My life as a PoTs patient hasn’t been easy to say the least, for nearly 6 years now I have been up, down round and round again with hospital stays, hospital appointments, doctors visits, and god knows how many needles every month for countless pointless tests that always came back negative .
I’ve wrote bits on my journey on my blog before, and gone further into my depression and other related illnesses but I got to the point where I wanted to write my full story on my illness after having lots of people contact me, and reading other people’s posts on their PoTs story and it’s really inspired me.
So let’s start from the beginning…
I was 13 just pushing 14 in the June of 2010 when I started to suddenly have the worst periods every month, and it wasn’t a normal cycle, it was horrific pain. I had other symptoms with this but shook them off. I presumed I felt so drained and exhausted because my cycle was all over the place, and tried pill after pill until one started to work.
A few months later after a lot of doctors appointments it became apparent that not only were my periods completely messed up, but I had also caught a nasty case of the glandular fever virus that explained my weird other symptoms, but I expected the fatigue to be worse as I seemed to have bounced back slightly from the ‘drained all the time‘ feeling and carried on as normal for at least 80% of the time.
The only thing was by Spring of 2011 I continued to spiral downwards but silently accepted that it was just a bad backlash of the virus, and did no more, my doctor whom I had from being a baby would always agree with my mother’s suggestion of this, and he would always agree without doing any research of his own, I mean, I can’t blame him, a usually fit and healthy teenage girl with some odd symptoms, must just be hormones, right? No, so so wrong. But every single doctor I visited had the same answer.
The first memory I have of feeling ‘weird’ was in April 2011 during a school assembly, my hands started to tingle and my stomach was turning and knotting. When I stood up I went really light headed and my blood started to pool in my hands and my feet, which is obvious now to be a classic PoTs symptom, but for a 15 year old girl who hadn’t even heard of the illness, I was none the wiser, and just kept telling my parents something weird was going on.
I was dating my first love at the time (who was always really caring when I wasn’t well and I still thank him for that to this day), and it was obvious he had caught the virus off me (sorry – again) but he wasn’t half as bad as I was, it was obvious he was very fatigued at times, but a good nights rest and he bounced back the next day. He never went for tests but even my mum agreed he had it, but he continued to look after me as I was feeling bad at least 75% of the time by my last year of High School, but I never understood how one person with the virus could be fine but have a few bad days or get worse after a cold, yet the other one was completely debilitated.
I started with the irritability around that time and was pushing everyone away and was acting very erratic and couldn’t control it. I was having trouble climbing the stairs at school, and would get out of breath anytime I had a class on the 2nd or 3rd floor. My IBS was very bad nearly everyday, and as you can imagine, in High School it’s not something you want to suffer badly with, you’d think toilet humor grows out of people by 16, well, it doesn’t. Nearly every night my eye’s would swell like crazy, and I was finding it increasingly difficult to partake in sports, or go out with my friends and just played it off that I was lazy because I never wanted to spill out how I was truly feeling. I would nap every night after school (which I’d never done before), I barley had time to socialize or even have a shower and I’d have to eat my tea and go straight to bed and still wake up exhausted after 8/9 hours hours sleep.
By the end of High School my symptoms didn’t flare up as much, but were still prominent, and would come on after certain things, like if I over drank alcohol at a house party, it would take a couple of days to fully recover, or if I went on an outing with friends, I would be exhausted for up-to a week later. My joints seem to be worse in the winter, and my rashes and skin blisters seem to be worse in the summer. So basically my illness is a full time 365 days a year occupation.
The last summer with everyone in school was great, I had an amazing love in my life who was always there for me, I had amazing friends and was experiencing new and more exciting things, and was ready to go off to College and finally study Media, but little did I know I was soon to fall flat on my face and never get back up. I would plod on for nearly 2 and a half years, which now seems impossible if I had to face it again.
My first year of College was a disaster to say the least. I was a lot worse and I was diagnosed with depression (unknowing to me caused by my POTs that I had then, never heard of) and was continuously being told I needed to see a therapist, and I may be bipolar, etc, and I took all of this really hard because I knew that the pain I was getting, especially in my stomach wasn’t just IBS, or in my head (like I was tried to be told time after time, which is so hurtful), the fatigue wasn’t just normal teenage tiredness like most doctor’s told me it was, and my eyes and glands weren’t swelling up like balloons everyday because of a relapsing glandular fever.
I knew all of these problems had to be caused by an autoimmune disorder, or something similar. Something weird was going on with me and I had zero idea what it was.
