Side Stepping Side Effects with a Side Salad

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

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

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

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

Side Stepping the Side Effects

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

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

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

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

Side Salads

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

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

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

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

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

Always put yourself first

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

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

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

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

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

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

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

Sarah…

Decisions, No Collisions and Dancing like Michael Jackson

Throwing a few moves in the Chariot

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

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

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

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

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

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

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

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

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

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

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

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

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

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

www.whizz-kidz.org.uk

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

Until next time my fellow HUVs followers…….

Love

Sarah  

Celebrating with Friends, Family and Spoons

Summers gone by

Well hello again

Quite a bit of time has passed since I Iast posted. So much has happened during the past few weeks that I am not sure where to start…the beginning is probably the best place.

I last posted at the beginning of May after what had been a rather hectic month.  I remember that the post spoke of my need to try and keep things as normal as possible.  But sometimes there is a need for others to step in, for your own good, and take over.

Many months ago I posted about a fantastic self help tool called the “Spoon Theory”.  A lady called Christine Miseranino thought of it. She was explaining to a close friend how her day could change from hour to hour depending how much strength she had due to her condition, Lupus. The link to the Spoon Theory is below and well worth reading. I know that several people still use it and I always measure how many spoons I have left before making decisions.

So, back to my original train of thought;  - letting others make decisions or take over the burden for a time….. it is important to accept help when needed. I have turned down friends, family, consultants and Drs. It wasn’t until “The Prof” took matters into his own hands that I realised that I needed to listen to what he was saying, give in and let him take over….

We all want to be in control of our lives but sometimes we do not recognize it spiraling out of control. Even ill, we juggle home life, work and relationships. Trying to keep all those balls in the air with healthy hands can be a challenge but when those hands hurt or are injured it can be harder.  Think how much easier it would be with an extra pair of hands or two keeping those balls in the air with you….

So, what’s been going on my life? What hasn’t to be honest?

Unless you have been sleeping for the past month you will know we have had a Jubilee. This was a weekend of celebrations for me including street parties, family get togethers, Wilma’s birthday meal, and video days. It was great fun but I only just made it. Until the Friday afternoon I was stuck on a hospital bed being pumped full of drugs continuously for a week. “The Prof” had stepped in and admitted me….through default though; I still don’t how he tricked me. I had until that moment I had been in A&E at least twice a week trying to control the reactions. We came to a compromise; I would only be admitted if I could get out of the hospital in time for the celebration weekend.

There was another compromise that was a little harder to accept. The Chariot was to come into full time use when out of the house. My first challenge was work. I have been using the wheelchair for about 18 months now but not at work. So I pulled up my chin, sat my bum down and started wheeling.  With a smile plastered on, I entered the building with my 4 inch high shoes and a fantastically stylish handbag.  At first people were shocked and thought I had just gone into the chariot. I told them to look at the state of it to see that it had already off-roaded, it has an arm rest missing and bent feet, that’s what I call properly broken in. People tried to push me, that soon stopped and others greet me with a pat on my shoulder. It’s funny that never happened when I was standing up. It’s normally my right shoulder so I will need to get another shoulder pad to even out my jacket.. J

I have to confess that I should have relocated to the wheelchair months ago. It has made such a difference to my energy levels as well as scare everyone each time I speed down the ramps with my arms in the air rollercoaster style.

Medically I am waiting for a new treatment and enjoying being out of hospital. The Primary Care Trust are dragging their heels but it is a time of cuts and budget restrictions so we are not surprised....I look like a bull frog from all the steroids but every time Mark hugs me I feel like a princess.

The “Fam” are great. I have super dooper fit family. All have played in football matches the past two weeks. It now appears that I have two children who want to kick a ball at some poor unsuspecting goalie.  Boo is the smallest in the team but boy does she like a tackle..I don’t know who she gets her feistiness from???? Roxy is flagging from the 40 something miles she is walked every week and Mark is now disappearing into the man I met over 20 years ago.

