New Year, New Look..and Resolutions

Ballet Boo

As you have probably noticed I have glammed up the Blog, "New Year, New Look", if only I could do that to myself as easily lol.

2012 has only been with us just a few days and already the soft gow of tree lights and tinsel has been extinguished and replaced with the sharp glare of reality. People have broken heartfelt New Year's resolutions and are already feeling deflated and fed up.

Before 2010 I found this time of year really depressing with the long days of winter still stretching into the distance but now view this time as the perfect opprtuntiy to sweep aside the incidental things in my life and bin them alongside the turkey bones and party leftovers. Unfortunately there are still people who cannot or will not accept my condition and if I hear "be positive" one more time I am going to implode. Positivity is demostrated in actions over a prolonged period not just smiling inanely and lying about prognosis and treatment. So, rather than fester I am making the rather drastic action of taking my broom and removing them from my everyday life. My chariot cannot take the weight of that sort of baggage. I feel liberated already :0D

The resolutions in my house have ranged from the childen asking for more alone family time to reducing the adult waistlines.... the second is most definitely the harder one of the two. I cannot believe how like a weeble I look! My good intentions are being stretched to the limit with lots of nice food still in the house but with a glam night out with the girls at the end of February I may result in actually sewing my mouth up. Is that the sound of cheering I can hear????

One very important resolution is to continue with this blog. It has helped me and others over the past months, I quite like writing it too.

The Hill festive period was a quiet one though we did seem to be busy at times. Boo was flower girl at the opening night of Romeo and Juliet, we cheered and booed at the Panto, dodged the raindrops with the chariot at the zoo, had several visits to the NEXT sale (the draw of reduced prices and frappachinos were far too strong) and spent time with close family. The two main days were very quiet and thank goodness after the other activities. I now have a few days to recover before I return to work.

On a serious note I have overdone things this year. It has been entirely my fault as my desire to be involved swept away the voice of reason. This means that the past few days I have been glued to the sofa in my PJ's looking like a strawberry and struggling slightly but it is a valuable lesson learnt.

I said in my last post that I have treatments and appointments coming up. Well it appears the oncology treatment may be sooner than anticipated and I have been informed to expect to go in within the fortnight. This is excellent news as it means I can start 2012 with some hope that the addition to my drug regime will help with the reactions and HUVs overall. I do admit to being slightly nervous as they haven't used it on HUVs before but that won't dampen my enthusiasm.....actually maybe ask me on the day ?!?!?!?!

The other good news is that I have found a really good support group called Vasculitis UK. They are really helpful and welcoming.

I am ending with a New Years quote, it is unfortunately very true.....especially after the first week in January :0D

"Many people look forward to the new year for a new start on old habits"

Once again thanking you for taking the time to read my words

Until the next time

Sarah

The picture at the beginning of the post is Boo on her way to the ballet Romeo and Juliet.

Goodbye 2011 and HELLO 2012 xxxx



Happy New Year xxx



Well, as we see the year 2011 out and get ready to welcome in 2012 I'm sure that many of us will look back with mixed feelings.

My family and I will be reflecting on how lucky we have been whilst spending a couple of completely self indulgent moments thinking "why us" but on the whole we know it could have been so much worse.

2011 has been quite mind blowing for me, I have lost some friends, gained new ones and re-introduced myself to others.

The one thought that has stayed with me through this year is how can so many good things happen because of something really quite horrible. I am incredibly lucky to have some really good friends and family who have been there for me at a moments notice more than once, who have remained calm and taken the children when, in fact, they must have been really worried at the time.

My strength has come from Mark who has been absolutely amazing. Some partners/husbands would have crumbled or worse walked away from such a situation but he has contiuned to be the glue that holds us altogether and the sane voice who intterupts my ramblings when I am losing my sanity. He really is one in a million.......

I have fought a long hard battle to get back to work, I got into a wheelchair, accepted the change, cried through frustration, cried through laughter, set up this blog, unleashed Gracie-Lou Freebush to the World and re-introduced my feet to some very, very high heels.

So what does 2012 have in store for us???

I hope that the forthcoming year brings at least one thing that you can all enjoy, maybe more time for loved ones or just relaxation, for others I hope it brings you comfort and time for the pain to recede. As for me, I would like more quality time with my children where we, as a family, experience more days out without the children worrying about what other peope think, they will in time.

For me, I have several appointments in January with the new treatment due to start. I am happy to say that work is going really well and I am aiming to increase my time there after the spring.
I have already started booking in the monthly "girl's night out" another reason to get the high heels out, lovely!!!! I have a new lease of life and can't wait to be out in the world.

So, my friends, at 12.00 on Saturday night I will raise a glass to all of you who have supported Me, Mark, Jake and Boo.

