Sunday, 19 December 2010


So it is rapidly approaching the end of the year and my upadtes of this have been shockingly bad. I will try and get more organised.
So update time.
I have been approved for a posterior fossa decompression with duraplasty and a C1-C2 laminectomy. Now I'll let you know what that is lol. The posterior fossa is the part of the skull they are working on. They do the decompression by removing part of my skull. A Duraplasty is where they open the dura, which is the lining surrounding the brain, they put a patch of artificial material on to make a bigger space. A C1-C2 laminectomy is where they remove parts of the C1 and C2 vertebra.

I have been having seizures and for a while the surgery was put on hold. However I am going to an epilepsy clinic on the 12th January, so hope that will clear it up.

Going to try and get my MP onside to try and get my operation done quickly!

Merry christmas and happy new year!

Friday, 1 October 2010

Nothing to do with Chiari!

This post has nothing to do with Chiari, but I thought I would post it.

Been doing lots of thinking, in the nights when my pain keeps me up. Tonight is one such night, it is almost 6am and I am wide awake.

I have been thinking tonight about major events that have happened in my life. I realise that surgery is the next major thing that will take place, which is I guess what has made me think.

So first major event to happen in my life..
3rd February 2007.
This was a massive night in my life, that has really shaped my outlook on lots of things.
It was the night of Richard (my boyfriend) sisters 18th birthday party. It was held in a community centre in Totton. It was a nice night, lots of Richard's family but also some people I know there as well. My best friend at the times sister was there with her best friend who I knew pretty well.
It got later and I joined Kirst and jes outside whilst they had a cigarette. What happened next was the most unexpected series of events, something I never expected to happen.
A small fight broke out, followed by a group of people running just around the corner, we followed. This was more out of interest, and we were not planning on getting close. I walked round and kirst and jes followed behind. When I turned the corner there was a boy of 15 on the floor, unable to breath and bleeding from his chest. He had been stabbed straight through his heart and collapsed on the floor.
We all ran over right away and his friends chased off the attacker and others went to get help. I helped perform first aid and the others helped and one stood over the knife.
By the end of the night I was covered in blood and the boy was dead! The worst thing to see. I was only 18 myself and shocked was not the word for it. I spent the next 2 days being videoed and interviewed by police, having my clothing taken away and other things.
Court case came and went, the boy who had stabbed the young boy got away with murder, literally not enough evidence to prove it was not done in self defence, he got let free. AHHH!

Second major event was my step-dad passing 23rd March 2009. Another Worst day ever.
He had cancer and it was not possible to save him. I am not going to say much about this, it is not for sharing.

So third worst thing is brain surgery. So I have survived two super shit things and I am still here, still smiling and still fighting. So it has not made me sad thinking about what has happened in the past, it has made me realise that I can do it and I can be strong when I need to be. Bad things come in threes, right? So I should have a good run of luck now =D

And to quote one of my favourite musicians:
"Sometimes your circumstances suck, but life doesn't." Andrew McMahon

Thursday, 23 September 2010

hints and tips!

Some POSSIBLE non-surgical/ drug free methods to alleviate ACM symptoms- also useful for post-op patients and as life-style guidelines. Bernie Meyer, Editor (
1. Wear highly cushioned, support shoes to reduce neck, cerebellum pounding. Commercial cross-trainers are recommended - New Balance, Nike, Reebok etc.- test before buying.

2. Avoid neck-stressing activities (football, basketball, wave pools, diving, tennis, roller coasters, other amusement park rides of high G forces, lifting in excess of 15 lb, backpacking, falling asleep in chairs, extended reading with head bent etc.)

3. Get plenty of rest and sleep (eight hr minimum). Pillows and sleep position are very important. Soft, small pillows with fiberfill are very good for this i.e. little or no"push" back. Most Chiarians are side-sensitive. Use a large pillow(s) etc. to prevent rollover onto affected side. Stop eating and drinking three to four hours before bedtime to reduce the need to get up at night.

4. Avoid caffeine, alcohol, aspirin and/or high salt diet if tinnitus is a major symptom or any of these dietary items increase other symptoms.

5. Stay in excellent physical condition via walking, exercise bikes and other non-neck stressing activities - STAY LEAN

6. Sit in soft recliners with high backs and foot rests.

7. Support reading material with elbows on your knees/thighs or chair arms. Read "straight" ahead. Use book holders or music stands. Look at computer monitors straight ahead.

8. Drive if you have to but use wide vision mirrors and get seats with high backs. -Take your time and limit your driving to short distances at slow speed preferably during the day. Some Chiarians find orthopedic collars help reduce neck stress when riding in a car etc. Some do not.

*Wide vision rear vew mirrors remove the need to turn the head whilst reversing, they are available online or from most motoring stores*

9. Relax and avoid stress and noise. Don't tighten the neck muscles. Stay "cool".

10. Put soft cold compresses on the neck/ brain joint area or on the top of your head for about an hour while lying down (these are soft compresses). Some Chiarians prefer warm compresses.

11. Straining during bowel movements should be avoided. Eat plenty of roughage and eat at regular times. Drinking herbal tea containing senna may help give pain-free relief from constipation.

12. Heavy jewelry, scarves, ties, tight collars, bras, rings, bracelets and watches might feel uncomfortable. Adopt a casual life style and don't wear them.

13. Try to avoid waiting in lines where stutter stepping is involved. Uneven surfaces or checkered designs in floors maybe difficult to walk on. Focusing on an object in front of your or closing one eye may help when dizziness hits.

