Snowy Days Sprung on us in Spring….

Mum, here are my legs......

I am surrounded by the “Fam” on a rather unusual day.  Spring entered our calendars and today we find ourselves cut off from the rest of the area due to heavy snow. It is the coldest March day for 25 years. 

It is about 6.30 am and the entire house is up and staring at either the window or PC screen..why you ask? Well, it is the moment we like to call “please let both schools have a snow day or all hell will break loose”. It is like a major technical scenario where both Mark and I balance expectations whilst knowing the inevitable messages will come releasing the children into the white world of sledging, snowballs and screams of delight as they make their way down the side of the Downs.

Once on my own, I sit in my backroom and can see the “Lowry” type figures across the valley hurtling at break neck speeds on their homemade snow vessels. Dark coats against the fields and slopes.  Tearing down only to slowly creep to the summit to start the process all over again. The sun is just breaking through which gives the view a pristine a clean feeling. The seagulls are swooping against the blue and white mimicking the colours of the local football club which is named after them.  In the foreground are my two girls who are frolicking in the garden enjoying their new game in the snow.  Tika can just be seen stomach surfing as she loses her legs beneath the white layers with Roxy above her taking the opportunity to win the race to the ball. 

The Girls in the Spring snow

The doorway is a collide scope of colour as bright orange and green snow boots and coats are thrown aside as they all troop in adding red cheeks to the already colourful room. Hot soup is bubbling on the stove ready to warm hands and stomachs. The older children prefer the more unconventional sandwiches whilst massaging their fingers on the game console handsets.  The day is an endless roundabout of snow clothes on and snow clothes off, hot food, warming of pink hands and ever increasing yawns as the children slowly give into the tiredness that these special days create.

 Night drew in and the melted snow turned to ice creating a lovely crunching sound every time a car went past the house. The world outside the house sparkled each time the headlights hit it. Icicles growing down like old men’s teeth.  It’s lovely to see when you have the background noise of the fire and the warmth of a sofa covered in throws.

This morning normality is back and the children, much to their dismay, have gone back to school, slip sliding all the way on the snow and ice that cover all the surfaces.  It is still early and I am sure the sun will do its job and make their journey home much safer though not necessarily more enjoyable as they love skating all the way to school J

So, apart from snow days how are we?

Things have been somewhat trying the past fortnight and I have been a guest of my second home more times than I would like.  The situation isn’t improving but we just get on with it. The children remain amazing and take everything in their stride.  Psychologically it has become more trying with the endless trips and I am sure this is down to tiredness more than anything else, and that is for all four of us.

The other thing that knocked my confidence last week was the accident I had on my little black scooter.  Some cars owned by inconsiderate people had parked over the pavement meaning that I had to move my scooter towards the road. Unfortunately the scooter slipped down the grass verge tipping me into the road and pinning me underneath it. It was dark, wet and I was stuck in the middle of a busy chicken run. In my ears I could hear Boo screaming in fear whilst all I could do was pray that the cars coming my way would see me on the ground. Some very kind people picked me up and replaced me back on my seat. I then proceeded to motor home with my cuts and bruises all the time hugging Boo who was terribly upset. It is so sad after my excitement last week and the exceptional journey I had made.  I have yet to look at any damage to the little black number but intend to jump back on as soon as the pavements are clear of ice again. Yes, the people were inconsiderate but I can’t blame them as I know that we do not consider the consequences of our actions unless they impact us directly. I am sure they could hop past the wheels of their cars but didn’t think how their cars would effect someone like me ……and that my friends is life J

Still, there is a silver lining, which is we are off to see the “man” who supposedly collects people like me next week. I have vision of me in a specimen jar filled with pickle juice… a bit like the film “the man with two brains”.  Mark and I fully intend to get some answers and plans…it seems that everyone is waiting for his verdict and input. Apart from the usual questions about management and treatment I will be pushing for a mediport, a port that is in the body for intravenous access, as my veins are all shot to pieces now. It does have risks but so does not having an easily accessible emergency line….

