Susan

The fact that I have now written four blogs and joined the two ERG (Employee Resource groups) groups at work indicates my final answer. I also began to think if I wanted to play a part in making a better world for people with a disability then I had an obligation to set myself some goals, even if they were small ones.

I haven’t exactly taken the bull by the horns and shared my most profound experiences and thoughts over the last two years. I would need to consider for what purpose or whose?  – although when I was in one hospital for three weeks in November 2020 my What’s App with a group of girlfriends began to read like a novel with comments like ‘you couldn’t make that up if you tried, Su’ ‘Shall we put together a rescue team for you??’  ‘You should write a book!!’ and I discovered emoticons I never knew existed!

PoTS started on November 1st, 2019

I woke up feeling awful but couldn’t pinpoint why. The only symptom I had was a very stiff neck and pins and needles down my right arm. However, I was due to spend the day in Edinburgh with both of my daughters (10yrs & 26yrs – that’s a story for another day!) my mum, sister and niece. A long-awaited day out at the botanical gardens and then afternoon tea. My other half suggested I stay at home, and he could drop our youngest off with gran at the train station but after some painkillers I was sure I would be fine. How far off the mark was I in that statement!!

Let’s just say throughout the day I had to keep finding a chair to sit down and I was so pleased when it was time to head back to the train station. The last day of my week’s holiday has not been remembered for the lovely memories we made but as the day things started to change- how I was going to live my life going forward, and that wasn’t just me but my other half and our youngest daughter.

Over the weekend more symptoms developed and by Monday I knew I couldn’t go back to work and made an appointment with my GP. We were thinking a trapped nerve as I had had one previously, she was thinking, well, let’s just say we were lucky to have her that day. She was not a “fully-fledged” GP she was in her last year of training and looking back I think I became her pet project. My appointment lasted much more than the normal ten-minute slot as we talked about what had been going on at home, work and any other ‘health’ things that had been going on over the last year. As we chatted, she took my BP which was very low, I told her that I’ve always had issues with low blood pressure during previous surgery when I wasn’t allowed to go home straight away and over the last few months, I have often felt very dizzy and faint. In fact, I had passed out a few times recently for no reason but luckily, I was in the house. I also felt like this in bed, more so when I rolled over from my left to right side and sometimes when I close my eyes it is like I have a personal disco going on in front of my eyelids and a constant background noise that I just can’t explain in my ears, but I put this all down to my recent diagnoses of menopausal headaches.

I had blood taken

I was given anti-sickness medication and told she would ring me in 24 hours to see how I was feeling. She asked me to keep a record of any other symptoms. In the meantime, she would ask her supervisor for some support. She did, however, wonder if it was viral.

Between November 2019 and March 2020, I had repeated blood tests, I was sent for two MRI’s and a brain scan. I had two chest X-Rays. I was prescribed a myriad of different tablets to try and stop me being sick or feeling sick – none of them worked. I was passing out more frequently now and feeling faint on a much more regular basis. I was also very tired and often couldn’t have a conversation without getting muddled up (brain fog as we now know it) I was referred to a neurologist to see if there was an issue with my nerves. Now although he didn’t think there was, and he referred me to the ear, nose and throat team because he thought that my condition was all to do with the crystals in my ear moving around (there is no issue with the crystals) what did happen on that day gave us the breakthrough we needed.

My resting heartbeat was far too high

As with any hospital appointment, they check your BP, oxygen and heart rate, weight, and height before you go in to see the consultant. The nurse did mine then asked me to wait to be called back in. Which I did. After a few minutes, she came over to me and my other half and asked us if we had run up the hill to make my appointment in time. I looked at my other half then looked at the nurse and almost laughed, I couldn’t run anywhere even if I wanted to! I explained that we had casually walked up the hill and paced ourselves with sufficient time to get here for the appointment. She thanked me for my answer and left only to return a few minutes later to tell me that the consultant would like me to go to the cardiologist unit before seeing him. We both asked why almost at the same time. To be told my resting heartbeat was far too high and this needed to be looked at via an ECG.

Of course, all this information was shared with my GP who had also been talking to her supervisor at my GP practice. She also asked me if she could discuss my case at university as she was keen to get her peers’ input. I agreed the more input the better. She continued to ring me every few days, sometimes on an evening on her mobile phone to see how I was feeling. She continued to see me on a weekly basis. I was also now losing weight as I constantly felt like something was stuck in my throat. I hadn’t been able to return to work. We were now thinking the worst as I am sure you can imagine, and everyone was worried but not actually saying anything out loud. I checked all my pensions etc. to make sure there was sufficient money should things go from bad to worse!

