Mrs Potato Head is Out on the Town

Beautiful Boo....erm????

Hey Everyone

It’s amazing…people have been requesting an update on the blog J

Well we have entered November and the sky is filled with whizz, bangs and flashes. The children have only just wiped off their Halloween make up and here they are running from the front to the back of the house to see “the biggest firework they have ever seen!!!!”.

The days have suddenly become shorter and everyone is starting to think of baking and soup. It seems to be annual need to shut the doors to the outside world and start thinking about the next big event. We all that is Christmas, and let’s be honest, that is a completely different post.

So, Halloween was an experience with biscuit baking, pumpkin carving and a very scary looking Boo. Thanks to Amy for the wonderful make up……I thought the scar prosthetics were a particularly nice touch. As for the “eyeball biscuits” I made, well they were all eaten so must have been ok. I would like to apologise to all the parents whose children partook for the sugar rush that I know will have hit 2 hours later J

I have been to my first Murder Mystery Night, it was brilliant. We somehow won, I still do not know how ?!?!?!?! The cast were really funny, the company was great (Caz)  and the food lovely. A perfect evening.  Guido was definitely more Rick Mayall from Black Adder than Guy Fawkes…Hurrah and Woof!!!!!

In a few weeks I have a big night out. It is my Company’s annual award ceremony. There is lots of talk about dresses and accessories. Shock of all shocks….I am not shoe shopping…I know, unbelievable isn’t it. Don’t worry, I haven’t lost my passion, I just have a pair of gorgeous winkle pickers already sparkling in my wardrobe. Boo has already claimed them for when she grows up. Like all my shoes apparently???!!!?

I can’t wait for the evening as it means that I get to catch up with people I haven’t seen for a while. This is always interesting as it may be the first time that some of them have seen me in the “Chariot” and with the additional “Cushings syndrome”. Think of Mrs Potato Head from Toy Story in a rather fetching outfit…well that’s me. On the upside there is no requirement for a handbag as I can keep all my things in my back. I promise to take lots of photos.

I want to take this opportunity to thank Catherine who is fantastically running in an 8K race for Vasculitis UK next weekend. She wanted to make a difference…Well I think a well deserved WOW is in order!!!! Rain or shine, Boo and I will be there with a banner cheering her on. Another act of selfless kindness which people have shown. I am humbled each day by people’s actions and support.

I also would like to take a moment to acknowledge some close friends that are going through their own challenges. Keep strong my darlings and know that we are thinking of you xxxx

Another mention is for the paramedics and the staff at the local A&E. I enter their world every 2-4 days at the moment. They are so welcoming and friendly that any embarrassment soon dissolves away. I am in awe of them all. I expect to be on their “Secret Santa” list because I am there so often. Amazing people!!!

I have embarked on some new ink designs and though I know they are not everyone’s cup of tea, I am really pleased with them. It was just another thing to cross off of my bucket list. The list isn’t very long so if you have some exciting ideas that I can do with my limitation please let me know.

One of them is to transform my wheelchair into a sledge so I can enjoy the snow with Mark and the children, any budding designer buffs out there? I have Roxy to pull me. I can see it now, the image of a funny looking potato head squealing her lungs off, as she leaves everyone in her wake on their bottoms covered in flying snow….perfect!

I am due to see another super duper consultant this week. He is going to wave his magic stethoscope over my head and fix me…ok, so that’s not going to happen. But we are seeing a consultant to get and extra opinion on my treatment and medication. Mark and I will, like usual, enter with no expectations. That way disappointment is less of a likelihood. Just hope that I do not see a Dougie Hauzer wannabe, who looks 12 years old and whose Mum ironed his shirt that morning. I sound a bit harsh but this is a make or break appointment. Such a long time on the road may shorten my fuse somewhat J

The fact that the appointment is an 8 hour round trip means that strict planning is required. Meds, emergency paperwork, list of local hospitals on route, chargers, blah, blah, blah…and so the list goes on. Knowing our luck we will forget the chariot and Mark will have to carry me on his back, well he is Uber fit now J

This is also now needed for any trips out of my town’s boundaries. It is one of the many things that someone, like me, with a serious or chronic condition has to think about.

