Living with ARVC
It's been a while since I've recorded any vlogs and my blogs have been few and far between. I could make excuses about how busy I have been, which is true, but the real truth of the matter is that when I began TBGO I was at the very beginning of my journey, just a few months after my diagnosis. Although the purpose of the project was to help other people, at this point I really didn't know how to help myself.
I think I needed to live with the disease for a while to work things out. I now appreciate more than ever that it is the 'working things out' that is beneficial to others going through similar experiences.
I am on numerous forums/support groups on facebook and it is reassuring to hear that other people are experiencing similar symptoms. Equally it is important to realise that everyone is different in terms of how far their disease has progressed, everyone is on different meds and different quantites but also the way in which everyone deals with it and processes it can be so varied.
So you must take what you need from them but do not take it as gospel and let it worry you as it may be something that will simply never happen to you.
So what have I observed in the 2 years since my diagnosis:
I have learnt that over time you build Confidence. Your life does resume some form of 'normality'.
You don't forget about it. I'd say I still think about it everyday but IMPORTANTLY not all day everyday, which I did at the start.
If your meds are right, you do adjust to them and don't suffer from the side effects as much as time goes on. (I can't tell the difference now if I'm tired from my meds or just from my day like any normal person.)
I recently went to a meeting about Managing Fatigue which was extremely useful, see documents on 'Using your energy wisely' here and 'Pacing your physical activity' here provided by Guys & St. Thomas's Hospital.
I have put weight on during the winter months, (probably like a lot of people have). However, it is now harder to lose weight as my metabolism is lowered due to beta blockers and the worst part is I can't go and burn off calories as I can't raise my heart rate too much. They say 80% is diet anyway so I just have to be incredibly careful what I consume and I am going to investigate cardiac rehab classes. Just to see if I can get some guidance on what my limits are and feel like I am doing that in a safe environment with professionals nearby. I will then hopefully have the confidence to continue on my own. I wish there were more people offering specialised exercise for heart patients.
Mental anxiety is still the biggest part of heart condition diagnosis in my eyes. (So much so that I will give it a blog or vlog all of it's own). Fear of death, the unknown, the uncertain future. Fear of the ICD and the pain of the shock, again the unknown. Learning what are symptoms of the condition or symptoms of medication. I am getting better at identifying the anxiety even if it is a physical sensation, it's incredible what the mind is capable of.
Breathing is the key to living with ARVC. I know some people might say that is key to living full stop but it's amazing how many people take it for granted. Deep breathing is crucial to staying calm. Always return to the basics to quiet the mind.