Dysautonomia Awareness Month 2014

October is Dysautonomia Awareness Month! I am going to do a series of blog posts this month to try and raise awareness of this illness and educate non sufferers. My first post is going to explain to you what Dysautonomia is and what a typical day in the life of a sufferer is like.

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What is Dysautonomia? (Definition taken from Dysautonomia International)

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfnction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates etc.

Over 25 million people worldwide live with various forms of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.

I have a condition called Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dysautonomia. POTS causes lightheadness, dizziness, fainting, tachycardia, chest pains, shortness of breath, chronic fatigue, stomach upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.

 

A day in the life of a POTS sufferer…

You wake up around 9ish; you never feel refreshed in the mornings no matter how much sleep you get. It feels like you have been out drinking and partying all night as your head is absolutely pounding. You’ve only slept for about four hours as you have insomnia. It takes you ages to muster the will to get up, over an hour in fact. When you sit up, that’s when your head really starts to pound and the room spins. You open the curtains, the light feels so bright it’s painful because you have terrible light sensitivity. Your eyes feel like you are reopening a wound from the simple act of blinking. You stand up to go down stairs and your heart immediately starts pounding. By the time you’ve got downstairs you are really out of breath, exhausted and weak; you need to sit down before you start making breakfast.

Making breakfast is so exhausting. Your heart skyrockets and is pumping so fast in your chest. It’s probably beating about 170 beats a minute now just from that tiny bit of exertion and blood has pooled in your legs and feet. After making your breakie and eating it, you need to rest your head, it can’t be upright for very long, so you park up on the sofa and watching some telly for a couple of hours (This Morning and yesterday’s Hollyoaks are my staples). You try and read but you can only manage this for a very short period due to brain fog. You have to drink about three or four pints of water and take your medications. Your head gets even worse through the morning, it’s painful all across the front and back and there are sharp shooting pains in the centre and behind your eyes. What’s more there is an intense pressure on both of your temples – making it feel like your head is about to explode!

Time to have a shower. You dread showers as they make you feel absolutely awful (see my post on Showering When Sick). You have to use a shower stool as standing for the length of your shower will cause you pass out. The shower is cold as heat makes your heart rate increase further which is definitely not what you want. Lifting your arms above your head to lather the shampoo and conditioner makes them ache, they feel so weak. You sigh with relief when the shower is over. They say having POTS is like running a marathon all day every day. But showers feel like you have added an additional marathon on top of the one you were already running. You now have to rest flat on your bed, with no stimulation – no phone, no music, no TV etc.

Lunchtime feels much the same as breakfast. You’re so tired and weak it feels like you’re forcing yourself to chop those vegetables. After lunch you’re so bored. You can’t watch anymore telly as your eyes and head are so sore and can’t cope with anymore stimulation. You wish you could call your friends, but you’re too tired and it would probably cause you to feel worse due to over-exertion. Talking is tiring.

3pm … You’re wrecked. Time for a sleep. Back up to bed you go. Being horizontal feels so good. It’s probably the only time you have “proper blood flow” throughout your body.

5pm Your family get home from work. It’s so nice to talk to someone :)

6pm you muster the energy to get out of bed again. You feel so rough now as your symptoms get worse through the day. You’re dizzy, fatigued and you have a nasty migraine. You help your family cook dinner so that you can feel like you have achieved something today. You have to sit on a stool to do this. You’re not hungry as you’re so tired but you must force yourself to as otherwise you’ll feel worse.

By 7:30pm you’re too tired to do anything. You want to go to bed there and then but it’s too early and you wouldn’t sleep. So you curl up in a ball on the sofa and try and watch some telly again as you love nighttime TV. Particularly the Bake Off 😉 By 9 you need to lie flat as your head is so bad.

Bedtime involves listening to some relaxing music or doing some mindfullness to help you get to sleep. You finally drift off around 2am.

Can you imagine living like this everyday?  It’s probably hard to imagine for you as you’re so well. Since January almost every day has been like this for me. I do have better days where I can manage to go out for an hour which is such a treat, and I have worse days where I have to spend most of the day in bed. Life is tough at the moment. Really tough. But I will never give up and I am holding onto bucket loads of hope that one day soon things won’t be like this :) and I cannot wait for that day!!! 

My favourite quote: Just when the caterpillar thought the world was over... It became a butterfly :)

My favourite quote: Just when the caterpillar thought the world was over… It became a butterfly :)

I really hope this has helped you gain a better understanding of dysautonomia and you can help me spread awareness for this debilitating chronic illness! So if you get the opportunity, please share some info, here’s a few ideas for links you could share…

Dysautonomia international

POTS UK

POTS UK Facebook Page

 

12 Comments

  1. Joanna October 6, 2014 / 1:48 pm

    Thank you so much for sharing this; it really gives such a good insight into what POTS is like. It must have been a lot of effort for you to write the post too. Really glad you still have hope despite everything. Keep it up and I hope today is one of your better days :)

    • spooniesophia October 9, 2014 / 12:57 pm

      No problem Joanna! Yes it took a while as I had to have so many breaks as I can’t concentrate or look at screens for very long :/ plus I have to write lying down which is tricky! I hope you are well and thank you for your lovely comment :) xx

  2. berrystylegirl October 6, 2014 / 5:34 pm

    Sophia, you are a gem, I appreciate your attitude and respect you so much. Girl, you’ve touched my heart once and from that time it’s always open for you. Thank you for sharing this – guess writing is also not an easy task for you.
    Do you want me to ‘reblog’ this? Or something else?

    • spooniesophia October 9, 2014 / 1:00 pm

      You are so sweet Polina! You always take the time to comment, thank you so much. I would love you to reblog this and help raise awareness! Thanks again xx

      • berrystylegirl October 9, 2014 / 2:41 pm

        Done it. lovely. I’ll try to find time and translate it to Russian on weekend.

  3. Kim October 7, 2014 / 1:51 am

    I hear you! I am doing better but I spent two years straight in utter discomfort just as you described. :( I do feel your pain. POTS is horrible. But hang in there as it can improve!

    • spooniesophia October 9, 2014 / 1:01 pm

      Sorry to hear that Kim, but I am so happy for you that things have improved! Thank you, I hope so. Is there anything you have found particularly helpful? Meds etc? Xx

  4. abodyofhope October 9, 2014 / 9:01 am

    I love your take on POTS bc it’s very personal. Thank you for spreading awareness.
    I did my first POTS entry yesterday & ended up in the ER for chest pain. Ironic much? Lol. It was a good Dysautonomia Awareness Day for us though! Great article! I’m following :)

    • spooniesophia October 9, 2014 / 1:02 pm

      No problem :)
      Gosh that’s awful, I hope you’re home now and feeling a little brighter and the pain has gone! Sending healing love xx

  5. berrystylegirl October 9, 2014 / 2:40 pm

    Reblogged this on berrystylegirl and commented:
    It doesn’t matter, where do we live and what we are doing – we all can do something to share the message. Hardly recommend you to open your heart and read this post. Once again – thank you, Sophia for being so brave and wonderful!

  6. Elaine Bailey November 2, 2014 / 9:09 am

    Sophie, been reading up on this blog again as spending time with you has made me so aware of the impact POTS is having on your life and how little I understood about it. I know you will hold on to that fabulous positivity, feel better soon, your Auntie E x

  7. Stephanie February 10, 2015 / 4:57 am

    Wow!!! I feel like you just completely wrote my life out for me!!

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