Things have been very hectic in the “Hill” household with me constantly hitching a ride in the big yellow van. Luckily I have a “personal protocol plan” with the Ambulance service that allows medication to be administered at home. This means that I only have to be monitored. As an expert patient I am very lucky to be able to advise the Doctors when I am able to go home…I have it to under 2 hours Yippee!!!!

For anyone who has a chronic health condition that requires emergency help I would suggest hat you look into a Paramedic Plan as it makes life much easier for you and the services. It takes a bit of persistence but it is definitely worth it.

Things have taken a slightly different turn in our house. Jacob is taking his role of an obnoxious teenager very seriously and continually swapping between grunting at us and not talking at all except for asking for food…..and boy, can he eat!

Boo on the other hand is like a radio. Continually talking, not stopping for breath, and twittering like a little bird of paradise. Between them I feel like I am on the set of Sesame Street….She will be 9 next week. I can’t believe that my baby is growing up so fast. Long gone are the teddies and soft toys, we are now on to make up, crafts and music. I am even at the point of using her make up and perfume. Ridiculous!

Both of them have had so much to deal with this year. I am immensely proud of them.

Mark is turning into the next Bradley Wiggins. He is now a keen cyclist and managing to achieve, on average, about 35 miles per ride!!! He looks so different…..especially in his cycling gear. J He is like the man I married over 17 years ago…my goodness is it really that long, boy do I feel old!

He continues to be my rock. He calmly holds me when I “snot cry” (those who have seen know it is not pretty J ), is my voice of reason and to be honest my soul mate. Quite a slushy comment I know but sometimes you just have to say it out loud

  

A while back I posted the “Spoon Theory”. This is a fantastic view of what it is like to have to pre-plan your days just to ensure that you get through them. Sometimes the need to prove yourself is overwhelming. It is almost a form of denial. “this illness hasn’t changed me”..” I can still do everything I did before”…”Of course I will be there”…STOP!!! THINK!!! We have all been guilty of taking on things that we probably shouldn’t but with a chronic/severe condition it can prove very costly. So don’t worry about turning down a friend’s invitation, if they are a true friend they will understand or even suggest an alternative solution. If you want to frown or look unhappy, do so. You the right to be a bit fed up. People need to know when you are not on tip top form. This way they can support you. It has taken me a long time to remove the façade that I created. I used to say that things like “I’m fine” or “it could be worse” when, in fact, I was far from fine and things couldn’t get any worse. Being truthful means I now have more “spoons” and get to enjoy life more.

  

Below is a blog post by Nicoletta Skoufalos regarding how to balance festivities and a chronic illness. Her subject matter is about Christmas but to be honest it is relevant for anytime of the year when you have celebrations.

Jingle Bell or Holiday Hell? Part 2: Balancing Act

Holiday cheer, Christmas songs, gingerbread cookies, eggnog, and carolers oh so nice; shopping mayhem, endless baking, non-stop Christmas songs, want to break that CD player, the tenth holiday party of the week, out of town visitors, shows and pageants...when can I get some sleep?

The holiday time is certainly a test of how well people can pace themselves and of managing an overload of expectations. Yes EXPECTATIONS...not responsibilities. During the holiday season, it is easy to confuse expectations with responsibilities. Oftentimes, people experience certain events as things that they must do lest they let down their loved ones. However, when one really thinks about it, is the holiday season really any different from the rest of the year? It is true that there can be many fun and exciting events during the holiday time, but exciting and fun can quickly turn to burdensome or overwhelming if not properly managed.