14. Do crossword puzzles to assist short- term memory retention. Ditto for playing cards.

15. Take calcium supplements to assist in bone enhancement especially after surgery. Be very cautious using vitamins and supplements- most have not been thoroughly tested for primary and side effects. As always, check with your doctor first.

16. TENS machines may help CM/SM patients, especially those with spasticity (cervical, thoracic, lumbar muscles) and spinal pain. TENS units also can help with headaches. You can buy one for use at home. As always, check with your doctor first.

17. Avoid cervical traction.

18. Lumbar punctures, spinal taps or epidurals can be dangerous for Chiarians. Always ask your doctor and insist they review the literature on these procedures with respect to increasing herniation.

19. Brushing teeth or gargling can result in sneezing. Minimize head motion during brushing and not bending the neck when gargling.

20. Avoid chiropractor adjustment. Most chiropractors have no experience in treating ACM's. One member's herniation significantly increased after cervical adjustment. "That is because I herniated from 3-4 mm to 15-20 mm in 8 months with this treatment (documented on MRIs)".

21. Review daily movements to include cooking and cleaning. Eliminate as much neck stress as possible. See the items on the expanded list below for some helpful hints.

22. Use the special tray that most beauty shops have for washing hair for people who cannot lean back on blunt sink rims. Chiarians should never lean back on the edges of sinks.

23. Methods to reduce neck stress during house cleaning/cooking are listed at

Monday, 6 September 2010

Positive Feelings!


- I am not a victim.
- I have no duty to be perfect.
- If I can't decide which of two choices to pick, perhaps my choice should be something else.
- I have a right to make up my own mind.
- I have a right to ignore the advice of others, even if I asked for that advice.
- Respecting other people's views does not mean I have to agree.
- My time is valuable, too.
- I deserve the time and space to heal.
- I am a very valuable person.


- You have a right to put yourself first.
- You have a right to make mistakes.
- You have a right to be the final judge of your feelings and to accept them as legitimate.
- You have a right to have your own opinions and convictions.
- You have a right to change your mind or decide on a different course of action.
- You have a right to protest unfair treatment or criticism.
- You have a right to interrupt people in order to ask for clarification.
- You have a right to negotiate for change.
- You have a right to ask for help or emotional support.
- You have a right to feel and express pain.
** Mentally I'm coping, emotionally I'm adjusting, and physically, well, two out of three ain't bad. **

Monday, 30 August 2010

The Chiarian’s Creed

I promise to accept the fact that I have Chiari
Malformation, a neurological disorder which will
limit my abilities in my everyday life.

While I will always have Chiari, some days will be
good and some days will be bad. I will be thankful
for the good days and try to make the most of them.
When I am having a bad day, I will try to remember
that most likely it will not last.

When I am having a bad day, I will listen to my body,
and get the rest that I need. I will let my family
know that I am not feeling well, because they cannot
read my mind.

I will not feel guilty about resting, because I will
eventually begin to feel better, and in the long run,
it will also benefit my family. They will not become
malnourished if they eat peanut butter
sandwiches for dinner.

I will not feel guilty or worry about the work that
is not getting done while I am resting. The world
will not all apart without me, even though it looks
like it already has.

I will not let anyone else make me feel guilty for
taking time out for myself. They will never understand
exactly what I am experiencing, the pain that I feel,
the exhaustion that I feel. They will never understand
the fear that I feel when my symptoms creep up on me,
and land me flat on my back.

I promise not to feel sorry for myself when I am
feeling bad, because there are a lot of people out
there who are in worse shape than I am. I will not be
sorry for what I don’t have, but be thankful for what
I do have.

I promise to learn a lesson from my illness, which is
not to take life for granted. I will enjoy every moment
that was given to me, and be thankful for the times
that I can smile and laugh.

I will try to help others who also suffer from my
condition. There are many confused and frightened people
who need to hear comforting words from someone who has
been there. There are many people who need me to take
his or her hand and be pointed in the right direction.

Lastly, I will not ask, “Why me?” While Chiari has
weakened my physical body, it has strengthened my heart,
my soul, and my spirit.

Thursday, 26 August 2010

I promise I will try and update this more!

So its currently 2 am on 27th August. I have just received a very drunk phone call for my best friend, who is a little drunk asking me to come and rescue her. The only problem with that being that I am in Hythe and she is in Belfast lol.

So update on my Chiari. I have switch GP surgery's, on the advice of Claire's mum. She is now my GP and is setting the wheels in motion. She doesn't think I am making it up. She knows so much about my condition. I saw her for the first time about 3 weeks ago. She adjusted my medication, sent me for a blood test and wrote to my neurosurgeon asking for an earlier appointment. Had my blood test done 4 days after on a Friday morning and by the Monday morning I had a phone call informing me of the results. At my old surgery it was common to wait about 4 weeks and only get the results if you bugged them. The results showed I had slightly low potassium, so I just have to eat more bananas. I have also started to take a vitamin supplement, just to cover myself.
Went for another appointment on Tuesday, as we had not heard from neuro she sent them a fax again asking for a quicker appointment so fingers crossed!
However, the better news is that she has agreed I can go back to work on an adjustment plan. I basically can only work part time, can't be left alone with children in case I faint, no lifting, climbing or strenuous activity. I go into work during the week of the 6th September to get this sorted, I hope they can accommodate me.

I also had an appointment with the eye specialist. My eye sight has changed again (in a month) and so has my squint. I have been given a temporary lense in my glasses and this has got rid of my double vision totally !!!

