Roadtrips, Resus and Rollerbooting

The Hills

Here we are the day before Good Friday, the sun is shining through freezing temperatures, giving a warm glow for those on the way to work. Their footsteps, that much lighter knowing that they are on the countdown to an extra long weekend, courtesy of Easter.

The children’s tired crumpled faces that have appeared the past few weeks will soon be a thing of the past as the later mornings start to appear and the fresh air from parks and outdoor activities take effect.

I am in the office surrounded by chocolate Easter eggs. Staff are winning the biggest eggs and discussing which ones are best. It’s torture!!!! I am not allowed the wonderful, melt in your mouth, miracle that can take away all your problems away whilst the taste lasts. Still, at least my waistline won’t be screaming at me for neglect, though with all the other food dished up over this holiday I am sure it won’t be very happy.

So what have the “Hills” been up to the past weeks?

Mark and I entered on to our roadtrip up to Norwich to see the great “Oz”. The consultant isn’t actually called that but the build up was like we were going to see the most important person living. Which I suppose in my case he probably is.  

I love my roadtrips with Mark. It gives a few hours to chat, laugh and sit in silence without interruptions. Since the children came along days like this are few and far between. Norwich is an 8 hour round trip which so perfect for us to reconnect.

The appointment was long, which is better than last time when the great “Oz” was on holiday. We are now going over old ground with the threat of new diagnoses. Times like this can be frightening but to be honest I think Mark and I are to the point that nothing can shock us anymore. We sat there being told that I will be ill for a very long time and that it is going to be a long journey with smiles stuck to our faces, nodding our heads to show we understood and brows slightly askew, thinking of the next question of the back of the news we had digested. We are the epitome of the image of swans……appear in control and calm from the top but if you take the time to look underneath the water you will see our feet desperately paddling trying to keep us afloat.

The appointment has generated new tests and treatments which should start in the next fortnight. I won’t lie and say it will be pain free or plain sailing but we are used to bumpy waters and a few bits of discomfort lead will, hopefully, lead to a better quality of life which is the most important thing for all of us.

The children are well and looking forward to gorging themselves on the offerings they will get over the next few days. They are both growing up so quickly. Jacob is now taller than me and on his way to being a young man. He can make a challenging argument and is starting to negotiate to get his own way. Between his activities and seeing his friends, I hardly see him. He is amazing. I can hardly connect the screaming toddler who pushed my patience from the time he woke to the time I put back in his cot. Don’t get me wrong, he is still a challenge but with the normal teenage grunts, hair flicks and language I am still trying to understand. We are so similar, I often see Mark rolling his eyes when we argue trying to decipher who is the bigger child, me or Jake.

Boo is still “off of the wall” with her zany look on life and even zanier fashion sense. She has the ability to make us laugh without understanding how or why. Her resilience is astounding. She has witnessed things that even adults shouldn’t but bounces it off with humour and strength. Because she is too young to leave on her own she accompanies us to Resus. She sits on the side of my bed chatting with the nurses on doctors as though she works there. On a recent trip the HSO said Boo should become a doctor to which Boo replied quite adamantly that she was going to be a “Roller Booting Instructor” but would consider medicine if she could stay in her role boots. We said that her idea may speed up things. J

On a serious note things for the family have been extremely difficult the past couple of months. The rollercoaster effect has shown itself so we are due for a steep downward bank that will see us screaming with terror and delight at the same time, with our arms outstretched above our heads, feet losing gravity and smiles that will be captured on a camera or in our minds. I can’t wait…..life’s perfect moments for our memories scrap book.

When a serious illness appears a family can be torn apart through fear, worry and uncertainty about the future. Or they can pull together, discuss what has happened and face the future as a unit. Below is an article by Linda Kinyon who has the top ten tips on what to do if someone in the family has a chronic physical or mental health illness. Being the person effected I am not sure that I agree with all her points but we are all individuals who require differing approaches.

Ten Tips for Coping with a Family Illness

Life is going along smoothly when all of the sudden you hit a bump in the road. A loved one, spouse, child or other relative, has been diagnosed with a chronic illness. How do you cope? What do you do?

·         Educate yourself and your family about the recently diagnosed illness. This may include visits to the library, the doctors and hours on the Internet researching the chronic illness that your family member has just been diagnosed with. Don't be afraid to ask questions if you don't understand something!

·         Be a source of strength for the patient. Easier said than done I know. Save your tears for elsewhere and be brave here. The last thing your loved one wants or needs to see is your distress.

·         Be encouraging and allow them to grieve if need be. Assist them in getting pastoral help if desired and be available if the just want to talk about it.

·         Assist the doctors in your family medical history. Above all, be honest. Hiding that Aunt Elma had a specific disorder is not appropriate. It may be a key to unlocking the disease.

·         Take advantage of all support organizations for your loved ones medical condition. You may sign up with several only to find that one specific one gives your family the most emotional and/or educational support. Ask your hospital's Social Service's department for recommendations, look up the condition on the Internet and see if there are local groups dealing with the disease.

·         Don't neglect other family members, especially children. Children often blame themselves for the disorder, "If only I hadn't wished Aunt Elma would get sick because she scolded me...". Reassure them that it is not their fault, they had nothing to do with the condition. Get them involved in a support group as soon as possible and assist them as much as possible in dealing with their loved one's condition.

·         Share with your friends and when they ask how they can help, have a few ideas in mind to answer them. Don't be afraid to ask for meal assistance when in for treatment or just home from treatments. Don't be afraid to ask for assistance with housework or other chores or even childcare if needed.

·         Take time for yourself daily. Whether you go for a daily walk, to the gym or just a long soak in the tub with a good book. Take time out from your stress and give time to you! This is healthy and a very important coping mechanism.

·         Share with other patient's families in the waiting room. Chances are they are going through many of the same feelings that you are. You might make some great friends this way. At the very least you will certainly see that you are not alone, that other families are going through a very similar situation.

·         Be honest with your loved one without frightening them. Children often ask, "Am I going to die?" The truth is, everyone dies eventually and we do not know when each of us are going to die. Medical science is continuing to update procedures and medicines to cure diseases and conditions.

·         Enjoy the time you have with your loved one and cherish every moment. Embrace this chance to draw close to them and do not begrudge the time you spend with them whether it be sitting beside them in the hospital or the clinic or just keeping them company on a bad day.

So, what is coming up?

Apart from Easter I will be in hospital soon trying a new treatment. I am hoping to manage it around my home and work life. Timing will be tight but we should be able to do it. The difficulty will be trying to keep out of A&E and the treatment. I am due to undergo two, minor, surgical procedures but they are nothing but a little bump in the road.

The children can think of nothing apart from Easter eggs and holidays. They will be very miffed when told of their school homework. Unbelievably with all the snow around they will be going back to the summer term in two weeks. Both have exams so the house will start to look like a school room with revision and books everywhere.

Work is keeping me very busy with training and projects. I am so proud of what we have achieved and how it is already changing people’s lives. The feeling of doing something worthwhile helps you face the day to day challenges.

On the social side, I still have a couple of outfits that I need to introduce to the world. The “girls” have organised a couple of nights out so be prepared. I am looking forward to donning my high heels, dresses and dolling myself up. I will be prepared for stupid people with sharp retorts and a dashing smile….photos sure to follow.

Anyway, time to go and do some work.

Until next time my fellow lunatics.

Sarah X

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