Being an adult with a heart condition

I have talked about how I was as a child with a heart condition but what about when I got older and became an adult. Well. If I had to walk so far, then I would have to stop along the way and get my breath back. I would also get a stitch in my side. I couldn't walk too far or too fast. I would get that stitch, and/or get out of breath by the time I got to my destination. I certainly couldn't run that far, either. For the bus, yes, but that was it. The last time I remember really running for a bus was several years ago now. My mum and I had got to one bus stop to see the bus we needed to go on to where we wanted to get to. The bus had to go round a main route which included traffic lights to get to the next stop. We walked fast with a bit of running. We made it and got on the bus, but it really puffed me out. I had a stitch in my side, I was out of breath, and I had a pain in my stomach as I was gasping for air. It was the worse I had been that I recall. I vowed not to do that again. I don't think we did.

Now that I have had the surgery and don't have the hole-in-the-heart, I think I might be all right that way. I don't know yet as I now walk with a stick due to balance issues caused by the perimenopause. So at the moment just running a little bit makes my balance even worse. I would like to think that I would be able to move like that without the stitch and the breathlessness. We shall see. I plan to build up my walking over time when it is warmer.

#HeartAwarenessMonth #hearthealth #adultcongenitalheartdisease

If you want to find out what happened to me so that I no longer have that hole in the heart, then it is all in my memoir which can be found either via my website, The Book Dragon bookshop, Amazon or all other digital platforms as an ebook. 

Being an Aspie in hospital - Talking

Having Asperger's I always thought if I had to go into hospital again I would want my own room to have privacy. Little did I know that that time would come in February this year. I didn't have a room of my own at any time.

I first went into University Hospital Lewisham, London, on 4 February. I was admitted to a ward with only women and in a bay of four beds. The beds were spaced out well so I didn't really have much to do with the other patients. After a couple of weeks and lots of scans and tests, including daily blood tests and being on an IV antibiotic drip, I was transferred to King's College Hospital, London. It had been discovered that the slow growing bug in my blood had damaged my heart, and King's had a specialist team. So off I went.

In King's I was in a smaller room where it was only the two of us, so more chance to talk. I only started to talk to the other lady there when she began to get out of bed when she shouldn't have. I had another test which revealed it was endocarditis I had. They decided I needed surgery and St Thomas's Hospital, London, would be best for me as they have an even more specialist team there who deals with adult congenital heart disease. So off I went.

This is where I did talk the most to other patients. I now think it was due to us all being there with heart problems (one lady even had the same condition as me) so had things in common to talk about. I introduced myself and we talked. I feel that having others there in the same situation helped me to cope with it all. I was in that first ward for two weeks before I had surgery. The next thing I remember is being moved to the High Dependency Unit. The beds were spaced out well and I was too weak and focussed on recovering to talk to others, except the nurses who took care of me. A few I did chat to, when I got my voice back, and told them how I felt about being there. It helped me. After a few weeks, and a pacemaker being fitted, I was moved back to the first ward I had been in. I talked to the lady in the bed opposite to me. Again, I think I was able to as we were all there with heart problems. And again, I feel that it helped me to talk to others, which helped me to cope being there on my own. I did chat to my brother and friend on the phone nearly every day but having others there helped. In the last ward I was in, only for one day, I briefly talked to one of the ladies there.

So my experience as being an Aspie in hospital wasn't how I imagined it to be. I now feel that if I had been in a room on my own, I would have felt lonely and miserable, and wouldn't have got better as much as I did.

I realise that not everyone with Asperger's would want to be in a bay with others and want to be on their own.