? I am a total atheist and that hash\t changed since I was diagnoses

19. Where do you find enjoyment now, that you didn't before? In simple things such as baking, crafting and also just spending time with the family and my friends. I enjoy it much more now.

20. Favorite Chiari websites?I don't have one

So I'm still in this flipping plaster cast on my right arm. I swear it shouldn't be this sore after so many weeks. I am not getting it off till January 2nd, which is annoying.
My chiari has been playing up, headaches are pretty bad.
My schizoaffective disorder is still troubling but I am going up on my meds so that might help.
I am excited for christmas, Jacob (my 5 year  old brother) is really excited which makes me excited.

Anyway, a merry, painfree christmas and a happy new year, I will see you next year!

So I finally got a new piercing! I love it! 

Also update on my wrist. I've broken the base of my thumb. So annoying, especially at this time of year! 

Bummer! 

Clumsy

If I was one of the 7 dwarfs, I would be clumsy.
So last week I was getting out of bed, and due to my chiari sense of balance I over balanced and smacked my arm on a bedside cabinet. It hurt but I've had worse. I continued to do my thing for the next few days until it became more than just a bumped arm. 4 days after the accident I decided to get it checked out.
And, of course, I have broken my wrist. I am now in an arm cast, including my thumb. It is rather annoying as you can well imagine. So my plans for neck piercings didn't come into fruition. I am hoping to get them done this side of christmas but it may have to wait until the new year now =[

Pain!

So, I think I'm mad. I enjoy pain! I love getting pierced or tatted. 

Today I am planning on getting 2 microdermals implanted in my neck. It'll look much like this! 

It'll be below my chiari scar so will be fine. I'm hoping to have my friend videoing it, if they allow it. Some placesa are funny about photos and videos being taken. 

Piercing pain list

So this is going to be a list of ear piercings ordered from most painful to least painful!

1. Anti-tragus, made my eyes water and my toes curl. So painful and also most painful whilst healing. 

2. Conch, they had to use a lot of force to get it through which hurt like hell. Healed really well however.

3. Daith, went through in two stages so was quite painful. Slow to heal.

4. Tragus, went through well and healed well. 

5. Stretched lobes. Hurt a fair bit in the smaller sizes. Bled a little. No longer wear this jewellery. 

6. Forward helix, bottom piercing. Hurt a little. Had all three forward helix done at the same time. 

7. Forward helix, middle piercing. Just a pinch. 

8. Forward helix, top piercing in line with my eye. Didn't even feel it. 

9. Second lobes. Accidentally went through cartilage on one lobe so hurt a little. No longer wear this jewellery. 

10. Lobes. Didn't hurt at all. No longer wear this jewellery. 

Left ear. Forward helix X3 and tragus. 

Right ear. Anti-tragus, daith and conch. 

Depression Poem

"Yesterday, I spent 60 dollars on groceries,
took the bus home,
carried both bags with two good arms back to my studio apartment
and cooked myself dinner.
You and I may have different definitions of a good day.
This week, I paid my rent and my credit card bill,
worked 60 hours between my two jobs,
only saw the sun on my cigarette breaks
and slept like a rock.
Flossed in the morning,
locked my door,
and remembered to buy eggs.
My mother is proud of me.
It is not the kind of pride she brags about at the golf course.
She doesn’t combat topics like, ”My daughter got into Yale”
with, “Oh yeah, my daughter remembered to buy eggs”
But she is proud.
See, she remembers what came before this.
The weeks where I forgot how to use my muscles,
how I would stay as silent as a thick fog for weeks.
She thought each phone call from an unknown number was the notice of my suicide.
These were the bad days.
My life was a gift that I wanted to return.
My head was a house of leaking faucets and burnt-out lightbulbs.
Depression, is a good lover.
So attentive; has this innate way of making everything about you.
And it is easy to forget that your bedroom is not the world,
That the dark shadows your pain casts is not mood-lighting.
It is easier to stay in this abusive relationship than fix the problems it has created.
Today, I slept in until 10,
cleaned every dish I own,
fought with the bank,
took care of paperwork.
You and I might have different definitions of adulthood.
I don’t work for salary, I didn’t graduate from college,
but I don’t speak for others anymore,
and I don’t regret anything I can’t genuinely apologize for.
And my mother is proud of me.
I burned down a house of depression,
I painted over murals of greyscale,
and it was hard to rewrite my life into one I wanted to live
But today, I want to live.
I didn’t salivate over sharp knives,
or envy the boy who tossed himself off the Brooklyn bridge.
I just cleaned my bathroom,
did the laundry,
called my brother.
Told him, “it was a good day.”
—Kait Rokowski (A Good Day)

Positive Post

So, this is, for once, a post without my usual moaning about pain or anything. Whilst they are still there I am choosing to ignore it.
I am lucky enough to be given the opportunity to go to Kenya, in Africa, next year. This trip will involve teaching the children, helping the teachers that live over there and generally making it a better place for the children. Many of the children would not be fead if it wasn't for the school, they also have suffered through lots of hardship. Many are orphaned or affected by HIV or aids. They live in slums and go through rubbish dumps and bins looking for food.
What I want to do is take over a suitcase full of items, such as books and pencils, that the schools may not already have. To do this I need to raise money. So I have set up a donation page and am hoping the chiari community dig deep and help me reach my target.
My fundraising page is gofund.me/fph81w please consider donating, I know how much of a difference this could make to children. I promise to post photos of the children looking joyful upon my return so you can see what your donation has done for them!!