Strangely I am looking forward to the 8 hour round trip to see this guy. I is a time that Mark have to chat, laugh and enjoy each other’s company without interruption.  We stop off for lunch on the way and take our time on the motorways. Last time we went the consultant was on holiday……we still managed to cackle like hyenas on the way home at everyone’s indignation on our behalf. I remember it distinctly as it was around Guy Fawkes Night and our journey home was lit up by flashes of brilliance against a really cold and starry night.

Being ill is stressful……..

Those who know my very well will tell you that I alternated between being calm and incredibly stressed. The second emotion is normally within my home environment where I feel I can let my feelings go. Obviously the downside to this is that I am being rather horrible to those I love the most. I remember when Jacob was a toddler and he hurt me in temper one day. I asked the health visitor why he had done this. Her answer was that he hurt me as he knew my love was unconditional regardless of his actions. Maybe that is it…. It still leaves a bitter taste in my mouth that I hurt those closest to me.

Stress can manifest itself in a variety of ways with physical and emotional symptoms.  With this in mind I investigated what I could do to try and limit my outbursts, which are definitely made worse by the amount of steroids I take.  

My constant through the past 3 years has been humour. I have always looked at things slightly differently but having a husband and friends who are the same means that we have created our very own species that chortle at and in the most inappropriate things. Take Resus, for instance. It is probably the most stressful and emergency based environment in the hospital but we sit, chat, laugh and make ourselves at home on a regular basis. We know others in there think we are insensitive but they are probably visiting the area for the first and, fingers crossed, last time in their lives. Whereas we are in there up to 4 times a week….your perceptions and reality change.

During my investigation I came across this page.

How to Reduce Stress During Long-Term Illness

by Cynthia Mascott, LMHC

Although it is very difficult to live with a long-term illness, help is available. Research has shown that stress management techniques can relieve some of the symptoms you may be experiencing while living with a chronic condition.

The mind-body connection is an important part of living with an illness. When Saturday Review editor, Norman Cousins, was recuperating from an illness in the hospital, he became discouraged by his health problems. He decided to heal himself by using laughter. Armed with copies of Candid Camera and Marx Brothers films, he laughed his way to health. In his book, Anatomy of an Illness as Perceived by the Patient, he wrote, "I was greatly elated by the discovery that there is a physiological basis for the ancient theory that laughter is good medicine."

In Herbert Benson�s book, The Relaxation Response, careful attention is given to the connection between learning new stress management techniques and improving your health. He believes that if "you regularly elicit this (relaxation) response, build it into your daily existence, the situations that activate your sympathetic nervous system could be counteracted by a process allowing your body to decrease its sympathetic nervous system activity."

A variety of stress management techniques are now being used to treat chronic illness. These include:

� Meditation: The beauty of practicing meditation is that it allows you to "let go" of every day worries and literally "live in the moment." People who meditate regularly report improvements physically, mentally, and spiritually. To begin a meditation practice, you will need to find a quiet spot, away from the phone, television, friends, family, and other distractions. There are several different ways to meditate. Meditation practices often involve learning chanting, breathing, or mantra techniques. Initially, your mind may wander when you first start meditating. by training your mind to focus on the moment, you will eventually find yourself transformed and feel very peaceful and content. Most experts recommend mediating for about 20 to 30 minutes at a time. Beginners may find it difficult to meditate for this length at first, but don’t despair. It will become easier once you are meditating regularly.

 Acupuncture: Acupuncture has been used as a proven method of medical practice in China for more than 2,500 years. It is just gaining popularity in the United States. It is based on the concept that energy circulates throughout the body by way of specific pathways. Illness results when energy is blocked. Improved health results by stimulating specific energy points with acupuncture needles.

 Yoga: Yoga combines meditation and physical exercise to achieve improved health and sense of well-being. Yoga has been practiced in India for over 5,000 years. Yoga involves repeating movements that can help improve strength and flexibility as well as promote mental and physical health and greater self-understanding. The movements are very graceful and have spiritual significance. Paying careful attention to breathing is also part of practicing yoga.

