Friday 27 March 2020

IMAGINE !!!!

Ahhh bliss.  It is Friday night and you have had a rough week at work.   Your boss has been on your case nagging you to up your work rate.  A colleague you relied on to help you is off sick so you are trying to do the job of two people but of  course the boss is either ignorant of this or totally unfeeling.  Still never mind, you are home now and it is family night,  Family night means movie night.  This is where you sit in your cosy lounge with your wife, two beautiful kids and a dog, or maybe a cat or two.  It is where you will play the movie you all decided on last week at the end of that particular movie night.  Each member of the family take turns to choose and this  time it was the choice of your eldest son,  It isn’t a bad choice either as it is a block buster movie that cost multi millions to make but it is already breaking all records for being one of the very best having everyone sitting on the edges of their seats in awe of the clever effects.  

Pizza made and sliced, lager in hand for dad and a white wine spritzer for mom, maybe cokes for the kids, and popcorn and haribo all well placed on the coffee table in front of you all and the movie begins,  The anticipation builds and everyone hushes up their talk to enjoy their family movie night.  Sound familiar, well this is played out in many homes throughout the world so it should do.

The movie is like many others before but the effects are, as it was promised the most realistic ones ever.  As you watch it  on your huge screen in 3 d you really feel you are living inside your tv.  You are a part of it, you feel every piece of the action.

The story follows the scripts of plenty of movies before, two parents, one a research guy working in a pharmaceutical lab, a doctor for a mother and of course the obligatory two teenage kids with their amazingly white teeth and not a pimple between them. The parents see the world is on a collision course before many others realise the enormity of what is happening and send their kids away to their holiday retreat with the grandparents.  This retreat is of course miles from anywhere and very well hidden, a safe haven in a world that will shortly be going mad. A 4 x 4 is needed to negotiate the rutted path leading to it and it is shielded from the world.  Inside of course is a well stocked pantry with bottled and canned goods to last for years.  Flour sacks are filled to the brim and a freezer, that works by oil of course is also filled with all the necessities to hide out for as long as it takes.  Spare oil drums are at the ready and tablets to purify the water that comes from a spring close by are there if they should be needed. Plenty of logs are already split and ready to warm the long nights and of course much wood is still to be had from the forest shielding their holiday retreat.   The well stocked cupboards  also contain multi vitamins the family may well need in the months and even years ahead.   Yes I know and you know the rest.  The father is intent on discovering a drug that can kill the virus that is killing the world and the mom is self sacrificing and is busy saving lives.  

Over time of course the electricity that is needed so badly in today’s society fails as the very men and women that work the national grid die to a virus that is so consuming, killing people  worldwide.  Telephones are cut off as things begin to fail and the men needed to repair the lines are either dead or isolating and the water companies that struggled for so long to give you this life saving drink loses its battle and fails too.  Sewage companies become defunct and many that do not die of the virus die from diseases spread by unhealthy living conditions. Aeroplanes were finished long ago as countries shut out the rest of the world to try to save their own and busses and taxis are long gone.  We see aerial shots of the towns and cities with cars spewed across the road, crashed into others, bodies thrown and left where they landed. The family dogs that were once so loved have now turned feral and are roaming the streets putting fear into anyone that has survived.  The stores - once so well stocked have been stripped of their goods, either by the people who saw what was coming and decided they would be ok and took all they could afford to buy. never thinking of anyone else to follow or were stripped and looted of anything left once the stores closed their doors for good. Little did the ones that stripped the shelves of the very necessities of life realise as they went out before the end to buy a huge freezer to put their food in to preserve it from anyone else that it would not be long before it would be stinking and rotten.  The reason being that the electricity needed for the freezer was cut off as men and women controlling the power needed fell to this deadly virus.  