The holiday season balancing act is something that most people in the western world experience every year; however, this balancing act can be especially challenging for people who live with chronic physical illness. Although most people need to figure out how to manage the numerous holiday parties and events of the year, some people with certain illnesses need to pay even more attention to the amount of rest that they are getting, how much physical activity can be tolerated, and what level of stress is appropriate. The responsibility of balancing one's activities and health makes it very apparent to some people with chronic illness, that their illness is a reality and it can serve as a reminder of some of their limitations or life adjustments. This realization can cause some to experience various feelings such as sadness, anger, frustration, denial, or helplessness, at a time where society sets an expectation of joy and cheer. Sometimes these unpleasant feelings may result in some people with chronic illness wanting to engage in as many holiday activities as possible in an effort to will away the reality of their condition, which can follow with a worsening of one's health. On the other hand, just because a person lives with chronic physical illness does not mean that he or she is banned from participating in holiday activities all together. This is another extreme that can follow from people's loved ones' fears and concerns about the person with the illness, or from the person with the illness him or herself becoming depressed and hopeless, and believing that living with an illness means having a poor quality of life.

The key is balance...no different from folks who do not have a chronic condition. Sure, mastering the correct balance for yourself may be trickier than the balancing act of a person without a chronic illness; however it is completely possible. An important thing to keep in mind is that the holiday season is a time for fun, love, and joy. It is easy for these things to be forgotten as the societal message is one of "musts," making the distinction between expectation and responsibility difficult. Attending a million holiday events is nobody's responsibility but it may be expected by some folks in your life. Do not forget that it is ok to not meet everyone's expectations for what you can or cannot do during the holidays. What will happen if you pass on some holiday events for the benefit of yourself? Nothing other than feeling physically good, probably emotionally good, and able to partake in your actually responsibilities. So you balance: you choose what holiday events are really important to you and you take part in them, and the one's that are not on the top of your list you pass on. If anyone else is bothered by this then it is their problem to deal with as it was their expectation that led to their own disappointment, and this is something that you can communicate to them.

The holiday season can at times leave people feeling a bit helpless. Get empowered! Stand up for yourself and your needs, and communicate them when you are not feeling understood. BALANCE YOURSELF!

Happy Holidays!

Posted by Nicoletta Skoufalos, Ph.D. at 7:19 AM

So, what is next for us? Well, after the awards ceremony it will be a very speedy dive into all that is Christmas. From, screaming at the children and Roxy to keep away from the tree, to the many social activities throughout December.

I have so much to look forward to over the next two months.  Boo’s birthday, award ceremony, meals out with friends, Christmas casino night, Boo’s carol concerts and many more things. The list is long.... This year I consider myself to be extremely lucky.

Health wise, well that is a different matter. I shall ensure that there is always a sparkling outfit with beautiful high heels in the car. This is to ensure that if I am in the emergency room and leave in time to attend a Christmas party I will have my supplies. HUVs hasn’t stopped me enjoying life so far and it won’t stop me having fun now J

That is about it for now….

See you on the other side of November……

Until then, big love to you all

Sarah xxxx

Two Years, True Colours and Few Regrets

Happy then, happy now.......

Well 731 days have passed since my life changed.

Today I celebrate the second anniversary of when I fell ill and the new Sarah Hill emerged from a normal existence to a crazy, funny and sometimes hair raising world.

I use the word celebrate as this is what I want to do. It may seem confusing why someone would want to commemorate the occasion but I truly believe that the past two years have left me a better person.

During this time I have laughed, cried, day dreamed, argued, loved, been loved, accepted, fought, been extremely stubborn and most of all been surrounded by people who have walked, carried and held me through the good and bad times.

I have learnt what and who is important and what to ignore. It is amazing how quickly true colours are shown. Those you thought would always be there for you seem to fade away into the mist whilst others stand firm at your side taking to arms and fight in your corner no matter how hard the battle becomes. They understand when you are tired and cannot lead from the front and stand back again once you have regained your strength and want to fight again.