Today I have had the worst day in a long time. I have had a really bad headache, I still can't shift it so I am still wide awake at 2.45. Yippeeeee!

I will update this after my next hospital appointments which are in the next few weeks.

Saturday, 14 August 2010

My Life in Pain

Pink flawless skin, so soft and tender,
Sweet baby girl, full of hope and wonder.
Tiny little cries with new breath of life,
No one foretold future years of such strife.

Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.

Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.

Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.

Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.

More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.

Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.

Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.

Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.

The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking er defenses, the beasts seem so strong.

Sunday, 1 August 2010

Things you may not know!

30 Things About My Invisible Illness You May Not Know 1. The illness I live with is:
- Chiari Malformation Type I (CM or ACM). In a nutshell, the back/bottom of my brain descends into my spinal canal.

2. I was diagnosed with it in the year:
- 2010

3. But I had symptoms since:
- Forever, without realising it till now. I can't remember a time when turning round didn't make me feel sick. However my symptoms started properly on the 25th March 2010

4. The biggest adjustment I’ve had to make is:
- Learning that I have limitations and I can't always do what I would like, I have to try and predict how things will affect my symptoms and give myself time to recover from them. I get tired out just walking for a few hours. So if I plan a day out, I also have to plan the next day as a rest day.

5. Most people assume:
- That I am drunk. When I am tired I stumble over nothing and can't walk very well.

6. The hardest part about mornings are:
- Everything. I don't sleep well so mornings kill me. My headache tends to be bad in the morning.

7. My favorite medical TV show is:
- Casualty, Holby city and scrubs!

8. A gadget I couldn’t live without is:
- My phone and computer. How else would I keep in touch with people whilst stuck in my bed!

9. The hardest part about nights are:
- Being awake for the whole night, and realsing its light just as my eyes start to feel heavy.

10. Each day I take:
- 60mg Amitriptyline. Between 50mg and 150mg of Diclofenic. 800mg Gabapentin. 150mg of Sumatriptan (doesn't help) 5mg Folic acid. Occasionally I will take other painkillers, no idea of the names.

11. Regarding alternative treatments I:
- have yet to try anything.

12. If I had to choose between an invisible illness or visible I would choose:
- niether, but I guess I am happy with mine. On good days I can go out and no one bats an eyelid.

13. Regarding working and career:
- I am off long-term sick. Hoping to go back as and when is possible. Doing my degree with the Open University.

14. People would be surprised to know:
- How much of my condition I hide. I don't want people to know how sore I am all day long.

15. The hardest thing to accept about my new reality has been:
- Seeing people get on with things and me being stuck behind. Having to live with my mum still and generally putting my life on hold.

16. Something I never thought I could do with my illness that I did was:
- Smile, but I can and I do!

17. The commercials about my illness:
- Nothing. Not even my GP had a clue what it was. When I told him, he thought I was making it up and accused me of wasting his time. Thanks!

18. Something I really miss doing since I was diagnosed is:
- just going with the flow. Getting drunk, hanging out and belive it or not working!

19. It was really hard to have to give up:
- Work.

20. A new hobby I have taken up since my diagnosis is:
- Blogging =D

21. If I could have one day of feeling normal again I would:
- Go on a roller-coaster, skydive, bungee jump and get drunk!

22. My illness has taught me:
- who matters in life. My friends Family and boyfriend.

23. Want to know a secret? One thing people say that gets under my skin is:
- "Don't you just have a migraine?"

24. But I love it when people:
- love me for who I have become, rather than remembering who I was!

25. My favourite motto, scripture, quote that gets me through tough times is:
- For everything a reason!

26. When someone is diagnosed I’d like to tell them:
- to read about chiari. And to take it easy!

27. Something that has surprised me about living with an illness is:
- how something so serious can be unheard of. Its not common enough for people to just know about, but not rare enough that it get reported when someone is diagnosed.

28. The nicest thing someone did for me when I wasn’t feeling well was:
- make me smile.

29. I’m involved with Invisible Illness Week because:
- I want other people to know that there is support out there and not to go it alone. Also, people shouldn't judge a book by its cover. Just because I stumble and sway doesn't mean I am a pisshead!

30. The fact that you read this list makes me feel:
- like I am not invisible any more!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18 at

Saturday, 31 July 2010

Feeling sorry for myself!

Been feeling very sorry for myself for the last few days. I know I should't but I just can't help myself.
I feel like this has changed my life, and in no way has it been for the better. So I either have the option of being in pain for ever, or to have a massive, and painful operation. And I really want the operation, so being informed I need to wait until October to see my neurosurgeon, has made me feel rubbish.
I can't help but worry about work, If I go back then I don't feel I will be able to do my job well, and I think it will make me MUCH worse. If I don't go back and wait for the operation then my sick pay will run out and then I will be screwed as well. So do I worry about myself, or my money.
It almost feels like people have forgotten I am unwell. And I don't for a moment want people to always be reminding me of it, but I dunno I just wish people would understand what's going on, walk some time in my shoes.
Try and imagine what happens to me all day, every day.
If I stand up my head hurts, if I sit down my head hurts.
If I turn my head then my head spins, my eyes fight to focus, making me feel sick. I feel like I am going to pass out. And this doesn't happen every so often, its all the time, every time I change position, or move slightly.
Every time I cough my head hurts.
Every time I stretch my head hurts.
Every time I laugh my head hurts.
Every time I cry my head hurts.
Every time I shout my head hurts.
Every time I bend down my head hurts.
Every time I lift something my head hurts.
When I walk, I feel like I am walking on bumpy ground. This isn't too bad, but if I am tired then I walk like I am pissed. This embarrass me massively. I hate people seeing me sway and walk funny. A lady was staring at me today. I was walking to my car and was wobbly, stumbling over my feet. She clearly thought I was drink driving. Makes me sad, if I was older then that probably wouldn't be her first thought. So clearly she felt staring at me was okay. =[

I know this just sounds like I am sounding off about how horrid things are. I appreciate that things could be worse, and it makes me sad =[
For everything a reason, so this is only going to make me stronger, but right now, stuck in the centre, I don't know how and it doesn't feel like it will ever happen!

