Those of us with ph know of the devastation on hearing the words. Many of us will have questioned our partners, husband or wives, can they stay the course? - cos it sure gets tough. If we are not in a relationship then will we ever find somebody to take on a partner with a chronic illness, one that is said to be life shortening. I know there were many times when I told my own husband to cut and run when the going got really bad. Fortunately for me he chose to stay but I read many posts from others whose partners just could not deal with it - they ran!!! At the time when we really need a strong partner to be told they are off must be so awful, too much to contemplate.
Two such singleton people diagnosed with ipah were Andy Sweeney and Lynsey Childs. Both single and both were given the verdict ipah. Their lives in tatters they both envisaged a lonely road ahead as they wondered what would be the point in being with somebody when living with the illness they had an uncertain future. Battling on with the disease alone was the way their life was headed. However a picture posted on one of the facebook ph sites changed all of that.
It was just an ordinary picture, one many of us post when we change our cars but this picture was about to rock the world of both of them without a doubt. Andy was the one who posted the pic and Lynsey was one of the many who commented on his new mobility car.
Before long they began to message each other asking when they were diagnosed, how did they know there was something wrong and the meds they were on etc. The messages flowed back and forth, Talk continued about their families, friends etc. As neither of them were in a relationship the online friendship grew. After a few weeks of talking and face timing they both began to look forward to their chats. Lynsey had a bright idea. She suggested Andy take his beautiful new car on a run, a long run as the distance between them was not inconsiderable, being 150 miles so they could meet up in person. Andy was up for it so he drove to meet her and straight away Andy said he knew something was there between them and that the same something continued to grow. They now drive backwards and forwards to each others houses and are planning on more lovely things, like nice weekends away and so forth. The friendship turned to love and because they both know all the problems of living with ipah they both have an understanding that those not living with it or caring for somebody with it cannot ever really have.
In his own words Andy states that "yes, we both have ph but we also now have a life, a happy life and ph lives with us but it won't stop us being together. In many ways ph found US"
I was more than thrilled to read this story as being a member of quite a few ph forums I have seen the sadness created when somebody is diagnosed. Families that split and fall apart under the weight, friends that disappear once they learn the truth of how it changes our lives and families that think the poorly one is not fit to be invited out for meals etc so they stay home alone whilst the rest continue with their happy family life. Yes I have seen so much heartache on here so this story with the happy ending has cheered me up no end. I also hope it serves to say to people that yes, you can find love with ph. Maybe take a look around your clinic at your next ph visit, your future just might be sat right next to you!
Go well Andy and Lynsey, may your life be filled with love and happiness. I feel sure you will weather the storms thrown up by living with this disease.
Good on you Kevin.
I told you last time of the campaign now going on for making our politicians aware of ph and trying to get a little more help for us out there. Well the upshot is that with the help of my councillor there are now two people attending on my behalf. I received an e mail back today from Kevin Hollirake MP telling me he is definitely going to be in attendance at the PH event which will hopefully help to raise awareness of this disease and he sent me his best wishes.
At last we will have our MP's listening and learning of this disease, pushed under carpets for way too many years. I thank our PH team for setting this up and hope that lots of good cones from it. Sadly the other four that were invited have not bothered to respond to I must assume they are not going to go. I pray for a big turnout. Lots of work must have gone on behind the scenes for this to be put into place. I thank them all from the bottom of my enlarged heart.
Cruising
We did it. We once again looked ahead and decided that we would fight ph and it would no stop us from enjoying holidays. So we have booked another cruise next year for us and Izzy. I am praying my ph holds up but we are taking out our insurance NOW because we all know well how it can change in an instant. On my last cruise, though I loved it very much I was always in bed by 7.00. I hope to see some of the shows next July and watch Izzy as her face lights up with delight. I had the denervation since my last one so maybe I will.
Delightful Liverpool
Izzy came around here last night with her piano bag to ask her granddad to help her with her homework! Yes she can do this now because on Saturday to get a days respite from all the jobs that still need doing I suggested a day out in Liverpool at the music shop we like to buy him a new Keyboard. I knew it would be the one thing to get him away from the house and I was right. So a beautiful new Keyboard now sits in the study. Izzy was delighted to see it and is looking forward to them both sitting at it playing pieces side by side.
The problem with Liverpool is that it is such an amazing place it appears to ALWAYS be crowded. No matter what time of the year the shops are bursting at the seams. Groups of people were gathered around the Cavern, as always. Some were dressed up to resemble Cilla Black and also a few to look like the Beatles. The Cavern is such an iconic place and one can always see some dressed as their idols who became famous after playing here.
I went into Zara and I found a really fabulous dress for myself, really loved the style, colour and length etc. I looked at the queues to try on and they were almost out of the door. Now I am not sure how those of you with pah are but though I can walk, standing still is a no no for me. My oxygen levels plummet into my boots, my head hurts like crazy and I also get dizzy and feel sick. I decided against trying it on and just going to pay for it. We have a Zara in Leeds so I knew it could easily be returned. Alas the queue even surpassed that of the one to try clothes on so I had to leave it. I am hopeful, though not in a big way that I will see it on Friday when I am in Leeds and it turns out to be a nice little winter number for me.
Thought I would finish with this cartoon I saw online today, sorry not sure where it first came from. Very tongue in cheek, particularly as my hubby took on all the jobs in our home when I first was diagnosed. Still it made me smile!!
The weather has turned from mild to cold so stay warm and dry. After saying that I got absolutely wet through yesterday going to my dentist. I then was diagnosed with thrush in my mouth cos of the inhalers and to cap it all off had to sit in my wet clothes for two hours before I returned home. Though our house is toasty I took a hot water bottle to bed for a short time to warm my feet which had not recovered from sloshing around in wet shoes and socks.
Right, headed downstairs now to take my chewable vitamin c. I also made sure Izzy had her hand cleanser that wards off bugs for two hours. I always remind her when she has rubbed her hands with some she should rub the bottom of her nostrils in the hope it stops the pesky germs from entering! Not sure if it works but I try anything to protect myself from them anyway.
Stay well everyone. I send you all warm love and the hope that you stay as well as you can.
Carole xxx
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