Wednesday 15 January 2014

The day Hello Kitty came to party

So the past 2 weeks have been all about my daughter's fifth birthday party! This year she asked for a Hello Kitty theme and asked that everything was PINK!

Up until about 2 months ago my daughter hasn't liked 'Pink', proudly telling people she is not a 'pinkish' girl so this new pink stage has been a bit of a revelation to us all.

I love birthdays, I always have. When I was a little girl I would stretch my birth'day' as long as I could! Just a day? Oh no! Lets go for the whole weekend!

Something that I am really having to work on is setting myself new realistic physical expectations. I have always been very proud of my make it yourself attitude and it meant for the first three years as a wife and mother our meals were from scratch and my daughter and I made most the gifts that we gave. I loved the lifestyle. Of course, when I became disabled things had to change and it's possibly the thing I struggle with the most. It makes me feel completely inadequate!

My husband now does a lot of the cooking because it is difficult for me to prepare food and I really miss it. I will raise the blood pressure of feminists around the world now but we had a very traditional marriage. I was the home keeper and my husband was the bread winner. I was very fortunate that even before my illness my husband has always been hands on with house work on his days off  (helping out where he could) but cooking was always my territory.

I take great pride in cooking nice meals for the people I love. As a little girl I use to plan elaborate menus and invite all of my extended family over for 'dinner parties'. For me cooking is about love, so you can imagine how difficult I have found it to let that go. (This is one of the things we have addressed with the occupational therapists. How to enable me to be able to cook completely independently again. Hoora!!)

Rationally I can say to myself 'All they need is your love and your time' and yet the fact that I can't 'do' as much as I use to is still a very sore wound for me. I am aware of it though which I think is positive and I am working on it. At least I've identified the sore spot!


It's not a great personality trait having your self worth (for want of a better phrase!) caught up in what you can physically do for other people but A; Before the disability I had no idea because I was able to give as much of myself as I wanted! and B; I do know now and it's explained a lot of past experiences to me and I fully intend upon growing as a person knowing this is within me. I guess it's all part of being kind to myself. (See previous blog!)

Urgh, I feel like this is sounding like I am a real downer on myself and it isn't meant to at all! I am not a self loathing person, I just, I feel my best when I am helping someone. I like to give to people and I suppose, what I am trying to explain is that it's only since I have become disabled that I've realised that that want to give to other people all the time is a bit wrapped up with how I see myself. In terms of being a useful human being etc. Man I have gone WAY off subject...

Getting back to the party...
 
Pre party as I looked at the food I had prepared and the decorations I had bought I simply thought "I haven't done enough" but when I saw how beautiful the hall looked and how happy my daughter was I was able to appreciate my hard work. (And the hard work of others. It wouldn't have been made possible without my amazing family and two friends who actually put all the decorations up for me!)

I also did something that I have never done before. I put myself in my wheelchair. Going in my wheelchair is normally only an option because I simply cannot do what it is I need to do without it (like being out in public in a non mobility scooter friendly place) but on this occasion I decided the best place for me to be was indeed in my wheelchair. Call it self preservation. I knew, if I didn't put my butt in that chair I would have over done it and the only person that pays for me over doing it is me. Well, in a physical sense anyway.


After the party I had a long soak in the bath and when I was reflecting upon the day it occurred to me that it was the first time I had felt comfortable in my wheelchair. Normally I HATE being in my wheelchair. The first time I went out in it I had a panic attack (after 6 years of not having one!) and it near enough broke my heart to see the reflection in shop windows of a woman sat in a wheelchair but here we are, 22 months later and I actually felt like 'me'. I was relaxed and I enjoyed myself. It was a HUGE victory. Huge. And even now a few days on it still feels pretty darn good.

I am so good at putting on the 'I cope with this so well' face but in this case I actually really did! It was such a fun party! I didn't feel like I was putting on a show or a brave face at all. I just genuinely had a blast.

I set up four tables each with a different activity on so the children were spilt into groups and then with an adult helper moved their way around the various activities so that everyone got a turn at everything and we weren't left with children running wildly around the room!

Table one was the toilet roll game! Using toilet roll you make yourself (or a nominated person in your team) an outfit to wear. The children had an absolute BLAST and we will definitely be doing this again! Even the mums couldn't resist getting involved!