I guess I have to realise that only others with Chiari can accept what is happening. If I had been asked to imagine, last year, the pain and isolation that I am feeling, I wouldn't have been able to do it. I may have thought someone with my condition was laying it on thick. No matter how close I am to someone, if they don't have Chiari they don't understand. As one of my closest friends said to me today "I am fed up of you being ill" Sorry!

Thursday, 22 July 2010


Thought I would update this.
Nothing happened for weeks, which is the reason for the lack of posts.
I have had good days and bad days, I just take each as it comes.
On Monday I received the news that I have been assigned a neurosurgeon, Mr Sepahi at Southampton General Hospital.
I should get an appointment to see him, then an operation date, the pre op, then surgery. Can't wait till I can tick off each on of those. I am getting excited about the prospect of having my skull sliced open, sicko lol!

Monday, 28 June 2010

28th June

So a quick update.
I have been doing okay over the last month or so, since my last update.
Sleeping is still very much a problem. I am either stupidly tired all the time, or I am awake for days.
I have got into such bad sleeping habits, and nothing I attempt to do seems to make this problem go away.
What else...I still have not had my MRI result. Phoned my Neurologists secretary last Wednesday and she had only just received them. She said that she would show Dr. Katifi and get back to me with an appointment. So still just waiting.
My plan of getting back to work to start the new school year in September seem to be slipping out of my hands. I have decided, even if I do not know what is going on I am going back to work in September, operation date or not!
Its strange I miss it so much, I hated it when I was there =D
I have been spending some time helping to organise a charity event for my local youth club. Its on the 10th July and is all night. Young people are being sponsored to ride,, in shifts, all night.
Taking a short holiday in a few weeks, I feel I deserve one and I need to take my (massive) mind off what's going on.
SO I have the skate event on the 10th July till the morning of the 11th July. Then I am flying to Turkey on the evening of the 11th. Crazy I feel =D
Just everyone keep everything crossed for things to work out. I would very much like to know whats going on by the end of July.

Thursday, 27 May 2010

Woooopse I forgot about this...

So I pretty much forgot about this.
So an update, quick warning, if you want a cheery read then go no further.
I last updated this after my MRI scan this time last week!
Since then I have hardly slept, I seem to be awake for hours on end, days on end even. I cat nap some days for a few hours but its no enough. Its strange because I don't feel tired. I am wide awake and the only thing bothering me is the fact I am still awake.
I have been put on more painkillers, diclofenic sodium. Just another tablet to my massive list of thing I have to remember to take.
My short term memory has got worse, I told Richard something, and about 2 mins later I repeated it and genuinely had no clue I had said it.
My motor skills have got loads worse, I keep over reaching for things, knocking things off tables. Its quite embarrassing.
But over all I am doing okay. I just am getting annoyed at the pace of things.
I have 2 eye appointments coming up, I also need an operation on my eyes, it never rains! I also have an appointment for an ultra sound on my hand. And no appointment for my brain!
So its 2am and I am still awake. My neck is hurting and I am bloody bored!

Friday, 21 May 2010


Had my MRI scan at Southampton General hospital at 2pm. It was fine except they had to stop the scan twice as my pulse was fluctuating massively.
It gave me a mega headache, lying on my back always causes some discomfort, however 50 mins on my back with my head strapped into a cage was no fun at all!
I have hardly been sleeping again, I have had my pain killers upped again and its not helped.
However only a 3 week wait for my results so fingers crossed it starts moving quickly after that!

Friday, 14 May 2010

Something I found online

I don't look ill...... although I might have a pained expression in my face which may appear to be outwardly grumpy. Take it that I am in pain and I am trying to hide it from you the best I can.

If I am quiet or in a non-talkative mood, don't assume that I am in a bad mood, I am merely trying to come to terms with what I can no longer achieve, or can no longer do all that I want to do, and that it is very frustrating.

On the other hand, I might be exhausted from dealing with the pain and discomfort, or trying my hardest not to fall over with the balance issues that I have.

Do try not to pity me, I can do that very well for myself at times and I do try my hardest not to sink deeper in to it.

Don't compare me to other people with "similar" pain issues, everyone has their own problems, some worse than mine, some not so. Some people have managed to come to terms with it, I might not have yet. Pain is different in all people. Not even two Chiarians have the same symptoms, although we do share a common bond.

I know it could be a lot worse, and I am grateful that it isn't, I really am, but it doesn't make me feel less pain or feel better. In fact sometimes it makes me feel down that there are people that are worse off than me.

Just because I am in pain, doesn't mean that I can do much about it. Paracetamol is not a cure all. Some medications don't work, some have horrible side effects and give me other problems that add to the stress and feeling of unwell.