In college I had every test known to man, and thank my old tutors still to this day for helping me out so much. I was coming in every other month with a new reason to be off college again, this test was needed, that test was needed, this hospital stay was needed, that operation was needed, and it got me even more depressed that I developed social anxiety because I got super irritated in crowds, and couldn’t line up in shops without getting extreme hot flushes (the type where your face is on fire, your pumping with sweat and feel like you’ll either be sick or pass out, ye, not nice) and my blood rushing to my feet and hands. I was getting palpitations all the time and that’s when I got diagnosed with anxiety, where-as now I know the palpitations were due to my heart beating abnormally fast because of my faulty autonomic nervous system.
My first year of Uni was up and down again but my fatigue was that debilitating I finished the year with 26% attendance. I was trying so hard to keep up with going out 3-4 times a week to social events, karaoke nights, drinking, uni work, finding a job, balancing going home to see my friends and family and making new friends in a new city I’d just moved too. Everyone with my condition knows how hard some days it is to even cook for yourself, never mind clean up after too, and my old flatmates would point and call me lazy, which is perfectly understandable, it happened to everyone at some point in the year, I just didn’t understand why I was feeling so ‘lazy’, because it felt like complete exhaustion and it turned into a ‘why me‘ depressed phase for a long while after Christmas 2014. Please don’t get me wrong, my first year of Uni was the best year of my life, but it did come with its struggles, and it did come with a lot of battles. I finally moved home in preparation for getting myself better for my 2nd year when my mum and dad finally recognized something was really wrong when I was told I may have Lymphoma after an examination and after my drenching night sweats started and I was losing weight rapidly. That’s where the tests started in the journey to the PoTs diagnosis.
Finally now I’m able to say on the 14th of November 2015 I was diagnosed with hypermobility/EDS, IBS/acid reflux, PoTs, fibromyalgia, CFS/ME and OSA. Only people with a chronic illness know how happy you can feel when you get diagnosed with something. It sounds silly, being happy that you have a chronic illness, but it’s proof for us that there is something wrong, and it’s not in our heads like people tried to tell us. I still believe I have an autoimmune disorder to join the list, and it’s strongly thought to be Sjogrens Syndrome, and I’m currently being tested for Lupus because of my weird skin rashes/lumps/blisters that I get in my hair, on my legs and on my thighs.
Most people have a hard time being a teenager. It’s hard keeping up the balance of your studies, your part time job, your social life and your love life never mind throwing a disability into the mix, especially when that disabilities undiagnosed and your expected to continue through your life as normal.
Before my diagnosis this last year I used to work 16-20 hours a week as a waitress whilst studying and keeping up with my social life as I was too afraid to be left out. People used to say to me ‘if you feel so unwell all the time, stop going out‘ and that’s a fair point for an outsider to make, but it’s really not that simple. When you haven’t a clue whats wrong with you, and neither do any doctors, you want to continue as much as you can, as normally as you can, because it is true that once you start to cancel on people, or pick chilled nights over drinking, they stop inviting you out more, especially in the British University drinking/clubbing culture. I stopped saying yes to people, and decided to spend more time with my then-boyfriend and got left out more and more, because nobody could be bothered with someone who was up and down all the time, and I tried so hard to make as much effort as possible, but it caused me to crash.
I was silly making myself do so much, and I realise now that’s why I crashed so hard this year, but like I said, when you’re constantly told by professionals they don’t know whats wrong with you, of course you’ll try and keep up with everyone else your age, because you’re constantly told you’re as fit and as able bodied as they are, even if you feel like you really aren’t, and you know you aren’t.
My brain fog made my life a misery also, and it still does now. I was called ‘dopey‘ and ‘stupid‘ a lot, when that had never happened to me in my life as I was always the ‘smart sensible‘ one in my classes in school. I was forever being told off my boss and friends to ‘listen and pay attention more‘ when it was like everyday I was walking through a thick cloud whilst also being trapped in a bubble, even if I knew what to say, it wouldn’t come out right and would leave me feeling irritated and frustrated with myself, then when people pointed out my mistakes more, the more I would push them away because it upset me that I couldn’t do anything about it and they made me feel worse for it, even if they didn’t fully realise it, but would always say ‘cant you take a joke?‘. It’s no joke for us, it really upsets us more than you could imagine. How would you like it if you felt like your mind wasn’t with you? No matter how hard you tried to reason and think, nothing worked or helped, and you were the main punch line to everyone’s jokes. It’s not nice for us.
