Being a Dysautonomia Diva
So as promised this is going to a blog post on Dysautonomia.
Dysautonomia is an umbrella term for various conditions in which the autonomic nervous system malfunctions. For anyone that doesn’t know the autonomic nervous system is the part of the nervous system that is responsible for control of the bodily functions that are not consciously directed such as respiratory rate, heart rate, blood pressure, pupillary response, digestion, to name but a few.
There are many conditions that come under the umbrella heading of Dysautonomia and I have two of them which I will focus on.
Firstly I was diagnosed with Neurocardiogenic Syncope or NCS which quite simply is a loss of consciousness that is associated with a drop in blood pressure followed by a slowed heart rate. For those that would be aware of normal BP and Hr levels mine dropped to 45/20 and 30bpm during my tilt table test…… not good!!!
So basically at my worst I was fainting up to 15-20 times a day, so as you can imagine this had a massive impact on my quality of life for example I had to move back home with my parents, which was an adjustment in itself but only for them I wouldn’t be where I am today they have been beyond amazing. I also had to stop driving… for obvious reasons which meant selling my precious car which had only been purchased two months before I got sick, that broke my heart I must say. Also the practicalities of trying to leave the house when you’re fainting pretty much every half hour makes doing anything tough. My mum is amazing at making sure I get out of the house most days no matter how challenging it is for her, I think at this stage I’ve fainted in most shops in my local shopping center and the coffee shops know me so well that there is usually a glass of water waiting for me when I come round, which is great. In the beginning I had some anxiety around fainting in public, it’s not something that is ever pleasant to do but with the help of my psychologist who is a god send by the way, I have overcome my anxiety by using a variety of techniques such as mindfulness meditation which I might do a whole blog post on at a later date.
I also have another form of dysautonomia that I was diagnosed with in November of 2014 called Postural Orthostatic Tachycardia Syndrome or POTS. POTS is a condition in which a change form supine (lying) position to an upright position causes an abnormally large increase in heart rate a.k.a tachycardia for example the act of going from lying to standing could cause my heart rate to go as high as 150bpm and then the next minute I could faint and my heart rate is down to 20bpm which believe me makes you feel terrible.
NCS and POTS have many more symptoms for example when I’m close to fainting my pupils get really big which is actually quite handy because sometimes my mum knows when I’m going to faint before I do. There are many things that trigger my symptoms and it has taken a long time to realise what some of them are and learn how to prevent them for example I can’t stand in a queue for longer than a minute or two or I will faint so I don’t do queues!! Warm environments will also bring on symptoms, it’s not always possible to avoid warm places but I try. Noisy places and flashing lights also bring on symptoms so I try to avoid these when possible too. Also if I walk anymore than around 10 minutes (depending on the day and the symptoms that day) I will faint so I can’t really walk any distance and when I do I use a stick for support. Now this may sound like I have to avoid a lot of places and things, which I do but I don’t let this put me off getting up and getting out sometimes I have to go out and go places that will bring on symptoms otherwise I would never leave the house and I would not be ok with that.
It’s all about balance and pushing yourself but not too much, if I do too much today my body will tell me and I’ll pay for it tomorrow and maybe the next day with more symptoms and crippling fatigue meaning I will barely be able to get out of bed. You need to learn to trust your body and listen to what it’s telling you to do and also listen to your mum she always knows when you’re pushing yourself too far……. So now you know what it’s like being a Dysautonomia Diva, it’s a challenge everyday but I’m also improving and learning to live with it more and more everyday.
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