 Guided Imagery: Guided Imagery is a wonderful stress reduction tool which uses "visualization" and "mental imagery" techniques to improve health. It has been used effectively for cancer patients who literally imagine themselves without the cancerous cells. Other creative visualization techniques include transporting the individual to a quiet place in their mind (perhaps a favorite lake, river, or forest). You can either create your own special place or listen to a guided imagery tape or CD. According to the Guided Imagery Resource Center, guided imagery can "reduce blood pressure, lower cholesterol and glucose levels in the blood and heighten short-term immune cell activity."

As our understanding of the mind-body connection expands, more and more people are taking advantage of these wonderful techniques.

One of my Angels

I also find that taking some control helps.  I do this , bizarrely, through controlling my diet…Mark and kids are troopers eating my concoctions with a smile and  “that was nice mum”  comments when I  know they would much rather be tucking into a burger.  Once again my family accommodates my erratic behavior. I love them to bits and wouldn’t know what to do without them.  I also have some very, very special friends who support me, wipe my nose on their shoulders when I snot cry and ferry me and mine everywhere….they understand how stressful my world gets but have the courage to knock me back with honest comments and wagging fingers when I become to much….

My other Angel

What next?

Well, I have a rather spiffing dress  and extraordinarily high shoes that I want to air, so I think today I may concentrate of dragging “The Angels” out for a belated birthday bash. I need to find a venue that caters for us all. We need a venue that caters for the more mature, not behavior, woman that has a dance floor, bar, certain level of clientele, and access for a spot of rather distinguished wheelchair dancing…..is there such a place???? Answers on a postcard please.

So that is where we are at…..the sun has resurfaced while I have been typing. My girls have snuck up beside me and that lovely peaceful, warm feeling has taken over the house. I am off to start reading a couple of books that I have been patiently waiting for (Hilary Mantel – Wolfhall and Bring up the bodies – thanks for the heads up Jools)

Until next time my friends when I will hopefully have more of an update for you

 Carpe Diem 

The Feeder with her Fanfare of Fairy Cakes

Me, the dog and a kid named Boo

It was pointed out to me today that I hadn’t posted for a while. I know that it has been a bit sparse in 2013 so as today we reached March I thought I would put thought to paper and update you all on what has been happening in the world of the Hills……
This month has been a rollercoaster of ups and downs. Sitting here on the sofa in the lamplight as the night draws in I know I look I happy and comfortable.. But I am fully aware that at any time I could be removed from my warm snugness into the cold, fast moving other side of my life which is lit by harsh lighting and painful procedures. It is like my life is a coin that can be thrown up into the air and fate decided on any given day which side the coin will fall.
Don’t get me wrong my days are still driven by humour…..laughing with the paramedics whilst they steal my tattoo plasters, kindly donated by Wilma, for the own children to sitting in the naughty corner of the local slimming class giggling with my fellow conspirators, acting like children. It is this sort of thing that gets me through the darker times, knowing that out of the slide down there is a movement upwards towards happier moments, and if I cant make it on my own I know that I have people who will throw down a rope, Hell! they would throw down their hair, to help ascend the other side.

