Gracie through the Looking Glass with Heavy Clouds and Sparkles



The Changing Faces of Gracie-Lou



An unusual title I hear you say. I will explain….have you ever walked passed a mirror or window, done a double take and walked back for another look because you haven’t recognised the person in the reflection. It is only when you realise that there has been a trick of the eye. It is all ok, there looking back at you is the same person you were 30 seconds previously…..now rewind. ……you take another look and realise it is you but you don’t recognise yourself. You look different. Your face is a different shape, your thinner or fatter, you hold yourself in a different way and if you think you have changed what do others think…..

It sounds strange, why wouldn’t someone recognise their reflection but believe me it happens. I often walk past the big mirror in my lounge and need a couple of seconds to realise the stranger looking back at me is actually me.

At first I found this rather distressing then downright annoying. Where was Sarah? When did she decide to leave the building and replace her with this imposter? And why did she choose someone who had a round face and very rosy cheeks.

To add insult to injury all the ID photos for work and everyday security were taken before I changed. Constantly having to explain to security guards or officials that “yes, that is me” and “I know, don’t I look different” and “yes, I should ask for my money back”

I join in the joke and laugh, but inside I am frustrated. When I plan my wardrobe for the day my brain plays tricks on me and I visualise my attire on a thin body that is upright and in proportion. It is after a few moments I have to rethink and dress accordingly. I have always been very conscious of how I look and that still is the case.

I have given myself a “kick up the bum” checklist that I use when I feel down about the physical impacts of my condition and drug regime.

·         Don’t listen to other people’s comments

·         Concentrate the on the good changes

·         Dress for today

·         If mirrors upset you remove them from your surroundings

·         Explain to friends and family how you feel

·         Explain to others why you have changed

·         Spend 5 minutes a day reminding yourself of the good things you have in your life

I have decided to have a “grateful board” where I stick pictures and little nik naks of special times. You know the ones, when you think about them a smile independently reaches your face. They are the snapshots in time that make the fabric of your life and you who you are. My board will have memories of who I was before HUVs and how I am now. I need to start celebrating the person I have become. Only the other day whilst whisking our way home from the hospital Mark admitted that up until 3 years ago I was a quite a selfish person, in regards to doing things out of my daily plan. I never said “no” but would indicate that it was a bit of an inconvenience. I wasn’t even aware. These days I am more tolerant, understanding and emphatic. Though Rome wasn’t built in a day so there is still room for improvement.



My extremely cool plasma machine



This week I reached another milestone which was my 100^th admittance to the A&E dept in less than 12 months. Rather than face this with glum faces and concern the nurses and I had a countdown and celebrated the event in the style that only we can…Balloons made out of surgical gloves and cakes. It was a surreal evening with laughter and support in a sterile and, for others, frightening environment. So, I am back to 0 again and hope not to celebrate the 200^th visit anytime soon.

In the past two weeks I have also been on the wards having plasma exchange therapy. This means that I was plugged into a rather natty machine that transported my blood into the tubes next to me, took out my plasma, replaced it with new then gave me back my blood. It was rather strange watching your life source next to you. The only side effects was that I was cold, this reminded me of the old cowboy movies where one of the heroes was shot and he would say “I’m cold”. Well, now I know why?

 

We are still waiting to find out whether it has made any difference but I can’t say that I didn’t enjoy having my feet up for a few days, though the sound and atmospheric effects on the ward could sometimes leave a lot to be desired.

“The Hills” are well and fully integrated into daily life. The summer term is underway accompanied by the cold temperatures, gales and rain. A typical English spring/summer. It is funny to see the trees green when snuggled under a hat or scarf. Yesterday was full of dark brooding skylines and startling bright interludes which caused us to squint in surprise. I have to admit I love the really dark clouds when they nestle on the downs by my house. It reminds me of Thomas Hardy and his skylines. Of course when the sun suddenly appears the world sparkles from the droplets of rain that have settled on cobwebs and window panes. Snuggled on the sofa watching all of this unfold I, once again, thought of my grateful board as this was a memory moment.

Going forward my world will soon be dominated by football. Both the children play and Mark has been asked to help out. Boo wants to be assistant coach which means that I can have some PJ days with my feet up on the sofa, snuggling down with my girls, Roxy and Tika, and be allowed to let the time to slip leisurely by.

We have a constant stream of birthdays, parties, meetings, days out and general get togethers. I can’t believe that Mark and I will actually be celebrating our 17^th wedding anniversary. Where did that time go? Each morning I thank my lucky stars that I married Mark. He is my soul mate and though we have our bumps in the road we soon motor over them. Our marriage has been built on love, humour and the fact that we like, laugh and smile at the same things….even cars, watches and clothes. Like everything else, Mark and I face HUVs side by side, holding hands and supporting each other with the strength we muster each day. Without him I would have crumbled and fallen by now. Maybe I should say thank you more often.