Sorry for the delay

So I've been out of hospital for a while. I'm now on a toxic antipsychotic which means I've gotta have blood tests every Monday. But of a pain in the arse. The meds are not fully working but they're slowly being upped so hoping to get to a therapeutic dose soon! 

Chiari wise, I've got a bad cough at the moment and it's giving me bad Chiari headaches. 

Other than that life is going good!

Back again

So after a rough few days I've found myself back on PICU. A different one to last time but they're all the same really. Hoping my mental health improves enough to let me go home very soon!

Seen the brain dude

Today I saw my neurosurgeon. He wants me to have another MRI scan and then start from scratch in his investigations/ So that means possibly another ICP bolt. Rubbish!

Seeing my Neurosurgeon

I am seeing my neurosurgeon today. Hoping he will offer me something that will help. Whilst my chiari has been put on the back burner since all the mental health stuff happened, I am still struggling everyday with head, neck, back and shoulder pain. Hoping for some kind of relief!

Time to be honest.

So as most of you will know I recently spent 11 weeks in a psychiatric hospital. Almost all of you will not know why, other than what I've shared on here. 

Truth is I've been diagnosed as having a schizophrenic type condition. I know that's a scary word but to me it's a relief. I am not one to hide or be embarrassed by my conditions. Any questions no matter how small comment on this or send me a message using the box on the right!

Freedom!

I am finally free, having been discharged today. I'm having lots of community support but after eleven and a half weeks I am no longer a hospital inpatient. Eleven weeks, three hospitals, 7.5 weeks in intensive care, two comas, ten different medications and lots of support later and I'm hoping to stay out of hospital for good! I want to thank everyone who has contacted me using the little form to the right and sent messages of support it means a lot. I'll keep the updates coming as I adjust to life outside of a locked ward!

Home for a while

So I am home until Monday. Currently lounging in my bed and loving it. Should be discharged next week. 

Where do I start?

So things are going oky here. I am still in hospital, ten weeks today! Am now in my 4th hospital and hoping this one will be my last, as I am inching closer towards coming home. Am out of intensive care and now only a 20min drive from home!!!! Should be out of here very soon! Keep everything crossed. Will update again next week or when I'm home, which ever is sooner!

They've fixed me.......I wish

These posts are getting harder to write as I'm drugged up on lots of different meds and the new ones make focusing hard. 

Managed to avoid being restrained last night which is progress. 

Still sleeping on a plastic mattress with no sheets. Annoying!

Tried to ligature without success the night before last. 

We've just had the compulsory morning meeting and quiz which I won again! 

Have a few manic people in so it's super loud so I'm hiding away in my room. Only get my phone for 30 mins twice a day so can't write blog posts like I'd hope to. Keeping track and will blog properly one home! 

Love and craziness to you all. X

Profound Vs Jaffa cakes

Now my blog is gaining twitterer support I feel I should be writing profound or poetic statements. Rather as I sit here with my 30mins of phone allowance, I binging on my beloved Jaffa cake. I've avoided all restraints and injections but still my room has anything in but myself a bad, rip proof bedding and a tube of Jaffa cakes. Tomorrow may be more interesting for you yet more distressing for me. We will see!

Slow start to the day

Morning meeting at 9.30am. A chance for us to all sit together and talk about shop runs and eat food. Seems to go on forever with manic patients not shutting up.
Then it's the morning quiz which I won yesterday. Today we're in teams, girls vs boys and we kick their ass, as it should be. I'm now using my precious 30 mins on my mobile to update. Maybe no one will notice. Maybe I'll just become so withdrawn I'm invisable. Oh no, here they come. Gotta go!
Remember I'm just like you all. And you're only one step from being in my position #psychpatientsarenotscary

It's a crazy old world!

Friday 7th march I checked into a psych hospital. Things didn't go well and by Thursday 13th I was moved, in handcuffs and with force to an intensive care unit for psychiatric patients. Only 8 patients but about 15 staff. 

Friday I spent my day in a cell. 

Saturday I was moved to a room. Got very distressed and was forceably given tranqulizers to calm me down.

Sunday I chilled, got to know other patients spent some time outside. 

Today so far we've had morning meeting and done a quiz, which, of course, I won! 

Rooms are nicer here. Ensuite as well. 

Bedroom at the second hospital. 

Bedroom at third hospital. The current one. I have no sheets as they are deemed a risk. 