We continue to face things head on and as a family unit. There are times that we all express our frustrations but on the whole I think we are doing brilliantly. What I would say to anyone who has children and battling a condition that dramatically changes the homelife is to consider the difference in how the children react. Jake is almost 13 and recently struggled much more than Boo. He is angry and in denial which as parents is more difficult to deal with.  Sometime the child who is appears to be dealing with everything is actually struggling.  But then again a pre-teenage young man……. It was always going to be fun :0)

The children are starting to ramp down to the Summer holidays which bring their own challenges. Discos, trips, school nights, sports days and fayres….. That’s before they break up….then….. I’m bored, can I have, I’m bored, why can’t I, it’s raining, I’m bored……. And on it goes….and this is still 4 weeks away …..

So what have I got coming up…. I am so happy to say that I have been asked to present to a party of disabled graduates who want to enter the workplace. I really feel that by doing this I am paying forward something. I take great pride in the fact that people feel they can take some of my experiences and put it them to good use.  Am also looking at my wardrobe for a girlie night out, “Peroxide and Polyester “here we come….. can’t wait!!!!

So that’s about if for this post…. If you see me in my wheels say Hi, I may be speeding past you whooping like usual but I will see your wave.

Until next time my friends

Sarah

http://www.youtube.com/watch?v=jn5IBsm49Rk

The Spoon Theory written by Christine Miserandino. by ButYouDontLookSick.com

Plasma, Polyester and Dr Paradise

Dr Paradise aka Dr Parachute

Plasma, Polyester and Dr Paradise, what an earth is that all about I hear you say……..

Well, things have been slightly chaotic in the “Hill” household with many unexpected turns of events that have made the past few weeks far from boring.

Before I launch into the personal side of things I want to explain why, in such crazy times, I have continued to carry on regardless. It’s called CONTROL…..

People that know me, are fully aware of my almost pathological need to be in control. It started as child when I had to have the last word, much to my Mother’s frustration. Little did I know, that it was preparing me to fight the biggest challenge of my life so far.

Everyone manages their lives differently but when living with a disability, life threatening or long term chronic illness, there are times when you feel that you have jumped on to a giant snakes and ladders board and slipped back down the back of a brightly coloured serpent to square number 1. It would be very easy to give up at this point, pull the duvet over your head and think that you will face it “head on” tomorrow. The problem is that tomorrow may always be a day away.

To get me through the last few weeks I have actively, as my illness has ramped up, taken control over how much it impacts me and my family’s life. No longer do we call the paramedics but drive in and call the ER up front. This knocks off about 50% of my time in hospital. I now also have an arrangement in place with my local medical facility that if I am having a reaction, and they are available, I can go there for the IV infusion.  This has a total turn around time of an hour. I know it sounds very matter of fact but apart from work time, my life has been taken up with medical establishments so any time I can claw back is precious. One thing that has been suggested by the paramedics, if you fall out of the normal drugs administration protocol is to get a "personal paramedic plan". The plan will be the authorisation they need to give the medication required at scene. In an emergency situation this can really help.

My time for “non-ill Sarah” is at work. I’ve  made very effort to go in and continue as normal. For me, this is a form of therapy as it allows me to socially interact with others when I would have been indoors on my own feeling sorry for myself. With my colleagues I laugh, chat and forget that my hands and arms are trembling….it’s well worth the effort. But we are all different and act accordingly.

I have found an article on the 5 stages of acceptance of chronic illness. Now, I know that we have already heard of the stages but I have brought them to the fore again as it is important to understand that a long term illness can vary in its severity therefore life can change very quickly. It may help when you fall on to a “why me” day…… and we are all allowed those J

The article is below with the web link

Living with Chronic Illness and Disability

Receiving a diagnosis of a chronic illness or permanent disability means that your life is changed, perhaps forever. It can happen at any age and can be frightening and daunting to face the challenges ahead.

By learning more about your condition and doing what you can to manage it, you can feel stronger and more able to take it all in stride.

Health problems are categorized as "chronic," if they're a long-lasting health condition, as opposed to "acute," which is over fairly quickly, such as the cold or flu.

Chronic illnesses usually begin and progress slowly. They can be difficult to diagnose and have multiple causes, including heredity; lifestyle factors, such as smoking, lack of exercise, diet, etc.; and environmental exposure. Some common chronic illnesses include arthritis, asthma, emphysema, cancer, diabetes, digestive disorders, heart conditions, pain, and sleep disorders -- to name a few.

