Can you tell me you can watch without crying?
I never post my memories from years ago that show up on Facebook, never until now. I watched this video again and I did wonder just how many of these children are still alive today, how many had transplants and how many died before their transplant could be done. If you are a parent, a ph sufferer, a carer or have brothers and/or sisters please please if you watch nothing else today watch this video. it is truly heartbreaking to see this but it shows why we are in desperate need for a cure.
Meeting PH friend at last
Marcmarydyer, another ph patient and I talk often on Facebook ph pages and we have spoken a few times on the telephone, always a joy to speak. One of us, don't remember which one, made the discovery that we didn't really live too far apart, particularly if we both drove towards each other! So it was that we set the date to meet one morning in the lovely village of Hebden Bridge. Both having ph we could not be sure either one of us would be fit to meet when the day actually arrived so it was a pleasure that the disease gave us a bit of a respite and we managed, so very pleased.
I felt an instant rapport when I met both Mary and her hubby. Mark left us too it whilst he wandered the cobbled streets and strolled in and out of shops whilst Mary and I sat down with a hot chocolate. If either of us had any worries about there being stilted silences they were quickly dispelled. This was a ph sister that I felt at ease with instantly and the conversation just flowed. Of course the constant hospital visits came into our conversations, we are never far away from another appointment or blood test, we talked of the amazing staff at Hallamshire Sheffield where we both attend, we talked about children and oh so many things. I don't even remember how long we were in the cafe. We both spoke of how fortunate we were to have our lovely husbands to help and support us and we took our hats off to the ones coping with this terrible illness without a partner, we acknowledged neither of us could do this alone.
My sister joined us for a while as we needed to exchange presents and she lives in the village of Heptonstal so this was a very convenient place to meet and we all laughed about so many things. Gill my sister had bought me a gift. It was actually a heart shaped piece of jewellery with beautiful colours imbedded into this heart. These were actually my moms ashes! It sounds a bizarre gift but it is really pretty and it actually feels nice to know that my mom is close. She rang me afterwards to say what a lovely person Mary was and that we should meet up often. She need not worry on that score, Mary is now a real friend that I know in the flesh, she can't get away from me now!
The beauty of meeting up with somebody else with ph is that we know exactly how it feels, we know of the tiredness and the lethargy that comes with ph. We know of the pain in our hearts, the palpitations and of the sheer debilitating condition we live with all the time. We also know that we have to live the life we have and make every moment count so we were certainly not feeling sorry for ourselves! We laughed over the slightest things. For sure there will be man more meetings, this is a friendship meant to last. Thank you Mary for a lovely morning and thank you Mark as I know you are her carer and the chauffeur also!
Following on from this meeting I decided to see if we could meet up with more of my ph brothers and sisters and so to that end we are now in the middle of sorting out a date for a christmas lunch and catch up face to face. So looking forward to this.
Holiday booked
Well we risked it and we have booked or holiday to Javea in October. We have begun messaging or telephoning our friends to ask about a meet up. We were looking for a villa to rent for a week and hoped to put ourselves on our family Mike and Gill to see if they could let us stay with them for the first four nights as our holiday is for 11 days. The e mail that came back said that they are not in their villa and so we were welcome to use it for the whole length of our stay with the proviso that Colin cleans the pool. No problem with that so we booked our tickets and we fly out on the 19th October. Oxygen has been approved on board {I take my own concentrator but still need to get permission from the airline } fit to fly letter has arrived so I am so looking forward to going back and to make more memories in this place that is so special to us.
Accidents happen with low oxygen
Because we with ph have a problem with our lungs not being able to oxygenate our blood as much as the norm we do suffer memory loss. I know I can be told something one minute and forget it the next. So it was the case with the oven saga and how I was hurt.
Colin had decided to clean our oven and when he had finished a tradesman called , so he had to go and talk to him, leaving the oven door open to air. Although I KNEW he had been cleaning the oven I should have taken more care but I just forgot. The result was I walked around into the kitchen and slammed into the cooker door HARD with my legs. I felt so sick as it had really hurt me with the force. When I could stand to lift my trouser legs up I saw that one leg had the flesh torn away and was bleeding and the other had a big swelling and the blood underneath was clearly visible.
I just know that these bruises will take weeks to clear. I have declared that when we have our new home and my new kitchen my cookers will be higher up and with the doors that push under so this cannot happen. I know my friend Roy who lived upstairs often banged his legs on his oven door and I worried so much about him but it never crossed my mind would do a similar thing. It does emphasise though that we really are vulnerable due to oxygen shortage and need to take particular care.
My breathing is pretty rubbish today so I am feeling very lethargic. However there are things I must do so I need to muster up the strength to get bathed and dressed. Nothing I do though will give me the energy needed to wash and dry my hair so I will just wet it and leave it at that. The resultant curly mass will upset me but straighteners are out of the question.
I must confess here before I leave that I did question to Colin if I was making the right decision to trial yet another drug instead of going immediately back onto the iv hickman line. After talking about it we both decided to stick with our decision knowing we had a promise from Prof David Kiely that he would take me off the trial and immediately onto the line if he felt that my condition demanded it. All I can do is trust my A Team and hope for the best.
The weather here is beautiful, would love to do a canal walk, here is hoping my pressures get pushed back one way or another to allow me to do these walks again. In the meantime thank you all once again for reading, for the act of clicking like and or for sharing. I feel I know most of you well through Facebook so these likes mean a lot.
Love to each and every one of you and have a good day.
Carole xx
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