Don't tell me what I can and cannot do, don't label me as disabled. I want to try and do the things that I used to so, if I can't, then at least I have tried and have ticked off another box. Don't blame me for trying again and again........ I will get the message eventually.

Don't assume that I am angry or upset with you......sometimes we make mistakes and lash out at others. It is merely frustration with myself. I don't mean it, I might have missed the fact that I have upset you. Don't ignore it, tell me so.....but do it nicely please, lets not start an argument.

Don't think that just because I can do something today, that I can do it again straight away, or can do it tomorrow or the day after. My symptoms can change daily, my energy levels and patience can be sapped by the simplest of tasks one day, and appear easy to do the next.

Try and treat me as a "normal" human being, I will respect that and will be very grateful. Try and encourage me to do "normal" as much as possible.

Don't make exceptions for me, I can do that for myself.

Don't be upset if I cancel long standing plans at the last minute - I want to be there, and I am trying to be there but sometimes I can't and don't have the energy or capability on the day. I cannot plan ahead with certainty but I will plan.

Learn about my condition and you will be better armed to either help me when you can, or be aware that sometimes I do need help and haven't asked for it, or that I really don't mean to be rude or ungrateful. I am very grateful, I need friends now more than ever. You will know why I react in the seemingly wrong way will help you stop feeling like you have upset me - You haven't.

Don't be afraid to ask me how I am......I won't always give you bad news, so don't ask expecting it ;) Sometimes I might - so don't ask if you don't want to listen ;)

Help me to see my behaviour through your own eyes - but take a step back first and try and see it through my own.

Don't think that I am just in pain and that's the end of it - there's a reason that the pain is there - it's my bodies way of telling me there's an issue somewhere. That pain leads to other symptoms, and the cause of the pain can also cause other symptoms. Most of which I have no control over.

Don't be afraid of offering me a hug or giving me a little encouragement - we all need that sometimes. If I reciprocate or give you a smile back it means that I appreciate it, If I reply with a grumpy face - I still do appreciate it - very much, there's just something else going on inside my head.

Don't be sad that you cannot take my pain away, don't feel helpless because you cannot help me, what's the point in us both feeling frustrated and useless? Most of the time, I can't do anything about the pain myself.

If I tell you that I cannot do something - I really mean it. If I tell you that I am in pain - don't ask me to empty the dishwasher half an hour later and get upset if I can't. I will try my best you know.

If you ask me to do something in the morning - and it's not done by the time you get home - it isn't because I forgot (well not always) nor is it because I am lazy (although I still can be) it is because I used up all of my energy doing other things. Sometimes all I can manage to do is to sit down and sleep - it doesn't mean that I expect you to do everything for me - it just means that I cannot do as much as you sometimes expect me to and as much as I used to do. I will get around to it - tomorrow I might feel able.

My time table will not always match yours - I can't help it. That's just the way it is.

My life has changed drastically - and not for the better. Please don't expect yours not to change if you are involved in mine.

Know that I still love you, I might shout, I might grumble, I might complain, I might get easily frustrated. I am very grateful of the help and support - just don't make me beg for it.

I have a lot to come to terms with, I have a lot to face up to, it takes time to do so and even longer to accept.

Frustration can bring out the worst in us all - there are two sides to every coin.

I am not always miserable - but by giving me something else to grizzle about isn't necessarily a good thing - there's enough right here to be going on with for now.

13th May

So Finally got my MRI scan date. Its on the 21st May, which is next Friday.
Getting excited to being one step closer to being all fixed up.
Went into work yesterday and found out I am getting half pay for the next 42 days and then nothing. I AM SCREWED!!
They don't want me back until I have been given the all clear from the neurologist, I understand because I can't be put in charge of 30 kids and then faint. However I am still worried about being broke =[

Tuesday, 11 May 2010

Beyond fed up!

It's currently 4.39am on Wednesday morning. For the past few days my quite bad sleep pattern has gone altogether. I've had about 2 hours sleep in over 48 hours. I just can't fall asleep, I can lie here all night with my eyes tightly shut, however I can't sleep. I feel tired but wired. It's almost like I've drunk too much caffine. My body feels tired but my mind is buzzing.
I've stopped drinking all caffine, the doctor reccomended having a regular intake of caffine as apparently it helps the flow of spinal fluid, and my spinal fluid need all the help it can get. The bit of my brain which has slipped down is acting like a plug and stopping my SF from moving out of my head, which causes pressure in my head, which inturn causes my monster headaches.
So it's a case of weighing up whether I have no sleep or a headache. I've been reducing my caffine for about a week and my pain is rising, and that keeps me awake. I can't win!
Getting short tempered as well. I think it's lack of sleep coupled with me being stressed about having still not had my MRI date.

Anyway, I watched a really good documentary earlier in the night. It's called dear jack. It is about a guy called Andrew McMahon. He is the lead singer and pianist in two awesome bands, Jack's manneqin and something corporate. The film is basically a video diary about his fight with lukaemia. It was good!

Plan for tomorrow=uni essay.

My picture today is Jacob again. This was taken Monday night. I was in the garden and he was blowing kisses at me. He then started leaning on the window which resulted in some comedy photos. This is my favourite one!

Monday, 10 May 2010

Good Luck!

