Could this be an end to my trialling
As most of you will know the last five years of my life has been spent trialling or researching one med after another in the hope to find either a cure or another medicine to help us to cope with this dreadful disease. Please read this article though to the end, it is the one I am to be trialling either at the end of this year or early next year. Now in clinical development it is hoped to begin its next phase of trialling on humans. I know it sounds scary to be trialling meds, there is always the fear of the unknown but we must do this. I am counting off the months, not wishing them away, just counting them off, to the time when I will once again trial a medicine that is hoped will be the cure. One of them will be, so I just trial them all in certain knowledge that one will hit the mark and cure me of his terrible pah.
So here we have a couple of links about this particular hope for a cure.
If I have put this link up before I offer no apologies, some of the new ones will not have seen them and above all else we must offer them hope of a future without feeling so terrible poorly all the time. To live without hope is only half a life so I prefer to live with this hope of a cure. Yes, yes to you grammar buffs there is a lot of "hopes" in this paragraph but that is deliberate. Hope hope, hope, we cannot stress enough that we live in hope.
Our conference looms ever nearer.
In the UK, as I am sure in whichever country you live, this conference is always looked forward to so much by us all. A chance to meet old and new friends and to also catch up with all the news things opened in the world of ph. I always believe there surely cannot be anything new I can learn as I do my best to keep up with research into ph but no, once again they will astound me and have a speaker talking about yet another aspect of ph, either with the hope of a new treatment or talking about better ways to manage it.
When I was first diagnosed for instance we were told to be very careful of exercise, they were so worried that it would make our hearts work too hard and we could go into heart failure. Research however has now proved otherwise, all these aspects are talked about at our conference. I now know that to just be scared of working our hearts too hard or being sedentary is very much the wrong thing to do. For those in wheelchairs they have now said that some form of exercise is beneficial. Working the muscles even whilst sitting and watching tv can be done. Move your toes into circles, move your arms, do not just be the blob in the chair, help yourself. After all it is your body that does the suffering so help it to help itself so to speak.
At our conference we generally have a class about wellbeing in ph. I attended one where we were taught to exercise all our body whilst barely moving so really there is no excuse to not do something. Please, I know there is always an exception to the rule and if you are that exception then do not berate me for typing this, I am reaching out to the now over 700 people who read this blog, many of them, though not all are ph sufferers. We have a cd about exercise with ph and if you can get hold of a copy then I urge you to do so.
Stacie Pridden
My lovely young friend is still blogging, sill fighting and is still telling us not to give in. She is fighting to live the life she can and is very much supported by Mark, her lovely guy and her family. Please if you send her message do not expect a reply, write her message of support but not those asking questions as she cannot spend all her precious time responding to all your questions. Messages of encouragement though are good as there is no need for a response from her. I have absolutely no idea if she will be at our conference this year, I have not asked her but I know if she is she will be overwhelmed with everyone trying to give her cuddles. This in itself is such a dangerous thing for Stacie. A simple bug could kill her as her heart and lungs struggle to cope with everyday living. Please if she does make it, (though I somehow think she will not) do not try to give her support in this way.
Busy week
So much to deal with and so much stress regarding the house. As I always said Mr Sunderland has forgotten anything to do with the trees so there is no argument about this now. I have bought a bow saw so that my daughter can every now and again as they begin to grow back again remove the height immediately so as not to have to cope with this costly experience again, and of course the stress. We do have a chain saw but Colin will certainly not allow anyone but himself the use of this. When we called at our land on Saturday Danielle, Chris and Izzy were all in the plot looking at our now so wonderful view. I will get sone proper pictures to show later. They said that as the trees were now lowered on their plot they now have a lovely view of the horizon which is lovely to see in the morning. Hopefully at some time in the future a new owner of the house in front of theirs will reduce the height of two enormous cypress trees which will give them even more spectacular views of the hills in front of them.
Time out
With all the stress {yes there is so much to do with the plans now needing more work before going out to tender) we decided to take a little break and we went to Hardcastle Crags. Many people were walking by the side of the river, up and down over the crags, so very peaceful.. Some were enjoying picnics by the side of the water as it bubbled away making its way downstream.
Hardcastle Crags was once home to a railways and a cotton mill and is so very interesting. Right in the middle of the Crags there is a mill called Gibson Mill and this is where weaving was done over 200 years ago. This mill has now been restored and many enjoy looking into the past as its history unfolds.
This mill was built in around 1800 and was one of the first mills of the industrial Revolution. Though it only produced cloth for 90 years its time was not yet done, It then began a life as an entertainment emporium with roller skating and tea dances held here until 1940. It was then left to fall into a ruin until the National Trust acquired it and the restoration began.
It has no connection to the outside world for energy, waste and water. This property is the only one owned by the National Trust that is 100% renewable. Going to the loo here is quite an experience as the sign above the toilet tells ALL, yes men included to sit to use the loo. If you want to poo you sit at the back of the toilet, if you want to wee then you sit at the front. When completing what nature intended there is a big box of sawdust and you are required to throw a handful when finished! Yet still this mill has a tea room where all water is brought in from the outside daily in large containers!
Absolutely all of the energy is generated by water turbines and photovoltaic panels on the roof. There is no connection to mains electricity at all. When the water levels are low or there is not enough sunlight then of course there is no energy being stored. This then brings into use the batteries that have stored the power from when the water was at the correct height or the sunlight was sufficient to store the power. Of curse at times such as these the usage is monitored very carefully.
Everything here is recycled, there are no rubbish collections and the waste from the toilets is turned over back to the land once the tiger worms have done their task. It certainly makes us appreciate how our modern houses work with the flick of a switch.
Who can this possibly be
A picture of Izzy of course on one of her forays with her beloved grandad. what a great time she had wearing the costumes of bygone days. She has developed so much since attending school, coming out of her shell and making us laugh so much with her antics. She will miss us as we go away on one of our small holidays on Thursday. Our motor home will be loaded up tomorrow and food put in on the morning and away we go. We are gong down to Wales and then moving into the picture postcard places in middle England. Both of us can't wait.
I have a bug, a tummy bug and am ending this blog now as I feel so rotten. I intend to go and lay on the bed for as long as I like without feeling bad about being lazy and with the sick bowl by the side of me.
Take care everyone Thank you so much for always being there for me, for bothering to read etc. must go, bowl awaits.
Warm love
Carole xxx
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