“Why Me?” days are few and far between but they do happen. A good cry and scream is extremely therapeutic. I love the thought of it being cathartic. A bit like the phoenix…fire burning then a new start. It is a fresh time to focus on new things and experiences. The “why me?” days have been colourful especially the hurling of tomato ketchup – it looked like a blood bath in my kitchen against the white walls. The film “The Shining” comes to mind…..

I have learnt a lot since falling poorly. Before I rushed at everything at 100 mph, believing I was living life to the fullest when in fact I was a passenger watching my life fly past me without taking the time to breathe in the experiences. By having to slow down I now can taste the moments and appreciate them. I stop to admire a view or breathe in the smell of the fields being harvested. I take time to watch my children, unbeknown to them, to allow myself to recognise the people they are becoming. I am immensely proud of my children, for the way they have risen to every occasion and the wonderful individuals they have become. They have seen things that children of their age shouldn’t and at times had the World’s weight on their shoulders like mini Atlas’. I know that every time I return after an extended absence there are two massive hugs waiting for me on the doorstep…… who could ask for a better return?

It is very important to me that no matter where my journey ends I do not have any regrets. I do not want to look back and say “if only I had…..”   My life has taken on a different spin. I live for the day. My mantra is “Carpe Diem” and tattooed on my wrist as a constant reminder that I should grab as much as I can from the here and now and not wait for tomorrow. I fight a silent foe everyday and know that by living my life to the fullest, I keep it caged up under lock and key. I no longer seek approval from others before making decisions. I feel free.

I have been very lucky to have a new lease of life. Probably because I have life……  It is not until you have investigated your own mortality that you really appreciate what you have.  

So what is the next year going to bring?        

Well, in the immediate future I will continue to in the same vein. Continue to wheelchair dance with my Angels, buy totally inappropriate shoes in fabulous colours, laugh until my face hurts, cry until I can no longer feel my nose, love my family and friends with a passion, believe in the work I do and fight HUVs with all my might.

In the long term, who knows?  I want to make a difference. I want my fight to mean something. I want to achieve something that in years to come I can look back and say “I did that”. A project, if you like…..like my Blog J

For now my project is me. My goal is to be stable enough to be able to stay out of the big white building with it’s blue clad staff. To enjoy the Autumnal festivities and partake in the outdoors whilst watching Mother Nature put on the most beautiful display of colours and textures. Take my children to collect conkers, walk Roxy along the promenade on a crisp Sunday morning stopping for hot chocolate, enjoy my family’s company at the Bonfire parade and plan all the Christmas shenanigans with my nearest and dearest.

Last year will be hard to beat but I think we can do it.

I want to thank each and everyone of you who have been on this journey with me. I want to say how much I appreciate that you read my inane ramblings. I couldn’t do what I do without your constant support and help. The sat nav for our trip has malfunctioned at times but with a bit of luck the roads will now be clear, straight and easy to navigate.

Well here we are…..

HAPPY SECOND ANNIVERSARY xxxx 

I am off to celebrate through a spot of retail therapy and a large lunch. I will use the time to acknowledge how lucky I am and to never, never take anything I have for granted.

Until we meet in Year 3……

Love

Sarah

                                                                                            

Side Stepping Side Effects with a Side Salad

Bloat with Jake and Boo in one of the first photos together in 2 years x

Well here we are another month has zoomed by. We had been expecting warm temperatures, children squealing in the garden splashing in the pool and long leisurely walks with the promise of a nice cold beverage at the end of it. But no….we have had grey skies, wellies, jumpers and running in between the rain drops.

The school holidays are half way through. The Olympics have come and gone with a fanfare and we are on count down to the Paralympics. The national spirit is high and for once we seem as a nation should be…

Over the past two years I have spoken of illnesses, coping tools, information to get you through the day and many other things. Today I want to touch on a subject that is somewhat forgotten when it comes to a long term illness. This will be the physical and psychological impacts from the side effects of medication.