Good luck to Holly.
Holly follows my blog and I follow hers.
She is having her decompression surgery at Southampton Hospital in the morning.
So good luck, you'll be fine and it'll be done before you know it.
Then fingers crossed it will be my turn =D

Sunday, 9 May 2010

9th May

Update of last week.
Tuesday: I spent some time with Flo and April! Just hung out and went to Hythe market, it isn't as good as I remember.
Wednesday: I saw Claire. We went to Southampton for lunch. We went to Yo! Sushi and tried lots of new foods. It was really nice, however I know now that I am not very keen on seaweed. We bought some garden furniture and spent a hour and a half just putting together a table. Then we went out to eat again, we went to the haywain for a carvery. Then youth club in the evening.
Thursday: Went out for dinner with Hannah to the bold Forrester, ate too much food and just chatted. Do this at least once every two weeks and its awesome! Voted as well, didn't do any good.
Friday: Spent the day in bed, was feeling unwell and had a rough night. Then went to Claire's house for sausage and chips and to write a letter to the hospital complaining about the lack of MRI scan. Fingers crossed it will have done some good and I will hear soon.
Saturday and Sunday: Spent the two days in bed again, not feeling well. Richard bought a car, he is very excited, bless him. He collects it on Thursday. Watching Lewis now and then going to bed. Hoping to feel better in the morning.

Thursday, 6 May 2010

6th may

Not much to update, voted and saw Hannah today!

However I saw the lady who taught me GCSE Latin for a while. Her and I did not get along too well at all. I was always a little bit too hyper for her liking. I bumped into her in the newsagents in hythe. She said hello and asked me what I had been doing since I left school. Her jaw almost hit the floor when I told her I worked in a school. I am sure it was the last thing she expected me to be doing. I was very pleased to be able to suprise her, I might have been pretty bright at school but according to her I "didn't apply myself in the manner needed to become anything more than a shop worker" and she thought I was rude =D

My photo of the day!
Jacob doing what he does best and being a little flirt, he is my brother and still charms me big time. He has a cold at the moment so is doing his best Mr. Grumpy impression

Tuesday, 4 May 2010

4th May

So not update this for a few days now, probably because there is not too much to say.

Still haven't heard about my MRI scan, considering when I phoned to hurry it they said I had to be seen within six week, they have wasted 3 weeks not telling me when it is.

I have started driving again, not much. My GP said I was oky to start driving when I saw him last wednesday, I just don't feel like I can concertrate for long periods of time. My mind sort of wonders, so I'm not driving for more than about 20 mins at a time. However, when I do drive I suffer for it later on. I think it because my neck is not resting on anything and my eyes are straining. Today I drove about, to lymington twice and I had to go to bed at 4 due to a headache.

All in all my headache pain is more manageable, I wouldn't say it has reduced but I think my mind and body are becoming used to the level of pain in my head. My neck pain however is going up and up. I suffered from a sore neck since going into hospital, however it wasn't that bad. Now it is horrendous. Feels like I've got wiplash or something =[

So what have I been up to since my last update?
I spent Sunday morning at a bootsale, didn't go to buy anything which was good as it was all rubbish.
Bank holiday Monday was spent chilling with my mum and brothers. We spent the afternoon flopping, watching a film. We watched 'the ex' it was oky, had Zac Braff in it who I like in scrubs so I expected this film to be funny, it wasn't really.
Today I met up with April and Flo. We had a nice lunch in a cafe in Hythe, went and looked round the Market and just chilled out. Spent the late afternoon sleeping off a headache. Then flopped on the sofa all evening, playing silly games on my phone with Michael.
Tomorrow is going to be spent with Claire. She and her boyriend were in a car accident yesterday and she is a bit sore, so we are going on a cripples day out. Going to town to pick up a few bits. Then youth club in the evening if I don't tire in Southampton.
Then dinner with Hannah on Thursday evening.
I am guessing the weekend will be spent in bed as I will have worn myself out. One good thing about that is at least I know my headache has come after me having a good time and not just because my brain is rubbish!

Fingers crossed for my MRI letter tomorrow!!

I've decided to add a picture to each blog to brighten it up. So here is the first. The is Ali looking very pleased with himself after getting stuck in Jacobs bath seat! Just a shame he found getting out of it far harder than getting into it!

Friday, 30 April 2010

30th April

I knew from the second I woke up that today would be rubbish. My head was more painful than it normally is in the morning. I stood up and felt very very dizzy and sick. When this happens it's like my eyes are focused on one spot and the room is spinning and pulsing. This doesn't go away like it would if you were dizzy normally. It can last for ages, however I suffer from it so often I have taught myself to walk almost normally whilst it is happening. Not today however.
I was also really confused. I was convinced it was Saturday, and thought it was the evening. Realised it was Friday but kept forgetting. Confusen stayed for about 2 hours.
Then I've been in bed ever since, pretty much unable to stand and feeling very sore. It's 5.40pm and I've been awake for about 10 hours. I've taken about 20 painkillers over the course of this time and they are not working as well as I would like.
Fingers crossed tomorrow is a good day, I seem to be having more and more bad days as the weeks pass.

Thursday, 29 April 2010

Do bad things come in threes?

Do bad things come in threes?
If they do then I am not having my operation for a while! 2 people in Richards extended family have passed away in the past week. I feel that's a bad omen, and I really am not too fussed about the delay in my operation.

Anyway, moving rapidly on. Had a very lazy day today, I didn't fall asleep till just gone 6 and then slept till just before 11. The lazed around till about 1 as I had a massive headache and couldn't even stand up without feeling very unwell.
Went to see Richards mummy as it is her birthday.
Then Richard took me for KFC for dinner, he really knows how to treat me lol.
Then spent a lazy evening, bought my mummy fish and chips for dinner.
All in all twas an oky day.
Headache score of about 7, which is just above average so hopefully tonight will be a night full of about 5 hours sleep!

