At the beginning of February, I made a vow to write at least one blog post a week in aid of Marfan Syndrome Awareness Month. That has proven to be a very challenging task, but I’m trying. Unfortunately, my plans very rarely run smoothly due to my chronic health problems. I can’t just do as I please when I please. Like many with hypermobility-related conditions, I have to wait until my body is up to the job. So if my back won’t allow me to type on my computer, then a blog post isn’t going to happen, no matter how much I endeavour to get it done. That’s the Marfan-Life. That is one of the daily realities of Marfan Syndrome.
It’s been a little bit disheartening having to slow down my awareness-raising efforts because doing my bit to support the cause in my own way, is vitally important to me. It’s a given that I can’t do a lot, but I like to do what I can. I’m not able to go out campaigning or raising money for the Marfan Trust. However, what I can do is use my blogging platform to highlight this largely overlooked condition.
Frustratingly for me, I haven’t been able to match my self-imposed expectations so far this month, which is upsetting but it is also a prime example of what life is really like with chronic health conditions. It’s the reality for me, and countless others who live with connective tissue disorders and hypermobility-related conditions on a daily basis.
Although I am a little behind on what I had hoped to have achieved this month, I’ve decided to carry on regardless as there’s still a bit of time left before Marfan Syndrome Awareness Month ends.
In my previous post, I talked about what I had gained from Marfan Syndrome, however, to leave it at just that doesn’t paint a fair picture of the reality of life with this condition. So, let’s go through 7 things which cause me grief and are most troublesome; the not so shiny-happy side of Marfan Syndrome.
Let’s talk about my daily realities of Marfan Syndrome.
1. Chronic Pain: Although there are many symptoms and secondary conditions of Marfan Syndrome, chronic pain has the most significant impact on my daily life. I suffered with it long before I even knew I had the condition, and since my diagnosis, it has gradually gotten worse. It’s something that I have to manage 24/7, which includes pacing (prevention) and symptom management.
2. Hypermobile Joints: for some people, hypermobility isn’t too much of a problem. But when it’s part of a more life-threatening condition such as Marfan Syndrome, it can be much more bothersome (although everyone with Marfan Syndrome presents differently). Simple tasks are made challenging due to loose joints. I’m frequently losing grip on things like my toothbrush, cutlery, pens etc. It might sound funny, but when that’s your life on a daily basis, it becomes tiresome!
3. Spinal Surgery: I had to have an operation to correct scoliosis (a symptom of Marfan Syndrome) at 13 years old, and I was left with lasting damage due to some loose and protruding hardware. Again, this is something that I have to manage on a daily basis.
4. Medications: I take a variety of meds for various conditions (most of which I wouldn’t have without Marfan Syndrome); sometimes I feel like I’m swallowing one pill after the other. It’s a nightmare trying to fit them all in. And some days I just feel so sick and tired due to so much medication swirling around inside me.
5. Chronic Tiredness/Exhaustion: This is something that severely interferes with my daily life due to the effect that Marfan Syndrome has on my body. I’m in a constant state of tiredness because my muscles are having to work extra hard to compensate for my extremely loose joints. That’s on top of taking medications that cause drowsiness and dealing with chronic pain.
6. Postural Orthostatic Tachycardia Syndrome: Not many people are aware of this condition, but I have the displeasure of living with it as a secondary ailment of Marfan Syndrome. The symptoms are triggered when doing things such as standing on the spot, or standing up from sitting or lying down, which means I need to make sure there’s a chair or something to hold onto close-by at ALL times (that can be tricky if you have to go out).
7. Not Being Able To Shower As Easily As a “Typical” Person: I can’t just jump in and out of the shower and then carry on with everyday life as most typical people can. In fact, I can’t shower without needing to lie down afterwards, which is due to dizziness brought on by POTS. And because of the metal rods, screws, and bolts down my spine, my movement is restricted, so showering becomes a work of art which I think I have almost mastered after all these years!
So there it is. Seven troublesome facts of my life with Marfan Syndrome. I could easily write seven more; there is no shortage of symptoms and syndromes associated with Marfan Syndrome which cause grief. However, I’ve learned over the years that staying focused on the negative aspects of my condition, the ones that bring me down, doesn’t get me very far… other than down. So I choose to look on the brighter, shiny-happy side of my reality whenever I can.