I'll try and daily update when I can! Only get phone for 30 mins twice a day. Love to you all and remember, don't be afraid of talking about or being around people with mental health problems, we're just like you guys but with a little chemical imbalance!

Finally going to admit it....

I've not posted much on here recently. Now I'm ready to tell you why. Some of you won't be surprised (I'm talking the chiari people who say they dislike me but continue to read my blog. Yes I can see you looking from my stats page)

I've recently been suffering from some mental health issues. I'm not afraid to admit to that. I'm not afraid to admit these became very disruptive to my normal day. 

I've spent 14 days in the last month in hospital and am still here. I'm getting there. Seeing the right people, getting the right help.

I know there is a stigma attached to mental health but I'm not one to follow what society says should be our reaction to what is really a part of many peoples everyday life, more so when you've got a chronic pain condition!

So that's me and that's where I've been. Feel free to comment, question using the box on the right or follow me on twitter. 

Crazy coma kinda time.

So I don't want to go into any great depth into what happened as it was traumatic for my family and I'm still struggling with flash backs. 

Due to drug interactions I became very unwell on Sunday late afternoon. I have no memory from this point so this was second hand info so hoping I get it right. 

I was rushed to hospital via an ambulance. By the time I arrived I was displaying a GCS of 3. If you don't know what GCS is, as I didn't before this week, it's a simple test to see if patient responds to pain, vocal commands and eye movement. The highest is 15, showing a normal reaction to all of these. The lowest is 3 means that no amount of pain, shouting or force was able to rouse a patient. This is termed a deep coma or death. I was GCS of 3 on arrival. I was immediately intubated and sedated and taken to intensive care Sunday night. Monday I remained in a slightly shallower coma, maybe GCS of 5 or 6, and was slowly starting to squeeze hands ect but not too much more. I have memories of this day but they are vague and kinda scary. Tuesday morning I must have decided I was no longer wanting the breathing tube, rather scaring the nurse when I sat up, and successfully grabbed her followed by me desperately trying to pull out the breathing tube. I wasn't quite ready so after some sedation I popped back into dream land. Later that morning I was ready and finally was extubated. I was able to be more aware of my surroundings. I had lovely nurses who braided my hair as I slept and treated me with upmost dignity and the respect for me in some situations which were horrible. 

I moved off icy on Tuesday night to a step down ward close by. Thursday (today) I came home. Hardcore stuff to go from coma to home in so few days. 

I am lucky to be alive and wouldn't be without the staff at southampton general and my family and friends so big up them. 

Now I'm feeling muscle weakness, A fair bit of pain and a lot of brushing. 

So that's my crazy week. Let me know about yours in a comment below or on the little form on the right. 

It's 4am....again

I have had a horrible two weeks! Now I cannot, as yet, go into details but trust me when I say it was bad. I'll update in that when I can.  

Still having bad chiari headaches and there is no change there. Just wanted to let you all know I'm alive and kicking. 

Can anyone help?

I had my op yesterday, which didn't work quite as it should have. 

So, I was wondering if anyone could help. I was after some UK based research about chiari looking fine on a lying MRI and still having problems post op. Either something going wrong with the op or with it being visable on standing. Walton centre stuff would be awesome! X

Here we go again....

It has been a very short 5 months since I last had needles shoved in my spine. This is, for me, a long time between interventions but despite this I still detest the needles, only the ones in my spine, oddly.
Tomorrow I'm back in hospital for yet another blood patch, in an attempt to stope these unrelenting headaches.
Wish me luck, I'll keep you updated!

I've been rubbish I know.

Sorry for not posting more, had a stress filled few months! So much work! I'll try and get back to doing this far more.
Anyway, thought I should let you know I'm having my next procedure this Thursday. I'm groping in for my second blood patch. My surgeon wanted to give it another go, and as I trust him, I'm willing to go for it, even if I HATE lumbar punctures more than anything!
My pain meds have been working oky, however, the meds they gave me for breakthrough pain are having to be taken so often that I don't really have anything left for when I have a real spike in pain. Had one last Monday, came home early and my mum found me sobbing a while later =[ I went to the GP and he suggested I had a urine infection, even though I had no symptoms, had no problems with my waterworks ect. The only problems I had were a headache, stiff neck and a little bit of a temperature. I think he is just unaware of chiari and how much it can hurt.
So yeah, hoping that when I see the pain clinic at the beginning of March they will be able to adjust everything.
Also, I don't know I've I have previously mentioned this, I went and had a hearing test a few week ago, cos I was struggling in lectures and having to sit right at the front and if those seats had been taken. I would struggle big time. Also, was getting annoying for everyone at home for me to keep asking them to repeate themselves. So I am still, following my last test, pretty hard of hearing. I had hearing aids a while ago, but gave them back to pay to be seen privately about my chiari. Now I have to save £1300 ish to get the aids I need =[ hard now I am a student!

Anyway, if I don't update before, I will let everyone know how Thursday goes!