The consultant was trained by a PoTS specialist

My GP also at that point referred me to the falls and syncope clinic which also had a team that could look at specialist cases of vertigo. My appointment arrived through the post, I was booked in for a tilt table test, I received a BP machine to wear for 24hours and I was booked to see the specialist to have the tests to see if I had benign paroxysmal positional vertigo. The consultant I was booked to see was trained by a PoTS specialist; I couldn’t have been more fortunate if I had tried. And six months after going to my GP I was diagnosed with mild Postural Orthostatic Tachycardia Syndrome and BPPV (benign paroxysmal positional vertigo).

I started on a regime of more liquid and more salt in my diet with a follow-up appointment in three months to see if this had rectified my symptoms. Unfortunately, for me, my symptoms had not improved but had got worse and been joined by other symptoms so the word ‘mild’ was removed and I was also referred to a gastroenterologist to look further into why I was being and feeling so sick and losing so much weight. Further tests were to follow which included swallowing radioactive omelette, having a camera inserted to look for abnormalities, and tests to see if my vagus nerve was damaged. I was also referred to a PoTS specialist at another hospital to look at what else could be done to support me. I was put on Fludrocortisone acetate.

I returned to work in the summer of 2020 having been off work for almost nine months. I went back full-time but worked from home. My core hours are worked to suit my health, allowing me to be flexible. For me, the pandemic worked in my favour as this meant I didn’t have to travel as I would normally have done prior to becoming ill. I normally travel to London from my home in Northumberland frequently.

I couldn’t even tolerate fluid

But in November 2020 on a Monday evening, I started to be sick once again after having the tiniest portion of vegetables. I couldn’t eat anything I was constantly being sick for the rest of the week; I couldn’t even tolerate fluids. and then it got to the point where there was nothing left but the lining of my stomach and I ended up in A&E. Initially, there were attempts to try and stop me from being sick and there were different thoughts and ideas as to why I was feeling sick, being sick and why I felt there was something constantly stuck in my throat. Everyone had a different opinion.

The most interesting thing to me was how many were honest enough to admit they didn’t know what PoTS was and could there be an associated link. I didn’t mind explaining, they only had to ask – I had done my research, so I was happy to share. That visit ended up in a three-week stay in hospital with a diagnosis of widespread autonomic failure and the beginning of my nail-by-mouth journey. I had an NJ tube down my nose directly into my small intestine to feed me. Between November and March, I had a total of seven. Including having to go into hospital on Christmas day and stay in until December 27th when it blocked twice to have two new ones put in. (Again, that’s another story and probably counts as the worst day for both me and my other half since this journey began and the only day when we both have broken down together).

I take one day at a time

On March 6th, 2021, I had a jejunostomy, which is a tube directly into my small intestine to create a channel for a permanent tube to be fitted later. I had the permanent tube fitted on August 31st. I know that it is unlikely I will ever be able to eat properly again, it is a little bit like trial and error. On a good day, I can have a cup of coffee, on a bad day I can’t. I’ve tried little things such as yoghurt, scrambled egg, half a slice of toast. Somethings I can manage other things just get stuck. I can’t ever have alcohol again!! I’ve also been told that my small and large intestine may stop working too or get slower and slower as it begins to fail as well. If I’m honest with myself I know that has started already but I take one day at a time.

I was at a hospital appointment this week -a new department, and surprise, surprise, the nurse specialist asked me if I would mind explaining to her what PoTS was. I could hardly say no, could I. I came away knowing one more person now had a little bit of an awareness of what one of my disabilities was. Then just by chance, I got an email from my bank asking me if I would like to personalise my bank card- not something I have ever contemplated doing. This time though, I thought, let’s go for it and let’s get people talking, and if I get asked the question, what does that mean, then I will happily answer the question…

I’ve discovered some people are anxious to share their stories with anyone who will listen, and it can make them feel less alone, a little like sharing their burden. Many draw strength and purpose from telling a story or two, explaining how they triumphed over adversity and came out of their battle smiling. They build new relationships and friendships and sometimes dispel many myths about disabilities and I’m happy to be the listener.

So how do you feel? Do you think we should talk more openly and share our experiences? If you were going to personalise your bank card, what would you put on it if you wanted to raise awareness and get asked some questions you wanted to answer?

“Raising awareness not seeking attention”

My eldest daughter bought me a badge to put on my backpack that I now must carry around with me everywhere I go as it has my feeding machine inside of it. The badge is simple, it’s a little grey cat holding a heart in its paws with PoTS written on the heart. But it was the card that came with it that really meant so much more. It simply said “Raising awareness not seeking attention”!