The Party Season Is Almost Upon Us……

Crazy Duo and stick

Where has this year gone???? I actually cannot believe that we are looking at our “party wear” and considering our festive celebrations.

The TV has Christmas adverts with happy, smiling families all enjoying themselves, when we actually know that by 3pm most people have had enough and don’t want to see their relatives for another 12 months J

The stores have their decorations up and the children have started to practise their school nativity plays. But the thought on most adult’s minds apart from present buying is the office/friend party.

So where does that leave people like me who fall slightly out of the normal remit when out and about for Christmas? Below is the checklist I use when venturing out into “Partyland”, it is for me and friends to look at to ensure we have all eventualities covered……

·          Does the establishment have stairs

·          Can I get the chariot inside and move around without taking out half the people in there  J

·          How is easy is it to get to emergency treatment

·          Is there someone going who will not be “fall down drunk” ,obviously with Xmas spirit, who would be able to help if something happened

·          Is there suitable transport if the chariot is going along for the ride

·          Make sure your friends join in on the fun and laughter that I shall insist on J

Now, I know the last point sounds like a bit of fun but it is just as important as the others. People are funny creatures and they can, at times, be put out by things that are different. This was proven the other night by two ladies sat on the next table to me in a café. The story starts………

I was a little fed up with my lack of purchases, after shoe shopping, when a friend, Jax, invited me out evening shopping. Well, to cut a long story short we ended up in Marks and Spencers. For those who are not from the UK, this is a shop that is middle class and not known for joyous or outgoing behaviour.

That night the store saw a rendition of Titanic, with me and Jax swooping down the main aisles with our arms outstretched swiftly followed by a rendition of Chorus Line by yours truly, with hats and “chariot” high kicking…..the only problem was Jax had popped off to another area so I was left with a silly grin when I came face to face with an old gentleman who looked like he was about to scream for help!!!!

We then sat having coffee laughing about our antics…..and yes, I am coming to the point of all this and the ladies………when I noticed the two people sat behind us who were put out by our laughter. Their eyes kept sliding to the wheelchair and I could read their expressions very clearly…….”she is either not disabled and/or shouldn’t be behaving like that….so what did I do, well……as I was wheeled passed their table, I explained that life wasn’t so bad and quickly speed off to do another “Titanic” down the main aisle with Jax hanging on the back….fabulous!

The point I am trying to make is that the last thing on my checklist is the most important to me as it is the one that states my friends are ready to jump on the Sarah rollercoaster ride and be prepared to have fun in the most unusual of settings.

The other thing that takes up a lot of my attention at this time of year is the “OUTFIT”

·          Is it too tight

·          Can is sit in the chariot with dignity

·          How high can my shoes be before I cannot adjust my cane anymore J

·          Where can I hide my emergency meds, not in my little handbag that is strictly for lip gloss and mascara!

So how prepared are we all for the Party Season? Well in all honesty I have learnt of the years that Christmas evenings out are very different to the rest of the year. A little prep is good but don’t waste too much time on it. What will be, will be and the only certainty is there will be one of your party declaring that they “will never do it again”…..until the next time J

My first night out is in just over a week and quite a big bash…….in case you are worried, the dress is perfect, the bag is way too small for any use, the jewellery picked out and as for the shoes………incredibly high,, I’d hate to disappoint!

Work

It is going brilliantly. We have all gotten used to the fact that I am there and a little different but still the same really. I am now actually able to get on with some work and use my brain which is great. I have noticed through exercising the big grey matter that I seem less tired though still need to rest each day but a definite improvement. It could also be down to social interaction after a year of staring at the walls. I am lucky to be have successfully transitioned back.

In the UK this week the government is publishing a paper about people who are off work on long term sick leave. Apparently only 20% of people who are off work for more than 20 weeks actually end up going back to employment at all. This is shocking and I can only imagine that it is the lack of dialogue and understanding from all parties involved. Illness and disability do change your life and maybe it is an individual trait but I fought very hard to get back to work and already feel the benefits from being back into the real world.

The Gang

Mark, Boo and Jacob are all well and gearing up to December. We are still recovering from Boo’s birthday and she is still recovering form the multiple sugar rush she had from eating the all the cookies she made. Jacob got fully involved and we are all going to attempt to do more baking, our next adventure is the “gingerbread advent calendar” and to think my kitchen has just return to normal!!!

