Rebecca’s Journey with POTS and Chronic Conditions: The Chronic Diaries
Where are you based?
I’m based in Wicklow, Ireland!
What chronic condition(s) do you have? Please briefly describe what they are?
I suffer from various chronic illnesses. The most prevalent I suffer from are POTs, chronic pain, chronic fatigue, Joint Hypermobility Syndrome, Gastro Acid Reflux with a hiatus hernia and chronic nausea.
POTs stands for Postural Orthostatic Tachycardia Syndrome. With POTs my autonomic nervous system doesn’t work properly. Normally when people stand up, their heart rate increases slightly to maintain blood flow to their heart and brain and this prevents their blood pressure from dropping. However, when I stand up, my heart rate goes through the roof and my blood pressure drops super low super-fast!
POTs is also responsible for a lot of my other illnesses as well. My doctors think it has caused my chronic nausea, pain and fatigue. As well as that, due to multiple concussions from fainting due to my POTs, I also suffer from ‘brain fog’. I lose my train of thought really easily, jumble up words and also have the concentration span of a goldfish. I’m also currently waiting for an investigation into whether I may be suffering from Post-Concussion Syndrome because of this brain fog.
Gastro acid reflux isn’t necessarily a chronic illness as it affects lots of people. I basically just have really acidic stomach acid. However, due to my hernia, my stomach can’t close the little flap up to my oesophagus so the acid can go up and down as it pleases, which hurts… a lot.
With chronic pain, fatigue and nausea, I don’t think there’s too much explanation needed! I find the most debilitating of the 3 is the fatigue. Have you ever pulled an all-nighter or even just went to sleep really late and had to get up early the next day, and feel really groggy & just exhausted? I feel like that after 12 hours of sleep. It’s gotten to the stage where I’m so tired all of the time that even when I’m in bed my body tries to fight sleep because it’s been fighting to stay awake all day and it doesn’t realise it can finally stop now. So yeah, being tired after 12 hours of sleep isn’t fun, I’ve even been known to manage to sleep for 18 hours straight, especially if my illness is flaring up!
When it comes to chronic pain, all I can say is when the doctor asks me am I in any pain my answer is, “nothing more than the normal amount”. Apparently, the normal amount of pain is none?
And last but not least, my most recent diagnosis, Joint Hypermobility Syndrome. This one isn’t fun at all and it’s also not too well known. Joint Hypermobility syndrome could also be responsible for my chronic pain and fatigue, especially the pain as my joints are so flexible that they essentially pop in and out of where they’re supposed to be, which obviously doesn’t feel very pleasant! It’s also responsible for my bladder feeling like it’s the size of a pea which isn’t fun because I can’t go an hour without complaining about how much I need to go to the toilet!
JHS has also given me major respiratory issues. I suffer from an asthma like illness which isn’t really asthma. That’s what my consultant and I have decided so far. We think the cartilage that’s missing from my joints is also missing from my airways which basically makes them floppy. This led to literally not being able to breathe sometimes and constantly being out of breath the rest of the time. Also, it made me really prone to chest infections. Luckily, now I’m not getting them as much but in 2019 I had at least 1 dose of steroids and antibiotics every month to clear an infection and some months it would be twice. I’d end up in A&E on a nebuliser some of the times as well. Looking back on it now, I got one chest infection and it never really went away.
What symptoms did you deal with before you were diagnosed?
The worst symptoms I had to deal with before my POTs diagnosis were my heart rate was always super high and fainting, which wasn’t all that fun. At one stage I was nearly fainting once a week, dealing with a concussion almost every time. The first time I had fainted I ended up in Tallaght Hospital. I was only 14 at the time and it happened in my kitchen. Whatever way I went down, I banged the front of my head off the sink and the back of my head off the tiled floor. Needless to say, I had a pounding headache and was severely confused after that. Despite all of this I still waited years for a diagnosis.
How were you diagnosed? What was your journey to diagnosis? (include dates/years if you so wish-it helps give people an idea of the long journey people go through)
After I had fainted a good few times I was sent to a falls specialist in St. James’ Hospital in Dublin in 2015. They performed a tilt table test and despite me crying in pain, feeling sick and almost passing out during it, the consultant told us that my illness was all psychological and sent me home. After that I was seen by a different consultant who did the exact same test and diagnosed me straight away with POTs. I feel the quote “doctors differ and patients die” is relevant here. After that, all the other diagnoses started coming in really fast, despite being treated for my illnesses I was somehow still getting sicker and sicker and life was getting harder and harder. Eventually things started looking up in 2018/2019, I was finally starting to cope and I was feeling so much better and then the chest infections had started. While right now my POTs is manageable, it feels like JHS has just taken it’s spot in trying to make everyday life difficult.
Did this journey have an impact on your daily life? Eg, dropping out of college, quitting your job/getting fired? etc
1000000% yes!! I dropped out of school in 6th year because of my illness and ended up teaching myself the leaving cert curriculum from home and still did my exams, but the lack of support I received from the school was shocking.
Are you on any medications?
Yep! I’m currently on 2 steroid inhalers to try control my breathing, Amitriptyline to try help with pain, Lexpro for anxiety and OCD, a maintenance antibiotic 3 days a week to try prevent infection, melatonin to try regulate my sleep and nexium to try calm my acid reflux.
What side effects do you encounter, if any?
Luckily, I experience no side effects at the minute, unless I forget to take my lexapro, then I get the worst headaches imaginable!
What symptoms of your illness do you deal with on a daily basis (even when on medications)? How do you deal with these?
Unfortunately, even though I’m on a maintenance antibiotic which is fairly strong, the odd chest infection manages to sneak into my lungs. As well as this, the antibiotic basically has my immune system non-existent, so I have to be so careful now with COVID because if there are any cold, flu or any form of infection floating about, the chances are I’ll catch it! My pain and fatigue are also still really prominent despite being on medications. Although my pain is manageable at the minute, it still affects me. Some days worse than others. The same with my nausea, some days I don’t feel sick at all and other days I can’t even think about food without wanting to vomit everywhere.
How does your illness impact you mentally?
I currently suffer from pretty bad general anxiety and obsessive compulsive disorder as a result of being so unwell.
How do you keep motivated dealing with your chronic condition in your daily life?
Some days are easier than others to keep motivated, some days I wish I could just get back into bed and pretend it didn’t exist. Other days I just embrace the fact that this is my life and it’s not going to change.
Is there any advice you would like to give to people who are on their chronic illness journey?
No one’s journey is the same, don’t compare your illness to others. This is easier said than done but try not to feel sorry for yourself, it’ll just get you down. Don’t get me wrong, there’ll be days that you hate that this is your life and how unfair it is. Let yourself have these days and allow yourself to get upset but then let it go and try to find peace with it.
How do you encounter people having your illness? Do people understand? Are they ignorant? What level of difficulty do you have with this, if at all?
No, people don’t understand at all. So many people see chronic fatigue as laziness. It’s so frustrating because I want to be active and have a ‘normal’ life but I can’t. People don’t see that though. People also hit me with the “but you don’t look sick”. My favourite answer to that “is and you don’t look ignorant but apparently you are”!
Is there anything you want to say to these people? Or the general public who do not have a chronic illness?
I think if you have nothing nice or beneficial to say then don’t say anything at all. Especially don’t tell me about your mam’s, goldfish’, sister’s, friend who died from my illness or who ended up really sick in hospital from it etc, that doesn’t help! Also, I don’t particularly care. If you’re not willing to listen to what I have to say about my illness then don’t ask me about it, and if you’re going to tell me that I’m ‘wrong’ about what’s going on in my body, then simply get lost!
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