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
4 comments:
Great effort on getting a blog post out and wonderful news having a portacath put in as it will indeed make things much easier over the ne t months. Take care and plan your days so that a “big” day is followed by a day of rest to give your body time to recharge.
Hi Helen
It's good to hear from you again; I have missed your blog posts but quite understand why there are less of them these days. That was a very interesting article, thank you for sharing it. I am in awe with how much you continue to do despite the limitation myositis creates, not to mention all of the time that you need to spend visiting the hospital.
Best wishes
Jane
Welcome back! 😀
I'm so sorry, chronic illness is crap (I have ME/chronic fatigue). Getting up, dressed and downstairs is sometimes more than I can manage (and I live in a bungalow!) - I'm sure you've already done this, but can you talk to your OT about any adaptions etc that might help? I have a wet room with a built in seat and that means that I can manage to shower some days when I wouldn't be able to otherwise. Getting dry still consists on lying on the bed wrapped in a towel, but it means I'm not smelly/sweaty and hot water eases my pain levels. I find it also helps to acknowledge that even when I feel like I'm doing nothing, my body still has to work hard (breathing, sending blood round, digesting food and meds etc) and that can take all my energy for that day.
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