Hi folks,
I have Vasospastic angina, micro vascular angina and CAD and I’ve just started working with a Clinical Psychologist who has asked me to approach this forum for advice on how you have adjusted to your new lives following diagnosis. I used to be an endurance athlete and mountaineer and I can no longer do any of my favourite hobbies and I would welcome any advice on how you have come to terms with such an enormous transition, which I am really struggling with. Thanks.
Where do you start?
The Portuguese have the word Saudade which sort of means a wistful longing for our former Iives and grieving for the loss of the future we thought we were going to have.
It's a very personal journey to acceptance and sometimes the calmness that acceptance can bring is illusive.
Acceptance is not giving in it's a hard won sanctuary that needs to be tended to like a garden.
At first I resisted and fought against the new life imposed upon me. I became mentally and physically exhausted as a result.
Then I sought out people to support me and asked for help.
What has helped me most over the years is my husband and family who are just there for me. They are the ones who pick me up and dust me down give me a hug and help me to carry on.
I attended a Pain Management Programme and Mindfulness meditation course on pain management.
I worked with a Physiotherapist who has been with me for nearly 12 years. She's retiring soon but I am so grateful for her support. She's given me the skills I need to carry on.
I found this free app helpful.
I worked with a Clinical Psychologist who helped me respond to my pain and illness differently.
I walk my dog everyday and we watch and listen to the changing seasons. We smile and say heĺlo to everyone we meet.
This winter has been particularly tough. I have had 2 hospital admissions lasting over 10 days in 6 months.
However I am now looking forward to the summer when I feel much better.
My tomato and other seeds are sown and I look forward my favourite month of May when nature springs back into life.
I feel so much better that I will be hopefully walking up Helvellyn this year, not by the edges though. I did Great Gable last year and Haystacks the year before.
Some days are good some are not so good. Days are just days.
Hold fast onto hope.
I nearly forgot Tai Chi and Yoga 🧘♀️
Thanks Milkfairy, I hope I manage to get to a place where you are now. I’ve been in hospital twice this year already and four times last year and it’s really hard. I don’t have close family to help me though and I find I have to keep reassuring other people that I’m fine, when I’m not.
Please be reassured that you're not alone. This is a difficult condition to manage. From my own experience, it's not fun living with chest pain day after day. I just hope with increased research more effective treatments will be developed in the future.
Thank you..That was truly a heartfelt inspiring sharing! ❤️❤️❤️
The first thing to say is well done for reaching out, we are all on a journey. I think of life as everything pre heart attack and now post heart attack. I am gradually building a new confidence and joy in the ‘post’ life based on learning to appreciate what I can do which I am discovering more and more is quite a lot! I’m learning to take my time and ‘smell the roses’ more. We have a young, active beautiful Labrador and taking her on walks everyday, training her and taking her on Airbnb breaks with my wife regularly is a new purpose. So I guess what I’m saying is that whatever the nature of our cardio event was, successful transition comes from embracing the post life, finding new purpose(s) and seeing that as an opportunity helps come to terms with the loss of the pre life. One last thing is the value of this forum, joining any support group and becoming active to support others on their transition journeys really helps too.
Thanks Mikeysaab, I’m struggling with finding a new purpose as there often doesn’t seem much point.
Diet is key. I’ve had since dice 2019 after HA in Spain.
I fell off the wagon the last year so just fighting back.
That’s what you have todo keep fighting.
Good tip is in cold weather have neck scarf.
But back to diet go as much vegan or at least Mediterranean as you can
I regularly practice meditation yoga and have started tai chi which helps me to live in the moment.
I try to listen to my body each day and do something that I enjoy as well as something challenging if I can.
Walking is good to get out I have a dog. I have taken up painting also, but if I’m not feeling able to do much at all then reading is great or listening to an audio book.
Have you been advised medically as to what your physical limitations should be. For example I note that wild swimming is out but have you been advised not to scramble up steep hills, or undertake very long walks that might be strenuous at times but where you can rest in between?
Hi devonian186, I have been advised that it’s too risky to do any climbing/ mountaineering type activities or in fact anything that I couldn’t get myself out of in an emergency. The last time I went hillwalking (and it was only a Corbett) I felt like I was at altitude and was absolutely exhausted afterwards.
I’ve been told I can walk on the flat and use a swimming pool if there’s a lifeguard, but swimming makes me feel light headed and dizzy so that’s not much fun anymore either.
I personally enjoy hiking, but its years since I did really strenuous ones like up Cader Idris or Ben Nevis.
I do however walk a lot on Dartmoor as it is close by. Also the South West Coast path also close by. They can often feel remote and often feel rugged and there are great views and a sense of achievement, but you are unlikely to be too far from help or from somewhere you can sit down for a cuppa or a meal. .
There are lots of long distance footpaths of varying degrees of difficulty including the Thames path. Perhaps these might be suitable, especially if you combine them with a suitable hotel.
Are you able to cycle, perhaps an electric bike, which will also get you out in the countryside.
Can I add to my comments other long distance footpaths along former railways, which by definition are flat and never too far from help. Perhaps you could join a walking group?
I must thank you for this post it helps to no feel alone in this new life we find our selves with. I recently had a sharp reminder of MV limitations - daughter has a new baby my first grandchild. Daughter was hospitalised twice recently for an infection. I was told my services to look after my two month old grandchild was not required because I was not fit enough and would struggle. Heck of a way to be reminded !