The other thing I have noticed is the need for a focus. I know that even from childhood if I have made up my mind to do something I will focus until I have achieved it. One of the things that has effected me the most since falling ill is my lack of independence. It is extremely frustrating to have to rely on everyone to get you out of the house and you often morning to regain some independence by getting my little black mobility scooter out and use it to get home from the not so local hospital to my home. It was a cold grey day and the rain had just started to fall. the fine rain that sits on your coat like a  mist that shrouds you into an almost secret world as you move along the street. I made it down to the seafront and the bite of the cold started to hit. Making my way along the promenade I made time to look at the old pier standing alone and grey out in the sea, a sad old relative to the flash cheaper version further along the road. Moving past the meeting place café I realised that I could now arrange to meet my friends here rather than ask for them to deliver me. Joggers and cyclists moved past me deep in thought missing the wonderful Peace Statue and Queen Victoria, whose dignity has once again been restored thanks to the removal of the old blue pants from her head.
Up through the shopping streets I meandered in and out of local shops, taking my time. It is easy to take time on the scooter as everyone seems to think it is invisible and therefore don’t see it until they are sitting in your lap.
It took me two hours before I reached my front door and by that time I couldn’t feel my toes or fingers but I had the biggest grin on my face…I had done it!!!! I had, on my own without help, managed a long trek and enjoyed every wet cold minute. To herald my return the sun decided to shine on me for the last five minutes which made my grin even bigger.
　
I have found another focus in the past few months and it is
Basically BAKING !!!!
I seem to have, quite late in life, found that I enjoy baking. I’m not very good at it but get a sense of calm and achievement when baking a cake. I have now been called a “feeder” in the office and have looks of disappointment from my colleagues if I do not enter the office with a chocolate cake under my arm.
Don’t get me wrong I am no Delia Smith and use every time and energy saving electric gadget I can get my hands on. I am totally in love with my cake mixer and can often be seen patting it as I toddle past.
Every weekend I set myself the task of baking something new and challenging myself to be confident enough to come slightly of recipe to make something original. The irony is that I am not allowed to eat the cakes I make. DOH!!!
So what has my baking got to do with how I manage my condition…I set my self challenges in my everyday life to get me by and enhance the quality of my life. If you have followed my Blog for sometime you know have lost that drive over a period of time. My latest challenge is to find the feisty old Sarah and reintroduce her to the world. I am sure that I will have company who will be fishing in the wardrobes for their killer heels to join me.
　
Below are some points to consider if you are considering a goal or challenge to help you focus your way through what can be challenging times.
Working Toward GoalsPeople in recovery offer the following suggestions:
Focus on your strengths.
Focus on solving problems.
Focus on the future instead of reviewing hurts from the past.
Focus on your life instead of your illness.
As you work on your recovery, you might want to write down some of your main goals. These goals can be short-term and easily achievable, or you can start identifying bigger, more long-term goals that you want to work your way towards. It's helpful to think of small steps to take toward them over a certain amount of time, like a week or a month. Remember to congratulate yourself for any successes. Achieving goals - even small ones - is a sign of hope and accomplishment.
Developing goals for recovery can be tricky, especially if you aren't sure what it is that you want to accomplish. Consider your interests, things that bring you joy and things that keep you motivated. Also, think about the things you want, like where you want your life to go or what you would do more of if you could. Having a deep investment in the goals that you set will increase the chances of completing them. Once you have set goals for yourself, you need to figure out what things are necessary to accomplish those goals. Be clear about why you set this goal and how your life will be different once this goal is achieved. You should also consider the strengths and skills that you possess that will help you achieve your goal. Try to involve necessary support systems and resources that can help you through the process if and when you need it. Finally, remember to stay focused on the goal and not on the difficulties you might be having. Keep an open mind, and know that you may hit barriers along the way. Recovery is no easy task, and focusing on the negative experiences will only make things harder.

Part of the gang

Create a journal or scrapbook with pictures and clippings to help maintain your goals. Keeping a journal or scrapbook is a good way to track your goals and remind you of the things you've accomplished and the things you still plan to accomplish. Continue to add new goals as they come up. Recovery is a constant process and continuing to set goals for yourself will keep you motivated to reach and maintain wellness.



Grimesy doing her stuff



Last week I turned 45.…..yes!!! 45. I spent the morning cheering on friends in the Brighton half marathon. It was an absolutely beautiful morning and Me, Mark, Boo and Tika went down to the front to cheer on those who were by that point suffering whilst raising money to help others. I want to make a special mention about Catherine Fowler who ran for Vaculitis UK but also Grimesy, Stef, Gayle and Carrie who we cheered on at the top of our voices…



Health up date

We are trying new treatments in the form of upping the amounts. This hasn’t been done before so we have had to approach the medical board for permission and funding. Unfortunately it was knocked back but we are not ones to give up. Prof has more information and we have gone back to the board to see if they will give us the go ahead with our second request. I have seen a variety of consultants and Mark and I are due to see other specialist on March 22^nd. Mark and I will prepare our questions and see what happens.