So yes, how many films have we watched like this, the end is always the same, the father finds the cure for this deadly virus, the mom saves lives and the world has to begin to pull itself together to begin a new norm after such a catastrophe.  Once again aerial shots over the earth just a few years later show that nature is taking over.  The cars that skewed all over the roads are now hidden by grass and bushes, animals roam where the highway once was.  ( we know of course how the film makers made these scenes look so realistic as we had seen how it was done when we went to America at the studios.  The cars are in reality nothing more than miniatures and some clever people in the props department had worked their magic). but even knowing this did not make the film seem less real.  

Pizza eaten, haribo all gone and mom and dad a little merry from their drinks,  All is well with the world EXCEPT - 

here we are today, at the beginning of this nightmare. We see how very quickly people turn selfish and think only of themselves, emptying the shelves of anything and everything leaving nothing for the old, infirm, NHS staff etc,  We see a nurse who has worked a 48 hour shift come off duty to buy food only to find empty shelves.  She cries and films herself which is sent over the airwaves for us all to see as she tells us all to stop it and she is so right,  We need to pull together,  This is a crisis we have never seen before in our lives, it is taking the lives of loved ones worldwide and dividing families too. Not all of us will come through this.  Statistically some of us will lose this battle against the Coronavirus which is a terrible thing to think but we know it is the truth. We already have cities and towns in lock down.  Children are being taught at home as parents cannot leave the house, only the ones deemed necessary are allowed to go out  to work.  We must treat this as a war and unite and work together so that we all have the same chance of coming through this.

I do not envy any government having to deal with such a crisis as we are in.  Whatever they do they will be criticised, some things they will get wrong, some will be the right decision.  As for us all we can do is listen and take the advice we are given, stay home, disinfect, disinfect and more disinfect and stay away from your families until this virus runs its course or until the clever research guys find us the drug to kill this in its tracks.  It will take time but we are a stoic nation, we can sit it out and hopefully come through at the other end.  Boredom will be hard so try to find a new hobby.  Let’s hope that our electricity keeps going so that we can all keep in touch over the airways by whatever means, phone or computer.  Let us pray that our lives do not end like so many in the block buster movie we just watched.  

Us here and now

We have Izzy as her parents are key workers so have to go into work.  The only way we could work this is that she actually moves in with us for the  duration.  Though she could attend school there would be nobody able to collect her at the end of the day as we are in lockdown.  Of course we cannot have her go home to maybe pick up the virus and give it to  either of us but in particular me as we know all too well that my lungs  - so badly damaged already - and a heart already deteriorating cannot pull through this so here she is.  Until almost two weeks go by I cannot go too close to her so granddad is doing her schoolwork with her and being her plaything,  Whilst this is fun now we know this will wear thin over time and frustrations will surface. By then I hopefully will be able to take over some of the roll of teacher and plaything.  Until then over to Colin.   After school work they walk a mile around the reservoir over our road.  Very few people are out and those that are stick to the distancing rule too.  Covers have been taken off the furniture on the terrace and cushions put in place so that the warm days can be enjoyed by all, me when they are out and then we swap over when they return.  

I do my bit as I prepare meals when they are out of the kitchen and do housework etc when I feel up to it,  I hate to be a slouch and I hate a dirty house.  I recently began selexipag and today will be my second titration up to 600 mgs twice daily.  This drug does make me feel a bit “odd” for a couple of hours so then I do nothing but lounge around feeling useless,  This will change as my body adjusts to it and I feel sure I will benefit from this.  The timing of this drug for me could not be better though as we are in lockdown so I am not missing out on too much at all.  In the meantime Colin and Izzy have enjoyed fires in the garden whilst eating their lunches with a warm sun on their faces and Izzy enjoys FaceTiming her mom and dad in the evening when they are home.  She has a super bedroom and is delighting in making use of it properly now she knows she is to be here for the long haul.  Drawers are filled with her clothes, her toiletries are in the bathroom and she is fully ensconced in her daily life here with us. Daily she picks cabbage leaves from our garden and takes them next door to feed her rabbit before returning to us, When the time is right Izzy will be able to reconnect and hug her parents but at least for now when they are home she  will be able to  go into the garden and see each other for real as they live next door ( social distancing of course) but so far they are home too late from work to allow this. 