Take care take each day as it comes and enjoy what you have now ☺️
Hi AuntyEdna, you’ve made my day by thanking me for this post, at least today I have achieved something. It must have been quite a blow to be told your services weren’t required with your granddaughter and a real knock to your self esteem, which I can only empathise with. Most people regard me as a liability these days when I used to be very fit and strong, and it really hurts when you are constantly reminded of your limitations.
Really sorry to hear that your situation and loss of your favourite hobbies. Some great replies already. Have you been given boundaries to work within, any heart rate numbers or thresholds to keep within? I had Nstemi and quadruple bypass lady july and found the rehab course very conservative and restrictive to individual capability. I was lucky that a cardiac rehab specialist found me as I was complaining about the conservative nature and cookie cutter application of rehab to a class rather than the individual. He green that individual assessment was needed and some people were more sciatic pushing on. I’m not advocating that you push on , I just wonder if you are able to find the boundaries of what you can do as a start. It was a comfort to me to have some stats that I could work with in the initial stages of my training , I then became more confident and understanding of my progress. Walking then turned into jogging etc. I am very lucky and appreciate that I’ve not suffered any angina , I’m really hope you can find your way back to enjoying some or all of the things you loved doing , even at a shorter /less intense pace .
Thanks DWizza, my cardiologist expressly told me that it was far too risky for me to do any of my previous hobbies and that I should stick to walking on the flat. Too much physical activity makes me ill so they are not remotely enjoyable anymore
So it’s a matter of finding what you can do not what you can’t . 👍🏻That really was my point. I’m sure your specialists explained the science behind their advice too so that you have a great understanding and can become your own expert. You’ll find your level and enjoyment. ❤️❤️❤️ Keep us updated 👍🏻
"When one door closes another door opens; but we often look so long and so regretfully upon the closed door that we do not see the ones which open for us." (Alexander Graham Bell)
I used to be a very keen cyclist but had to stop after an acoustic neuroma was removed in 1996 (leading to poor balance and sensitive eyes). Within three months, I started a new hobby involving local military research and three years later a friend got me into walking (so I was able to combine the two). I was hoping to resume a very energetic lifestyle after my TAVI last July, but my borderline anaemia and fatigue have worsened, to the extent that I'm thinking of downsizing two or three years earlier than planned. But that military research continues and I've joked that refining my copious notes will keep me occupied in my advanced dotage.
The British Association of Cardiovascular Prevention and Rehabilitation are in the process of carrying out some research into the knowledge that Cardiologists and Rehab professionals have about the exercise capacity of patients living with microvascular and vasospastic angina.
There is at present very little research available.
Is your diagnosis from your symptoms alone or from tests showing evidence of myocardial ischaemia from a PET scan, perfusion MRI, stress test or functional angiogram?
It might be worth being reviewed by a Cardiologist who has in depth experience of caring for patients living with microvascular and vasospastic angina.
I can suggest one in Glasgow another in Newcastle.
This is the first published paper from the BACPR.
openheart.bmj.com/content/1...
There are further papers to follow. The overall finding of one of the unpublished studies is that most Cardiologists and Rehab professionals don't know much about us as a group of patients and how we should be advised to exercise.
At first I couldn't exercise at all.
I worked with my Physiotherapist.
She put me on a treadmill, my heart rate and oxygen levels monitored throughout.
I learned about the BORG score and now know that I need to keep my heart rate below a certain level. My Goldilocks spot. If I have a high heart rate for too long I will experience delayed chest pain later.
I very gradually increased my exercise capacity over many years.
I don't do too much during a ' hot phase' of my coronary vasospasms in the winter.
Lots of walking on the flat at first, then after a while I started including small hills. After a few years I eventually had the confidence to walk up a proper hill, Mam Tor in Derbyshire.
That wiped me out and I was confined to bed next day with more symptoms.
But the view and the sense of freedom was wonderful.
My Mum devoted her life to housework - her only treat was a visit to the hairdressers. In her late eighties she was regularly bursting into tears because she could not complete her daily regime. After she'd finally moved into a nursing-home, I asked her if she missed the housework. She was VERY adamant that she did not (and her high blood pressure had returned to near normal).
Twenty years later, I am approaching the same level of limitations that my Mum and Dad had - and I wonder if I should/could have been more sympathetic about how they were being forced to change their lives.
That is such a good question for anyone who is diagnosed with an unpredictable, chronic condition (lupus for me) and that anyone in that situation should get some psychological support so great that you’re getting some.
Learning new things is always great for keeping the brain working - anything from languages to painting to bread making (my husband is hooked on that. I don’t know what you are allowed to do but tai chi and yoga are good for mind and body (and you can do both of them on a chair if necessary). Also doing things like volunteering can give purpose to your life - I have really enjoyed helping 5 year olds learn to read, because they progressed so quickly. I’ve also worked on a voluntary project for TfL, digitising their archive of historical documents (about the Central Line - call me a geek!).
I think we need to learn to manage these diseases rather than fight them, because that takes too much energy which can be used for better things.
Wishing you well.
As I wonder how much gardening I'll be able to do today, I console myself that two years ago before my dodgy heart valve manifested itself,) I was hoping for four more years of being very active, then downsizing, perhaps into warden-assisted accommodation, and taking life much more easily. So my current fatigue (which may yet get better) may have taken just a couple of years of activity from me.
Most days I'm able to achieve something or other and go to bed feeling that the day has not been a complete waste.
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