Chiari Poem

I found this poem by a guy called Dr. Oro. It describes chiari very well.

Another headache
The third today
We all have them
So they say

I’m getting dizzy
My vision blurred
Your getting older
Don’t be absurd

I’m staying home
Too tired to go
Go see your doctor
She should know

Too many symptoms
You must be stressed
Take medication
And get some rest

I cannot think well
Can’t find the words
My memory slipping
My speech gets slurred

We’ll get a scan
Since you insist
If we find nothing
Please don’t persist

Don’t make me laugh
Don’t make me cry
It hurts to strain
I don’t know why

Your scan is fine
By report today
Incidental Chiari
So they say

What do you mean
By a doctor
I have not seen

It is anxiety
That makes you so
The world is stressful
I think you know

I pulled away
Gave up, or such
Until the pressure
Became too much

I waded through
The Internet
Fearful of losing
What I had left

It took some time
To come to know
My brain is hanging
Down too low

With every beat
The fluid flows
Deep in the brain
To the opening below

The rush of fluid
Seeking release
Finds cerebellum
Which makes it cease

The pressure spikes
My head explodes
It makes such sense
Now that I know

Working together
We’ll find a way
To make it better
So I say


Just a quick one to say that last night for the first time in ages I managed 4 hours of uninterupted sleep!! It doesn't matter that 4 hours is all I had all night.
Spending the day with Richard today, he is off work. Got a feeling today is going to be a good day =D

Wednesday, 28 April 2010

28th April

Had a rough night, couldn't get my temperature correct. Tossing and turning till about 5am then slept on and off till 8, when I had to get ready for a GP appointment. I knew it was going to be a rubbish day, my tolerance for pain is much much lower when I am tired.
Went to the GP, my mum drove. My GP is so nice, I have been seeing him regularly about my hand and my low B12 levels since about October last year. He is the kind of doctor who doesn't just want to get you in, give you medicine, then send you out. He genuinely seems to care, always being concerned about how your medical condition is affecting you on a more personal level. I always know I will have a long wait when I go and see him, but it really is worth it once you get to see him. Also my mum rather fancies him =]
I hadn't seen him since being told about my CM, so spent about 10mins (the appointments are only 10mins long) talking him through it, as he had only heard about it, never had a patient suffering from it.
Then he asked me how I was feeling in general, how I was coping ect. Then he gave me a month long sick note, and told me, unless I wanted anything even just a chat, that I could just phone and get another sick note, as he knew it was a hassel getting someone to drive me.
This means in total, by the time the sick note I was given today runs out, I would have had 2 months off work. Also the after week my sick note runs out the school is on holiday, so at minimum I will have had 9 weeks off work =\ I feel really out of the loop!
Spent the rest of the morning and afternoon in bed having lots of cuddles with darcey cat and taking photos of her being cute.

The pressure in my neck was really bad, nothing I could do would settle it.
I volunteer once a week at my local youth club, so went there at 6.30. Tonight we were iceing and decorating cakes, was a nice evening.
Went home watched some telly and had lots of cuddles from Alister, the son of a very good friend of mine.

They have now gone and it's getting late. I've taken all my tablets, and still the pain in the base of my skull and neck is not subsiding. It feels like my neck is not strong enough to support the weight of my head. So I guess all I've got to look forward to is another night of broken sleep and nightmares!

Monday, 26 April 2010

So apparently my hand is broken

Went to see my orthopedic consultant today. Now he is apparently one of the best hand surgeons in the country, his nurse told me no less than five times how wonderfully talented he is.
I first saw Mr. Hargreaves in September of last year, I've since been to his clinic four times, yet never really been given a difinative diagnosis. He has sent me for an MRI of my shoulder, for 2 sets of nerve conduction studies and several blood tests.
He, to start with, thought I had either a pinched nerve in my elbow or a brachial plexus injury. Apparently I have neither of them.
He told me today that I have, for a reason he does not know, a huge lack of ED tendons in my right hand. Apparently he should be able to easily feel them working, but cannot. He has asked for me to have an ultrasound scan of my hand to give a full diagnosis.
He did however say that the ultrasound was only going to conferm his diagnosis, so that we all knew the cause of my massivly weak right hand.
The only treatment he could offer me would mean that I would regain some function in my 2 rubbish fingers, however I would never be able to bend or straighten each finger on it's own. They would all need to either be in a fist, or straight. I don't think this would be a good move, it would make even simple things such as typing very difficult, maybe this would be an option at a later time, but not in the near future.
It is nice, even if nothing can be done, to finally have the possability of a name for what's causing my strange hand. I was starting to think my brain was making it up.

Anyway, it's almost midnight and my headache is preventing me sleeping. I hope this will subside and allow me a few hours of proper sleep, I'm off to pizza hut and the cinema tomorrow. Not too sure if my head will enjoy looking at a screen for two hours =\

26th April

Today is the 26th April. It's a Monday morning and the weather is rubbish. After having temperatures close to 20 degrees for the past week its looking rather grey outside at the moment.
Just had breakfast in bed courtesy of my mummy! I feel I am putting huge stress on my family. I seem pretty upbeat about it, cracking jokes about my huge brain. However in all honesty I am shitting myself. The idea of having my skull cut open scares me half to death. I just can't seem to tell people. I mean people keep telling me "how brave" I am. How they "couldn't act the way I am l, in face of such life changing news" I guess I don't want people to know I am scared, I want to put a brave face on it, in order to make people feel that it's not that bad, not going to affect me. I downplay my headaches, pushing myself too far to 'prove' I am doing fine. This then makes sleeping very difficult as my headache is always worse in the evening, and if I've pushed myself during the day, it makes it even worse. I need to find the balance of letting people know how much it hurts and protecting people. Not quite found that balance, I need to soon. The doctors are hoping to have me operated on and recovered by the new school year in September, which gives me about four months.

