Its been a while!!!

Well, it's been a while since I last posted.In that time I have been discharged from physio, started at the gym, seen works occupational health Dr and started volunteering at my work 1 day a week!!



Been a bumper few months!!


Although it is such a scary thought that I no longer see a physio weekly....it is great to have a normal existence where i'm not visiting the hospital twice a week!!


The gym is a chair based exercise group...hard work but worth it, as I have noticed improvements in my ankle muscles!


And finally to work....thats just ace! (",) getting in and speaking to people again! Also feeling useful!

Booted in the ribs

Eurgh.....feel like I have been booted in the ribs!! Chest infections suck!!

Sadness.....

There is just not enough known about Chiari.....no 2 people react to it or the surgery in the same way, and other medical conditions make it more complicated. Research into chiari and chiari with other complications needs to be done so no more people have to suffer unjustly or be lost to this condition! One thing that really bugs me, is when someone says "oh you need to think positive and you'll be fine".....tell that to the family who have just lost a daughter & sister......they never gave up hope and were always looking on the positive side.....positive thinking is a bonus and can help you to feel better mentally.....but if there is too much going wrong inside, no amount of positive thinking is going to make you well again!!

Discharge from physio

Well.....after 14 months of going to physio twice a week, its been dropped to once a week and the word "discharge" has also been mentioned!!! Scared much? I think the idea of being left to my own devices is scaring me more than anything else!!! How will I know if i'm still improving? What if things go wrong? My physio is amazing and she thinks I will continue improving for a long time to come, but I think just the thought of her not monitoring me is quite strange!!

It will be amazing when I am well enough to be discharged as it is one step closer to getting back to work!!!

Returning to work

So, it has been almost 2 years since I last worked.....23rd of Feb 2010 to be exact.....yesterday I went to see the Dr to get my latest "fit for work" note......my Dr agreed with me that another 3 months (April) and I might be ready for work!! I will be so happy when I am ready to return to work! It has been one hell of a 2 years!! But there finally seems to be a light at the end of the tunnel!!

Spoilt

I received a package in the post from New York the other day....when i opened it i was surprised to find a lovely care package created by a chiari sister called Barbie (",)

In the package was:

a pen with angel written on it, a purple butterfly keyring, a hairband, a pair of purple aloe vera moisture socks, a purple mitten (one of a pair, another chiari sister has my match), a christmas card and a lovely picture of her dog (our chiari mascot maisie) in her christmas dress (",)

It was a lovely package to receive and i am so thankful for my chiari family around the world (",)

Chiari Sisters of the world unite

These two lovely christmas tree decorations have been sent to me by chiari sufferers in the USA.....the star was sent to me by a lovely woman in Oaklahoma and the angel is from Hawaii!!! Its is fantastic to receive things from other sufferers who know and understand what you are going through! It makes me realise that there are others out there thinking about me (",)

2012

Well......its 2012!! Happy New Year to everyone!! I hope anyone who reads this has a healthy and happy new year! (",)

Christmas

Well.....Christmas is over for another year....this year has been fantastic!! (",) Just the fact that i'm able to walk again is amazing!! Spending time with my wonderful family has been amazing!!

We packed up our over night bags to stay at my mother in laws on boxing day....and came home yesterday!! Had a great few days but having a well needed day on the couch today while my poor husband is back at work!!

Looking forward to a great new years eve party at friends tomorrow night!! (",)

Christmas Night Out

I am so excited right now!! Its my works Christmas night out tonight....I haven't spent a lot of time with my colleagues in the last years due to being ill, so i'm really looking forward to it!! I've even had my hair dyed for it! (",)

We're off to a local cricket club for a night of good food, good company and entertainment!! (",) Just hope my dress fits......

Christmas Camp

Well, this last weekend, I went to North Wales to a little village called Lllansannan with a group of Scouts. It was a great weekend, Friday night was Christmas Eve, we decorated the place and then the kids decorated stockings to hang on their bunks for "Father Christmas" to fill with goodies!! Saturday was Christmas day and all day we spent making various things to take home! and then at 7pm we all sat down to a 3 course meal in black tie!! Sunday was boxing day and we tidied the place and got packed up for going home!! All weekend I had to wear a delightful hat, with my name on so the kids knew who I was!!

One of the things we made, was a fantastic little christmas tree made out of safety pins and beads!!