Sometimes, it takes a long time to find out exactly what is wrong. Although you may have been relieved to finally have a name for your suffering, you may also have felt like some of your worst fears were coming true. With dozens of unanswered questions churning through your mind, you wondered what, if anything, the future held for you.

That’s a perfectly normal reaction. It’s also normal and even necessary to go through a period of grieving. You need to grieve any significant loss in your life. With chronic and debilitating illnesses for which there is no cure, it’s important to grieve the loss of the kind of life you had always pictured for yourself. It’s through grieving your loss that you are able to begin to build a new life.

Although that life will be different than you had planned, it can be every bit as rich and fulfilling.

The journey of grieving usually involves five stages. There’s no set time frame for each stage. You may pass through one stage very quickly or even skip it. You may linger in one stage for a while or even move back and forth through different stages more than once. The crucial thing is to keep moving. While it’s important to give yourself permission to experience each stage as it comes, don’t allow yourself to get stuck in any one stage.

Stage 1: Fear and/or Denial
Often your first reaction to a diagnosis is, “Not me! The doctor must be wrong. I’ve just been pushing myself too hard. If I take better care of myself, I’ll be fine.” You’re afraid and don’t want to believe that this could be happening to you.

At this point, although you have a diagnosis, you probably have very little factual information. Your circle of family and friends may know little to nothing about your illness. Frequently you feel very alone in this stage. The best thing you can do to help yourself move through this stage is to educate yourself. Gather as much factual information about your illness as you can find and study it carefully.

Stage 2: Anger
As the reality of how significantly your life is changing begins to settle in, you will probably be angry – angry at God for allowing this to happen to you, angry at your doctors for not diagnosing you sooner or helping you more, angry at your family, friends and employer for not understanding what you’re going through.

Although anger is a normal reaction, dwelling on your anger will only increase your stress level, making you feel worse, and it will isolate you from the people you most need on your side. The most productive way to deal with anger is to channel it into determination. Set your mind to finding the treatment plan that works best for you.

Stage 3: Bargaining
At this point you may try to “strike a deal” with God, or something similar. You might think: Maybe if you’re good enough, this will go away. It’s important to understand at this stage that your illness is not a punishment for something you’ve done wrong. It is simply one of many diseases that are a part of life here on earth.

Stage 4: Depression
When the reality of your condition sets in, it is not unusual to experience some degree of depression. Your lifestyle is probably changing and you may no longer be able to do some of the things you once enjoyed. Your once hopeful future may seem like a big blank space with a gigantic question mark at the end of it. It’s perfectly normal to feel depressed over these changes. Who wouldn’t?

This is often the stage that is most difficult to move through. Depression brings with it feelings of hopelessness and a substantial decrease in energy. You may feel like going to bed, pulling the covers over your head and waiting for the world to go away. You wonder how you can possibly face the rest of your life with this illness.

The first thing to remember is that you are going to have some good days and some bad days. The more you learn how to take care of yourself and which treatment options help you the most, the more good days you will have.

If your depression is severe or you are feeling suicidal, please talk with your doctor. You may have a chemical imbalance that can be helped with medication. And don’t hesitate to seek counselling. It can really make a difference to have someone help you work through the changes and challenges you are facing.

Your life may not be what you expected but it can be good. In fact, when all is said and done, it may actually turn out to be better than you imagined.

Stage 5: Acceptance and Re-evaluation
Acceptance is not resignation. It is understanding – understanding that your life will be different, but that different can be good; understanding that you can accept your illness without becoming your illness; understanding that your life can still have a positive and productive purpose.

At this stage, it’s time to re-evaluate your life and your lifestyle. When you were healthy you were able to participate in a variety of activities that interested you. Now your energy and physical abilities are limited. Many things in life will catch your eye or spark your interest, but only a few will capture your heart. Now it’s time to focus on what captures your heart. Pursue your passion. Let the other things go. Spend your time and limited energy on what is most important to you. If you do that, you will find your life to be more rewarding and full of purpose than you ever dreamed possible!

