Saturday 4 March 2017

A brilliant ginger biscuit day post denervation

Denervation again.  Once again I completed all of my exercise regime, the class were so pleased they applauded me for it so I smiled at that.  Again I went on to do a small shop at my local supermarket on the way home.  Those these sound like very small steps believe me for somebody with ph they are quite an achievement, in particular as I had been told at my follow up that I had deteriorated since my  study for DCA.  Of course I knew this but it was so pleasing to complete this class. I can still feel my breathing being drawn deeper into my lungs.  I love this so much that I find myself just breathing and feeling how far it goes, it sounds odd I know but my ph family will understand, it will resonate with them.  

Spoke to number 13 who I knew had been eagerly waiting my last blog for news of my follow up.  It goes without saying that each day is a day eagerly ticked off on his calendar until the 27th of this month when he has his done.  I well know what it is like to wait  just longing for the day to go by,  a step closer  and his head will be a jumble of thoughts.  By the way for those of our facebook brothers and sisters his name is Harry Dagger if you want to see how he copes with this.  He also comes under the name David Garcia, I have his permission to use his name on here.   

We discussed just what life is like with ph and how difficult even the smallest task can be and we also discussed the straw test.  This is to try to show people not living with ph just how difficult our every day living is.  I have touched on this before but many will not have seen it so here goes if you want to give it a shot.

Place a straw in your mouth whilst holding your nose.  The only way you can breath now is through this small straw and believe me it is difficult.  Now try to do a small task, maybe walking upstairs a couple of times or, if you put a peg on your nose and have two hands free then a job around the house.  You will soon begin to feel your chest getting very constricted.  Now try and imagine all of your life living like this, we have no options.  We cannot take the straw out, we cannot unplug our nose, we are stuck with this  Our options are just this..... learn to live with it because it is not going to get better, it will worsen.  Many of us are not eligible for transplant so we do not even have that hope.  Those that are eligible will sadly never get the chance, not enough donors to go around.  Some that do get offered the transplant will not make the journey, the enlarged heart just gives in, too much pressure and it just cannot cope any more.    If they are fortunate enough to receive the new heart and lungs, or in some instances if the heart is not too damaged then just the lungs these people  live forever in a world where rejection is a great possibility.  

So there you have it, do we hope for the donor gifts if we are offered them and take all the worry on board that comes with them or do we try anything else that may just give us a glimmer of a slightly better life,  though this in itself comes with risks or do we just sit and hope that a new treatment that just involves popping some pills will be around the corner.  The pills we pop daily in themselves give us so many side effects, horrendous ones, so bad that some people just cannot tolerate these drugs themselves and choose to just let nature take its course.  We with ph are on a very rocky road and some will slip along the way and we will lose them.  This is why we daily look for any news in the treatment of ph and hope daily that the cure is found.  It will be found for sure but the question is will it be too late for us, will it be so far in the future that many of us will not be around to receive it.  It is a tough journey we are all on. 

This addled brain of mine. 

Many of us with ph know that our brains are not very sharp any more, that we mix and muddle things up.  Though we know what to say or what to write it just either doesn't come out or we do it all wrong.  I certainly suffer from this but the most recent one had me wondering if I was oxygen starved or just plain stupid!

I decided a few months ago that I wanted one of those mirrors that magnify so that it would make it easier to pluck my eyebrows.  The mirror sat in my bathroom and each time I tried to use it I was very disappointed, it just did not  appear to be any stronger than any of the mirrors around the house.  I wondered if I had been sold a dud from my local T K Max and kept meaning to take it back but just never got around to doing it  Just a few days ago I used my electric toothbrush and put it back on its charging stand before I remembered to turn it off.  The result was a mirror splattered with tiny droplets of water as my toothbrush merrily sprayed itself all around.  I wanted to try the said mirror again but now it was so badly splattered with the water from my toothbrush  so I flipped it over to the other side and HALLELUJAH the light bulb moment, we had a magnifying mirror.  I had absolutely no idea that the answer was so simple as a quick flip.  Now whilst this made me smile it also made me feel sad that the sharp  person I used to be has gone, disappeared in the mists of time, into the world of ph.  How I hate this illness for robbing me of so much, so many things taken for granted before now become a chore. I well know the frustration we with ph live with on a daily basis.   


It is now early evening and I have to say it has been a busy day for me what with one thing and another.  I had a few jobs to do this morning and Colin was going down to the site of the new house along with a friend to clear some shrubs.  What we did not  want was a digger just coming in and destroying them.  We needed them to go in places we wanted to keep private whilst work was going on.   Busy time for both of them but I too kept myself doing things all day.  One pleasurable thing was to go an introduce myself to the 94 year old gentleman who lives in the bungalow next door to our land.  What a gem he was and as he showed me around his beautiful well kept home I asked him who cleaned it for him.  His answer was that he did it all himself.  I was truly shocked as it was spick and span.  He unlocked a door to show me the bedroom he has never slept in since the death of his beloved wife 11 years before. He said he just could never stand to sleep in that bed again and the memories they would bring if he did.   I am happy he will be our neighbour.  

 Anyway ginger biscuit day, so I shopped,  called at our land, called next door and then came home and unpacked shopping.  I put on a wash and then I went to collect Izzy from school to take her to the dentist.  This time the news was good, her new teeth seem to be coming through with enamel on them, what a blessing as it concerned me that as her baby teeth had none the second set would be the same.  Panic over.  

After the dentist it would not have made any sense to take her back to school as she would only have been back for ten minutes before I would have had to collect her again so we went off home to her house. She went onto our land and helped her grandad move some logs to the side of the plot {very small ones for her!} and she just loved it.   I made her a simple tea and then supervised her bath.  Home again and now having a well earned rest but yes, a ginger biscuit day for sure.  I bet I sleep tonight.  

I think that when we have a "good day", or ginger biscuit day some people will  think it is like their normal day.  This is so not true.  Though we may be able to perform certain tasks it is still with difficulties with breathing and leaden limbs, we have just learnt to accept this and consider this a good day.  I can assure you that were a "well" person wake feeling as we do on our ginger biscuit days you would consider that you were coming down with a bug or flue and barely attempt to do anything.   

I can't say that since denervation i have not had any bad times because i have, times when I feel  so exhausted and the slightest thing seems to be too much bother as I know I just would not be able to complete the task BUT still my breathing feels better, still my cough is not so bad and still I seem to achieve a little more than I did before.  Is it the placebo effect,  I do not know and as yet I have not received any news of the MRI I had done so who can say but for now I am content with the way I am doing.  

Whilst on our land I picked some daffodils and gave them to Izzy for her bedroom, a lovely touch of spring for her to see in the mornings when she wakes up.  

Our Admin Paul


Our admin in America Paul David Kushner does a great job being an admin for this group and he has just changed his profile picture.  As he himself has posted this on Facebook he will hardly object to my posting this gorgeous picture of his so adorable twins.  I take my hat off to both the proud parents, so beautiful are these two babies.  As he himself has ph I know they will give him something to work for, to strive to keep as well as he can and to hope for a cure in the near future.  How incredibly sweet.  I am sure you will all wish him a very happy future for himself and his wife as the family have now become 4!!!!  Go well Paul and enjoy.  

I am smelling delicious things coming from the kitchen as Colin is cooking our evening meal, he does all the cooking these days so I will take my leave of you all here and ask if he will post this for me after supper.

Warm love to you all and stay as healthy as you can.  Once again I make no apologies in asking that if you have read this missive of mine you click like or feel free to comment or share.   It really matters to me.

Carole xxx

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