This series outlines my first five years of living with 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 and Part 2 here

Living with POTS Part 3: A Spoonie Wedding

By K W Warburton, The Reluctant Spoonie

My third year with POTS started with a neurology referral and tests for Multiple Sclerosis (MS) due to worsening neurological symptoms (I later found that these symptoms were just a severe side-effect of one of my medications). An hour in an MRI machine is enough for anyone to realise that they are properly sick and their illness is not just ‘in their head’. I was informed that there would be a 12-month wait for these results.

In the meantime, my boyfriend and I decided that after five years together, it was time for us to get married. We set a date for our wedding for the Autumn, leaving us with only six months to make preparations. We had been delaying our wedding for a long time, waiting for when I would be ‘a bit better’, but with a possible MS diagnosis hanging over us, we didn’t want to wait a moment longer. As I was no longer bedridden and could handle a few hours outside of the house we took the plunge and applied for our notice to marry at the local registry office.

I single-handily planned the whole wedding from flowers, venues and outfits. We only invited close family and friends and decided against having a reception. Just a ceremony and small wedding breakfast (the meal after you get married) with drinks in the evening if I was able to.  The venue we chose to host our wedding breakfast had a dedicated wedding coordinator who took care of catering and even the wedding cake for us. I chose not to disclose my illness at this stage of the wedding planning to vendors as it didn’t concern them. The only person I disclosed my illness to was the wedding photographer as I would be sitting down for the vows.

Read tips for planning a Spoonie friendly wedding here

The month before the wedding, I ended up in A&E for the first time in over a year as my medication had stopped working and I was experiencing chest pains and breathing problems again. They tested me for a heart attack, but I didn’t get a chest x-ray as I usually did. The doctors at this particular hospital were not very kind, been though I had been instructed to attend by my GP.

“What do you have?”

“POTS. Postural Orthostatic Tachycardia Syndrome.”

He shook his head and grinned “Say that again. Slowly.” As if he’d never heard those words before in his life.

“Postural. Orthostatic. Tachycardia. Syndrome.”

More blood tests were ordered which came back normal.

“I don’t see anything wrong with you. It’s probably just that postural thing you have.”

We left, even though I still felt the same as I had when I’d arrived. I had to make a decision about my wedding. Did I want to postpone or push through? I decided to keep the original date as everything had been ordered and our plans had already been delayed by over a year due to this illness. At this stage, I informed my wedding planner about my illness and told them that I may not be able to attend the whole wedding due to my illness. They could not comprehend the concept of a life-long chronic illness and stopped communicating me after that.

Like many, my wedding day did not go to plan. My stylist ended up in the hospital herself the day before my wedding. The company that I had booked her through sent someone else. However, she did an OTT bridal make up look that was much more than the subtle make-up that I’d requested. The ceremony itself went as planned and I was able to sit for the vows. The wedding breakfast was not how I had planned. The wedding planner did not show up and the staff that were put in charge did not seem to be aware that they were catering a wedding. My arrival drink was not there on arrival and a glass of champagne was pressed into my hand instead which I gave back. The food was not the quality that I expected for the price that we had shelled out and there were nuts in the brownies even though I had specified no nuts (everyone knows that walnut ruin brownies). The cake cutting was a shamble and my maid of honour had to take over. Overall, it is not a day that I will remember or cherish forever. My new husband and I set off for our Mini-moon to Edinburgh and tried to put the whole event behind us.

After my Mini-moon, I was scheduled to try a new medication for my orthostatic intolerance. Midodrine is a common medication used in POTS to constrict the blood vessels and increase blood pressure. Unfortunately, I had an allergic reaction to this medication and was rushed to A&E for the second time in less than 6 months. I had to stop all treatment at that point and take anti-allergy medication and steroids for two weeks for the effects of my allergic reaction.

At this point, I was on no medication for my orthostatic intolerance and I became bedridden again. Shortly before getting married, I had moved house, so I was no longer under the care of my good GP. My new GP was unable to help me with regards to my POTS symptoms and I was told to wait for my next cardio appointment in 3 months. 3 months is a long time to wait where your condition is deteriorating day after day.

During these 3 months, I researched all the available treatment options that I had left. The only one that seemed feasible was IV saline infusions. I knew that these were a long shot as doctors in the UK are reluctant to prescribe this off-label treatment. I wrote to my consultant outlining my plan and I waited for my next appointment to arrive.

What I learned during my third year with POTS:

  1. A diagnosis doesn’t protect you from medical negligence
  2. Allergic reactions can be life-threatening
  3. Life goes on even though you are sick
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