Something a little different for this blog post. I recently had the pleasure of working with Shona of My Marfan Life. Here, she share’s her experiences working with me and a bit about her life with Marfan Syndrome.
“Recently I had the pleasure of having a 30 minute consultation with Jo to create a flare up plan for me. I have a rare genetic disorder called Marfan Syndrome that affects my connective tissues, it’s similar in some ways to EDS. It affects my joints and bones mainly resulting in me needing surgeries and ending up being in a lot of chronic pain but Marfan also affects my heart and nervous system too. Over the years I’ve seen various Occupational Therapists at hospital, after surgeries etc but no one seemed to take the time with me to create anything like a flare up plan, I was just told a bit about pacing and that was it. If you have a chronic illness that can flare up then you’ll know how important it is having some kind of plan in place for when you’re in a flare up so I turned to Jo to finally get the help I needed.
We had a 30 minute consultation on Google Hangouts and in those 30 minutes Jo helped me more than any other OT ever had before. We chatted a little about my medical history, although emailing beforehand to discuss this meant we didn’t have to spend long on it, and then we talked about the things that I found the most difficult. I suffer with a lot of chronic pain that flares up easily so we focused a lot on that and went through things I was already trying and things that I could try. Jo introduced me to some really handy breathing exercises and then we put all of my pain relieving techniques into the order of what I should try first so when I’m in a flare up I’ll know exactly what to do. Your head can be all over the place when pain is bad so it’s handy having things in this ordered list, it will be easy to turn to when my pain is flaring up.
We then focused on an activity I do a lot, like Jo I am a blogger and due to not being able to work or continue my education this is what I mostly spend my days doing. We talked a lot about how I could minimise fatigue and pain as much as possible whilst I blog and I now have a really good list of things that I can try to make things easier. Most importantly some of her ideas were things that I’d never tried before, especially when it comes to using KT tape in an effective way on my fingers.
We then went on to talk more specifically about anxiety, fatigue and relationships, all things that are a big part of my life due to chronic illness. It was nice being able to personalise the flare up plan to what affected my life most as of course our conditions all affect us differently and one size does not fit all. I feel like Jo really appreciates this much more than other OTs I’ve seen, perhaps because she truly understands what her clients are going through as she suffers with EDS herself. I now have the perfect personalised flare up plan for me that I can easily turn to when I need it!
The 30 minute consultation with Jo cost £15 and I got plenty of free email support after, a time where you can make any changes to your flare up plan if needed. She also offers things like pain management lessons, pacing masterclasses, personal shopping sessions for mobility aids and corporate accessibility audits to help make your service as accessible as possible. I’d 100% recommend booking into to talk to Jo, you won’t regret it.”
If you’re interested in learning more about Marfan Syndrome then you’re in luck. February is Marfan Awareness Month. There are lots of exciting things happening online. Shona will be raising awareness with #MarfanAwareness, be sure to follow Shona on Facebook and twitter too!
If you have any questions about working with me or any comments to share then please get in touch!