Am I living or dying?

What a question

I asked myself this question after receiving a few private messages from some of our newly diagnosed pulmonary hypertension friends.  For me the answer is very simple, I am living!!!  We all have choices to make in life and mine is to live even whilst I have this terrible disease.  

I think my first year of diagnosis was the hardest.  I could never get over the fact that yes, I had been told I was dying and the reason was that I had this dreadful condition that would, I was informed, slowly suffocate me from the inside.  How terrifying that was.  Can those of you without this disease imagine the horror we all feel when dealt such a tremendous blow.  So I admit my first year, living with the hickman life (this line was what eventually gave me a life back) was a life where I was not living but dying.  How terrible it was too.

Now seven years down the line at the end of this month since diagnosis I see things so much clearer. Even since I was diagnosed more medicines have been added to the arsenal of the ones we have, being the weapons we need to control our illness.  Even as I type this research is madly going on all over the world to find a cure for this disease.  More specialists are choosing to come into the world of this oh so fascinating disease of pulmonary hypertension.  The medicines I take have helped me to live a life whilst fighting the battle I face every second of every day.  Fight it I will and I aim to try to do all I can to live as normal a life as I can whilst living, yes living with this illness. 

I wake each day, after a terrible nights sleep I admit to a fresh day dawning. With all of its hopes and possibilities before me.  I do my best to concentrate on the things I can possibly achieve rather than the negative.  If my ph is having a day where it raises its head too high above the covers then I do what I must, I rest, I take a duvet day and listen to my body when it screams for me to give it a chance to "come round" a little , I help my body to deal with al the stress of ph.  I always assume that a better day will come, I just need to wait a little time for it to come around again.   

So in answer to the question am I living with ph or am I dying with ph there is no question in my mine.  I am living with ph.  I refuse to be defined by this illness.  Just remember all the medical knowledge that continues to open up about our illness.

Nicole Burish sent a link (Below) to a list of the 25 secrets of people with chronic illnesses and for the most part it defines those of us with ph.  I found it a fascinating link as I opened each page and thought "oh yes that is me"   I also feel that the new ones whose families have not quite "got" what this illness is like as we generally look fine should show it to your families and friend as it explains  such a lot about how we feel from day to day, minute to minute.

https://l.facebook.com/l.php?u=https%3A%2F%2Fthemighty.com%2F2016%2F02%2Fwhat-its-like-to-have-a-chronic-illness%2F&h=ATMSjVJGNT49QeJ3ruO84cGfVar_bfqBkLRMfpD1b1RITDrFXP8f70Z7Hd94_tazOOYaAc9IAX3wLuTTVeI8BiiWizt7Dk9qdUdhchhePDYmtNT02QSLJ5597UBEq60sNblmYV243XvZj8dM&s=1

So a new day has dawned.  I aim to get this blog off in the next couple of hours and then see how I feel.  This something we cannot know until we have gone through the task of getting washed and dressed as it could change in the time it takes to do these things.  I try to be optimistic though rather than pessimistic and think I shall take a trundle dow the Hebble Trail to see how the fruit in the hedgerows are coming along.  

My hope on this gorgeous sunny morning is I shall "live" this life and enjoy the sights and sounds and smells of the countryside on my doorstep.  As I weave my merry way down the trail I know I will hear the rustle in the bushes of the tiny animals that seek to hide themselves from me.  I will hear and see the stream as the water flows gently down to join the  River Calder and I will hear its gentle splashes as it encounters rocks and stones, I will see the sun move around the sky and if I look up at the correct time I shall see the trails in the sky made by the vapours of the aeroplanes taking or bringing back the holiday makers.  My mind will take me into the plane and I will "see" some of the occupants and their anticipation of what lies ahead when this journey is over.  I shall take my little sack of sandwich bags and remove one ready, hopefully to take a few of the fruits I shall find in the hedgerows and add them to a crumble or a pie. I am never greedy, I take only small amount as I wish for others to enjoy this fruit too.  

Once again I answer my own question, Am I living or dying?  You tell me what you think and ask yourself the same question.  I hope your answer is the same as mine.  Don't give in to negative thoughts.  Stay strong, stay positive.  

House plans

Well it was nerve wracking  I will admit to you all.  So much depended on answers we were to get from our builder and believe me, though we had gone so far down the line with the purchase of the land, the removal of the trees and most hedges we truly would have backed out and the eleventh hour.  

