PH Brothers and Sisters Unite
Many thanks to all of those that contributed to the raising awareness of ph campaign going on right now. Each time I open up my computer I see posts, blogs, awareness posters etc about our fight to get this seen as the terrible rare illness ph is. Worldwide they just keep flooding in. How amazing and it proves we work so well as a team. Together we went into the month of November with a determination to try to raise awareness for this little known disease and I think we smashed it. I am so proud to belong to such a group of amazing, resilient people with such a phighting spirit.
Please ignore the videos and clippings below most of you as I know you have seen my bit of raising awareness. I am putting them in for those that didn't. I was very fortunate to have been asked by the PHA Association to do my bit and Mary Ferguson was assigned to the case! She came armed with her video and her writing pad, plus her recorder. How easy it all was. It was just like talking to a really good friend, somebody I had known for a long time. She made it all so easy to talk about ph and afterwards did a really good job of editing it.
Link from my Friend Tess: -
Izzy was thrilled to be in the Courier and the Yorkshire Post, plus Brighouse Echo. In fact she felt quite the celebrity when she went to school and many of her fellow school mates kept telling her she had been in the paper.
Her form teacher asked her if she knew she was too. She came to be in the picture with me as Mary, quite rightly said it was evident that Izzy played a huge part in m determination to push back ph, to keep going for her sake. Mary was so right, I make goals and milestones to reach with her and then keep pushing back these goal posts, moving ever forward in life with her.
I was pleased though that my illness had been picked up by the school as on the days I just do not want to drive to school and for whatever reason I am taking grandads place in collecting her my mobility scooter comes into play. I did wonder if people in the school playground just thought 'i was using it as a fun thing for Izzy to ride home on! Now hopefully they can see that this piece of kit is an essential part of my life. Though I love it when I do not see it for weeks I also love the fact it sits there, a sturdy, trusty steed to take me where I need to go on the days it is needed.
Where will I be headed next
It wont be long until my first year post denervation is up and I will be free to begin another trial. I know that the one I hoped to trial is not yet ready so just what will I do next? I am looking forward to talking to my specialists and discussing what is in the pipeline. It may well be that for a few months I just cruise along with my ph until the one I really have been hoping to trial comes to fruition or it may be that I meet the criteria for a different one. We will see but you can be sure I am ready and waiting to see where my next journey with ph takes me.
Just love this place
A couple of weeks ago I was at my usual haunt, between the river and the canal. This tiny village is called Copley. about half a mile from my home. This is a beautiful place, cottages that look tiny outside but are deceptive and prove to be large inside. Lovely neat gardens. The houses there today were built in 1847 when the Akroyd family moved their worsted mill to the site and the model village was built all around it. The mill is long gone but the cottages remain and outside have not changed their appearance since the day they were built.
Lying in the valley this place has so much history. The first Copley Hall was erected as early as 1050 and then was rebuilt by Sir Henry Savile in 1421.
I know some of you love a good ghost story so look up on google Ghosts and Legends of the Lower Calder Valley, or just look up the history of Copley, Halifax. it really is fascinating.
Anyway for two years I had been unable to get across the river due to it being swept away in the floods. At last it has been reconstructed and I was able to go over it and take pictures of this tiny toll house at the side of the river. I was so pleased to see it had remained intact. I love the sign that still exists about the cost of taking over the bridge sheep, cows etc . These animals would have crossed the river and clambered up the steep bank to the top of the valley and would then have been free to roam on Norland Moor. { I think the best bilberries ever are to be found on these moors. I myself spent many hours with my family picking these tiny berries and taking them home to our mom who I knew would turn these delightful fruits into the nicest pies ever. } So I managed to get a picture of the toll house and thought some of you in America would like to see it as I know well how you love history.
The sad demise of Hammy
Hammy is, or was the hamster of Izzy. A much loved animal she was treated to a palatial home and many toy and treats. Nobody could have taken better care of her and she lived a little longer than the expected two years. We all knew the end could not be far off as the deterioration in her was plain to see. She was losing her fur and she walked very slowly and, it seemed painfully. It got to the point where she could not walk to her water and so my daughter put the water right in front of her. Izzy watched all of this with dread. She loved her Hammy and was dreading the day she would no longer be part of this world. We had spoken to Izzy on the telephone the evening before and asked her how Hammy was. Her answer was that she was clearly getting worse but that she was "all right" The following day was a different matter.