Table two was the tray memory game. You place various items on a tray and cover it with a tea towel. You then do a sneaky swipe and remove something from the tray and the children have to guess what it is that is missing. This was another great hit and engaged the children far more then I thought it would! I would say this is a game to reserve for school age children. There were a few pre-schoolers at the party who did enjoy it but I think it was because they were integrated with the older children.

Next stop was the pin the bow on the Hello Kitty which we set up on the wall. I drew her and cut the bow out myself because you can't buy one anywhere but it was worth it. The children loved it and did great at waiting their turn. As they were in groups of 4-5 they didn't have to wait long.


Table three  I put out a tray of pens and some cardboard bunting and all the children got to decorate a bunting triangle. My original idea was that I would then string them up and put them up in my daughter's bedroom but most the children wanted to take them home which was absolutely fine. It was nice they had something they were proud of.

Table four was the age old, can't go wrong with it, works every time, biscuit decorating. Icing sugar, various sprinkles, a biscuit and a spoon. Job done. This never fails to delight children!


Pass the parcel is my daughters favourite party game and she asked that it be the first thing we did so I actually prepared two. One for the beginning and one for the end. The first one had a chocolate coin between each layer and the second as little toys that my husband and daughter had bought. For an nice added touch I put them in sweet little cellophane bags that had birthday balloons on so it was almost like they got a little present.

We did party boxes rather then party bags at the end of the party. I prefer boxes because I think they are more likely to be used again and again by the children where as party bags tend to go straight in the bin. We tied a helium balloon to every box so every child left with a party box, a balloon and I also made some biscuits that I put into Hello Kitty food bags. It felt like a great party.




I made the topper and was almost finished when I popped into the kitchen...
Just minutes later my daughter came in and said 'Look Mumma I drew on the mouth!'
So, yes she doesn't look like a Hello Kitty topper but she is a beautiful cat that my daughter
helped with!

                                          Cake pops without the sticks
                                  Marshmallows dipped in pink crystal sprinkles
                                           Cupcakes


                                         Meringues shaped like a 5
                                          Cones with chocolate coins in


                                    The table


                                 Hello Kitty Bow straws (I stuck the bows on)

                                         Food table
                                          Hall decorations






                                           How to rescue a helium balloon!

                                          We served strawberry milk to drink

                   Happy faces and bows on the bananas to make them more 'a peeling' ;-)


A few weeks before the party we tried to find a nice party dress but couldn't find one that my daughter really liked and she asked if I could make her a tutu. I used pink and lilac net with a very large pink flower button on the front. For the top half I bought a pink leotard (She also does gym and tap so it will get plenty of use!) and a Hello Kitty iron on patch for the centre! Job done! She also has a hello kitty birthday badge on here!

Blessings x




Monday 6 January 2014

Stepping into 2014 in style.
















BOOM! Now if that isn't the best t-shirt you ever did see I challenge you to show me better!

2014 has descended upon us which means it is now less then 6 weeks until album launch time! Wow! Steve and I have put so much of ourselves into this album I hope people enjoy listening to it as much as we enjoyed making it. On a personal level it has been a bit of a sanity saver for me in the crazy that was 2013.

If you want to learn more about the music collaboration 'Songbird' I am in head on over to www.relaxx.co.uk or www.soundcloud.com/songbird-Unexpected. You can also like us on Facebook at www.facebook.com/unexpectedsongbird  or be our friend by searching Song Bird (two words!)

Ok, plug over! As much as I could go on and on about that particular project I shall save that for another day! This is a health/life blog after all!

Update time!

I managed to honour the promise to myself that I would not put myself under lots of pressure for the 'perfect' Christmas but instead have the best Christmas we could have with my health limitations and I honestly think I did it!

The 10 days leading up to Christmas were still earth shattering exhausting but that was because my poor husband had an accident and ended up with his arm in a sling for a week! Our daughter was still at school and buzzing about Christmas coming and oh man it was such a busy week. There were a few crying tired tears! The thing I learned though it that actually in a time of crisis I CAN cope. Physically I paid for it but that was inevitable, the fact is, I learned that I am not as useless in a time of extra physical demand as I thought I would be!