You are a unique and special individual, and you will progress through this grieving process in your own way and at your own pace. There is no “right” way to grieve. There is no timetable. Look at each stage as a learning process and a step of personal growth. Then once you’ve made it into that final stage of acceptance, you can begin to manage your illness instead of letting your illness manage you.

http://www.randifredricks.com/randi/art/cope-ill.cfm

So why the title above……

Plasma – some of you know that I have been undergoing a rather drastic form of treatment called “Plasma Exchange Therapy”. Oh my goodness, it was amazing. The machine takes your blood out, seperates the plasma, exchanges it for new plasma and then puts your blood back in…..I would love to have been in the room when the Dr/Scientist said “Right, I have an idea about a plasma machine”.  The idea is to give my body a rest and a little time, I said a little bottom would be more use…..

In true form we named the machine Optimus Prime because it unfolded like a transformer….truly wonderful piece of kit.

Polyester – after all my hospital visits I needed cheering up and friends came to the rescue to get me out one evening for a night for of full belly laughs and fun. We went to a local venue that appeared to have every single lady over a certain age supporting peroxide blonde hair and polyester dresses. Now, I know I sound mean, and they all looked splendid, but with the moves they were showing on the dance floor mixed with all the peroxide and polyester I was checking out the fire evacuation process as I was sure the combination must have been a fire hazard. I haven’t laughed so much since I feel ill and even though I was almost bed ridden for the following two days it was most definitely worth it.  I think my partners in crime probably suffered even more than me……

And finally but definitely not least Dr. Paradise…….Before I was admitted into hospital we had a few trips to the local ER, in a short space of time, to get the “magic juice” administered and luckily the registrar was a doctor called Dr Paradise (yep, his real name). On one of the occasions my friend, Pip and Boo, my 8 year old daughter, came with me. Well, he was an instant hit with both. The man is amazing at putting people at ease and his “George Clooney” ways had my daughter completely in awe, not to mention Pip. Whilst I was being sorted out he swapped sunglasses with Boo and she was taking pictures of him. I think that every ER should have a Dr Paradise, he immediately makes you feel slightly better regardless of how ill you feel or are. He should be on prescription…..

That night whilst Mark was putting Boo to bed, she sleepily turned to him and said “That Dr Parachute was lovely Daddy” even now it makes me giggle.

I did tell him on the following night during my next ER adventure, I think he was impressed J

So, that’s where I currently am. The HUVS is somewhat unpredictable unlike the person with it. I have predictably booked my next night out with the girls, already thinking of outfits and shoes, and looking ahead to the Bank Holiday Weekend.

The past few weeks have made me face up to the severity of my illness but they have also allowed me to re-evaluate how I can manage it. There have been friends who, at a moments notice, have dropped everything to support us. I want to thank Caz, Jax, Philly, Lisa and Pip. I also want to do a big Hi 5 to my parents who have now witnessed the attacks and been there in the ER with me making me laugh while they have cried. And of course to Mark, Jacob and Boo, no thanks needed there……they are the reasons I haven’t stopped fighting……and will continue to be my motivation and inspiration.

Right enough of the soppy stuff, until next time my fellow HUVs followers…..

Sarah x

Fabulous Mid Forties, Organised Day and the language of “Grunting”

Mid Forties Fabulous Footwear





I wanted to start this post with a conversation I have recently had with a wise, supportive and similar aged friend. We both have reached our mid forties, though her birthday has not yet happened, and realised that contrary to the rose coloured views of the young, we have in fact reached the perfect age.

Chilling back on the sofa sipping a “decent” coffee we listed what had changed over the past year and how those changes had led us to the comfortable, confident women we are today.

It was then I mentioned how I have started wearing my beloved high heels on a daily basis, how it had raised eyebrows of passers by with queries and comments made.

I had already experienced the “light bulb” moment where I knew that my attire and appearance was important to me and that having a stick, wheelchair or friendly arm shouldn’t stop me being just that…me.

It’s strange, the idea of growing older with an illness/disability isn't phasing at all. It is all part of the journey that gets you to the person you want to be. I can safely say that regardless of treatment, illness and other blips, my confidence is at tip top level and at least 4 inches higher than it should be thanks to my fabulous new black stillettos J

　

In my last post I told you all about my to-ings and goings to the hospital and treatments. Well, I have had the second load put in and waiting to hear how it has effected the HUVs. It is going to be a long process but fingers crossed I will see some improvement, if not, then onwards and upwards. As sung by the infamous Beastie Boys “you’ve got to fight, for the right, to parteeeeeeee”. My mantra “Carpe Diem” still stands and will going forward. I recently have found strength in a friend who is also on a rocky road. We are both facing our challenges with humour and spirit. It makes a difference when you can share your experiences with someone who is going through something similar.