She turned up here as we were having her for the day with tears in her eyes. Her mommy had just told her that sadly Hammy had died in the night. The tears were very real for a beloved pet. We sat around the table and discussed what was the last thing we could do for Hammy and of course the answer was a funeral. We talked to Izzy about the inevitable fact that living creatures all die. So with respect we drew pictures of Hammy living her happy life rolling around the floor in her ball and crawling through her tunnels in her huge cage. She wrote to her about the pleasure she had every time she saw her and then the last thing needed was to make a cross ready for her burial today. I found the perfect twig, long and straight and grandad washed it and broke it in the appropriate place so he had two sicks to fashion into a cross. Out came the twine and a super cross was formed. Now all it takes is something that will disintegrate when in the ground quickly to wrap her in and a few soft words spoken over the site where she will be laid to rest later today.
Its a lesson learnt. It hurts when somebody or some creature we love dies, how well we know this but at 7 this is the first time she has really experienced a beloved pet leaving this life. I think between us all we dealt with this pain very well and I hope it helps her in the future when she suffers other inevitable losses.
Horrible
I had a dream. We all dream don't we. I generally remember mine, I always have done even as a small child. in this dream I know I was trying hard to breath, I was looking at a pictures with somebody, I think it was my mom and I just couldn't get my breathe. Struggling hard I woke up and for just a split second thought "gosh what a horrible dream". It was then I realised the reality, that my dream was in actual fact my living nightmare. I DO struggle with my breathing and it is in fact getting harder some days. I woke in the middle of the night to terrible pains in my right lung, scary. Other days I don't notice it so much. It brought back a memory of my dad who woke to a dream in which my elder brother died. For a split second my dad thought what a horrible dream he had then realised it had in fact been born out of reality as we had lost our brother.
I know I am pretty fortunate that right now I do not take any supplemental oxygen except for when I am flying but I also realise that my day will come. Right now I am getting more short of breath very easily. I do then test my oxygen levels and they are ok, my heart rate rises, as does everyones but it then drops down as it should so it puzzles me. I tire more easily, Colin sees this so easily in my face and I am afraid my bed calls me so much more than it used to do. Once I rest on the bed though I do not sleep, in fact I sleep for only a short period of time in the night too. So quite what is happening, just what is going on inside my body I do not know. Time will tell, we shall see. In the meantime I try to continue to be as busy as I can be within my limits. I refuse to give in to this illness though I do pay the price for being so determined sometimes, as indeed we all do.
The last two weeks have been taken up with hospital appointments for bloods, physiotherapy for my ankle and the dentist. Though my dentist and I were hoping to save one of my teeth it has sadly cracked and it needs to come out. I hate the thought of this. No I am not bothered about pain etc but just the though of losing a tooth. All because I bit on some uncooked rice when on holiday in Scotland! The consequences of that has led me to an appointment on the 18th December to pull the said tooth. Three appointments I have had to try to sort this out. Antibiotics were put into the root of the tooth to try to stop an infecion, this worked but sadly the tooth just kept cracking more and more until we have reached the end. I can't have it capped due to it being cracked so I have to have it removed and a false one on a plate! How I hate the thought and for a few days, well only three I will be without a tooth and no plate. I will not be venturing far from home then I can assure you.
House news
Despite the weather it is certainly growing! We now have clear indications of each room and it grows daily. The dry stone wall we had straightened looks really good, I am so pleased with the end result though disappointed in the guy that did it. He worked hard and diligently until the final day when he rang and asked to be collected to go home. We were rather shocked to see that for half the wall he had not put back the coping stones, the vital part that holds the wall together! He said we needed to buy more though it was obvious to Colin that there were some scattered around the detritus he left behind. A good workman clears up after himself but Mick certainly did not. however we let him go and Colin went to work. Moving and changing the positions of the coping stones on the top of the wall and putting them in different positions he figured out how to get the best result. He picked up the discarded ones and placed them on the top of the wall. The result I have to put on here as I am so proud of how he completed it. We have so much of this wall, in fact it surrounds ours and our daughters house. Fortunately all the rest is now and straight so this is a job that will never need to be done again for hundreds of years.
Joining the 21st century
As we begin from scratch with our house we have decided to go with all the new gadgets that are around now to see who is at your door, to talk to them even when we are miles away etc. To that end we have also decided to buy Alexi so that it will make it easier for me to play music throughout the house just by a simple voice to Alexi. I love music but struggle to find the piece I want to play so how wonderful at the sound of my voice and an instruction given she will heed my command and play exactly what I want to hear when want to hear it. I will tell her to turn off the lights etc or turn them on at will. I am quite excited to be joining in with the youngsters with these new gadgets. Cannot wait to try them.
Well another day begins and I must get washed and dressed and get on with it! I hope you are all doing ok but remember there is a big celebration of Christmas coming up so keep some energy in reserve.
Warm love to you all and again many many thanks for the comments, the likes and the shares. It makes my day to see you have read my simple blog from wherever you are in the world.
Carole xxx
No comments:
Post a Comment