I am still a frequent flyer in A&E and the fabulous staff greet me like an old friend. Thank goodness they are so kind as it makes it much easier trawling up there…

In a nutshell things are as hectic as always. The house is full of children, football boots, dogs, other people’s children, mud, more football paraphernalia, and the odd paramedic. I wouldn’t have it any other way. I love my home life and the normality it allows me in my unusual world.

so remember, if you see a woman with blonde wild curly hair on a little black mobility scooter, dressed like a little Eskimo, wave as it may be me motoring along at the grand speed of 4 mph and loving every second.

My little black number

Until next time my friends

Sarah xxx

It's snow joke with 4 of them.....

A cold walk on New Year's Day

Wow, where did that time go???? The last time we visited this Blog we were hurtling towards Christmas with anticipation of happy times. If you live in the UK you will know that three things had different ideas. Firstly the weather, it rained over the whole festive period, the Norovirus which put so many people to bed and the flu which seemed to take the rest out.

For the Hills it was a quiet time apart from hospital visits on the most important days but we are used to that.

As I sit here typing the sky is full of snow blending against the seagulls that are swooping up and down. They are surfing the air currents and look like they are hanging in midair. The house is warm and I feel cocooned against the elements outside. Me and the dogs, yes I said dogs as we now have two. I will come onto that later, are snuggled all on the sofa listening to the gulls scream and the fire pushing it’s warmth towards us. I love moments like this. It is one of my picture memory moments that I take with me and fish out of the back pocket when needed. Restful, calm and serene in my world of frenzied activity.

The news this time is mixed. Let’s start with the good news. Well, in my last blog I told you all that I had won an award. A few weeks ago I was informed that I had been nominated through the award for the same category but the national award. The event took place last Thursday and yet again to my complete surprise I won. It’s unbelievable. I am EDF Energy’s B2C Inspiration Award winner of 2012. Crazy…

This came at a really good time as I was in a rather dark place. The HUVs has taken control recently and I have been feeling rather poorly. I have required A&E intervention, with more meds, every 3-4 days. Apart from the actual reactions I am more and more aware of the interruption that Mark and children have to suffer. Especially Jacob, who spends three evenings a week on his own in the house. He doesn’t seem to mind as long as we bring food home with us J

The medics and nurses greet us like friends at the hospital. They even ask where Boo is. She is a bit of a star there and definitely behaves like she owns the place. This is concerning and a relief in equal measures. I am pleased that the medical side doesn’t frighten or worry her but feel sad that she is so used to it she doesn’t react like a child of her age would.

So anyway, I needed to cheer myself up……..over the past year I have been bleating on about wanting a small dog that I can interact with. Well, just after the New Year I saw a little tanned dog on a rescue website that had been at the centre for a few months. After some pleading from me, Boo and my friends Mark finally relented and let me contact the person in charge of the shelter. Within two days Tika had joined our family and the whirlwind that is the Hill household. She is a 9 month old cross Jack Russell and Chihuahua. I call her my “cut and shut” dog. Four weeks later it is like she has been with us for ever. She is best friends with Roxy, who has found the child within, and likes nothing better than splitting her time with you on the sofa snuggling and running riot by play fighting with Roxy around the house. She is a crazy little animal who fits in perfectly.

Who is taking who from a walk?

