"hi Dr Spence I needed to see you as other doctors are again understandably playing funny buggers with my drugs"
Quickly I am prescribed said drugs & given a new one to try. To explain how strangely easy this was when I put prescription into chemist the girl got the pharmacist who said "oh I need to call doctors".
I am not addicted to these apparently highly addictive & restricted drugs. I have shown in 8 years that I use them to live my life in a way I choose.
Dr Spence knows this because he has been there since the start and Lorna says to him "some fellow patients will say John can't be that bad but they don't see the state of him in mornings. going into gym or when he comes home" I actually think Lorna is much braver & has more to overcome than me but I suppose that explains how our relationship is so good for each other.
The rest of my half hour appointment covers my life & Lorna's. He again asks is retirement an option soon as he always does because he has seen the struggle to balance a full time job with heart condition, he worries about how I would Cope without it's focus, he thinks Lorna's work/cause to show how to feed families well & cheaply is such a worthwhile cause. We all chat about the power of mind over use of drugs with chronic conditions, finally it transpires we are both coaches to our boys 2005's teams so a game is arranged & exchange of phone numbers. he offers the surgery support for our teams race night on the 30th and any future sponsorship please ask. Remember this is the surgery that paid £1200 for my End2End accommodation.
For that race night on 30th Lorna & I contacted some politicians we have met including George Adams (Paisley SNP MSP) & Ian Duncan (Scottish Tory MEP) quickly their support is given & generous with offers of anytime. These communications are through personal contact lines straight to them. The speed & warmth of support given is noticeable & 1st time we have asked as John & Lorna with no charity link.
I got a tweet from John Walsh this week containing a news report concerning 2 nurses I admire Heather Henry & Louise Brady. I have followed these 3 for couple of years now & went to a 2 hour Conferance in Manchester last October basically just to actually meet them.
Lorna explains to people that if someone ask me to support them & I want to, I will move heaven & earth to be there, no event or support is too small if people think We can help we will get there no matter the difficulties. So John, Louise & Heather don't disappoint as I like & admire them more now have met them personally, I admire their vision for patients, I also think they could open up a whole lot of good insights & contacts to interest my & Lorna's future hope to support fellow patients & others.
John offers to do a joint blog but It scares me as his blogs are so well written & I love them but I know I could learn so much from him. His blogs highlight a man of genuine warmth and experience in supporting people & causes. I absolutely know he is somebody we should meet up with consistently but I think he is too busy for us.
Louise has mentioned coming to Glasgow & visit us/meet up and I panic, Surely she is too busy to fit us in? we don't want to waste her time, I admire her & Heather's nursing/Patient vision so I want to support them ongoing any way we can as chronic heart condition patients but I also know they can maybe help us in future & they would help but I just don't know how yet.
Julie Rees has a commitment to charity CardiomyopathyUK that is so admirable. during my John O'Groats to Lands end she supplied a meeting that was simply brillaint, we are driving to her afternoon tea in Feb in Chester to show our support, A long way for a 2 hour coffee morning but my instinct is she & her daughter Jenny can be a huge positive influence on our future goals. I just don't know when or how yet. She asked so we will do everything to get there.
I only write about those above because they have been actively involved in my planning and interactions this week.
To this list I could add many like both Rob's, Graham, Judith, Harvey, Mark, Gareth, Nick along with many more that I know can help shape our future vision of supporting fellow patients or more & more the plight & horror of homelessness along with our hobbies of cooking skills or football coaching. I truly am shocked at the quality of people who offer to support us so we need to make sure we don't waste it.
The truth is we are both genuinely shy & yes many will say surely not but in every physchological test I have taken it comes out as my no.1 trait. But we have a real burning desire to highlight that living with a chronic heart condition can be a worthwhile & a reasonable good life. We are a good heart story after falling in love as patients of rare condition. We work as a team pushing ourself on and as All of above have spoke to me about in past we all need to get "out of our comfort zone" in life. I find the people for us to help, Lorna arranges it then the warmth & support we recieve if we ask has surprised us. We have found so many that could help us in future but we haven't learned, worked out or understood how they will yet.
I explained to Dr Spence that the above people mentioned are why I no longer fear retirement as I will always have a reason to get up in morning giving me focus & drive. We just need to learn what it is we want & to Ask more.
All of above we firstly met through social media, in professional or charity capacities but they hopefully can become real friends who ask for & give support not because they have too but like we do with them, that they enjoy it. That is what is important
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