Molly: My journey with PoTS
Hi, I’m Molly; I’m 20 and have had PoTS since I was 14.
The last six years have been quite a journey; the strangest thing is getting this illness so quickly and not knowing what is wrong at all.
I went from being a fun loving, hardworking girl, to one day, after having a short virus and then a vaccination, waking up not being able to physically move or speak. I can remember having thoughts like “this has got to be a dream, what is happening?” but I felt so ill I didn’t even feel scared in a way, I felt too poorly. My arms felt so heavy that it was hard to move them, my head had a searing pain in and any light that came into the room made it a lot worse. I remember trying to tell my mum that this “felt different, felt wrong” but I had no idea that it was the start of an illness that was to become part of my life.
After being bed bound for around a month and a half I was able to move to the sofa and this was when my parents took me to a paediatrician, whom told me I had post viral fatigue and that I should just “take a holiday”. At this point to even manage a short journey in the car meant that I couldn’t speak for the rest of the day and was confined to the sofa. Luckily my parents always listened to me, and took me to appointments, never giving up. When I stood, walking felt harder than anything I’d ever had to do, despite always being active and swimming weekly. It is down to them pushing that I saw various doctors for the various symptoms that seemed to affect every part of my body. My migraines helped by a neurologist, my reoccurring sinus infections helped by an ENT doctor, but none could explain my extreme and debilitating fatigue, loss of short term memory and constant aching in my arms.
At this point I was still confined to the house most of the day, I watched my peers doing their GCSE’s and was desperate not to fall behind so I tried into school whenever I could. I couldn’t stand the lights and noise and so couldn’t go in the classroom but I just wanted my normal life back as best I could and so I taught myself in a separate room with text books. I couldn’t read more than a few pages of a text book and could usually only manage 30 minutes or possibly an hour on a good day, but after that I would need help to walk out of school and would spend the rest of the day in bed.
It was definitely too much but I didn’t have answers from any doctor that could help and to carry on as best I could made me feel calmer in the scariest time ever.
I was put in for an exam I explained I thought was too much for me, my wrists were too weak to write and I couldn’t concentrate at all, but the inclusion team who hadn’t experienced pupils with chronic illness said they thought I could and put me in for it. I wanted to do my best and not let anyone down but after completing half of that exam I could no longer feel my arm and had to be escorted as (I was too weak to walk unaided) to the car. From then on I was too ill to attend school at all and had a home tutor that enabled me to gain 4 and a half GCSE’s - of which I am immensely proud.
It was during this time I was officially diagnosed as having Chronic Fatigue Syndrome/ME and put on a pacing plan. This involves increasing your activity slowly in aim to hopefully increase your energy levels. This treatment is helpful for some patients who have ME, but they couldn’t understand why I couldn’t get past a certain level of activity and said that I was showing symptoms of anxiety. I remember thinking that I didn’t feel anxious at all; maybe only for the fact that I felt I was getting worse on the plan. They referred me for cognitive behavioural therapy, which again is known to help some ME patients, but I was discharged after the nurse agreed I wasn’t anxious, but listened when I said I had weird physical symptoms such as palpitations.
After joining groups of parents also with children with ME, my mum soon found out about PoTS. I was lucky to see a PoTS Doctor in London who unusually saw child patients (as I was 15) and was diagnosed with PoTS after a tilt table test. It was then that I was put on ivabridine and prescribed compression tights that enabled me to at least feel a bit better and to attend a short course at college for only a few hours a week. I then got referred to a PoTS team closer to home along with a fatigue clinic that increased my dose of this medication that enabled me to get stronger still, as well as increasing my salt and fluids.
This was a huge help. I travelled with friends to Amsterdam and although my Mum had to come as a carer to push my wheelchair so I could see the sights, I felt so lucky to be able to go, I also started volunteering at group that helped children with special needs access performing arts and felt so happy to be able to help children with varying disabilities, especially as I was born with cerebral palsy but was lucky before PoTS to have an active life. To be able to help children, to tally the weekly fees and help out with activities and food preparation made me feel more human again. I also started helping out at a local brownie group, I felt stronger. A few months later I was eventually able to begin A Levels aged 18 and luckily my college have been far more supportive than school ever was.
At this point I felt the strongest I’d ever felt. I took 3 subjects at AS Level and after leaving the lovely group that helped me so much, I felt well enough to volunteer at a local Hospital Radio station for two years (something I’d always wanted to do as an aspiring journalist). I also began learning to drive. However, as is the case with this variable condition it isn’t all plain sailing, my second year wasn’t as simple and reoccurring chest and nasal infections meant that I had to stop this job, as well as stop learning to drive and was allowed to complete 2 A levels and take the third subject this year. This was devastating and deeply confusing - I thought I was recovering?
It was only when I was referred back to an immunologist that helped me with my infections at the beginning of my journey, that I was immunised after they found I had no resistance to pneumonia along with other deficiencies that prevented me fighting infection. I was also able to try antihistamines usually used to help patients with the condition “Mast Cell Activation Syndrome” after showing symptoms of this condition although I'm not officially diagnosed. I can't begin to explain how much these have helped me and it is from these tablets that I have become much stronger again. I'm now able to read (something I couldn’t manage easily since I first became ill) and I'm able row or swim for forty minutes every other day! After being an active swimmer growing up, this means the world, especially as I'm noticing my PoTS improving through this a great deal.
Having this condition has definitely changed my life but I try and focus on the positives. It’s made me closer to my family, to know that my friends are amazing. They are the people I owe a lot of my recovery and mental well-being to. It’s only now, as I’m strong enough to feel - I get immensely frustrated that I can’t do everything I want to or feel anxious for the future. Whilst I’m seeking help with through counselling, my friends are a massive help in making me remember I am always me first, that PoTS is such a small part of me. I found blogging my experiences has also really helped me to feel like I have a voice and that I can do something to combat any ignorance or lack of understanding there is around the condition.
Whilst I still am nowhere near able to have the life I used to and extreme fatigue and achiness still plague my worse days, I’m a million miles away from where I was.
I know there are more and more doctors understanding PoTS every day and with each year that goes by more research is being undertaken. Even in my lifetime medications that I’m only just being offered are changing my life- I can’t wait to see what the future holds. For anyone in the same boat remember simply, you are amazing, you can do this.
Links to PoTS related posts on my blog: