It’s just a catch up!


Hello lovely followers of my blog, firstly sorry I haven’t posted in a couple of weeks, if I am honest I have been struggling a little bit both physically and emotionally. This latest flare up has hit me hard because I had had a little bit of time where I had been happily plodding along at home and getting some work done on my PhD and I had even started to do a little exercise. However, I have flared up right back to - just getting out of bed and showering is a massive challenge. I am trying very hard to listen to my body and not just push through it because that just makes the flare up last longer and worse and I don’t want to end up back in hospital. So, I have had a couple of very gentle, quiet weeks, where I have done very little.

This next week will bring some interesting appointments. I am currently having some rather painful physio on my ankles and have another appointment. I am also doing some really fun exercise to try and strengthen my ankles, I am actually doing ballet, which I love and find it really enjoyable. I am desperately trying to avoid operation number 20 – I just don’t think I have it in me at the moment to go through another surgery.

I also have two cardiology appointments coming up this week. One is with my regular cardiologist and is a check-up and echo – it has been a full year since I had my last echo. Both my husband and I are braced for bad news on this one, we both think that the damage to my heart from the huge amounts of angina I get has become permeant. Therefore we are expecting to hear that I have gone into heart failure. I am going to write a separate blog all about this – so keep a look out for that!

The second cardiology appointment is with a new cardiologist in London, who is a super specialist on autonomic dysfunction. I talked in my last blog about IV saline, but it doesn’t look like this is going to be an option for me. So we are going to go and have a chat with him about what can be done. Hopefully he can help me with this feeling of a constant hangover.

I have had the results of the biopsy done a couple of weeks ago and it was all fine.

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