Tuesday 17 November 2015

That was the week that was.

The rhythm of the beat.

November 11th and trial date !  Yeah. Plenty of tests were carried out first and I was so pleased that when my ph doctor did the echo on my heart he turned to me and said that actually my heart was coping pretty well with the ph.  It still amazes me to hear things like this as it was so bad initially and also my levels were up by 11 last week from the time before my last right heart catheter  and we know rising levels are sooooo not good so don't quite know what is going on here.   It was very pleasing to hear the steady whoosh whoosh of the blood flowing through my heart, then when the echo moved to another part of my heart the steady thump thump of it.  I was quite pleased too as the rhythm of the beat sounded pretty good to me, a mere layman!  My next echo is in two months though my next Ecg. etc is in one month. I have another right heart cath at four months.    I took my first tablet and left with a months supply and my next four months appointments set up.  Let's hope it goes ok.  

As I was heading down in the lift to get my taxi home I was delighted to see one of my original nurses from my initial five week stay get into the lift.  Now I hadn't seen this particular nurse in almost five years, though we do Facebook each other. It was so nice then to give her a hug,  we had no time to talk though as the lift stopped on my floor.  I shall endeavour to see her in her office on my next visit and have a few minutes catch up with her if possible,  


Justice for my neighbours 

I said in an earlier blog that I was to be a witness in a harassment  case for an elderly couple.  They were worried about going to court but they need not have done so.  When we arrived the witness protection guy took us through to a room where we sat and were offered coffee and biscuits,  Here he went over what would happen in court and then took our mind of it as he regaled us with lots of tales of his sea faring adventures.  Then the prosecutor arrived and he told my friends that the best way forward was if the guilty party admitted his guilt and we just went into court for sentencing. I was not sure this particular guy would do so as it had come so far and he had his barrister in court,  However this turned out to be the case and so we sat in the court for his sentencing,  The result was an harassment order against him, a great legal step forward in the event of further  harassment   (and there will be because he takes drugs and drinks) this is when he causes the problems, and a hefty fine to his his wallet to the degree of around £1200 plus he has his own barrister to pay,  

His family were saying it was so wrong, he had done nothing wrong,  He obviously hadn't told them then that his mom had been taken away from her own home after he repeatedly beat her up, police pictures proved this and care workers reports,  He hadn't told them that at the same time he went to court for this he pleaded guilty to an earlier harassment case towards the same couple where he was ordered to keep the peace for twelve months, he managed three. Also he never told them that the lovely family living above him had moved out as they could not stand the harassment from him any more. I honestly think he is paranoid due to the drink and drugs. On leaving the court his cousin turned to me and called me a witch so the witness protection guy told her to stay back until we reached the room for our coats and then told her to leave the court.

This won't be the last time he upsets and harasses this family.  Their crime? To live below him and when he takes his drink and drugs he has these episodes.  There will be more court cases before he eventually decides, as the police said, that he really needs to live far away in a house miles from people!  The police have proof also that he once rang my husband 64 times in around six hours and me 11 times in the same period.  We just want him gone from here so we can get on with our nice quiet lives once more. 


Living with ph

We know how hard this is.  We all suffer so much when we have this disease.    It was nice then when I read a post shared from somewhere written by a ph specialist,  He said how it was important to recognise that we will have the hard times and accept help when we do.  We must remember not to push ourselves beyond our limits.  Things we can do maybe in the mornings we can't do later in the day,  I recognise this as I am not too bad first thing, though always heavy legs.  In the afternoon though I am an entirely different person with my body wanting to lie down and rest. 

It is strange isn't it that adrenalin can play a huge part in our lives,  Take for instance our ph conference last month,  Colin was shocked to see me on the Friday night acting like I had not even got ph, At home evenings are practically a no go for me UNLESS I have something to do,  That is when the adrenalin kicks in and I cope quite well really .  I may pay the price later but at least I get by with doing what I need or want to do So it was I believe the same for lots of my ph family at the conference. We had an amazing time but it took days to recover once the adrenalin wore off and we got back to normality.

It's hard to accept help. We struggle on with jobs we feel we need to do at home,  I know  I am being silly when on bad days I insist on maybe hanging the washing myself, it really takes it out of me and I suffer for it,  Why is it so hard for us to accept help offered by family?  Is it because we really don't want to be defined by our illness,  I do believe for me it is because I know my husband never signed on for this when he married me,  We none of us saw this future of a life with ph beckoning did we. We all blithely got on with our  lives never really believing a bad illness would hit us,  Certainly not a rare one,  Why would we get something like this, If we had to be the "rare one" why couldn't we be rare in that we won £40.000.000 on the lottery!  No we had to be rare in the bad way.  

We can't change what we have, we have to get on with it,  That sounds so easy to say but oh so much harder to do.  I do believe a positive attitude helps and I am thankful to have this,  I always believe the cure  is around the corner.  I am thankful for my specialists who tell  me we are living in exciting times for our disease, Lets keep phighting but remember to hand over the reigns when our levels are up and our reserves are low,  We need to acknowledge that were the boot on the other foot we would be happy to help our partner so we should happily let them help us.  In conserving our energy we are resting our hearts.  If we wake to a better day then do what you can.  I like to walk in the mornings when I can.  I  NEVER make arrangements to walk in the afternoon.  I know my body and my ph so well now.  Just remember to accept help and to say thank you for help received.


Absolutely Fuming

Months and months ago my mini was damaged by a car reversing back into me in a car wash, yes you read correctly, he reversed back into my mini.  We took down his details, though he was reluctant and away he went to work.  Despite ringing and ringing the insurance company for updates nothing has happened yet as he will not reply to the insurance company's letters.  This makes my blood boil as we are out  by £75 but even worse is the fact we have an insurance claim outstanding.  When we have asked how he can just get away with not replying we were told he may never reply!  Where does that leave us then, still out of pocket and still waiting for a claim in the system to be resolved.  We have witnesses too from the car wash but still nothing.  How then will he get more insurance cover, change his name maybe or go under a family members name.  I trusted him.  He seemed a nice guy, probably Polish, who worked at a local eating house as he had told us so he was at least honest in that degree.  I remember that I said on here before I  want to go cause a scene at his workplace  but won't.  Why is it the bad seem to get away with things but the good would be punished swiftly.  I am so angry at the injustice of this.  


France!

How very shocking to see the atrocities carried out in France last Friday.  All the innocent lives lost and for what, a bunch of radicals who want to change all our minds about religion, who want us to live in their world. Even if they managed their goal they would never be happy.  The truth is they just like killing for killings sake, hence as I said  above killing the innocents.  Quite when our world will be safe from them I don't know.  I do feel it is only a matter of time before we are targeted here too.  What makes my blood boil is often the people carrying out these attacks have been given shelter and education and money from the very countries they then go on to destroy. There will be pockets of these radicals everywhere.  We will never know where they all are. We may say hello to them in the school playground where we take and collect our children from school, brush up against them in the supermarket, say hello to them as they are our very normal appearing neighbours.  They don't have and special marks or ways we can see who they are, they just go about life in a normal way for the most point whilst behind closed doors plotting is going on to destroy the very structure of our society.  Death means nothing to them,  so sure are they of a glorious afterlife. The answer, I don't know and I sometimes feel we can never rid ourselves of these truly awful people who wish to ruin the lives of so many,  Will we ever feel safe again?  Who knows.  

Imagine too the people cut down at the concert.  All the joy of listening to the music was stopped as the concert hall became a Dante-esque vision of hell. People in wheelchairs were shot as they sat, one terrorist even went round to the victims and shot ones still moving.  Quite how one man can do this to another injured man is beyond my comprehension.  The more I read about all of this the more I despair about the world we now live in.  The band had just finished singing Who'll love the devil, who'll sing his song when the bombers struck and France's  bloodiest night outside of a world war was about to begin and was to last for almost three hours.  I can't imagine how it must have been for the people still alive to have to lay still, maybe beside a corpse and play dead as they kept hearing the sound of bullets aimed at those that tried to still escape.  Unimaginable horror.

It was so  heartening to see so many of us on Facebook ph website change our profile pictures showing their flag across our pictures as a mark of respect for France,  I have a love hate relationship with France after how badly we were treated over the foot and mouth situation, refusing to take our meat six months after we were cleared whilst they themselves had cattle riddled with it and some even say that the rot started with them. We cannot fish some of our waters and our fishermen have to look on whilst France are allowed over and take our fish!  I buy very little from France now.  I also hate the way they constantly shut down the air space every holiday season, close up their borders when they want more pay causing havoc.  We are no better in some cases as we too go on strike at peak periods in the airports,  All that said we must unite when we see such terrible things going on as the bombs and senseless killings going on. At the end of the day we are human beings united in the shock and horror we feel for our fellow men. No country should have to go through such things as these.  We know after suffering several times over the years the horrors that have been carried out on the innocents.  We still suffer over the bombings in London when other radicals destroyed so many lives on the Kings Cross underground.  This has to stop.

I just opened my paper and saw that twenty bombs have been dropped by the French on certain centres where the activists live and recruit their bombers.  It said there was panic in their city and electricity and water supplies have been cut,  There are also reports that one of the very dangerous terrorists was stopped and questioned by the French after the attacks, allowed through and is now believed to be somewhere on the run!  It won't stop him, he will just begin again, it's a merry go round in the worst degree.  I despair. 


Yes she did it, no fluke.

Last week I posted on Facebook that Izzy, just gone five years old, swam without arm bands.  I did wonder if it would be a fluke and we would be back to them this week but no, not at all. We were taking care of her all day Saturday and overnight so decided to take her to a hotel we frequent often on these occasions,  They have an enormous pool and she loves it.  Into the pool she went  with no arm bands and she swam on her front and her back!  She has a long way to go before she can represent England in the Olympics but at last we can say she can swim!  The sheer joy on her face as she swam past me was amazing, I am so proud and what a great start to try to keep her safe around water, as well, of course, the pleasure she will gain from being a swimmer.  Well done Izzy, 

My daughter collected Izzy and  gave me a lovely bunch of roses to say thank  you.   I love flowers and was just about to throw away a bunch that were past their sell by date so how lovely to have a replacement for them.  We don't need a thank you to take care of Izzy as she is such a good girl and lovely to have around but they were appreciated nevertheless as it showed we were in her thoughts.

Well enough from me for today,  I am going to have a lazy morning, maybe do a little shopping,  I have pottery this afternoon so I shall pace  myself.  

Hope you all have a nice day and achieve all you intend to try to do today, it's so hard sometimes I know,  Remember to do what you can and rest when you can't!  No point in pushing ourselves to the point of exhaustion, we don't get Brownie points for that. 

Carole. xxx


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