The other big thing is that in a couple of weeks I am intending to increase my work hours. This is great news as I currently still feel out of the whole working loop due to my very reduced attendance. I’m not sure that I shall be so pleased once the hours have kicked in……..this leads me onto the serious side of this post.

When living with a long term debilitating illness it can be very difficult to deal with the daily things that everyone else just completes. For instance, on a work day I compartmentalise my day depending where I am at that point in the day. Tomorrow I shall be Work Sarah, HUVS Sarah, Mummy Sarah followed by Wife Sarah…..so many roles in one day J but it helps. I don’t necessarily want my work colleagues to see the HUVS Sarah, the children see Work Sarah and feel that Mark deserves to see Wife Sarah occasionally. Sometimes things can become all consuming and it is paramount to put the nasty things back in their box even for a short time. If not life an become confusing or even worse un-faceable.

Personal

Well “The Fam” are ok, we have had many birthdays recently and still have a couple to go this month. The weather here in the UK has been beautiful with unseasonable temperatures which mean the children have been out in the sun A taste of summer in March….unbelievably great J The other wonder I found was an exercise show, on the Fitness chanel, for a workout totally completed in high heels..my idea of exercise heaven. I may sit in the chariot in my very high heels and throw my legs and arms around for a while. It all counts.

Mark is in training for a football tournament so the house smells of deep heat and other medicines. Both children are involved in their activities which included Boo dancing in the middle of a school field last night……Jake is at the grunting stage so I never know what he actually wants, I have looked in the local library to no avail for a “grunt” dictionary to help me understand my soon to be teenager…

　

A promise is a promise

In my last post I mentioned that friends had suggested that I try my hand at writing down my experiences into a sort of journal or book……well below is the first chapter… it is the only one I will be posting but enjoy….it is a humorous look at my days in hospital when I first fell ill…it is rather long J

Until next time fellow Living with HUVS followers

Love

Sarah x

　

The title is:

Pills, Wheels and Beautiful High Heels

I awoke in the hospital to a haze of blue. The ceiling, floor, curtains and staff all in varying shades of the same colour. I could hear the shuffling and sniggering of the staff, their athletic see-saw trainers not able to hide the sound of their movements. A group of nurses in their navy uniforms with their clip-on hand gels and watches were grouping round beds as if in a choreographed setting. I was amazed that they had not realised that half of us in the ward were pretending to be asleep. After six days of reading the same magazine the highlight was the morning round. Listening to the nurses detailing the night out on the tiles the previous evening and finding out who else in this emergency sterile environment had made it through the past eight hours. As awful as it sounds, it was the highlight of the day which afterwards stretched out in front of us, identical to the monotonous grey sea view we had from the windows opposite.

Mary next to me had survived and thank goodness. An octogenarian who insisted all her tubes were removed each day so she could apply her lipstick and face powder. She was the mostly lively entertainment I could have asked for. “ How have we done?” she asked as I peeped over my sheet. I peered around and could see that all were presented and accounted for. The ward sister looked over and pursed her lips and marched on to see where her shuffling gaggle of blue had gone. “We are all still here” I whispered. “Including Flora”. Mary groaned and pulled a face followed by a quick crafty spray of her violet perfume. I don’t like violet at the best of times but compared to what Flora offered I was willing to breath in the flowery scent with all my might.

Breakfast came and went and then the endless day started. I had been in the hospital for several weeks after suddenly falling ill with a mystery condition. At first it was all very frightening and I lost count of the number of specialists I saw in their threadbare jumpers, un-ironed shirts and scuffed brown shoes. It was as much a uniform as the blue gaggle. They didn’t giggle though, they looked like they had the world on their shoulders and peoples lives in their hands, which they did.