So, with thoughts of sunnier days, al fresco eating and the smell of freshly cut grass we are waiting for the summer to appear, it is only a month to go before we start eating strawberries and cream whilst watching Wimbledon. As every year before 2013 we will be in our cagoules singing along with Cliff Richard, whilst the heavens open and rain thunders down on to the roof. I can’t wait………

Until next time my HUVs followers

Sarah x

Backs, Bruises and Bloody Mindedness

A new career????

The last post was a personal tribute to my friend Mark who I said goodbye to over a week ago. It was a beautiful, funny, moving, comical and human service with a lot of love and laughter. A union of Union Jacks under a blue sky. Chelsea cakes surrounded by friends and balloons. Memories, smiles, photos, warmth and a presence that touched everyone in the vicinity. Mr J would have loved his send off but knowing him I am pretty sure that he was probably there laughing alongside us.

The impact of losing a friend so early was an extra spark of independence and a need to prove that I was surviving. This led to a frantic and chaotic approach which included a ridiculous bag purchase and trying to assemble the black dream machine with my cousin Caroline. “POP” has a new place in mind. This was the thought that went through my brain as I headed face first towards the road outside my house. This is because I had quite literally “popped” my back….as I lay there moaning under the boot of the car, whilst sending Caroline back to child mode, I noticed my ridiculous bag purchase on the tarmac next to me…well that wasn’t got to stay there so my stubbornness took over and with the help of Jake, who was definitely the adult of the situation, managed to get into the house in time to call the paramedics….again. Two weeks later I am still on painkillers and wearing a brace…I will not be assembling the scooter in the future.

The inherit need to prove that I am “fine” has also led to so many bruises that I actually am starting to resemble a Dalmatian dog…so from apart my heart being bruised over the past month I now have limbs to match….I have always liked to accessorise. Ironically I have seen a lovely pair of black and white polka dot converse shoes that will go perfectly. Always thinking ahead J

On a serious note the bruising and back are actually down to steroid use. One of the many side effects is the thinning of bone, muscle and skin. This means that the slightest knock can shatter “honeycomb” bones, bruise muscle and tear skin. The initial thought was that I had fractured my vertebrae due to steroid overkill. I do look like I have done a few rounds with a cage fighter. The other side effect is the sun and I will come onto that later…..

Now, we all know that I am a bit of a control freak and this is caused by sheer bloody mindedness. When disabled or poorly you can fall into one of two groups…fight or flight…..I definitely have both of my feet in FIGHT!!! Though, I do know people who have fled to their duvets and not reappeared. There is no right or wrong but I would ask the question….how precious is life?

We have one and I think it is down to what you want to get out of the opportunities that come because let’s be honest most of them are created by us. I can’t miss looking out of a window at blue sky with the wisps and trails from the planes flying to destinations, that I wish I could still visit or rainy days with the wind bellowing around reminding us of its strengths, the dogs straining on their leads wanting to chase the leaves that fly by. I may not be able to join in but just watching the scenes unfold fill me with a pride of still being here ( I have to be honest, that I actually shed a tear typing that sentence) but that proves the desire I have to be able to do those things one again…it is very strong and with the support of my nearest and dearest I am sure that I will.

Blue sky equal sunshine and this means that I have to be very careful about the UV impact. I have to wear factor 50 everyday to ensure that I do not increase my risk of skin cancer so when it is sunny this is intensified and more determined action is required……and I do not mean the wonderful yashmak swimsuit Caroline sent me but more effective measures.

By being sensible means that you can still enjoy warmer months. There are numerous articles on the internet. They are there to assist you when you are reactive to sun or snow. Below is the one I found by Dr Poonam Sachdev from the Only My Health website.

What is a Sun Allergy?

A sun allergy or photosensitivity, in some people, is an allergic reaction caused due to exposure of skin to sunlight. The term ‘allergy’ denotes a hypersensitive response within the body to certain foreign substances known as allergens. In an allergic response, the immune system is activated causing it to form antibodies that try to destroy or neutralise the foreign antigens (the allergens).

In people with sun allergy, an allergic reaction occurs in response to exposure to sunlight. In a person with sun allergy, his or her body reacts to the natural changes in the skin that occur after exposure to the sun. Their immune system on exposure to sunlight begins to treat the skin as if it were something 'foreign' and tries to defend it. The exact cause and why this disorder happens in certain individuals and not others is not known.