The meeting went well and as Colin put a tick against more and more of the questions he had prepared i could feel my sense of anticipation growing, All appeared to be going well until one of  the very last questions and this needs yet to be answered before we go ahead.  This question was how far down will they have to go to make the foundations safe.  My daughters house is built next door but the question asked by our architect and the builder is "why did the original builder not build on this part of the land"?  Did they know something we have not yet seen, is there something we do not know underneath this land.  It was farmland many years ago, hence all the beautiful dry store walls surrounding it.  It is in an idyllic spot with amazing views of Norland Moor spread out in front of us, hills I used to walk up often. We know from previous surveys that there is nothing poisonous on this land The question needs to be answered and this requires a man and equipment that digs holes deep into the ground to determine the levels of where the clay is to build a firm foundation.  We anticipate this will be carried out this week and if so then the answer is an absolutely wonderful YES, please begin the build. 

I asked the question of when he could begin and the answer was September or October,  When asked for a completion estimate he says it should be a six month build.  I add on to that another three months.  I know from experience they never go to schedule.  The beauty of this builder is that he has also factored in a lovely glass wall around our outside terrace which will give us the feeling of cosiness even when the wind is blowing.  As we are having bi fold doors it means I can enjoy an unbroken view of the hills in front of me even when it is blowing a gale outside.  

We left his office with a firm handshake and the promise to him that if the holes that are bored turn out to show all is sound then he can go ahead!  So exciting and something else to strive for, to look ahead at good times after the stress of the build.    

Izzy canoeing

Colin used to be a canoe instructor and his son followed in his dads footsteps.  Sea Scouts is a place that holds many memories from his side of the family so we wondered, as Izzy is now quite a capable swimmer if she would care to join this club.  Colin took her down to see the children canoeing in the canal, dressed with all their water gear and wearing of course the life vest. She was fascinated and enjoyed it all so much.  Which puzzles us as to why, when Sara the group leader hunkered down to her level and asked if she would like to go in the canoe Izzy responded as she did.   Sara is so lovely and said she would find a vest to fit and she could experience this.  The answer was a very firm "NO THANK YOU"  when asked why by Colin she said she did not want to go into the cold water!  Of course the children must experience what it is like if the canoe capsizes in the safety of the group.  Colin tried to tell her that it was unlikely they would capsize, these children had been MADE to rather than it just happened.  Still no chance so another outdoor activity crossed off the list.  This child is certainly never going to be athletic or do things that take her out of her comfort zone ......... ah well she is lovely and healthy and enjoys life so we can't have it all.  

Such a delight

It was with great pleasure that a young, well not so young man as he reminded me came to visit last week.  Though I knew this young man since the day he was born time plays its tricks and I had not seen him for over twenty years!  I had a little idea of how he was doing as I picked things up when I would go to visit his brother but never actually saw him.  We had such a lovely time catching up with the years. He is now a grandad and I found it was lovely to talk about how his life has unfolded over time.   I think the last time I saw him he was in his early twenties!  The coincidence was that he  along with his dad, worked at the nursing home where I now live. Though the nursing home was pulled down and our new apartments were built in its place what a coincidence that he knew exactly where I now lived and walked the same gardens when he worked here.   It was a lovely start to last weekend and I am looking forward to meeting up with him again, hopefully we will not leave it so long again!  

I will leave you now to begin your day or go to sleep if you are one of our far away ph member and friends!  I shall get ready to begin my day now.

Please take care, the flying ants are such a nuisance right now and today also the weather is supposed to be very hot, something we do not tolerate too well with ph.  

I love and leave you all again with thanks for the comments and the likes for this blog (if indeed you did like it, maybe you didn't) though I hope not.  

Warm love to you all and thank you so much for being so supportive to me when I post something.  

Carole xxx

Colin just arrived home from the gym with the words "the gypsies are back" What horror as we will again see the mess and destruction and once again the children cannot play football on here again.  I hate it I really do.  I hate the mess and I hate how they destroy all the beauty surrounding them.  I despair, my day has gone from good to bad with that one sentence.  Last time, well every time to be honest the allotments are raided and all their bounty taken and the butcher had his shop broken into.  Whilst we cannot know for certain it was them that did this it follows a pattern.  All is well,  then the gypsies return and destruction and theft all around.  Gypsies are forced to leave within a month and all is well again, though lots of clearing up to be done first.  Hurting.