PoTs makes you feel (on your bad days) like your trying to run under water, nearly impossible right? Imagine having that battle trying to walk up the stairs, imagine the fear when you feel that hazy and dizzy that you’re going to pass out but you body just can’t pick itself up when it does happen, or you don’t even remember how it happened. The fear that nobody understands, because no matter how much pain we’re in, we won’t be able to even begin to explain it. People look at me like ‘you’re 19, you look fine, why are you complaining all the time?’ Even friends of mine have commented on when I’ve complained about joint pain, ‘oh everyone gets it’, yes they may do, but maybe not to my extent.
It’s hard when you have a disability because one day you could feel like you can take on the world, the next day you feel like your bodies slowly giving up on you. I have honestly felt like I’ve been dying before I’ve been in so much pain, it hurt me to lye in my bed, nevermind get up and walk. I’ve been that bad that my lungs have hurt and it’s felt like a thousand knifes stabbing me. It’s a hard balance in anyone’s life to have a disability, but when you’re a young adult and you’ve been suffering on and off with it for years, then it goes undiagnosed, untreated, you end up even worse off, you end up lonely, you wonder what happened to your social life. Nobody besides you, and those closest, will understand fully how much you suffer, because once you have a good day and get out, nobody would ever be the wiser that the girl stood next to them in Starbucks was unable to walk up the stairs 3 days ago.
This is where I want to add a massive thankyou to those that have been there for me no matter whats happened. No matter how many times i’ve pushed you away, or been so frustrated I’ve cried in your arms, thankyou for being there. Thankyou.
All we want is for you to listen, and to understand. Don’t try and tell us what we’re feeling, or what to do, because you won’t ever fully understand. I appreciate the people that ask me what they can do for me, instead of presuming that a certain thing will help, then getting angry at me for not trying what they suggested, when I know for a fact it won’t help me. My mum and dad now do what they know will help,they will bring my blankets and pillow downstairs for me on the days I can’t walk up the stairs, or i’ve had a bad fainting episode and i’m aching everywhere, and they’ll cook and clean for me without kicking off that I’m being lazy, because they know I’m not. They listen to me, and try and understand without automatically saying ‘well why don’t you try x y and z instead of sleeping all the time‘ because usually those suggestions are pointless and all that will help, is sleep.
Try and not be judgmental, you will never know what it’s like to walk a mile in our shoes, and if you did, you really would get it then.
Help us out by just being there, don’t make us feel worse for what we can’t do. The thing is, when you’re really ill at such a young age, you realise that you can’t waste your time on people that don’t get it, or at least, don’t even try to get it. You need to do what’s best for you, and if they really cared, they would understand.
I’ve lost friends in life, I’ve gained friends, it’s same for anything really, but now I’m in this continuous journey of hell, I need to learn to make peace with it, and you will lose people along the way, its sad, but it’s something I wish I would have learned a while ago, because when it has happened, i’ve beat myself up way too much over it.
I use my good days to catch up on TV programmes I’ve missed whilst I’ve been sleeping so much, I like to try my best to catch up with friends over a coffee, or invite them round to watch a movie or I like to go to pub with friends, and that’s the most I can do, and even then I know i’ll be burned out the day later.
I see people my age on Facebook and Twitter jetting off to places abroad, moving out, and getting their dream job or uni degree, and it kills me inside to see them all doing that, but I’m also happy for them all and I realise that one day that will be my turn. Maybe I did get dealt a really shitty hand in life, but it’s going to make me a lot stronger as a person when I get the right treatment and I learn how to deal with the situation better.
When you’re young and chronically ill it may feel like your life is never going too start. But one day, it will.
Thankyou for reading my story on my journey so far. I’ll make sure to keep everyone updated under the Chronic Health section of my blog.
I’m a #spoonie and proud. It’s the way my life is, and I can’t change it. All the times i’ve fell down, i’ve always gotten back up, and I know my life’s going to be a big challenge, but it’s all i’ve known from being 14, so I’m fully prepared for everything that’s coming my way.
I’d love it if anyone suffering with any chronic illness couldget in touch with me. It would be lovely to talk too some other people who are also suffering and can share their story with me. I would love nothing more than to make some new friends that can understand the journey i’m on.
If you’re interested e-mail me @ firstname.lastname@example.org or get in touch via twitter (jessicafoy4). I also have a Facebook page: here
I always respond that same day, and love it when I see people getting in touch with me, it really boosts my confidence and encourages me to write more.
Stay strong. You can do this.