Tuesday, 14 March 2017

I have a chance of dying today

I woke to a new day and thought about what I hope to achieve . 

I also remembered a post (above) from a year ago that made me think about life and death so yes, I may well die today and so may you.  This post from the past brought it home to me just how we should view each day.  None of us are assured of tomorrow, though of course we have the hope.  I am not talking about the cloud that hangs over all of us with ph but everyone, the healthy and the sick.  The gentleman that wrote the attached said it all and it should make us view differently how we go about our day and how we should treat others.  It may well be that someone close to you does not have a "tomorrow " and the words in the poem say it exactly how it is,  He also ends with words similar to some I have used before about dealing with death but then putting it aside as now we live.  Something I so agree with.
On the subject of death I read in a paper that scientists have discovered that in some people even up to ten minutes  after death there is still some brain activity.  Not enough to go about life, of course without a heart beat that would be impossible but the kind of activity we have when we sleep.  They say that maybe this is why people who have "died" on the table and are brought back to life experience the dreams of meeting loved ones etc, of walking down corridors.  How I hope that this does not deter people from donating organs.  It may well make people stop and think when the reality is this person is still clinically dead and cannot sustain life,  We shall see if there is any comeback to them publishing this information.  

Cured of Pulmonary hypertension 

Yes how lovely it was to read that one of our ph sisters  has been dismissed from Royal Hallamshire as she no longer has ph!!!!  One can only imagine the jubilation on hearing this news at their house.  Rita Miller had an endarterectomy a few years ago.  Her operation was successful and now after around three years she has been declared ph free.  I am so thrilled for her and hope that anyone reading this blog that has the chance of this operation, scary though it is, takes up the offer.  Her type of ph was caused by blood clots in the lungs.  This is one form of ph.  Some people with this type of ph cannot be operated on as their clots are too distal, I have a friend like this.  Fortunately for Rita hers were not and so after a great deal of deliberation she had the operation,  What a success story for the world of ph. I am sure you all wish Rita well as she now goes about her life able to live it to the fullest since this operation.  

Tractors and roots

Gosh so much been happening at our building site recently.  The trees are booked to be taken down over a two day period in April.  This is a huge task and requires a few men for two whole days.  In order for them to be able to carry out this operation. As the wall around our land is old dry stone walling our concern now is that they may collapse when the trees are pulled down.  This would then require a man trained in dry stone walling to work with Colin to put it back.  We have no intention of removing walls built hundreds of years ago so must leave it as we found it so to speak and repair any damage that may occur whilst dealing with the trees.  Colin has been at the site daily cutting down all the huge, and I mean huge, bushes, edges, small trees, Cyprus trees etc.  He has cleared as much of the hedging as he wants to do at this stage and much is now open for the equipment that will be used. We had our friend Michael helping and he brought up his tractor  Pixie to pull out all the roots, they were so large and deeply  embedded it  needed the strength of the tractor and chains etc.  Lots were done but many remain so Colin continues to go to the site daily.  

Our main problem now is getting rid of them, the pile is as big as the house will be!  Skips won't be any good, we would require too many, do we use a chipper, well again not so sure so I am waiting for the council to get back to me to see if they can help us.  I wish they would get a move on as there is much to be done before our plans can go out to tender .  We can't burn it as there is so much sap it will be way too smokey and we would not wish that on anyone. 

Just got a follow up on this ....... Colin just rang.  The council has been down and looked at the pile.  The guy was pretty shocked at how much there was but for a fee, not as bad as we thought, they will take all the foliage and all the root balls, there is a huge pile of just the roots and they are very heavy.  Oh we shall sleep tonight now though we don't know when they will come they have said  it is imminent.  They have a truck big enough that crushes it all so we are blessed.  

Since that was written Colin has worked on and on and moved even more, making the pile ever higher.  All is now done and hopefully today the site will be cleared, then on to the two trees.  Progress is being made that we can actually see and the site has been tidied up and left looking neat so we do not offend any neighbours.  

Saturday.  Danielle just sent a message to say there is a lot of noise coming from our land.  Time to get up and go and see!!

Gosh, in minutes it seems they have got rid of a pile as high as a house, well done our council, now just a hefty but worth it bill on its way to us.  

Now we will have the problem when we get the house built of keeping our new garden safe from the deer that roam at will.  My ex boss is in despair over how many of her plants they have eaten and has had to put up really high fences to stop them jumping into various areas of her land. We don't want high fences, we want the spectacular views we will have from our windows and terraces so this is a problem we will need to overcome.  

The vagaries of ph.

I was so sickened to see that yet another person with ph has had her money taken away by the people that deemed she was fit.  They did tell her though that if she was depressed she would have been allowed to keep it,  when will they see that we change from day to day, from minute to minute.  

Just Tuesday I felt my day was a rich tea day.  I had at least got up and got washed, though not managed a shower or a bath.  I was in my  pyjamas when a friend called round and I got out of bed.  I couldn't say this was a wafer biscuit day though as I had at least managed to get myself so far before going back to bed.  She wanted to look at an apartment just a couple of doors away from me.  I know well the couple that were vacating it and they are lovely so I knew it would be ok to take her to look.  Well I walked the few steps to my neighbours  hugging the wall as if I was drunk.  On entering the apartment I let go of my friends arm that was holding me up from the side I wasn't hugging the wall.  I then sat on a radiator whilst my friend looked around the house.  Clinging to the walls I made it home again to the safety of my bed once more.  

So this is the world I live in.  You may well see me looking ok one day, or even one minute only for me to go "off" spectacularly the next.  So it upsets me when I read of some of my other ph friends being refused their PIP when they can show they can brush their hair or walk on a given day.  If we are to write down how we are on our worst day then the answer has to be we are just a blob in the bed!!!  We physically can't do anything and need help even to get to the loo.  The stress these tests cause our ph family is huge and they seem to fail to realise  that ph is progressive, we don't get better, just worse with time.  I wish somebody would open their eyes to the damage doing to these people before they keep heaping more stress and therefore more strain on them. 

I have a lovely friend who wants me to help her deliver leaflets for an upcoming event at our church.  Now whilst I would love to  she just doesn't  understand ph.  She thinks because I can manage to get around the supermarket with Colin sometimes then it will be fine and dandy for me to do it, I can't get through to her that in a supermarket the floors are absolutely flat, I have the trolley to hold onto to keep my balance and the air is not cold or wet.  Though these things seem tiny to her they are a huge advantage to us as it is a sort of safe environment.  She herself has had to collect me from this supermarket and drive my car home, take me to the doctor and then on to the hospital so I am surprised that she still doesn't "get it".  I live in a very hilly area where I don't believe there is one absolutely flat piece of land,  We shall see what she says when i try once again to explain to her my very real fear of "going off" when faced with the slightest incline.  

Two day  break 

Recently there has been an awful lot of stress going on with one thing and and another so we  have decided to go down to a lovely place for a couple of nights stay in a super little village called Castleton.  We managed, after a struggle to find a suite and it gets 9.6 rating.  It looks really nice and it does  have a tiny kitchenette should I not feel well enough to sit and have a pub  meal.  Colin is very handy at knocking a meal together.  I am really excited about this as we do have friends in villages surrounding this beautiful place so there is also the hope that we can get to see them.  We shall take my mobility scooter so that I can get around easily.  The weather does not sound as if it will be the best but if we get rained off we can always throw a few more logs on the fire and cuddle up and talk or play scrabble, a game we both love, Either way it is a win win situation as we leave all the stress of tree surgeons, house plans and minor operations due behind us.

Why why why!!!

One thing that drives me mad on Facebook is when we see posts from people saying they are in a black hole, or this stress is too much or simply can't take any more,  We are here for each other and though we do not wish to intrude on each other's personal space if they want things to stay close to their chest that is fine.  But if you want these things kept  private why broadcast how you are feeling and wait for us all to say sorry, can we help etc only  for them to not respond at all so we are left worrying about the person who posted.  I have personally written private messages to two people this week to see if I could help only to be ignored,  I then went back to the persons  post to see if they are ok only to see nothing!  So we worry about them and I feel pretty sure that sometimes the worry that got them down so much has left them and we are still feeling concern for them.  As admin I try to read every post, I take this role seriously and though I don't respond to every post I do try to make sure I do if there seems to be cause for concern.  I just give up!!!!

My rant is over as is this blog!!!!  We are expecting a friend over for a sandwich and a catch up so that will be nice, I will push Colin to post this before that as I know when the two of them get together they have so much to discuss. 

Go well everyone, I love the likes and any comments or shares.

Warm love. Carole xxx      


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  2. Carole, this was a thought provoking read as always. Nobody knows their time left. All we can do is live in the now. You are so strong and I'm glad we're friends, if only on fb.

  3. Kristi I am pleased we are friends too. I love,your posts and your little man watching him grow, the silly things he says and does, so sweet. We are away now and the place we are staying in is so lovely, just perfect. Just waiting for hubby to light the fire! Tons of love. Xx