Side Stepping the Side Effects

When first given strong drugs to control a condition or illness you are just thankful that the pharmacist has something in his cupboard that will help you. A bit like the mad scientist with all his bubbling jars and potions. Furrowing around in the gloom until there is a light as he lifts the magic pills and hands over to your grateful hands.

For a time all is well in the land of medicines but like any decent story there is always a consequence when accepting something without reading the small print…yep you’ve guessed it! In that tiny writing you will find the side effects.

Most people are lucky to take medication and the only effect they have is to get better. Unfortunately there are certain drugs that have the power not only to help you but to change your entire body. As days roll into weeks you can see that you are changing but powerless to stop it. Can you side step it? No, I am afraid the simple answer is if you need the drugs then you have to put up with what they bring with them.

You an always try and minimise some of the effects by eating healthily and exercising. A lot of steroid medication can cause weight gain which can bring it’s own problems.  I carry a warning to all my friends not to stand still when close to me as I may chomp on their arms as my hunger takes over.

Side Salads

Being serious for a moment, I was told that my steroid intake each day I should of expected to gain approx 4 ½ stone over a 2 month period. This was not going to happen in a month of Sundays. I was determined that I would have control over at least one part of this rather inconvenient news. So Wilma dragged me to a Slimming World group run by the lovely Lucy. I have learnt to enjoy my side salads and health foods. In fact it has infiltrated my psyche and now I am unable to revert back to my old habits for anything longer than 24 hours. It has taken time but I have lost over a stone and not gained the equivalent of a ten year old child….What I am trying to say that it is important to realise you can make a difference on certain aspects of medication side effects.

Unfortunately I am unable to stop some of my side effects. Some are funny, like when I was trying to present an idea to a colleague after having some shots…..I still say I didn’t swear or dribble J Or when my hands and feet, yep all 4, decided to cramp at the same time as I was eating a yoghurt. If you can imagine a woman throwing frantic moves around her lounge whilst redecorating both children, the dog and walls with a banana flavoured yoghurt….needless to say I also had to put up with the constant snorting all night as my motley crew kept replaying the whole situation.

But others are not at all amusing and have at times really effected my health and self esteem. The above story shows the funny side of cramps but I am now no longer able to hold cutlery or a pen for more than a few minutes or the fact I get cramp in my feet but can’t get my shoes off as they have swollen I need to employ Mr Universe to prize my once slender toes out of their vice.

If your physical appearance changes it can be difficult for those around you to understand and accept. I have changed to the point that sometimes I do not recognise myself. Only 9 months ago I had a works ID photo taken. It looks like someone else has rolled up and had their photo taken for me. I now have been diagnosed with Cushing ’s syndrome that is a direct result of the amount of steroids that I take. It effects your face, body, skin, eyes, organs and legs. My friends have christened me Bloat from the NEMO movie…me being me I laugh as this how I am but for others it can be soul destroying. Only yesterday I heard that a cousin had seen me recently and had returned home so shocked that she is still talking about my physical changes. It is important to take time out, look at yourself and consider how you actually feel. The changes will not just be physical but psychological as well. Imagine one week you look like you and then suddenly your hair, face and body image is something totally different. It can be a shock and it will take time to adjust. I am only now allowing photos to be taken of me and this is because I realised that two years of memories of the Hill’s wasn’t being captured due to the concerns of how I looked….that really wasn’t a good enough excuse not to record my children growing up alongside me. I am beautiful to them no matter what and to be honest that is good enough for me.

The thing is that it is up to you on how you deal with what is going on. Below is an extract from the website About Cushing’s. As you can see they offer very simple but effective advice. I like the fact they tell you to put yourself first, we all forget to do this…

Always put yourself first

 The most important thing you can do is to make sure that you put yourself first. It’s not easy, but keep Cushing’s disease from changing who you are by remembering that it causes an imbalance in your body chemistry.

