PH awareness month.

That's the way the cookie crumbles

I make no apologies for the posts I have put on Facebook this month.  It is ph awareness month so I feel it is my prerogative to post about life with ph, after all that is initially why this blog came to be in the first place, to get across to my friends and family worldwide that I am living, even whilst my body is steadily deteriorating with this invisible disease.  I have had a few up and down days as we do with this disease and as each day, hour, minute changes I liken it to a cookie, or as we say here in the UK a biscuit.

Do you dunk biscuits in your tea?  If you do here is a picture for you about my day with ph.  Imagine a biscuit, well not just one but three different ones.  Now the first one is the incredibly thin wafer used to put on the top of your ice cream sundae dessert or used to make an ice cream sandwich.  Now on a really bad day I am this wafer.  I look OK but try and dunk me, or in my case try to do anything and you would find that like the wafer being dunked in your tea that I very quickly fold,  there is just no substance, nothing solid to hold on to, nothing to work with.  For me that is a ph day, my wafer day.  It is called a duvet day where I literally do nothing, even the effort of going to the loo is incredibly hard.  I am not ashamed to say that on these days I sometimes do not even wash, let alone brush my teeth, the effort it would take to lift my arms to carry out these tasks, so easy for most of you is beyond me.  Like the wafer you put in your tea, before you dunked it then it looked just fine, the slightest dunk and it folds. It is useless.    

Now try a rich tea biscuit, a more robust biscuit and can be dunked in your tea or coffee quite easily and still for the first time come out looking whole, like the biscuit you first dunked.  Dunk it again and it will not be quite so stable but still you will be able to lift it out of your tea without it crumbling into a soggy heap into the bottom of your tea cup.  Now this day for me is a day I can actually manage a shower AND to wash my hair and get dressed.  I can amble quite nicely around the house. Try to overdo it though and like the biscuit dunk it for the third time and it is gone.  You overdid the dunking and now you pay the price as you watch your biscuit disappearing into the depths of your cup, urgh, not nice.  At least though you got two good dunks out of it before it was rendered a useless mess, some kind of a result I think. 

Well what about the ginger biscuit, a hard robust biscuit just crying out to be dunked!  Now this is a biscuit that loves the action of dunking and  then you enjoy eating a little before dunking again.  This can go on for quite a while as the biscuit becomes only slightly softer each time you dunk.  At the end you will be left with a small piece of very hard biscuit you hold between your finger and thumb and this piece you pop into your mouth and enjoy the crisp crunch of what is left of your biscuit treat.  Now for a ph patient, well for me anyway ginger biscuit day is a really good day.  Though my breathing is still not the best my legs do not wobble.  I manage quite easily a shower and hair wash.  After resting a while I can then manage to dress myself and after another rest I can style my hair.  Like the ginger biscuit though my day has not yet done.  I can manage to do a little shopping, walk a little on the flat and maybe even meet up with friends for a lunch out.  'This ginger biscuit day is a day to be cherished. Sadly though like the ginger biscuit cannot keep on being dunked, getting less stable each time so my day goes.  Slowly I begin to crumble until at last I have to concede, my day is done by early afternoon.  Like the ginger biscuit though and that tiny morsel of deliciousness left at the end what I have left is a delightful head full memories.  The taste of the day, of feeling able to do things stays with me when I take to my early bed and I smile at what I have accomplished.  

Everyday living taken for granted before the world of idiopathic pulmonary hypertension came my way talked about in just three simple paragraphs and referring myself to a biscuit!!!!!  Well so be it and maybe the next time you dunk one of your biscuits you can have a thought for my ph family living with this and hoping each and every minute that a cure is found.  This is what November is all about, binging awareness about each and every one of us living with this disease so please just bear with me this month when you see my posts about ph.  

Moving day

Saturday was the day my daughter and her partner moved two houses into one.  Everyone involved with the move worked incredibly hard to make this as easy as possible,  Whilst there was absolutely no way I could carry boxes or move furniture I did help a little where I could.  Though this only involved being at the house to let the guys delivering new electrical appliance in and going shopping to get more cleaning tackle I did feel a sense of achievement that I had played my part, albeit just a tiny part in the move.  I also saved some time for them collecting Izzy from school, a role normally left to her beloved grandad.  He was unavailable to collect her as he was on plumbing duty and had gone to collect a vital piece of equipment needed for the washing machine. 

This was the day that I met for the first time the mother of Chris, Danielle's partner and we instantly felt at ease with each other.  It is lovely to feel such a rapport with Joy  as obviously  in the future we will meet often and I am sure will have plenty to talk about.  She liked the house too, as indeed I did and will be very interested to see the work evolve as they change things about to put their own stamp on it. Thankfully it was a ginger biscuit day!

PH awareness day at Sheffield

Well there will be merry time going on at the Hilton this coming Friday as the above day is to be held on the following day at this hotel.  A few of us attending, aware that we get extremely tired travelling etc. have decided to book a hotel room so we are refreshed when we attend the above event.  We are so looking forward to meeting each other again and I am sure we will have a lovely time playing catch up.

At the event talks will be held on the future of ph, new research and other things that involve us all.  I know there is to be a section about the importance of trailing but as you must know by now I trial often as and when I can.  There is a trial I am keen to talk about with them but will not put it on here just yet, I want to get my head around this particular trial.  I shall definitely be going into the room marked trial after the talks to discuss this particular one in some depth.  

Tooth fairy

I did a post about Izzy losing her tooth.  Well there were suggestions as to how much the tooth fairy would leave her.  Izzy wrote a letter to the tooth fairy and I believe she was rewarded with a £1 coin, that is plenty I believe, after all there are lots more teeth to come out yet!  

House plans

The architect now has his contract signed, sealed and delivered by us so he is going to go up to the plot to take measurements.  I cant say I am excited yet as of course there are no plans drawn up at this stage.  My excitement will be when we get the preliminary plans and then have to jiggle things around to make them to our liking.  In the meantime all we can do is sit tight and hope he takes into account all of our wish list for this build.

Finishing on a post from Chris LaRose Mev

http://pulmonaryhypertensionnews.com/social-clips/2016/09/22/symptoms-of-pulmonary-hypertension-explained/

As this is ph awareness month I want to start and finish on ph related matters.  Please open the link to read this as it gives an insight into ph, I pray you are never in a position when posts such as this become part of your daily reading as you try to get your head around this terrible affliction.  

Another PH Message

http://l.facebook.com/l.php?u=http%3A%2F%2Fsumo.ly%2FqCnP&h=yAQGrTHrl&s=1

Sending warm love to you all, I hope that if you have snow as we do here in Yorkshire you keep warm and well.   

I make no apologies for asking you all once more to click like if you have read and approved of this blog, it means so much, it truly does.  

Carole xxxx