This series outlines my first five years of living with Postural Orthostatic Tachycardia Syndrome (POTS) from initial onset to recovery and more! Get my Guide to Living with POTS here which contains tips and tricks for living well with POTS. As well as three personal stories from real people who live with POTS.
Read Living with POTS part 1 here, part 2 here and part 3 here
Living with POTS Part 4: Relief at Last
By K W Warburton, The Reluctant Spoonie
My 4th year of living with POTS started with a new treatment. I’d requested IV saline as an alternative to my other blood volume medication. In the UK, this is not a common treatment and to my surprise, my doctor approved it.
‘It’s just saline.’ He replied.
I was over the moon at starting a new treatment and hopefully getting my life back. I started in February with infusions every other week. By the end of March, I was well enough to go outside unaided. At the start of April, I reapplied to university. I wanted a fresh start, so I applied for a different course to the one I was studying before. Additionally, I decided against applying to my old university as their disability support was non-existent. By the middle of April, I had my place confirmed for the autumn. I felt like my life was back on track.
Building Strength
Of course, I still had a long way to go with regards to reversing the effects of being bedridden for so long.
I started a graded exercise programme to help me build up muscle strength so that I could be out of the house for a longer period of time. Beginning with floor-based muscle strengthening exercises and over time, I built up the core strength required to stay upright for longer periods of time. I was able to get a part-time job as a dog sitter which meant that I could work from home and also get paid for daily exercise (+ spend time with cute doggos).
By the end of the summer, I had built up enough strength to spend 3/4 days per week out of the house. My husband and I went on our long-awaited honeymoon to Iceland which was something that I had been looking forward to for many years. I was apprehensive about travelling so far and on an aeroplane, but we were able to have an amazing time together. However, I had planned the trip so that I could rest a lot and still enjoy all the tourist attractions and I even made it to the top of the Hallgrímskirkja church!
Starting over
I started my MSc the week after I returned from my honeymoon. I had applied for disability support and had my paperwork all set up. When I saw the word ‘physical’ next to my illness on the forms, I was overjoyed.
During one of the introductory sessions during the first week, I had to fill out a health form. Of course, I was the last one in the class to finish because I ended up writing a mini-essay.
Making friends on my course was surprisingly easy as we already had a lot in common. Adjusting to ‘normal’ life again was a challenge. I no longer had to think about my POTS every five seconds because I had so many other things to think about! I had seminar work, assignments and so much reading to complete each week that I had very little time to think about anything else.
On the face of it, I was a normal student again.
When I wasn’t on campus, it was a different story though. I spent two days per month at the hospital receiving my infusions. I took my laptop and did my work there. My first assignment grades were good, but I knew that I could do better.
I started getting up earlier on days when I was studying from home which is always a challenge when you live with POTS. I did not share my illness with my course mates as I just wanted to be a normal student when I was around them.
By the end of the year, I felt like myself again because POTS was no longer governing my life and I now had a future to plan for.
What I learned during my fourth year with POTS:
1. The right treatment can give you your life back
2. Don’t ignore the long-term effects of being bedridden
3. Introducing exercise at the right time can aid your recovery
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Kadie
I am so happy that I found these posts about POTS. I have been searching the internet for stories to see how similar they are to mine. I am not diagnosed but in doing my own research I am highly suspecting I may have both POTS and MCAS. I have other chronic illnesses but they don’t fully explain some of my symptoms I have been experiencing for the last year or two. The fatigue you describe is so much like mine. Even sitting upright on the couch typing this right now is taking so much out of me that I will end up likely laying down for a bit. Did yours sometimes go in waves? Or pretty constant all the time? I sometimes have some good days but more and more they are bad. The other things you describe with feeling exceptionally tired, your heart rate (mines always high 80’s to low 90’s when at rest sitting, sometimes down to about 75 when laying for a long time and up as high as 120-150 when standing), nausea (pre-medication), vomiting, feeling off-balance or like your going to fall, the brain fog/memory issues, trouble opening/holding things (just don’t have the energy mostly), and just the general feeling of malaise. I feel like I am constantly dragging my own body around trying to get things done, the energy to even stand from a sitting position takes everything out of me and leaves me “seeing stars” (or black spots/blackness). I can’t seem to get up early if my life depended on it cause I will just fall back to sleep or feel useless. I feel like every little thing I do is a struggle but I am having a hard time convincing my doctor anything is wrong and can’t just go to another one as it doesn’t work that way here. It’s so frustrating. I can understand a lot of what you went/are going through and hope that you are now getting some relief! I plan to save and visit your blog to see how you are getting along.
The Reluctant Spoonie
Thanks so much for your support ❤ I hope you find some relief and a decent doctor soon! – Katherine