So where am I healthwise? I have struggled recently both physically and mentally. The physical side is down to my body being really tired. The injections are proving harder and harder as I have to do so many. This is compounded that my flying visits have seen re reactions once in the hospital that require more intravenous medication. This is ok compared to the psychological impacts. These have been harder to quash and forget. I get tired of coping and have been having “why me” days. After a few tears have fallen I ordinarily pull myself together and I am ok for a couple of days. Someone recently warned me that there was a possibility that all the confusion and grief would hit me from behind like a two ton truck. Well, it happened recently. Not that I retired under my duvet for days on end, or that I cried incessantly until there was a pool of tear and tissues at my feet. What happened was I imploded. Shouted at Mark and the children, cried and became aggressive in my speech and general behaviour. I am still not out of the woods but have found the trail of breadcrumbs due to the fact that I have accepted that I can’t do this alone and need a bit of support to help me through this darker time. I have managed the last 2 ½ years with the help of Mark, my family and true friends but there is only so much they can do. I am grieving the old Sarah and the life that she led. I am grieving for the future and the life that I foresaw. I am grieving for the life that may be shortened and I am grieving for all those who grieve alongside me. This all sounds very maudlin but it is a basic fact that if you have a long term incurable condition your psyche has to allow you to clear space to carry on and this is one way of doing it.

There is a very well known piece of work called “The Seven Stages of Grief”. Although written for people and their loved ones facing the prospect of death it can be used for something lost like one’s planned future.

7 STAGES OF GRIEF

1. SHOCK & DENIAL-
You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-
As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.

You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-
Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.

You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair ("I will never drink again if you just bring him back")

4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair.

5. THE UPWARD TURN-
As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.

7. ACCEPTANCE & HOPE-
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.

It is important to take time to reflect the changes and how you have dealt with them. The one constant is time, it is how we ebb and flow within time that allows us to move forward with acceptance and confidence that we can roll with what life throws at us.

So, back to the life of the Hills…..

In the past few weeks the children have had fun with the snow. We had snow on the ground for almost a week and even the children stayed in doors by the end. It was fun while it lasted with the child even in the most pole faced of adults smile and start throwing snowballs whilst ducking behind cars and garden walls.

And the snow began to fall...

We are back to the usual rain and wind with the odd shower of white fluttering down. It is the time of year for layers with the wind blowing making the grey give way to blue and the abandonment of heavier garments only for them to be replaced and back to square one moments later.

Going forward we will have times of disruption with hospital treatments, football tournaments and the general mayhem of school half term holidays.

My scooter will be out for family rides, stopping only for hot chocolate and cakes. The children and dogs will be flying off in all different directions, only to bother returning when hungry, and Mark will stay by my side with a look of resignation knowing that we will be repeating the process all over again a few days later.

Anyway time to sign off again, lunch is calling and I never ignore food…….

Until next time.

Sarah

Snowflakes, Angels, Awards and Reflecting on the True Meaning of Christmas

My lovely silver man for wining gold

Well, here we are again hurtling towards the Festive Season with visions of snowflakes, family smiles and heart warming fire side scenes. In reality we are rushing head first into shops frantically bustling with others fixated on the present that everyone wants. Tempers already frayed by the inevitable car park queues, impatient faces and sore shoulders from the stress of it all.

The thing I love the most are watching the children in the build up to Christmas. Little angels with their wings and halos at strange angles, shepherds with their “tea towel” scarves, rosy cheeks from carol singing in the fresh air and a strong belief in the fact the Christmas is a dual celebration of the nativity with a rather large man in a red and white suit.

This afternoon I am going to wrap up warm, take the chariot and go and watch Boo in her carol concert. To be honest she warbles like an old pub singer but is very enthusiastic. She recently appeared in a big concert with her school choir and 15 other schools. The children not only sang but signed every song. Truly impressive. J

I am lucky to have friends and family who strongly believe in the spirit of Christmas and we ensure it is a special time of year for our nearest and dearest. This year the dates have fallen kindly which means that we are able to enjoy an extra 2 days. What does this mean for the “Hills”? Well, we will roll/walk to the local pub, catch up with friends and take it easy before the real excitement begins.

Before I go any further I must update you on the past few weeks. I think I mentioned a couple of big events that I was attending…well….one was my company’s award ceremony. This was an evening that celebrated the achievements of individuals throughout 2012. It was a brilliant evening topped off by the fact that I won my category. Well I say topped off, nothing could have prepared me for the reaction I received from my colleagues that evening. Before the winner could be announced I heard someone shout my name, this led to something that I will never witness again. The entire room, of over 250 people in evening dress, started to chant my name and all stood up. This lasted for what seemed a very long time when in fact was probably only a couple of minutes. My friends were tearful and I was completely overwhelmed. Then I did the conga up to the stage to collect my rather fetching trophy, of an “Oscar” like man who is naked. It is currently in my lounge and when Boo asks why it has no clothes I tell it is “ART”!