I have two more words to say

THANK YOU

Sarah

Have a Good One xxxx

Well it’s that time of year again where we all enter into the Festive Season with glee. I can say that I have embraced this time of year wholeheartedly. My approach has been one of a child in the sweetie shop and boy has it been fun.

I particularly liked the looks of confusion when a woman on 4 inch heels enters a room with a walking stick. I explain that I was born to wear high heels…….

In my last post I spoke of my big bash out and I have to say the outfit and shoes were very well received. Not sure the wheelchair went with it all but it was grey, the same colour as my dress J

I want to take this opportunity to thank all the people who have escorted and looked after me on my ventures out. Everyone has been fantastic. I still have a few more events to attend and can’t wait.

On a medical note the past couple of days have been absolutely brilliant. Firstly, Boo has been given the all clear for the present time. This means that her worry is greatly relieved and we don’t have to worry until her next lot of tests in 6 months time. I have also been informed that the medical board to the local Primary Care Trust have agreed to fund the next stage of my treatment. It hasn’t been used for HUVs before so we are over the moon that they have given the green light. It also means that we can enjoy Christmas before starting the next stage of the journey.

So, this is the time for me to say to everyone is that I will see you again in 2012

HAVE FANTASTIC CHRISTMAS AND EXTRA SPECIAL NEW YEAR

Love from Sarah, Mark, Jacob and Boo xxx

and of course Roxy xxx 

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 ©

Do You See the Real Me Standing Before You?



It's still me, look into my eyes



WARNING ALERT...RANTING…WARNING ALERT 

Well the day I have been longing for came and went. The “Great return to Work”…..

For you to appreciate this post you need to understand the driver that was behind my never ending efforts to get back to work. My goal was to quite simply to return to my place of employment, or so you thought......

In my mind, I visualised me driving, walking in my high heels, suited and booted, managing a team of advisors and engaging in my usual banter with colleagues all over the building……erm, not quite.

So how was it? The first day I was just so pleased to be back that I was quite literally on cloud nine. I picked a black outfit out and packed my satchel…it was like the first day at school. My first meeting was great and I was thrust into what was happening and what was coming up…….BRILLIANT!!!  

But after four days of being back certain concerns started to creep in…..

Don’t get me wrong I am still overjoyed to be back amongst the land of living and to see my friends who have given me such a warm reception. It has been truly lovely but yes, they are still some concerns….

I seemed to have transformed into Sarah Hill, the one with an illness. I was expecting some to be embarrassed, insensitive or just plain old ignorant but this turn of events has taken me by surprise. At what point did I lose my identity and become a lesser person than I used to be? It is as if people are unable to look past the HUVs and see me. I am not talking about the H&S requirements; I know they are there to keep me safe; it is the general attitude of some people. I want to scream at the top of my voice.

"Your IQ, mental ability or professionalism is not directly linked to what your body physically can or cannot do”

Maybe I am being unfair and not allowing people time to adjust, I have, after all, had over a year to get used to this new way of life. It can be a shock for people when they first see me but I’m not sure that it is a good enough excuse?

My intention is not to upset, certain people have been absolutely brilliant by treating me exactly as they always have, but to explain that just because someone is different on the outside it does not mean their personality has changed too.

If people took the time to speak to me they would quickly realise that I still have the biting humour and a wit that can cut the air like a knife J

So, back to my original paragraph about returning to work. The realisation that my continual hard fight to get back was not going to turn out as I had expected, has been quite hard to handle. This has had a profound effect on me. Mark and I have had long conversations and calmly come to the conclusion that this could be as good as it gets and we will have to live with that.

On the very, very positive plus side I have a husband who is soooooo supportive and willing to scramble with, or should I say push, me up every hill that life throws at us.J

This is quite unusual for me and I need you to know that I am not giving up, sad or angry. I just need others to grasp the fact that they need to see further than what is in front of them. Normal service will be resumed next time with witty and humourous comments about me and those around me.....

I am going to end this post with a simple request… if you see me or others who are physically impaired and you feel uncomfortable about starting a conversation, please take a breath before you say something and imagine how you would like to be spoken to……

Thank you

Sarah©

Hi Ho Hi Ho It's Off to Work I Go

Family meal out to celebrate my return, especially like the chocolate all over Boo's chin....

The Personal Bit

The time is here, it has been 378 days since walking out of my office for a week’s annual leave. Tomorrow I am returning to work.

When I first fell ill I was thinking of returning to work, in terms of days which soon lead to weeks. I remember distinctly being told in October that I shouldn’t even think of returning until Christmas. Then the day came when the consultant looked at me in the way that only they can and asked “So, Sarah, how do you actually feel about work?”  I realised at the time that the question was not actually how I felt about work but how did I feel about not going back.