Tips That Can Help You Minimize The Impact Of Cushing's Disease On Your Life
Write a list of things or situations that have become upsetting since you have had Cushing's disease	·       Think of ways to limit the effect of each thing or situation in your life. Decide which of these you can learn to deal with and which should be avoided
Think of the things that give you pleasure and be sure to focus on them.	·       Make time in your life to enjoy these things ·       Try to find ways of incorporating them into other situations
Take action to regain a sense of control	·       Taking care of your body leads to physical benefits and helps empower you to feel that you can do something about your situation o      Exercising or taking up a physical activity can promote weight loss and cardiovascular health, and can become a social outlet when done with a group o      Eating healthy and taking certain vitamin supplements can help prevent some complications ·       Learn as much as you can about Cushing's disease to help you feel like you are in a better position to make informed decisions
Be patient with yourself and others	·       You don't have to let Cushing's disease take over ·       your life, but you have to remember that it affects ·       you. Try not to get down on yourself and let others ·       know when you could use an emotional boost o    Let people know how Cushing's disease affects you o    physically and emotionally so that they can better o   understand what you are going through

This blog is called Side Stepping Side Effects with a Side Salad. You can try and manage some of them but at some point you will be trying to side step so often you will look like a crab. To be honest it is a waste of your energy and good shoe leather.

If you are on medication that is going to change your appearance you have to make a choice. Fight an endless fight and in turn end up like Don Quixote shouting at windmills or, like me, accept those who love you would never judge you by how you look and for those who do? As my favourite saying goes “kick them to the kerb”. You are worth more !!!!

Well, talking of changes I am off to prepare for Jacob’s 13^th birthday. So much for side salads. Cakes, burgers, wild western restaurants and plenty of fun is on the menu, I just hope it is in grunt so he can read it. I can’t believe that my first child is going to be a teenager. Where is that beautiful baby, which screamed all day, demanded 100% of my attention and cost a fortune? Oh hold on!!!  He is in front of me doing the exactly that…some things remain constant regardless of passing time.

It makes me realise how quickly time has been lost to HUVS. Our days have flown but I think that is because we value every one of them. This leads me on to my next post. It will be two years since falling ill and I will be retracing my steps, reflecting how things have changed and what “the Hills” intend to do over the next 2 years J All I know is that it will be busy, full of laughter, rewarding and better than the previous 44 years.

So until next time….enjoy what is left of the summer, scream at your countries team in the Paralympics, and seize every day…CAPE DIEM x

Sarah…

Decisions, No Collisions and Dancing like Michael Jackson

Throwing a few moves in the Chariot

Almost a month has past and what a month it has been.  I haven’t been this busy since falling ill and absolutely loved every minute of it…..

It started off with a trip to London where amongst other brilliant things I had an epiphany that I honestly believe may have changed my life. A dramatic comment but park your initial thoughts until you have read why.

I attended a session in which Baroness Tani Grey-Thompson spoke to the attendees about her life, her childhood and how she became the champion we recognise. She blew me away, how she has faced everything head on, with guts, determination and laughter.  Four days later I was sitting watching my Caz, my cousin, throwing a few shapes on the dance floor and made a spur of the moment decision and in a flash my hands grabbed the wheelchair break, reverse the chariot and suddenly I was in the middle of the dance floor facing Caz’s legs. Well, that was it…Madonna eat your heart out, this old bird can also bring it on. I even managed a moonwalk. It was an emotional but liberating moment and I honestly put it down to the fabulous lady from the week before.

