Friday, 31 March 2017

The Honest Reality Of Having Marfan Syndrome

This is a post that I wrote weeks ago, just after Marfan Awareness Month and the irony is that I've not been able to post it because of my health and Marfan. March has been a truly awful month and I've had many more bad days than good ones. Today is the first time I've gotten out of bed and dressed all week and each week throughout March I've had several days at least where I've been unable to move from my bed. So, I thought now was a pretty good time to post such a raw and honest post. This month has been a big reality check for me and I've had to recognise just how bad my health is right now and I'm even less honest on social media about my life. So, here we go.


During Marfan Awareness Month in February I talked a lot about my story and experiences of treatments, surgeries etc but I felt it was important to also share the side of this condition that I often don't talk about. I'm very guilty of painting on a smile, encouraging positivity or just downright ignoring issues but life isn't always easy and I think sometimes I've come across braver than I am and made my surgeries and even just my daily life look a lot easier than they are. It's taken me a while to decide whether to do this post but I feel like it's time to be open about life, especially this past year. Some amazing things have happened but between that there has been a lot of pain, tears and feelings of hopelessness. Basically, having a condition like Marfan can be really tough sometimes.

Of course going through 2 spinal surgeries and a hip replacement was tough but it was last year's 2 lots of bad news that hit me hard. After over a year of chronic back pain so severe that I was using a wheelchair I finally received a reason as to why it had happened. We had always assumed that it was related to my spinal surgeries so to find out that in fact it was a whole separate problem was a bit of a shock. I received a diagnosis of having a tarlov cyst in my sacrum, it's a kind of cyst that grows out of a nerve root along your spine and then fills with spinal fluid. At first I didn't know much about it so went away, did some research but didn't worry too much until my next appointment, I guess I just assumed that a diagnosis meant a guaranteed treatment. That definitely wasn't the case though because at my next appointment I was hit with the very heavy news that despite the fact that the cyst was eroding away my sacrum, leaving me at risk of fracturing it, there was in fact nothing they could do. There was a surgery avaiable but it carries big neurological risks and after a meeting between various surgeons they had decided that chronic pain leading to the use of a powerchair was not enough to warrant such a big operation. My whole life had been put on hold at this point due to the pain and so it was devastating to find out that they weren't going to do anything. I felt so hopeless and like life was never going to get better, it was a pretty scary time and to be honest, it still is.


My mind was then distracted by more bad news at a cardiology appointment soon after all this had unfolded. My heart problems had finally reached the point where the words 'surgery' and 'operation' were starting to be used. My cardiologist gave me information that my previous hospital had withheld from me because of my age resulting in quite the shock for me to find out just how bad my heart was. She predicts that I'll need major open heart surgery in my early twenties, I had always assumed I wouldn't need such surgery until I hit my 30s or even my 40s so it was a surprise to say the least. I went back and forth between 'it's not a big deal' and panicking quite a lot for weeks and even now it's something I'm having to get used to. My next appointment is in June and I'd be lying if I said I wasn't worried about the outcome of that.

There's the everyday feelings as well though and the physical symptoms that limit my life. I wake up and I'm in pain, I go to sleep and I'm in pain. It's an exhausting pattern and even more exhausting not getting a break, add in all my other symptoms like fatigue, joint dislocations, migraines and more and there isn't much time left in the day for me to breathe let alone get anything done. It's been tough keeping up with blogging over the past year because of this and you can tell by how little I've been posting compared to previous years, my ability to sit up comfortably has had the most influence on this and it's so frustrating. This is most annoying when it comes to getting around in my powerchair though, it's great that I have a way to get around but I cannot even sit up for very long in my chair without the pain becoming severe. Whenever I go back down south to see family or head to London for appointments and charity work I end up close to tears just an hour into the train journey. I used to want to be able to continue my education like everyone else or work like everyone else but these days I just want to be able to sit up for half an hour pain free. As it is I spend most of my day laying on my bed but days where I cannot move from my bed, except to use the bathroom, have been becoming much more common. I'm at the point now where blogging, the one thing I've always been able to do, is becoming challenging and near on impossible some days. I'm quite hard on myself when it comes to this and I'm trying to work on this through CBT but it's so difficult adjusting to my ever changing abilities.

I feel like some people might label this post as being negative but in truth this is just the reality of having a condition like Marfan and the reality of my life. It's time to start being more honest about this.
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8 comments

  1. Sending so much love to you xx

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  2. Thank you for being so honest xx

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  3. All the love girl, although you're talking about your struggles here I could see so much strength shining through! I hope today is wonderful for you xx

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  4. Thank you for opening up about your struggles! You're a strong, lovely woman and I wish you all the best!

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