Two nights in a row I have slept for over six hours straight! While it doesn't sound such a big deal for somebody with ph who does not get much sleep it is HUGE. The benefits of sleep are a hundred fold and I certainly feel like I can achieve something again today. Colin is away in the motor home walking, biking and taking photographs so there is only me to deal with things so I am really pleased and looking forward to how it unfolds.
It is a good job I am feeling good as just another thing has happened to stress me. The loo in the en suite has decided to play up by not always wanting to flush. I have had to resort to filling a milk carton with water and pouring that down. Definitely a job for Colin on his return. It certainly won't be on his wish list of things to do but a very necessary repair job definitely needed.
Izzy has been poorly, she had a tummy bug on Friday and now her glands are up and throat is sore. As her mommy needs to work and Chris is very busy decorating the lounge with his mom Joy I am having Izzy here. The carpets are due to arrive at the new house so it has been a busy time for the family, they can well do without a poorly child. I am looking forward to having her here with me, poorly or not. I have some lovely friends who live two floors down one of them was a matron when she was younger and is always on hand if needed. It is very reassuring to know that she is so close.
PHA UK Association
Wendy Hasnip shared this link from the above association and I am posting it on here as I think it is very concise and tells everyone clearly that because we look well it does not mean we are not seriously ill. I always say the only good thing about ph is if it takes me at least I will look good dead!
Denervation and ph
I have been researching and talking to somebody who had this done, and another ph friend who is having it done shortly . Whilst at first I thought this was too scary a procedure, seeing Barbara, the first in the UK to have this procedure feeling so much better has made me look at this in another light. As more people are having it done I believe it will become more popular IF we see people improving with their ph. It must be said though that the criteria needed to have this treatment certainly will not include many. It is hoped to become a treatment for people who have tried the oral meds and the i.v. treatments and they are beginning to have no effect. Transplant is not for them so they are hoping this is another option.
This procedure works by deactivating some of the nerves around the pulmonary artery. The hope is it MAY then reduce the pressures in the lungs. It has been used to block the nerves in the kidneys of 43 patients so just maybe it will work for us. This is a roll in phase so the first three patients, our very own Barbara who was the first to have this here had two ultrasound treatments but they are hoping to go up to maybe eight as they see success with the treatment. Some people show concern in that our body heals, will this heal and then go back to the normality for a ph patient. We can't know yet, the procedure is so new but thanks to such as Barbara who was brave enough to go ahead with the first one time will tell. She will be closely monitored to see and I for one look forward with bated breath to hear about her progress. Go well Barbara C and thank you for going ahead with this. Trying to find new ph treatments is always on our agenda so we are fortunate that we can learn so much more with this treatment.
As this day looms I truly hope I can keep on sleeping well as I am hoping for a good day on Friday. I know many now shop online when this day arrives but I like to go around the shops in the morning with my son. He lives in Leeds so he can help me and also he gets a new outfit, jeans tops etc. The shops are so quiet on this day , brilliant for mobility scooters. It is so strange to see the usually bustling city of Leeds almost sleeping as people want to stay away from the shops for fear of it being so crowded, perfect for me as I can go "off" when trying to shop so the fewer people around to stress me the better.
We have not heard anything yet from the architects planning our new house. I do hope they are getting on with it as we are hoping to begin the build in spring, I am longing to wake each day knowing my daughter and granddaughter and family are just metres away, looking forward to when the children can just run backwards and forwards between the two gardens, so much to look forward to. The fact that we will have a garden gives me so much pleasure too. Our garden here is lovely many people stop and admire it but as it is shared it is not the same. I read a blog by Kath Graham entitled All things garden and it makes me long more and more for our own. We have been spoilt in all our houses with having lots of garden just for us. Can't wait to be in that position. again. I just hope the stress of getting our house just right does not swamp the enjoyment of the whole project.
I am watching the wonderful gardening programme by Carol Klein, she is an amazing gardener and her knowledge of plants is just phenomenal. I wish she was a friend of mine, She would create just the perfect garden for us.
I have a few friends who are just going through reassessment for this benefit. I can see first hand the stress this creates leading up to the day of this. I find this such a cruel assessment as we know we are not getting better. Why do they insist on torturing people like this and thereby making the condition even worse. I know Ian Armstrong who heads the PHA UK association gets so angry at this and the damage done to patients needing to keep going through this. I just thought I would tell you of one thing he told us at our PH awareness day. He said you must NOT put down on your form the result of the 6 minute walk done in the hospital. This walk is done in a safe environment and we are being pushed and our hearts deliberately worked much harder than is the norm for us. It is certainly not how we could perform on a day to day basis without the medical equipment and the people who do these assessments have no idea of the strain on our hearts and lungs as we are such a rare breed. Before you fill in this form think carefully, maybe talk to your ph nurses to make sure you get across to the assessor just how difficult doing anything is with this illness. It is not right that they can judge us as they do not understand our condition many are treated unfairly when going through these forms and are deemed to be fitter than they are. I hope something can be done to raise the awareness with the people who make the decisions that effect the lives of our ph family.
I have never understood why people bully online or troll people. I don't have the mentality that they obviously have, The fact that they do not show their profile shows to all that they are just liars, needing to get attention from people they have never met and are unlikely to ever meet in their lives. They are incredibly sad people who really need help physiologically BUT not everyone is strong like me and we see more and more young people actually committing suicide because of these terribly sick people. I wonder if anyone has set up a society for the young being trolled so that they can get support and come to understand that these are sick people and that they are not worth the time spent thinking about the nasty things said to them. Trolls are insecure people who can't stand to see others happy and try to ruin their lives. Personally they make me laugh when I am trolled as it means I am getting to them in some way, the more they write the more I know it niggles them to see my blogs. If I was well enough I would love to set up a society to help the young who are so hurt by being trolled. Does anyone know if their is such a society and if so please post on your Facebook pages to give the young ones the help needed,
To any young vulnerable people reading this just always remember that if the people saying bad things about you can't show their faces and cannot show where they are from, who their friends are etc then just ignore them, they are just sick, sad individuals who do not deserve a second of you time.
Izzy came for the day feeling unwell as I said above. We had a lovely time together cuddling up on the bed and watching planet earth, we both love this, When she began to feel a little better she helped me to frost a cake, she loved it! Later on through the day we went to her house where Chris had made a lovely dinner for us all and we could all admire the lounge, now all lined for the final decorating, Izzy did tell me she wished she lived at her old house though! I think that as all is still not completed and her bedroom is not yet finished she doesn't feel the sense of belonging she had at her old home. It won't take long as things are moving at a fast rate to get the house as they want it.
What would we do without good friends. I have been surrounded by my lovely ones whilst Colin has been away, always lovely to know they care about me. We have two of our friends arriving from Scotland for dinner tomorrow night, Jamie Oliver has an amazing fish tray recipe when you want to enjoy your friends company and not spend all night cooking. We serve this often and the recipe has gone to America and also our friend in Canada when served this enjoyed it so much he asked for the recipe to take home with him. . We were rewarded a couple of weeks later when his wife rang to say they just loved this dish and it would be a dinner party favourite.
All for now. I am waiting the arrival of our computer being returned from the Apple repair shop today. When it arrives then this blog can go out.
Thank you so much for reading, My likes are getting more and more and that pleases me. I had a lot of shares on my That's the way the cookie crumbles so I hope it helps to show how we feel differently from hour to hour, for people to explain it easily to their friends, Izzy had a hand in helping with this particular topic.
Warm love to you all