Colin sticks to a routine with Izzy with schoolwork beginning at 9.15 and break times etc,  

They have a curriculum set by the school and follow this plus Colin teaches her piano each day too,  Lots of playtime is going on and we have many games here that we all enjoy, though for now I am excluded.  Tomorrow they are both baking bread, from scratch, no bread maker  and they will compare the two of them when baked.  

Yesterday I did manage my 10000 steps by cleaning and gardening but of course not every day can follow the same pattern.  I am hoping tomorrow to clean all the glass surrounding the patio but as my meds will have increased we shall see how I react to the drug. 

We have questions that need to be answered.  Lots of you reading this suffer from PAH or ph and we need blood tests to check our livers etc monthly yet we are not supposed to leave the house.  I think shortly we should hear just how we are supposed to go about this plus of course warfarin blood tests,  I for one do not wish to be in a roomful of strangers all waiting these tests.  

Daily we vulnerable ones are told what to look out for and how to keep ourselves safe,  One problem is that the very things we are told to look out for most of us suffer on a daily basis due to the medicines we take,  We often have stuffy noses  - gosh am I getting a cold, coughs - oh my goodness I have a cough when in reality I have PAH, I always cough - achy limbs, well selexipeg and iloprost always give us achy limbs  - high temperature, well not yet but our meds do make us flush which could lead us to worry.  We will just take it on the chin knowing we have done all we can do and pray that the virus passes us by.  If it does not it will not be for the want of trying to evade it,  

Well time now for me to take my new drug and get up and dressed,  I have no plans for the day,  maybe make a fish pie as we were fortunate yesterday to have a stone of fish delivered,  No we were not being greedy,  We decided at the start not to hoard food but our fishmonger was closing his doors yesterday.  He knows we like the fat end of the haddock and not the tails.  Apparently yesterday a body builder asked him for £50 worth of haddock tails so knowing he needed to sell up and time running out he rang us and asked if we would like the thick part.  We agreed and he cut it all into individual pieces and wrapped them separately for us so we have plenty to go at and he was able to rid himself of the fish before he closed his doors, for how long who knows.  So we now have salmon, tuna, haddock and sea bass  aplenty and he did not have to waste any of his produce. His own wife is in lockdown so he decided he could not risk carrying on working and maybe putting her health at risk,  

So a tough time ahead of us all,  I pray for my family to come through this, my daughter and son in law who are working with the public each and every day, my son who lives in Leeds and will have no help should he fall ill to this, my extended family  and to all reading this blog,  Let’s all keep in contact, keep strong and look forward to when we emerge from this hopefully unscathed.  

I had better end this now,  Our friend Roger says I write books instead of blogs, sorry Roger.  X

Warm love to you all, chins up!  

Carole xxx

We have had such sad news from our  lovely Anna Caroline Bowen.  Her husband Del sadly lost his battle with the brain tumour he lived with for many years.  Throughout this time he continued to work, he supported his wife and children.  I met him a couple of times at our ph conferences and liked him very much. A quiet unassuming guy he was admired by us all as he coped with such a devastating illness.  Anna posted when he went into a hospice and it seems no time at all that he lost his battle.  This was such a hard time for Anna as she does not have a living parent and with two small children and suffering from ph and needing the pump to keep her alive this must have been so scary.  She was supposed to be in lockdown for her own safety but her husband needed her too.  One cannot imagine what she is going through right now and she has a lot to deal with in the weeks ahead.  Please if you can think of her and send her a message if you are connected on Facebook.   My thoughts are with you Anna and your family,  tons of love xxx

1 comment:

  1. Glad to read that the selexipag isn't being too tough on you, hopefully I'll get around to that visit when this is all behind us.
    I can't imagine how strange this must be for Izzy, hopefully the facetime technology will be enough to keep her from jumping the fence as this isolation goes from weeks into months.
    T.

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