Hello! Apologies for such a long absence. It has all just felt a bit much recently. I had a flare up of my myositis which really knocked me back. It honestly felt like a massive achievement just to get myself up, dressed and downstairs some days! Living with a chronic illness is hard going at times. I was talking to my Occupational Therapist about it and afterwards did some research online. I don't want this post to be full of moans and self-pity, but when I read about how other sufferers were feeling, I felt relieved that it wasn't just me! If you'd like to read more about what it's like, have a read of
this article. I shared it with my OT, and he shared it with his colleagues to give them a greater understanding. When you throw into that mix all the issues of isolation and anxiety that being classified as 'clinically extremely vulnerable' gave rise to during the Covid pandemic, it's no wonder that I have 'off' days. Thank you so much for sticking around.
I do have lots of things to share with you - I have actually been uploading photos into draft posts since my last post at the end of March - so hopefully there will be some more regular blog posts over the coming weeks.
I had surgery to fit a portacath last month. Whilst this will make my regular IVIg infusions a whole lot easier as I won't have all the trauma of cannulation, it was yet another reminder that my condition isn't going away. But now that I've got my head around that, I'm glad that I've had it done. It's such a clever device - one end feeds up into the jugular vein and the other end is in the vena cava which goes into the heart. If you're interested,
here's a link to read more about it. I've already had my next round of infusions via the port and all was good. I will say goodbye for now and I promise to be back very soon! xxx