Sunny Saturday 9th April 2011

Today is going to be a long day, im waiting in for a new fridge, delivery times befor 1pm lol so i bet i get the last slot. Anthony has took Joshua fishing with him for the whole day, so its just me and the girls today, when Tessa and Tegan are left to it they will play nicely all day together, so it looks like today will be a book day snuggled up on the sofa reading. Well that is after i have cleaned up, but first of all i must shift my ass off of this computer lol. My head was so sore last night, not as in head ache but i could feel tightness from the pressure and i got the dreaded vibrating eyes yet again, i hate them, i dont know if they are from the Diamo or the IIH but it is horrid, I cant focus on anything when it happens and it lasts for hours, it started last night at 8pm, and i had them still at 2am when i woke for the 10th time lol. I am doing better this week as far as the diet is concerned, so hoping i will see some loss this week, i dont want to let the girlies down, everyone is doing so well. IIH has made the news several times this week, kicked of by Sarah, then Tracey, then Heidi and Adelle all doing their bits for raisin awareness, i think they are all fab, i wish i had the confidance to do something too, but i never know how to talk to people, as i stutter and mumble and forget my words lol, I always forget whats just been said and look silly. Bloody IIH lol Im looking forward to going to see a new doc, im printing off loads of information this time, as i WILL NOT be forbed of anymore, i know my body better then any one them, Well i really must go and clean up a little, then relax and TRY and read for a while. x x

Me Again

Well on 31st March i went to see my neuro, Dr Mills and i find out he is only a registra, when i talk to him he just nods his head, i feel like he never listens to me, i told him i still had a tight feeling in my head, i have vision problems and a whole list of other stuff, but he put it all down to IIH triggering migranes, he woulnt do a lumber puncture to check my pressure, i asked him as i felt it was high, but he insisted on telling me it wasnt because i cant hear a whooshing noise in my ears, However i can hear a loud pitch whistle in my ears that some times hurts becuase it is so loud, after sitting there with him i asked to be referered to someone else who knows more about IIH, he has requested that proff vernon from QMC see me insted and i have already had my letter through, i am back for a field vision on 25th may then see the proffessor in june, i cant wait to talk to someone who knows more about IIH and wont dismiss everything i say. I didnt loose any weight for my first week of the challenge, i just havnt felt well enough to excersise, but i have weighed myself today and im 13.13. so hopefully by monday i would have lost at least a couple more pounds, makes me feel more determined to keep it up, Now the sun is out i feel a little better and moving about more, so im cleaning the house top to bottom, sorting out draws and cupboards etc, getting stuck in, it is good excersise and i will have something to show for it too, I used to be able to put on music loud and wizz round cleaning, but now the music has to be low so it dousnt hurt my head, music used to be my life, i love it i have a large collection of over 1000 cd's but hardly listen now, strange how things can change in a year or so. I took my daughter Tessa who is 3 to hospital yesterday for a tooth out, on she banged whilst playing and climbing about lol, it was he top front tooth too, she looks a bit odd now with out it, i hated the op as she had to have a general, i went in with her till she went to sleep, i didnt like it one bit, i sobbed loads when i left her, she took ages to wake up too, i would hate for any of my kids to get IIH, i dont think i could stand watching them go through all of the LP etc and operations, i have huge respect for the mums who do, they all deserve a big hug. Well im off for a bit i cant sit here for more that 20 mins as the pins and needles come on so strong i cant feel my feet or hands, i must buy a better computer chair, see if that helps.

