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