Christmas Tree

Well....I managed to put the decorations on my Christmas tree this year!! Made me so happy!! As I had to "direct" my husband with the decorations last year!! Was completely exhausted afterwards but it was well worth it!! (",) and the Christmas cards have all been posted (finally)......getting in the mood for Christmas now as we only have 2 presents left to buy (",)

Christmas

Looking forward to Christmas this year.....last year I had to sit and watch as the Christmas decorations went up and the cards were written.....but this year I have written ALL the cards (",) and i'm looking forward to helping put the tree up tomorrow after a Christmas party this evening!! Yay.....only 5 more presents to buy and we'll be sorted!! Christmas day is a busy one for us, my parents in the morning, my mother in laws for Christmas dinner and then over to my grandparents for a party Christmas night!!

Already in the Christmas spirit after a Scouts Christmas Bingo last night where I won a fantastic food hamper!! and some novelty mugs and plush characters!

12 Month Review

On 29th November 2011 I had my 12 month review at the Walton Centre.......I woke absolutely petrified (no idea why) and felt so sick.......BUT this time I walked into the Walton Centre.....it had been an awfully long time since I walked in there so it made me feel 10feet tall!!!

I was called into the room by the nurse, and I walked in with my fischer sticks and shook the hand of the Dr (not my NS but one of his Reg's)......He was smiling a lot and revealed to me that he thought the wrong patient had been called, as he wasn't expecting me to walk in to the office!!

It was all good news.....no more MRI's or surgery!!! And I don't need to return until Dec 2012!! He also said that I can apply for my driving license back again!! That would be amazing......

Bye Bye

Today I said goodbye to my zimmer frames....they have sat, unloved (and been my husbands hangers) since July!!! And I also said my goodbyes to the free standing toilet frame and my bathroom is starting to look more like that of a young woman rather than an elderly woman!!! Plus....they had to go this week as they were where we are putting our christmas tree up at the weekend (",)

Long Time

Wow, its been a long time since i've posted!! Well in that time, my wonderful husband, dad and brother raised over £1,500 for the Walton Neuroscience Fund......

In July we went to the south of France for just over 2 weeks....1 week spent in Lourdes where the weather was awful to say the least!! Rain every day!! I looked so special in my wheelchair waterproof!! (",) The second week we spent just outside Bergerac in a converted farm house/barn....it was amazing!! We had our own swimming pool....and the weather was fantastic!!

Since then, I have not used my zimmer frame!! Woo hoo!!! I started with crutches and in around September I graduated to my fischer sticks permanently!! Now at home, I only use 1 stick and occasionally walk unaided!!! That is the best part!! I am still attending physio twice a week at the local hospital, and we are working on me walking unaided!! (",)

My wonderful husband is fundraising for The Walton Neuroscience Fund

my lovely husband Paul Cunningham is fundraising for The Walton Neuroscience Fund he is completing the Liverpool-Chester-Liverpool bike ride....any support would be appreciated (",)

(",)

Physio again today.....Straight off she had me walking with 1 stick (to show one of the other physios) and we walked around the room (",)

The best part about todays session was that she had me stand up and throw a ball across a "plinth" to her...which she said was too easy...so she blew a balloon up and we played a game of mini volley"balloon" across the "plinth"....she was so happy that i was shifting my weight and even leaning back to hit the balloon if it was coming too close to me!! Great day......

Walking

Watching Wimbledon aching to be able to walk properly...let alone play tennis the way these players do.....but today was a real good day for me at physio....I managed to do my 7km in 15mins on the exercise bike and then did some posture standing work.....

The BIG news is that I walked around the physio gym with 1(!) fischer stick!! And it felt fantastic....my poor right arm didn't know what to do as it is so used to having a crutch/stick in it!!! Walking with 1 stick was my target for the end of July...and I did it today! 5/6 weeks ahead of schedule!! It means things are finally going the right way and speedy!! (",)

Pacing yourself......

Well yesterday was physio yet again.....getting up in the morning is easy.....its the moving around thats hard! I just wish I didn't feel so sick in the morning!! And having to get ready so soon after getting up is even harder!! I have to be ready from 8:30am in case the ambulance comes early....

Thankfully they usually come around 9:15am and my appointment isn't till 10:30am so I have a chance to relax and my stomach can settle....

Well thats usually the case.....yesterday I was picked up at 9:30am and we still had 2 more pick ups along the way so I didn't actually get there till just 10:30am so we got going straight away!

We did a lot of balance work yesterday, so I was stood up for a long time which was great! I did a lot of looking left and right over my shoulders which is great as it will come in really handy when I try to get my driving license back!! (",)

Roll on next tues......