Those who have travelled the very uneven road with me over the past year know that my main goal has always been to get back to the “Office”, it has in fact been the one thing that has at times kept me going. It would have been so easy to locate the duvet, climb under it and hide for months on end, but for me this was not an option.

The pictures I have chosen for the post today are photos of the most beautiful tree in my neighbour’s garden. When I first fell ill it was bright red, the leaves fell and then in the spring returned. Today the leaves are just changing to their most beautiful again, like this time last year. Strangely, my year has followed this tree and tomorrow it will be my time to bloom again….ok I realise not a youthful bloom but as they say the older the flower etc!!!!!

I have been very lucky with the support both at home at work to get me back. I had always visualised me turning up in my car, skipping up the steps, H&S allowing, and jaunting back onto the floor to see all my friends and colleagues. Unfortunately that is still a daydream. This is probably the hardest thing that I have to accept. I am returning but not how I saw it in my head. Even though I am confident with the new me sometimes I can have a wobble. Others can struggle when they first clap eyes on me. I smile at the sympathetic looks, laugh at the jokes that are made and try my best to put others at ease. If they looked closely they would probably see that I. too, can be uncomfortable at times. Friends say “Baby Steps” and that getting back is an achievement but Boy! do I want to strut back on to that floor J Maybe roller skates are the answer????

To keep me focussed I am concentrating on one very important item on my itinerary…..what an earth am I going to wear. Does one make a statement “I’M BACK!!!!” or do I creep in and say a little “hi” to everyone….it’s all in the clothes you know J I have to admit there have been more than a few minutes staring at my wardrobe looking for inspiration. Now, I know that some of you will not understand this but when you dress casually for days on end suddenly having to organise a formal outfit is challenging but fun! It will definitely be black, why change the habit of a lifetime….

But seriously, how do I feel? Well, excited, nervous, confident and shy. It’s a bit like Christmas Eve, you can’t wait for the morning to arrive with all its promise but you still have that tiny little worry the present you asked for will, in fact, be the piece of coal you dread J

The Practical Bit

I always try and put something on my blog that help others in my position and through the support from work I have found a government department that helps disabled people get back to their Jobs. It is called Access to Work and can be found on the link at the bottom of the page.

I am currently in the process of sending details for help with travel as I am unable to drive, walk or use public transport to my office.

There are many schemes on the direct.gov website that can help and the local Benefits office will also have a disabled department that are there specifically to help people return to employment. I would definitely recommend phoning them for the advice they can give you.

The Other Personal Bit J

Something I haven’t confided before is that I always listen to really loud music when writing on this blog. The music normally mirrors the way I am feeling and naturally this creates the mood of the post. Today’s album is Avril Lavigne. It struck me that I really connected with the “Anything But Ordinary”. The lyrics are below

Sometimes I get so weird I even freak myself out

I laugh myself to sleep it's my lullaby
Sometimes I drive so fast Just to feel the danger

I want to scream it makes me feel alive

Is it enough to love? Is it enough to breathe?

Somebody rip my heart out And leave me here to bleed Somebody save my life I'd rather be anything but ordinary please

Is it enough to die?

To walk within the lines Would make my life so borin' To the extreme (I feel) (I feel) (Ohh)

I want to know that I have been

So knock me off my feet

Come on now give it to me

Anything to make me feel alive

Is it enough to love? Is it enough to breathe? And leave me here to bleed Somebody save my life I'd rather be anything but ordinary please

Somebody rip my heart out

Is it enough to die?

I'd rather be anything but ordinary please

Let down your defenses Use no common sense If you look, you will see That this world is a beautiful, accident (La, la, la, la) turbulent, succulent, opulent permanent, no way (La, la, la, la) I wanna taste it Don't wanna waste it away yeah, yeah

I’ve chosen this record because it reminds me that I have been anything but ordinary fighting this condition over the past year and proven many people people wrong, including medical staff who thought only 2 months ago I wouldn’t make it. Only two weeks ago I was, in fact, being whisked back to the ER and wondering if this was it???? By being anything but ordinary I am coming back and in 15 hours and 40 minutes will be back amongst the living again.

I‘ve added the song to the post. My Husband has just suggested that I use the Eurythamic’s song “When Tomorrow Comes”.

Once again, thank you to everyone for the continued support and encouragement. Please come and say “Hi” if you see me in the corridors, I promise not to bite…….but lets remember some habits are very hard to give up J

I will post form the other side

Until next time

Sarah ©

www.direct.gov.uk/en/.../WorkSchemesAndProgrammes/DG_40003