sorry not updated in a while xx

hi all not been to good lately. loads been happening, Pain been bad meds have changed Again! not lost much weight yet only about 5 lbs in total but im determind to really focus now! My story was in the evening post and carmarthen journal a while back so a massive thank you to Alex Smith for writing it xx there is a collection box in Upper Brynamman post office, massive thanks to Anna for that. xx. speak soon lots of love xx

week 2 weigh in.

good morning. i havent weighed yet, just came on quick to say im actually having a normal  morning so far lol just a mild headache :-) my little boy is going away to pendine for a week with the school today, he is so excited bless, i cant wait for him to have some fun, going to miss him loads though. im off now to check for the 100th time that he got everything lol. be back later with weight update xx

sorry missed a few days xx

just a quick update as im really not good today, travelling has wrecked me. well photographer came thursday to take pictures of me to go with the story, i felt like a right numpty lol his flash went off oads when he was changing the lense so had sparkly eyes all night. ive handed out a few sponser forms and arranged for collection pots to go in a few local shops. went to my aun and uncles ruby wedding anniversary last night, i only lasted 2 hours though head was real bad and even worse today. it was lovely seeing my family, especially my big bro, sis in law and beautiful niece and nephew. god i miss my family so much. well  days till weigh in so keep your fingers crossed for me. lots of love xxxx speak soon xxx

not to good :-(

Omg Lumber Puncture was horrible worst experience of my life, i stop counting after 20 tries! a junior dr was doing it and kept hitting the bone, then pulling the needle all the way out instead of half way and reajusting, because i was in a right mess my mam had a vertigo attack and vomitted everywhere so the registrar took over. why he didnt sooner i dont know! then last night i honestly thought i was dying because of the low pressure headache, it was so bad and i was sick all night with nose bleeds, very scary.! so glad it was brought forward and not done today. imagine going through that on your Birthday! im not to bad now though just a dull headache, feel hung over but im not obviously and have a very black sore back. only managed to eat a ham salad roll and  banannas yesterday and loads of coffee today on hospitals advice and i had egg on toast and my children did me a little tea party bless. hopefully feel better tomorrow and write a nice blog instead of a whingy one lol. nite nite all and sweet dreams xxx

weigh in day and week 2

well ive lost 4lbs so very happy with that, hope fully il keep up the pattern shouldnt put it back on then. going for my first lumber punture in the morning so dreading that, it was suppose to be wednesday my birthday lol but they phoned today and brought it forward.  mother is taking me she's a star dont know what i'd do without her she supports me so much when i need it. everyone is being supportive im so lucky. well my stitches have healed nicely so just my IIH to consentrate on now and try and have quality fun time with my children, not had much of that with me being so ill.  im eating well plenty of banannas to help with the pins and needles and loads of veg, even the children enjoy veg so i made my own vegtable rice today with low fat sweet and sour chicken, it was yum. Well Done to my challenge girls for their commitment to our challenge. bye for now xxxxxx

oops missed a day

hiya, sorry i missed a day yesterday guys, was a really bad day head was banging all day and felt sick all day, so didnt really eat much apart from my meds just drank plenty of juice and water. not feeling to bad today just got the every day burning sensation in my head + pins and needles in my feet real bad so must get some banannas. strangley im getting used to them now lol oh how we adapt hey! my stitches are healing nicely so i think il be running about in no time hahaha. speak to you later, lots of loves and have a nice day xxxxx

continued from today

well im back as promised, writing with my nails, bloody meds and pins and needles, had corned beef tomatoes and potatoes for tea, 1st meal ive cooked all week due to my op. kids must of thought it was xmas bless them. well head banging so an early night for me. goig to pay for my glasses tomorrow so hopefully have them by friday so i wont have to live like a vampire lol. nite nite all sweet dreams xxxx

2nd day of challenge

hi there, sorry i didnt update last night, yesterday wasnt a good day. woke up today with only a normal headache lol and my lips are mine again :-) but ive only just taken my acetazolamide.( the nasty mediation as my neuro calls it. well i had porridge for breakfast, with a bannana which is good for me as i hate breakfast, but if im gonna do this right its three meals a day.  i will definatly sign bak on later, hope you all have a good day and painfree day to my fellow ihers xxxxx

D-Day

Well hello there, not a good day today pins and needles in my lips, hands and feet, head feels ready to explode and the whooshing came to visit yesterday and forgot to buggar off!  but on a brighter note diet going good so far probably because ive only had coffee, orange jucie, water and a bananna lol. when my lips are mine again i will eat something balanced. my weight at present is 14stone and 11pounds. see lots to lose so did deep into them pockets guys and help a good cause, bye for now xxxx

my favorite IIH quote, describes how us sufferers feel

Imagine a headache more intense than any you've experienced before, where your skull feels as though its been fractured and will explode from the unbearable pressure inside
Imagine if it did not matter what pain medication you try, it would not go away. It's a pain thats source can't be seen and few can understand its intensity.
Imagine being on so much medication that it makes you even sicker, just to keep from going blind, or weighing the option of having a shunt drilled into your skull that may not even work and needs repeated revisions.
 Imagine a world that fades in and out of focus, where objects double or sometimes disappear altogether, where the sun is no longer beautiful and music is no longer soothing but a painful shadow of what used to be.
Imagine sitting or standing perfectly still yet feeling the world around you constantly in motion making you feel dizzy and nauseated.
Imagine trying to listen to others speak, to concentrate, to think, to remain SANE with an persistent loud ringing always in your ears and skull, sometimes squealing constant, sometimes pulsing with the beat of your heart.
Imagine feeling so tired from living in constant pain that sleeping is all you wish to do, but your head hurts so badly you can’t stand to lay it on even your softest pillow - So you sit up at night and cry and even that hurts.

IIH UK £s for lbs Challenge

Hello everybody and welcome to my blog, my name is michelle, i am a 33yrs old single parent, i was diagnosed with IIH on march the 17th 2011. it was by accident i was diagnosed as i fell on the ice on christmas eve and landed on my head, by new years eve i couldnt stand the pain , confusion, double vision and burning sensation down my head neck and shoulder so my friend made me go to the doctor, she thought i had severe concussion which i did but she was concerned about my sensitivity to light. i had a CT scan which came back abnormal so whent for an MRI, which showed my pituitary sella was empty, i explained to the neuro i have a constant whooshing in my ears and i lose vision so he check my eyes and the optic nerves in my right eye are swollen and one nerve has no pulse so i am waiting for a lumber punch. oh the joys lol. i have to lose 5 stone in weight so this is what this blog is all about so please people put your hands in your pockets and help us rase money and awareness for this terrible condition. xxx