We had a wonderful Christmas and I really felt like we got it 'right'. Good feeling.

The colder weather has bought higher pain levels as it does, but I have taught myself a new word. Capacity. Now I hear you say "But Clo, surely you have known this word most of your life?" and of course I have but I have just recently realised 'Capacity' is a word I like.

It has removed the constant battle between my desire and my capability. For the past 22 months my pain has been the enemy, I have been locked in a battle to not let my pain 'win'. It was to be challenged and never 'allowed' to hold me back. Do you know where this attitude gets you? I'll tell you... no where fast!

The only place that gets you is crying on your bed because once again you lost the battle! (Yeah, so, I don't like admitting that to the world wide web but once again I will say this blog is all about what it is like to live with a chronic illness and, well, that's what it is like sometimes!)

I am now listening to my body more and more and taking her lead. I have not yet mastered this art but by using the word 'Capacity' I am able to rationalise my need for extra physical rest in a way I never have before. Go me!

I have an almost constant dialogue running in my mind. "Do you have the capacity for this? No? Then what about this? Have you got the capacity to do this? Yes?! Wonderful!" etc. I am also holding the consultants words very close to my heart... "Just be really kind to yourself".

I have learned if you live with a chronic illness and you are not kind to yourself  not only do you suffer but so do all the people around you who love you and care for you. I am day by day learning to forgive myself and be kind to myself. I cannot offer anything to anyone else if I am laid up in bed!


These are all amazing positive steps and I hope this can truly be the beginning of living with my illness instead of against it! If this is the first time you have read the blog (where have you been?! ha!) and don't know what on earth I am talking about all is revealed here http://www.youtube.com/watch?v=P-AeepZVuZQ


The not so good news is that my stomach has nose dived over the past 3ish weeks. Since June my husband and I have noticed that I am sick a lot more then your average joe but in the past 3 weeks I have been violently sick everyday and 'holding down' maybe one in every 10 meals? I am nibbling when I can and drinking lots of fluids but even that can be ridiculously painful at times!


 At the moment the only thing I can do really is keep trying different foods and drinking home made juices. A wonderful friend of mine bought me over a soup maker yesterday (which felt like the kindest thing in the world) so I am keen to use that. You throw all your veg in with some stock, set it to the type of soup you want and leave it in the same way you would a stew in a slow cooker. Here's the best bit though! At a set time within the cooking process it blends it! How awesome is that!

Needless to say I am so hungry! I feel empty in a way I never have before and would be inclined to chew on anything if it stayed still next to me for too long (says the vegetarian) watch out cat!



I live in hope that a week or two with juices and soups will give my tummy a rest and hopefully the muscles will start doing their job again. Lazy beeps! ;-)

Although this new development is far from my idea of fun I have achieved two things;

1. Using my visualisation to help me raise above the frustrations of it all. In my mind I have spent a pretty good chunk of time stood next to a lake in Canada watching my pain float away in the past 3 weeks. How very Zen of me! Haha!

 2. Not to panic. Even when the pain has been off the chart I have not reached my panicky pain since the 19th December which in the very least deserves a huge high five! It's not just a step forward it's a hop, skip and a jump forward! (Ironic concept there for a wheelchair user eh! LOL)



So I guess that brings us up to now! It's a funny sort of thing when we hit a celebration like NYE because everyone wishes each other 'health and happiness' at times that can feel a little like rubbing salt in a wound but even that I have managed to put into my own perspective.

Yes my disease is genetic and yes it will likely get worse with age but this is the first year that I have known what condition I am living with and I am keen to learn just exactly how to live with this. I will try everything and anything so that this becomes a part of my life and not my entire life. Chronic illness can consume you and lord knows that is nobodies 'fault' but I believe in my heart that my standard of living can and will improve in the months ahead. In 2014 I will be brave enough to embrace just about every alternative therapy under the sun because, well, for want of a better phrase I deserve it! I deserve health. Whatever my 'healthy' is. I deserve it.

It's our daughter's 5th birthday soon and we're having a party for her next weekend. Watch this space for the party blog!

Be blessed peeps!

Remember, tell the people you love you love them, tell the people you like how much they mean to you and concentrate your time on the people who make you feel good! Life is so precious.