March 30th 2011

Well yesterday was a real pain, I had to stay at my mums in Derby, so we could get a taxi at 7am to get a bus to QMC hospital for a 8.45am appointment, and this one i wasnt allowed to drive, because of the drops they put in my eyes to get a good look at the back. Well Monday night my hubby and I decided to buy the kids a new slide for the garden it cost £180, people said we are mad for doing it, but as we say our kids are not into tv and computers etc, they mostly love to run around and play out side, so we spent no more than someone else would on a computer or game console. Only this slide took us 3 hours to put up lol, hubby kept saying its the biggest Mocarno set ever. Well back to yesterday, i saw my eye doc at 8.45am and i managed to leave hospital at 2pm, and all this time i was sent from place to place for 9 differant tests, photos of eyes, test pressure of eyes etc, they put yellow drops in your eyes to numb them then they tap then to measure the prossure, then add drops to dilate the pupils so they can look at the back of the eye, take pictures etc, I also had to see someone about the double vision as its getting worse even with the prisms in my glasses, My eye doc said double vision is not related to IIH, it is because my eyes are lazy, Well i beg to differ. Also i was told i had lost some vision in my right eye since Jan 2011, After all those tests etc i feel so drained today, my head is banging, my neck and shoulder hurt, all to be re done tomorrow as im back at hospital to see my neuro for a LP. I really dont want a LP as last one i had 9 days of horrid pain becuse of the low pressure, i have no idea what else he will say about my eyes etc, fingers crossed for tomorrow, Oh i weighed my self this morning and im currently 13.13st, but i havent really had any energy to do any excersise today.

Worried about tomorrow

Well the diet is going well, because i have once again forgot to eat, i am of to my mums in a while, im sure she will forse feed me some thing lol.

I am staying away from home tonight at my mums so i can catch a bus with her in the morning so i can go to hospital, to see my eye specialist and get a fields vision test, i have everything crossed that the swelling behind my eyes has gone down, but deep down i dont think it has, as i am suffering more with my eye sight, lots more moments of blurred vision and floaters and my double vision is getting worse not better, even with the prisms on my glasses.

Then on thursday im back at hospital for yet another Lumber puncture, i really dont want one as last time i got really bad low pressure for 9 days, when every time i raised my head i was sick because the pain was so bad,

I keep thinking about the test in the morning, if my eye sight has got worse, will i loose my driving licence, as they said as soon as i fail their test they contact DVLA and tell them, i know of all the things to be worried about that this is silly, but it means so much to me to be able to drive my kids to school, as they go to a special school which is too far for them to walk.

Any way enough of my waffle for now,

Monday 28th march 2011

day one of my blog, not sure what to write, so just bare with me, today is also day one of my diet, which im trying to raise awareness and raise money for the IIHr, because little is known about IIH, and at present no "cure", which if im honest scares the heebee geebees out of me.

Well this morning i weighed myself and was 14st 1lb, which isnt too bad seeing as in jan 2011 i was 16 st, but i have stayed this weight for weeks now so i am trying to add more activities into my daily life then fingers crossed the weight should come off,

I first found out i had IIH in jan 2011 after i went for a routine eye appointment at specsavers, the descovered i had papiledema, which is swelling at the back of the eye on your optic disk, they rang the hospital stright away and sent me in as an emergency, little did i know they were worried that i may have a tumor in my brain, after being prodded by lots of differnt people, and an MRI scan they said it would need a lumber punture to determine what was actually going off, when they did it i had raised CSF then was told i had IIH,

I had never heard of it before and felt like i was the only one in the world with it, they didnot explain how, what,why or what can be done, they couldnt even give me a leaflet to explain what was going on, at this point i had no idea what my future held, it was the singly most scary point of my life, but there was a ray of hope, a lady in the bed next to me had over heard what had just happened and came over to me and introduced herself, she also suffered with IIH, she gave me her name and phone number and a few sites to check out, with out her support i would have gone to bits.

This all happened after over a year and a half of health problems, i was too and from the hospital for checks as i complained about double vision, pins and needles, neck and shoulder pain, memory problems, confusion, i was always brushed of, and sent home, no one thought to do a lumber puncture and see if it was IIH, they decided i could be on the starting path to getting MS so i had spent all this time thinking i was goin mad , that it was all in my head or getting MS, for my headaches they gave me migrane pills, for my sickness they gave me anti sickness pills for my double vision they put prisms in my glasses, but not once did they put two and two together,

Im just so glad i went to specsavers that day as it answered a hell of alot questions for me, yeah and left me with loads more questions but at least now i know its not my imagination,

Whilst i saw my nero all he did say about the condition is it affects women of child bearing age and who are over weight, and if i lost the weight i would get better!

After doing lots of my own research and chatting with others, i have found children teens and men who get this, not everyone is over weight, so i think they need to do loads more reaserch in this.