It had all began on what should have been the start of a relaxing week with Mark, my husband. The children were back to school so the time was ours. I could look back at that day with a rose tinted memory. I could say the autumn sky was blue for as far as the eye could see and that Mark and I were enjoying a romantic stroll hand in hand along the shore. But alas, although it was early autumn, the sky was grey, we were huddled from the drizzle in the car and only on the coast road to enjoy a hot mug of tea and butty with the local fisherman. It’s funny how your memory can alter what happens. Its like having your own editing suite that allows you to remember only what your brain will allow. Unfortunate really, as I would love to be able to remember some of the drink fuelled nights of my twenties.

Mary’s snores interrupted my thoughts. I looked at her and wondered what sort of life she had experienced. Her pale face wrinkled, each one folded into the face powder she had previously added, the only splash of colour was the ruby lipstick which was now slightly smudged into the lines of her cragged smile. Unplugging my monitors I slowly moved towards her bed and adjusted her cover. The gaggle were on the other side of the ward and hadn’t noticed she was cold. She looked at me with one eye open, smiled and settled back down again, even with one eye open she saw all. Once again I considered what a wonderful woman she was.

Visiting time arrived but no-one lasted more than two hours with Flora in full control. Mary and I were convinced she would wait until her own family arrived and we definitely saw her smirk when they left, looking green and embarrassed, within ten minutes. We thought maybe we should invite her into our conversations but Mary was swiftly running out of violet perfume and the alternative was to much to contemplate.

I heard Mary move about “is it lunchtime yet?” she asked. “Can you see my oxygen coming? If so, then yes” I replied. It was the gaggles’ revenge. Every time the caterers appeared so did my nebulisers and oxygen. By the time I had inhaled my way through 20 minutes of noisy air stream the plates were always cleared away and cups of tea in their place. “It’s ok” I would tell Mary, “ the special tight jeans I have never worn will be coming out to a full fanfare”. Hunger is a strange thing. It is all consuming until suddenly you cannot consider eating anything. “Here, I saved you a bit of my pork chop” Mary whispered. “it was a bit tough for me” I looked at the piece of meat carefully wrapped up in violet scented tissue and could just make out the ruby red tinge of lipstick on the left hand side. “Er, thanks Mary but I couldn’t eat a thing, I make it a rule not to eat to anything ruby red before five in the evening”.

We looked forward to the night shift because Sophie joined us. Sophie was a nurse but not yet fully qualified. She wore a white fitted tunic that stood out amongst the blue. Sophie was different. Her hair was jet black and pulled up into a pony tail with a 1950’s quiff at the front. Her right arm was a kaleidoscope of colour. Beautiful roses and peonies crawling up the ivy from her elbow to collar bone. She was the third and final part of our renegade group.

Her energy was infectious “Hi Girlies, how have you both been today? Sarah, have you eaten at all?” she said as she pulled out a sandwich and packet of crisps. She placed them on the counter next to my head, winked and turned to Mary. “So my lovely, I hear that you have been eyeing up Reginald in Bay 4”. Mary spluttered loudly, draw up her entire six stone frame, looked at Sophie straight in the eye, smirked and applied more lipstick. Reginald was the night time wanderer. He regularly decided to have a nocturnal walk which was ok when he was walking towards you but once passed your bed the view was not so pleasant, thanks to the gown that everyone had to wear. More than once one of his pale buttocks popped out. Luckily Reginald never knew and for us it was just one more weird and wonderful thing that saw us through another twenty-four hours on the emergency ward.

Time ticked on and people came and went. Some to other wards in the hospital others to the bigger ward in the sky. We seemed to stay static. Mary’s daughter, Dorothy, bought her more perfume. “Mum, you need to put on this cardigan” she’d say holding up a hideous nylon paisley creation. Mary’s jaws jutted out “Not on your Nelly. It clashes with my lipstick and washes me out”. Dorothy, “her name is actually Dorothea” Mary would chime, looked from her mum, to me to Sophie. We would all glare together as if shielding Mary from the offending article. Dorothy would sigh, give her Mum a quick peck on her powered cheek, put on her cheap anorak and walk towards the exit already thinking about the parking fees in the car park. She never stayed long.