What the room didn’t know was that only 5 minutes before me and two friends were squeezed into a toilet with hypodermic needles frantically trying to inject my legs before the proceedings began.  Luckily one of them reminded to un-tuck my knickers from my evening dress before leaving the room. Surreal times J

I am still confused and amazed at what happened. There is a video of it, so when I get it I shall add it to the blog.

The other events I have not been able to attend due to my current health situation. Only last night I was due to attend the “Sports Personality of the Year Awards” in London and today a Champagne reception on the London Eye, both in recognition of the work I have done this year. Even though I am extremely grateful and disappointed I cannot jeopardise Christmas with the children and Mark. There will be other times. J

As mentioned my health is somewhat compromised at the moment and I have been visiting my friends in the local A&E dept every two days for the past 3 months. In an effort to keep me out for longer periods I have been self medicating with Intramuscular Injections. Painful but necessary. I cannot lie and say that I have handled the situation with my normal humour but I am getting there and it is becoming part of our daily routine.

There are times that you feel there is no light at the end of the tunnel. These days can be dark and the duvet is calling your name instructing you to get under it and stay there. This is the moment that you need to draw on your inner strength, brush yourself down and move forward. I find focussing on a positive thing helps me. For instance planning a family day that I know will make me smile or a Starbucks afternoon with the “girls”. I experienced this recently and had to draw myself up and get back to work. It has definitely helped me. Solitude is nice but can be damaging when on the slippery slope.

As you know I like to add something to my posts. Today’s is a humorous look at the 12 Days of Christmas and how the festive period , both current and historic, have a “pop” at disability… it made me chuckle and is tongue in cheek with a true undertone.

The link is below and from Ouch! It is found on the BBC website.

http://www.bbc.co.uk/ouch/features/12_days_of_disability_christmas.shtml

So what have the big days in store for the “Hills”? Well, we have family days in store. I adore them. They create moments that you make you stand back, take stock and appreciate what you have. As I have found you never know what it is around the corner so when you see you loved ones surrounded by the soft twinkling lights of the Christmas tree, sleepy smiles from over indulgence and that annual moment when everyone loves everyone else. It doesn’t last long but appears every year to remind us of what is important.

This year we have experienced many things and celebrated them as a nation. From the Royal Jubilee, The Olympics and The Paralympics. The feeling of unity was palatable and for once people relaxed and enjoyed each others company. The sun shone for the two weeks and it was lovely.

This year I have also experience heartache watching friends fight their own battles…some continue to wage war and stand side by side on the battle lines with their swords drawn valiantly refusing to be beaten. Their strength is amazing and I am completely in awe of them. Forget Christmas presents.. My Christmas wish is for them to win their fight and be raising a glass to “Auld Lang Syne” with me this time next year. You know who you are and I love you all.

In case I forget in my New Year post there are some very special people that I need to thank for their never ending support over the past 12 months. These people have to endure seeing my underwear several times per week; some have even had to watch my butt being injected in case they have to. This is not something I would encourage anyone to do. They have been there for me when I am down and up, they have befriended the A&E staff with me when they have given up hours and hours of their time to be with me there. They have cried, laughed, shouted, hugged, panicked, calmed, driven for hours for a fleeting visit in hospital and supported me through the entire journey this year. So a massive thank you to Mark, Boo, Jake, Mum, Dad, Jax, Caz, Lisa, Pauline and AnnMarie. I also want to thank Tons who is always there with words of encouragement and little gifts.

Fabulous shoes on my tree......

Right, back to my original paragraph……I hope you all have a fabulous Christmas and amazing New Year. Please take a moment to step back and reflect how precious this time of year is and remember it is “not what is under the tree but those standing around it with you”

Love to you all

Until 2013

Sarah

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