With the weather being so mild we have taken the opportunity to get out to the park, with Roxy, and enjoy the winter’s sunshine. Well, I enjoyed it, sat outside the café with a lovely hot chocolate watching the kids and Mark chase Roxy to get all the tennis balls back she had pinched from other dogs, not sure Mark had as much fun as me……

Anyway, I am off to check my outfit once again and try my shoes on…. I really need to try and stop Boo singing

♫ Deck the Hill’s with Boughs of Holly ♫ ….sounds a little painful to me J

Until next time

Sarah♥

Scary Things, Big Bangs, Birthdays, Ronnie and Reggie.

When did life become so serious? This is a question I have asked myself over the past month or so and to be honest my answer is….it never really was. I think we all get caught up in the whirlwind of life and forget, as usual, the important things.

The past week in the UK has been a fiesta of festivals with Halloween and Guy Fawkes night. I have manoeuvred my way through little witches and fake fangs to excited children running through the house to catch a glimpse of the night sky lit up with multi coloured lights that sprinkle as they fall to the ground. It has reminded me that the most important things are the moments in time that create memories. I have many special moments through the years but more recently I have taken time to stop, breathe in what is happening and then store it in the part of my brain that is for the most precious of memories.

I know, in advance, that this weekend will be one of those moments. Boo is going to be 8 and what with her news this year we have allowed her to have a Cookie cooking party. So, this weekend I will be tip toeing through, dough, glitter and icing. To top that she is the proud new owner of two guinea pigs, Ronnie and Reggie, more chores I think. I am sure that at some point I will have to excuse myself, wipe a tear and blow my nose. But I need to make sure that I do not smudge the “Chef” moustache that I have to apply as per Boo’s instructions…..I promise photos will follow.

I have now settled in at work and think that everyone is more comfortable with my appearance. People have started saying hello and given me the opportunity to prove that despite the exterior I am still the same old me. It’s almost like old times. I have found myself in the “naughty boy’s” corner with Phil, it’s brilliant fun J I had to giggle when I learned the fire alarm went off and to my buddy’s dismay they realised there would be no running with me full speed in the chair with my silver blanket as I had already gone home. There will be another time for the “Batman” moment I am sure J

Ok, on to what I suppose is the real news…my HUVs.

Well the numerous meds continue with a probable addition. My brilliant consultant, for those who are wondering I am being sincere, has decided to try me on meds that haven’t been used on HUVs before. He has to go to the hospitals governing body for permission but has no concerns regarding permission as we have exhausted every other medicated avenue. I am currently on 9 different forms of medication, this will be number 10. This one will be a different sort of medication and could be quite trying but I will cross that bridge when I start. I am in mixed minds about whether I want it to start sooner rather than later because of the Festive season fast approaching…..But looking completely on the positive side the meds have allowed me back to the land of the living…...though it maybe a case of hair today gone tomroow?!?!?!?!

I am now up to 10.5 hours per week so not far off the magic “15”. I feel that it is amazing when you consider that only 2 months ago we were still worried that I wouldn’t get back at all…..I know that in previous posts I have mentioned the importance of working with your place of employment when off long term sick. It has really helped my return and subsequent placement on my return. It has made the transition all the easier. This coming week I am using Access to Work to get there. This is where the government help towards journey costs to and from work. This will prove invaluable as we have been paying for taxis. It is a really easy process, well it is now I know what I am doing, so if you have any questions please post me.

A lot of you have said you have tried to leave comments and are unable. If this is the case please message or text me and I will copy and paste your thoughts onto the blog J

Once again I want to thank everyone who takes the time to read the blog and especially to those who have taken the step to be a follower. The condition is extremely rare and I feel privileged that I have the opportunity not to only educate you guys but also to support others in the same boat.

Just as a last comment I wanted to let you know that I have had had over 1200 people view the blog, from all continents, which is amazing and definitely spurs me on to continue writing my inane comments…..

The picture this time is of Roxy, my beautiful constant partner in crime and Ronnie and Reggie, Boo’s new guinea pigs who joined my crazy family today, bless them…..

Until next time

Sarah ©