One morning a new face arrived on the ward. Mary and I sat up in our crisp clean sheets instead of peering over the top like usual. “Who an earth is that”? exclaimed Mary. As a tall male nurse walked passed the beds pushing some electronic equipment completely unaware of the impact he was having. I had never seen Mary move so quickly, her powder was on her face so fast I hadn’t even noticed her compact. As for the ruby lips, she had applied with such enthusiasm they practically reached her nostrils. “Mary, what are you like?” I asked. “Have you seen yourself”? I laughed. Mary threw me a look of disgust whilst grumbling under her breathe. She took a quick glance before ducking under her blankets with wads of perfumed tissue wiping vigorously. After a time she reappeared perfectly made up. I gazed at her in awe. “How do you do that?” I exclaimed. “It’s amazing, you are apparently to frail to go home but you can put your face on in double quick time that would have a twenty year old green with envy”. I had realised for sometime that Mary didn’t want to go home. She was much stronger than she was letting on to the hospital staff. Sophie also knew but couldn’t bring herself to inform the discharge team. Mary had her reasons and until she was comfortable enough to confide in us we just ignored the fact we had rumbled her.

The new nurse was called Vladimir and had recently moved over from Cardiology. I could see the blue gaggle were very impressed with him. Their blonde hair suddenly shiny and eyes bigger through the application of mascara, constantly checking their appearance in the face of their fob watches. I’ve never thought it acceptable that a six foot hunk should be allowed to see me in an open backed gown, no make-up, hair everywhere and sporting a breathing mask that looks like I’m a constantly deep sea diving. I’m not what you call beautiful even after hours in the saloon but can pass as acceptable when giving time. One thing you have on the ward, just not the inclination, Reginald was hardly motivation to sprucing yourself up. Now I was faced with the prospect of being in some highly undignified positions with a man who had made even the 84 year old Mary swoon causing her drip to fallout and spray the patient in the next bed. The only person who was totally unaffected was Flora. But even then Vlad’s ability to block out the Flora’s natural “presence” was awe inspiring and endeared everyone to him even more than before.

During this time Mark visited. He kept me and Mary in supply of magazines and news from the outside World. His harassed tired face would remind me that he was holding everything together outside. The children were creating havoc with only one parent to harass and his mother was having a field day without my supersonic powers to rebound her forever interfering ways. He laughed with the gaggle, sweet talked the ward sister and always made sure that Mary and I had everything we needed before he ambled out of the doors, a man sleepwalking through the concerns and worries that you have when the one you love is chronically ill. Why would I look at Vlad when I already had my hero? But that didn’t stop Mary fluttering her eyelashes whenever he walked passed.

Night was particularly interesting. The lights dimmed to no avail as patients were moved in and out like bumper cars. Patients came in 3 groups. Silent, Moaning and Screaming. Like Meer cats Mary and I would watch all the comings and goings adding our own dialogue and diagnosis. “Ooooh! I bet he has chronic constipation” Mary declared loudly as some poor old gent who was bumped off the wall near our beds groaning in pain. “Look at her” she whispered. “Too much to drink, hope she doesn’t keep us awake too much, I need my beauty sleep, Vlad’s back on tomorrow”.

Sophie would join us, as her station was opposite our beds. She would occasionally have a worried frown and be distracted by an emergency occurring further down the corridor.

It was her concerned face that I saw when I came round from my first crash. Her soft voice clashing against the bright lights on the tiled ceiling. “Sarah, you are ok. You are back with us now. You had a reaction but we have it under control. Put your deep sea diving mask on and take a few breaths”. Focussing on the roses on her arm as she slid the mask over my face I was thankful she was the one looking after me. “Is Mary ok”? I croaked. I could hear fidgeting and I knew she would be apoplectic with worry that she couldn’t see her partner in crime through the blue curtains they had wrapped around my bed. “She’s alright Mary” she shouted enduring the withering look the ward sister gave her. Even with flashing lights, people and face masks I could physical feel the relief across the gap between our beds. Sophie stayed seated between us that night. The three of us against whatever was going to happen. We even giggled, me through a cloud of white vapour, when Reginald decided to go for his night time meander, sauntering past, smiling at Mary, white backside illuminating the muted walkway. That was the last time we saw Reg. He wasn’t in the roll call the next morning. Mary and I silently understood that we had probably witnessed his last swan song and a fine one it was too.

What’s next