'tis the season of holidays, but rare, lifelong conditions don’t take holidays. Chronicling the ebbs and flows of life with Marfan syndrome, Lucy is meeting her hardest challenge yet. Here’s her latest blog.

Hey guys, I'm so sorry I haven't blogged or kept you updated. I have so much to tell you but I honestly don't know where to start. I've had a really rough year so far but I'm still here, still trying my hardest every day. Let me tell you something, though, my Doctor sure as hell wasn't wrong when he said trying to overcome severe malnutrition, along with everything else I have going on, would be like trying to climb a mountain. It really has been an uphill battle and I've probably cried more this year than ever before. But I'm hoping to get a bit stronger now that we're heading into the second half of the year. I've felt so exhausted & unwell some days, I haven't even had the energy to start writing a blog. I don't think you can just bounce back from critical malnutrition because when your body reaches that point, everything breaks down & malfunctions. Even the cells in the body break down and have to repair themselves. In my experience, it takes a long time for that to happen. It certainly didn't happen as quickly as I expected. Don't get me wrong, I have come a long way since January & I'm definitely improving, but it's been slow and I've had some setbacks along the way. I ended up having to trial different laxatives for a while as the feeds caused sluggish bowels (more so than normal) And let me tell you, that was not a fun time. I already have bowel problems and I'm not supposed to strain on the toilet, so we had to try a number of things before I found the right balance

I was diagnosed with Osteoporosis in the middle of all this, as well, which was a really big shock and nearly tipped me over the edge, as my mental well-being was already as fragile as my physical health. I honestly didn't know how to deal with the fact that I now had another condition to contend with. I already have a lot of joint and bone problems due to my Marfan syndrome & hypermobility. I have osteoarthritis in my knees and suffer from chronic joint & back pain every day, so this was absolutely the last thing I needed or wanted. I wish I could tell all my health problems to go on holiday for a while to give my body a break or better still, retire altogether 😂 However, I know that's not possible and I've just got to keep going. 

In terms of the Osteoporosis, though, there's not much they can do about it at the moment. I've been prescribed Vitamin D tablets to take each day, but I'm not currently allowed to take the prescribed medication for Osteoporosis because it has a tendency to cause a lot of unpleasant gastric/digestive side effects, which is something else I can really do without right now. My GI system/digestive tract is not a happy bunny on the best of days, so there is no way I'm risking making it worse for the sake of a medication that isn't actually gonna cure me of Osteoporosis. It can't be reversed but the medication could potentially reduce further bone loss. However, I've been advised by my Doctors not to take it until I've discussed it with my GI Consultant, so that's what I intend to do before I even attempt to go near the stuff. I have an appointment with him in July so I’ll let you all know what he suggests.

I probably have loads more to tell you but for now I just wanted to give you a brief update to bring you all up to speed. I’ll try not too leave it so long next time. 

Lots of love, 

Lucy.. X 

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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