Drawing life with Marfan Syndrome

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Drawing Life with Marfan Syndrome | Marfan Trust

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Written in 2020 but didn’t share on blogger

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Over the last few years, I've been very open about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my everyday life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body, ranging fr...
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Hi, Everyone! I was in theatre recently, undergoing Gastrostomy surgery. For those who don't know, a Gastrostomy is a surgical procedure where a feeding tube is placed directly into the stomach. This would allow me to get the nutrition I need without having to rely on my oral intake alone, which is challenging for me due to my digestive disorders. I can still eat small amounts, but not enough to sustain myself. It's a common misconception that people with feeding tubes can't eat anything. But it all depends on each person’s individual situation. I can manage small portions of softer foods, but another person with a feeding tube might not be able to eat at all. For me, it helps me maintain my nutritional needs, since eating regular meals is difficult due to my GI & Oesophageal dysmotility. As I tried to prepare for the day ahead, I was consumed by a whirlwind of emotions- Including nervousness and relief. I knew this procedure was necessary and would make day-to-day life...
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Shifted Out Of My Seat!

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I'd like to start this post by saying a sarcastic thank-you to the old guy who I had the displeasure of meeting in a shopping store on Friday, without our encounter I wouldn't have thought of blogging about this particular subject.Your rather rude manner has given me an opportunity to discuss a topic that can be quite an issue for many others in my position. So thanks again Mr Judgmental, I guess I owe you a high 5! Also, before I carry on I want to state that I'm not tarring all older people with the same brush, or meaning to cause offence to them or anyone else. I just wanted to do a post that shows how younger people with disabilities (especially hidden ones) get treated by certain members of the elderly. This particular situation happened while I was in the supermarket with my mother & as I always do when out shopping, I'd taken myself off for a sit down due to pain & tiredness caused by my health problems. Normally I'd stay there around 10 or 15 minut...
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