Jenna: It’s just a bad day – not a bad life!
My Name is Jenna Robinson, I am 25 from a small village near Omagh in Co Tyrone. Within the past year and a half I have been diagnosed with POTS.
My journey began just over 3 years ago, with dizzy spells, palpitations, sweating, power loss in my legs, and worst of all fainting! Oh how I hate fainting!! Before all this I was your normal typical 20 year old, running about without a care in the world, until that day where I thought life would never be the same again.
A lot of people don’t know an awful lot about POTS, let me enlighten you – I look normal, my hair is always done, my make up to perfection, I’m not overweight or underweight, I always make a conscious effort with my clothes (normal person). NOT, underneath, I use a shower chair every morning because I can’t stand for long without passing out, I break out in sweats during the day (perfect make up gone) I’m breathless walking up stairs, I take salt for breakfast to raise my sodium levels, my heart feels like it’s going ten to the dozen and going to jump out of my chest – I am far from Normal! Make up and fake tan has a lot to answer for!
My nickname in work is Casper (Casper the friendly ghost) because I’m usually as white as a sheet. Not the most flattering of nicknames, but definitely accurate. My work by the way is a Payroll Technician in a large Meat Factory; they are more than good to me with my condition.
So Doctor after Doctor, test after test and disappointment after disappointment that’s where I started. After every medical test I would come out in such bad form that nothing was found, no one had my answer; no one knew why I was sick!! Days I couldn’t get out of bed, no energy, lifeless and faint, I couldn’t feel my legs, when I would stand up I’d faint. It frustrated me something unimaginable; that I had no control over my body! Do you know how that feels? Feeling sorry for yourself isn’t the answer, but you do it regardless. My mum, Hazel also know as Wonder Mummie – she is the reason I am as well as I can be, she would have none of my wallowing, if I wasn’t well she would get a phone call and come straight down to my house no matter where she was. She would pull me out of bed, help me dress, get my tablets, sort my hair – whatever it took. It makes me smile to know just how good my family are, not forgetting Mattie, my husband. Mattie would help me upstairs to bed, cuddle me when my world was falling apart and comfort me that everything would be okay. Mum and I toured the length and breadth of the Country seeing several Cardiologists, I had a 24 hour heart monitor, a TOE (Trans-Oesophageal Echocardiogram), several ECG’s and blood tests, treadmill test, and a 2 week monitor which finally showed up sinus tachycardia. Google was my best friend, not a good idea; your mind goes into overdrive. My cousin is a Consultant and he suggested it could be POTS, this was my next move, I saw the website and asked my GP to refer me for the tilt table test, which would prove if I either had it or not. Here I met DR Purvis, a gentleman who has dealt with me and my mum from the beginning to now, when we first met, he vowed he would find out what was wrong with me, - I laughed, I thought yea right just like every other Doctor! But he was true to his word and after the tilt table test he recommended medication, the first round of tablets didn’t agree with me, so back to the drawing board a few more times until finally Midrodrine 3 times a day worked a treat. I still see him every 8-12 weeks.
This journey has not been easy, but I can tell you that after the storm there is always a rainbow. It has been a challenging few years, for me, Mattie, and my family. A small bug or cough can put me back weeks, but with every small step I’m moving forward because I am a wife, a daughter, a sister, an aunt, a friend, a niece, a grand-daughter, I have lots of people who care for me, lots of people who pray for me and although I look normal I have an invisible illness called POTS but it does not define me.
Remember that one day – when I thought life would never be the same again, I was right it’s not. I have this sickening postural orthostatic tachycardia syndrome that holds me back sometimes, but I’m living and getting back to normality, I might not run a marathon any time soon, but I can walk stairs without feeling breathless and it’s a good start. Someone said God won’t give you more than you can handle – well I disagree, he is constantly handing out challenges but its how you chose to accept them, because with Him anything is possible. My mum got me a bracelet on my first hospital appointment day, I’ve wore it from that day to this, it’s of an acorn, and it says “the tallest Oak in the Forest was once a little acorn who held its ground” it’s a constant reminder of how far I’ve came and a true test of patience, which I must admit I lacked back then.
Oh – have I told you I’m growing? Literally! We are adding to our family. I am 26 weeks pregnant and constantly growing, no one knows how my body will react during labour, so lucky me I’m having an audience, Obstetrician, Cardiologist and Anesthetist all there to welcome our new addition. I’m not sure how is it going to go, but I have faith that everything has worked out so far so I can only trust all will be fine. Plus nothing can damper this excitement, not even POTS.
It feels like a long time ago when I thought my world was falling apart, because I’m a planner, and this wasn’t in my plan, it was out of my control! But piece by piece you rebuild yourself, day by day; step by step and soon you realize everything is going to be okay. I have only one piece of advice and it’s what I had to learn! Its let people help you; you don’t have to do it on your own. At the start I was so independent but when you stumble and fall everyone needs a hand up every now and again with or without POTS. There is no shame in asking for help, and those family and friends who you know and love wouldn’t have it any other way. You are not a burden to them, it’s called unconditional love.
If you are having a hard time adapting – that’s normal, I am sure everyone with POTS has went through the same feeling, I am not the font of all knowledge far from it, I can just tell you my experience and how we are dealing with it together as a family. I’m excited for the future with our bump growing, but also under no illusion that some days are going to be tough, extremely tough but we will get through them, just as we have before... together. So yea to the outside world I am normal, but to those who know me best – I am a soon to be mum, a wife, a daughter, a sister...living with POTS one day at a time.
Every day may not be good, but there’s a little bit of good in every day!