On to my second moment; ever heard of the charity Whizz-Kidz???? It was set up to help children and young adults to get wheelchairs that are specific to their needs rather than using the generic chairs offered by the NHS. It’s like being given a pair of shoes that do not fit. They start to hurt and you won’t wear them. They now take it much further and support the young adults through the life journey of education into employment…this where I came in. I was asked to present to a group of 20 graduates. It went really well and I have euphoric ever since. They are amazing young people with degrees ranging from Law to Equine Studies….I felt humbled in their presence….so why did it effect me so much? I pushed me into making a decision that I have been toying with for a few months. Wait for it………some of you know that I have a teaching qualification in Classical Ballet but obviously cannot use it now so thought I would move into teaching dance to disabled children and adults. Every little girl deserves to be a swan, angel or sugar plum fairy regardless of illness or disability. Euphoria has turned into excitement and expectation.

The Hill household has been wrapped up in the end of school year carnival…the weather has been abysmal but there has always a silver lining, like when they parked the chariot next to the school fair hot dog stand. I may have been wet but a couple of “dawgs” always make you feel better.  We have been to-ing and fro-ing, between the rain drops, to sports days, discos, shows and tournaments. Both the children are now playing football so the house is full of kits and boots. Boo thinks we live in the film Bend it Like Beckham, I am sure Mark would love to have Keira Knightly living with us….As for me, I have been using the chair a lot more and it has definitely helped with my strength and being outdoors. I even managed the scrum of the NEXT sale and let’s be honest, that is not for the faint hearted. Jax wheeled me in and out of the front line of shoppers like a forward on the rugby field as I whisked things off of the rails with breakneck speed. What a team!!!!!

People are slowly getting used to seeing me in the chair at work and I am able to manage my day more effectively knowing that I am not as tired and able to travel at the same speed as everyone else. Brilliant, though yet to master the “wheelie” J

I read a post on a website today where someone else has to accept using a wheelchair and feeling very low at the prospect. It is difficult when first having to plant your bum in the four wheeled steed and you are defensive, grouchy and rude to those around you.

I tried looking for an article that had some tips on your first few trips out but came across the link below. It is the top ten tips on how to talk to someone in a wheelchair…. How funny!!!!… I have just caught my breath back from laughing. Anyone requiring an actual self help piece on how to talk to a disabled person requires more than self help….I am still chuckling….

Check it out -  www.wikihow.com › Home › Categories › Health › Disability Issues

Healthwise I am hanging in there. Still waiting for treatment news and getting more pricks than the proverbial dart board. We know that treatment will be available at some point so remain positive. I still look like a beach ball, though in my mind I look like a volley beach ball player J

The waiting game can be frustrating and try not to keep checking my e-mails to see if there is any news. All the time we wait I have to have more steroid injections. I am wondering if Health and Safety at work have any strong string as I am soon going to be floating like the toad balloon in Shrek the Movie….I need to be weighted down. The effects of steroids can be crippling and they definitely change how you look but my silver lining, there is always one!, is that I can now sleep wherever I want due to the cushion of fat at the back of my neck……very comfortable and you tend not to dribble when your head is back…see another bonus J

The HUVS is strong and it can sometimes catch me out but I have an excellent support network. From the taxi drivers who pick me up each day to the wonderful Annmarie and Lucy who trundle me up the slope and into work. My lovely colleagues keep me laughing until home time has snuck up once again. My friends and family are amazing. Someone asked me the other day how my illness has effected me and I answered honestly. I know that I should say it is awful and has ruined my life but that just isn’t the case, I actually feel my life is more enriched than before. Those around me are true friends, I do not get stuck on unimportant things, I take time to appreciate certain moments, tried new food, decorated my skin with my journey, taken chances by working on something I strongly believe in, going to teach dance for the first time over 15 years and most of all LAUGH MORE… life is actually quite great!

I suppose what I am trying to say is, illness or no illness there is always something positive to be found, I know and prove that each day!!!

Anyway peeps, check out Whizz-kidz, they are amazing you can find them on   

www.whizz-kidz.org.uk

and definitely read the etiquette article because that is just plan bonkers!

Until next time my fellow HUVs followers…….

Love

Sarah