The common symptoms of sun allergy include rash, tiny blisters or, in its extreme form, a type of skin eruption, such as hives or large blisters on the skin (not only on exposed areas, but under clothing too). The symptoms usually begin on areas that are exposed to sun, such as the back of the hands, the outside areas of the arms, lower legs and neck.

How to Manage It

Skin allergy is a not a common problem. There are many treatments for sun allergy, but the best treatment for this problem is avoiding exposure to sun light. The rays of the sun cause changes in the cells of the skin initiating an allergic response. The immune system then begins to treat the skin as if it were something 'foreign' and tries to defend it. Here are some tips for prevention if you have sun allergy or an increased sensitivity to the sun.

Protect against sun exposure: Prevention of exposure to sun is the best measure to prevent sun allergy. People with sun allergy need protection from sun exposure not just during summer or at the beach, but throughout the year. The time between 10 a.m. and 4 p.m. is the most hazardous time for the skin because that is when the sun shines the most in most parts of the world.

Some easy measures to protect against sun exposure include the following.

• Stay in shade: Prefer to stay in shade, especially between 10 a.m. and 4 p.m. (the time when the sun is brightest) and do not expose yourself to lots of sunlight suddenly. Experts say that many people develop symptoms of sun allergy during spring or summer when they suddenly increase their time in the sun. It is advisable to gradually increase the amount of sunlight exposure as this gives your skin cells time to adapt to sunlight.
• Wear protective clothing: Protect exposed skin by wearing long-sleeved clothes (full-sleeved tops or shirts and long pants). Do not wear clothes made of fabrics that are thin or have a loose weave as these allow the UV rays of the sun to pass through them into the skin. Dark coloured clothes probably give more protection than lighter colours. Clothes specifically designed to block the UV rays are available at certain sporting goods stores. Consider buying these clothes if you have bothersome sun allergy.
• Wear hat: Use a hat with a wide brim to protect the face, head, ears and neck. Hats made from tightly woven fabric, such as canvas offer better protection than straw hats with holes that let sunlight pass through.
• Use sunglasses: Prefer sunglasses that wrap around and block almost 100% of both UVA and UVB rays. These glasses are effective in protecting the delicate skin around your eyes from sun exposure.
• Use Sunscreen: The UVA and UVB rays of the sun can cause damage to your skin even after exposure for only a little time (as little as 15 minutes). The sunscreen acts by absorbing, reflecting, or scattering sunlight. The chemicals in sunscreen interact with the skin to protect it from UV rays. Use of sunscreen is advised before you go outside (even if for a short period of time). Apply the lotion on all parts of exposed skin. Use a sunscreen with sun protection factor (SPF) of at least 15 and preferably 30 or higher on exposed skin. The higher the number, the higher is the protection. It is advised to reapply sunscreen if you stay out in the sun for more than two hours after you swim or sweat.

By: Dr Poonam Sachdev

So, as you can see it is possible to be able to enjoy the golden rays but you have to prepare and follow rules.

I am hoping to get out in the garden especially as “the judge” is doing my fence allowing me to strive ahead with my latest project..the garden. I am keen to make a “Sarah Area” that I can relax in, enjoy the views over the valley and listen to the lawnmowers shaping the grass and smelling that wonderful fresh cut smell that can’t be replicated. Flowers, pots, shades, Al fresco eating and family time.

 All of this is wonderful, if I am there. Currently I am in the hospital every 1-3 days which is taking and enormous slice out of valuable time with Mark and children. Don’t get me wrong, I know I have to and why so try and make the best out of the situation. This is most definitely helped by those who join me. I am surprised that me, Mark, Jax, my Dad, Dr Dave, AnnMarie, Lucy, Pauline and Boo aren’t in the naughty corner. This is before I talk about the resus staff who are just as mischievous. From telling everyone that Boo is my granddaughter to playing with the new thermometer, a scanner that reads the temp from afar. Great fun being told, alive, alive, alive, dead, dead…..as they pulled the contraption away with the readings falling. Their humour helps me in the “room of beginnings and endings” which resus is by definition. The “boys”, Will and Justin, always greet me with a smile, rude comment and understanding. I expect to be invited to the staff party or at least get some blue scrubs. One of the funniest moments is when I was moved to a cubicle to have the curtains drawn back revealing my 95 year old grandmother “dah dah”. She was sitting in her bed stating that she didn’t need help whilst being very brave. Three generations, including my mum, were causing mayhem. Genetics run deep…all we needed was Boo to appear and it would have been practically a show…

The new game is to guess the shoes. Yes, my obsessive compulsion for footwear has now followed me through the big swing doors in to my second home. My shoes have drawn many comments recently and I actually feel the need to increase the expectation each time. The last comment was “you have Lady Gaga shoes on”. How on earth do I top that? Answers on a postcard please…..