I've hardly slept for the past week or so. Seem to be cat napping. I'll go to be at about 10.30 and sleep for a hour or so before waking up for a hour or so. This happens all night till I get bored of it somewere between 7 and 10am.

I have a hospital appointment later today, with my orthopedic consultant about my rubbish hand. I am fairly sure he is going to hear my news about my CM and dismiss me from his clinic. I've been to see Mr. Hargreaves about 4 times and I don't think my hand is due to any problem he could solve, I think it's to do with my CM! The worst thing is he is always running super behind. This is massivly annoying when you are waiting but really good when you are in seeing him as he is very thorough. My appointment is at 13.35, however I will probably be seen closer to 3 o'clock.

I shall update this in due course.

Sunday, 25 April 2010

How I discovered I had chiari

So on the 26th March I woke up with a slight headache. I took some paracetamol and that shut it up. Had it for the next few days, nothing too bad, just a slight nagging that would go away with regular painkillers. I didn't think too much of it and spent the weekend out clubbing with friends.

Come the Monday morning I was still suffering so I booked an opticians appointment. I've had problems with my eyes since I was about 13. I am short sighted and have a squint in both eyes. The only time I have ever had a headache is when my glasses are due for an update.

Went on the Tuesday and the optician seemed worried about my headache, as by this point I had also gained double vision to add to my symptom list, which would increase in length quite rapidly over the next 24 hours. She was very nice and gave me my new pescription. She told me that my pescription had almost doubled in the 3 months since my last eye test. She also said she was concerned about my headache symptoms and told me to go to a doctor or A and E if my symptoms got worse.

Went to work the next day and was feeling very spaced out. I can't really remember anything about this day. Worryingly I don't rememer driving home. My headache had got worse throughout the day so after getting home at about 3.30 I had a nap in a dark room. Then when I stood up I passed out and was sick.

My mum then told me to get to A and E. My friend took me, I felt a bit silly and thought I would be told to go home and take more painkillers. I was seen by a triage nurse and rushed straight through to major incidents and put in a private room, as it turns out they thought I had meningitis when I first arrived. Ended up on morphine due to the pain, I would be on regular morphine for the next week and a half. My heart was at 150BPM and the doctors were concerned about this along with my pain, vomiting and constant spaced outness?!
Had an emergancy CT scan and was taken through to acute care. I spent the next 2 weeks in the nurological center being monitored. During this time I had regular blood tests and a lumber puncture. This was the worst experiance of my life, felt like my brain was being sucked out of my head.
Was told I had chiari, which was spotted on my CT.

I am currently waiting for an "urgent" MRI scan. Urgent in NHS terms means leaving me in pain and unable to do anything. I've been out of hospital now for almost 2 weeks and still have not got a date for my MRI scan. If I don't receive anything by Monday I will start hassling.

So that's all, I'm stuck in limbo. Not able to work or drive but not unwell enough to be in hospital and most days I am able to get out and about for at least a few hours. I think some people think I'm not that unwell, like if I tell them my brain is falling out I'm not supposed to be able to go out. They don't realise its a relief to get out, as it means the pain in my head is giving me a little break. I can't go far, to the shops or be driven to a friends house, but that's better than nothing.

Currently my symptoms are:
Double vision
Pressure in my ears
Neck pain
Top of my back hurts when the headache is really bad
Short term memory loss
Fuzzy head
I sometimes space out, I can loose hours doing nothing.
I get obsessed with silly things like playing solitare on my phone (I'm not normally such a geek, honest)
I also am having slight difficulty swallowing, like I forget for a moment how to swallow.

Medication I am currently on:
Gabapentin 100mg three times per day
Paracetamol 1000mg four times per day
Dihydocodine 60mg four times per day
Ranitidine 150mg twice per day
Amatriptlyine 60mg at night
Folic acid 5mg in the morning
Ibuprofen when needed up to four times per day
This just about controls the pain. It's still there, but I can ignore it. It gets worse at night, around 8pm and it wakes me up during the night quite regularly.

Next update when I get an answer about my MRI.

First post!

I have recently been told I am suffering from Chiari type 1 malformation (CM)

This blog will be updated regularly with what happens as I find more about what is happening inside my head!
I wanted this to be from the view point of someone in the UK, as all the other blogs seemed to be by American people. I couldn't find one from an NHS point of view.

This first post will be all about what I know so far.

About a year ago I started suffering from a weakness in my right hand. It then developed from a weakness to a clawing of my ring and little fingers.

Not an amazing picture and for some reason it is mirrored, but this is as far as I can straighten my little finger.

I had tonnes of tests done, 2 nerve conduction studies, too many blood tests and an MRI of my shoulder.
The nerve conduction studies showed nothing, as did the MRI.
The blood tests showed I was suffering from very low vitamin B12 and folate levels.
The neurologists recommend splinting and regular physio.

So I got a horrid splint and had one session of physio.

That's when my chiari adventure began on the 31st March 2010.