 Due to the constant blue lights I have been tired and emotional. More than usual. This has led to me being less than a perfect wife, mother and friend. Not that I was before. I know that the medication has made me angry, aggressive and forgetful. Those who love me are forgiving and take no offence when things go slightly off kilter. They allow me to scream, cry and feel sorry for myself. My life is slowly slipping to a medical existence and I am not sure that I am ready to allow that to happen just yet. As I said before, quality is so important. So I am declaring war….war on the condition, the constant trips to my friends in blue and green and those who make me feel inferior because I am different. Difference is good and it can make you stronger. No longer will I concern myself with other peoples opinions of me, I won’t allow them to make me feel sad and lonely when surrounded by them. I can’t control the trips but can limit the time the children are impacted. As for the condition, well, I was drawn into battle 2 years ago and currently I am behind enemy lines, covert, obtaining intelligence to staunch the constant onslaught of rogue antibodies. I may not win today but I will have the ultimate victory.

 That’s about it and where I am currently….. Sarah is pulling up her socks, revaluating the current situation and thinking ahead to hazy, lazy afternoons in my area surrounded my sweet smelling plants, my two girls at my feet, a book in my hand only being discarded when I close my eyes and give in to the soft sleep that comes from the warm outdoors.

 Until next time, please take care, appreciate what you have, enjoy those around you and most importantly cherish the time you have with your nearest and dearest….

Sarah x

A giant of a man in so many ways....

The KTF baton has been passed on......

In life, people cross your path all the time. The ones you remember have left something with you. This special gift can be all manner of things but the fact you still think of them proves they were meant to have met you.

Last week my heart was broken by the passing of one of the bravest, funniest and human people I have ever known,

Mark was my “sick buddy”. What is that? I hear you ask. It is a hard question to answer as he was so many things to me. We met through his wife, Pip, and immediately hit it off. This was a long time before either of us fell ill and could enjoy the balmy evenings eating outside with friends, laughing and taking our time. Then as it likes to life threw a curve ball and we both fell ill. It was at this time we recognised kindred spirits and decided to, without thought or discussion, to support each other through the good times and lows. There have been many of both.

Some of our methods have been slightly unorthodox, like when I sent him lots of jokes about cancer treatment all the time hooked up to a chemotherapy infusion or the time he mailed me saying that my admissions were only a way to getting the Resus cubicle painted the colour of my choosing. Humour has been our constant companion throughout our journey. They say that laughter is natural medicine and even in times of severe pain and worry we would inadvertently swing back to funny comments.

Pip and Mark we so supportive when I first fell ill, knowing I supported Arsenal he gave me his limited edition beany bear for…….SPURS!!! I soon got my revenge by giving him a even bigger bear with the red badge J

They threw me cupcake parties, took Boo for wonderful days out, whisked me to hospital and been absolutely brilliant friends.

But Mark was more….he understood the struggles and challenges you face when meeting an illness head on, he knew of the frustrations and the need to protect our loved ones. He was the one person I could talk to who “got it”. Our mantra became “KTF” – “Keep the Faith”. After each text, mail or conversation KTF would appear to remind us to keep strong and looking ahead. This baton has now been passed to Boo, who even yesterday came running in telling me to KTF three times, Mark would be proud. They were the terrible twosome when together and sometimes it was difficult to ascertain who was actually the child…..she loved him and was in awe once saying “Mummy Uncle Mark is taller than our Christmas tree but not as tall as the lamppost” and even as Mark was being pulled towards the twilight she remarked that even though he had lost weight he was still the tallest man in the world……she loved him and continues to do so.

The true testament to this wonderful man, apart form his lovely wife and family, was the amount of genuine grief at his moving on. If any of us could even have a smidgeon of what had been displayed the past few days we would know that we had made a difference with our time on this mortal coil.

I will cherish the time that I knew Mr Johnson and always carry his support with me. We used to liken our illnesses to being on a train journey with different destinations. A week ago today my friend disembarked on to a new platform. He leaves me in the carriage still holding on to my ticket to my station.

I miss my sick buddy, reaching for my phone constantly to text him. My heart goes to Pip and I solemnly promise to support her as much as they have helped me and mine over the years. I will not let my bud down.

We kept making plans to take the dogs for a “Al Fresco” hot chocolate, this will have to be a rain check mate but it is still a date J

Until we see each other again KTF……..xxx

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