Laura: Living life to the full in spite of chronic illness
I can live my life with this condition and make it a good life, full of great times- the stuff of wonderful memories, so when I'm old in my rocking chair looking back at it all I can think, I lived WELL. Oh yes. That I will do, no matter WHAT.
It all started in 2001 when I was 19, at university. I started with what I thought was a cold- but it got worse and worse and lasted for 6 weeks. I remember my throat being so painful that I was sucking ice lollies in November whilst watching Will and Grace to try and cheer myself up. I missed my 'Freshers Ball' and that was only the start of missing out on all the fun university life had to offer. It turns out I had a "glandular fever" type of virus, and unfortunately I never really recovered from it. It's taken me 9 long years to find out what was wrong after that virus, which was the trigger of my PoTS, however, it wasn't until 2008 that I even heard of PoTS, let alone knew for sure I had it. I managed to keep attending class and achieved my degree, but it was the hardest thing I have ever done in my life. I had no social life because I didn't have the strength to go out. I had "panic attacks" where I'd feel sick to my stomach, get funny tingles through my body, and feel generally terrified inside.
Something was stealing the best years of my life and I didn't know what it was, or why. I'd always been happy-go-lucky and confident, but I became depressed, frightened and withdrawn. I never gave in to it though. I fought with everything that I could. Hope refused to die. After completing my degree I trained as a hypnotherapist. During this time, new things were going on- I'd begun to suffer excruciating episodes of pelvic pain that would render me incapacitated. The Doctors couldn't figure out why. Blood tests all came back fine, as did urine cultures. My GP began to look at me condescendingly and speak in a patronising tone: "You are healthy Laura." But I knew he was wrong. I'd known healthy for 19 years. I'd ran cross country, won medals and trophies in competitive events for athletics and swimming, I'd roller-bladed and played netball and basketball- and never felt tired. Now, I was feeling tired all the time, in dreadful pain, with these strange "panic attacks". My life as I knew it was fading away. I carried on regardless, getting stronger and better each year that passed.
I stopped having "panic attacks". I stopped having the pelvic pain. I was left with lack of energy and fatigue, which I assumed was just a case of 'not being as fit' anymore. In March 2009, I joined a rambling group. I made a great group of new friends and went out walking. It wasn't until November that I realised, after pushing myself through a walk that was beyond my capabilities, that there was more to my strange symptoms than just 'not being as fit'. I had what's colloquially known in the invisible illness community as a 'flare' or a 'crash'. Suddenly, the mere act of simply standing up was making my heart race, my limbs feel like lead and my head swim.
I then, finally, learnt about PoTS- and it wasn't a Doctor who discovered it, it was a friend I made online, who recognised my symptoms when I joined an online support group. Some people warned me about the dangers of 'googling symptoms' (not that I had) when I told them I was waiting for the official tests, and others were sceptical that I could really know what was wrong before it was confirmed by the Doctor, but if it wasn't for this friend and the fact that I measured my own heart rate and knew it reacted abnormally, suggesting I had PoTS, I would NEVER have known what was wrong with me, and knowing the demon you're fighting is half the battle. Because of my friend's recognition of my symptoms, and because of testing myself and seeing that my heart rate increased abnormally, I felt confident enough to go to the Doctors and tell them I believed I might have PoTS.
In January 2010, the 9th year since I first got that virus and all those strange symptoms that followed it, I was diagnosed with Inappropriate Sinus Tachycardia. This is an abnormally fast heart rate above 95 beats per minute most of the time, and is something you can have in addition to PoTS, caused by autonomic dysfunction. However, the treatment for it can be invasive and actually make PoTS worse, so I felt it was important to get tested for PoTS too. The cardiologist's knowledge and attitude about PoTS was lacking- he told me "There's no point running the tests for that because there's not a lot you can do for it anyway" (which isn't true) and that I should "put weight on and forget about it." Needless to say, I sought another Doctor out. I found Professor Julia Newton through the dysautonomia network information physician list, and requested my GP to send me to her, which thankfully she agreed to do. I had a wait of a few months between my very disappointing appointment with the cardiologist and seeing Julia but it was worth waiting for because she and her team were wonderful and after many years of being made to feel like I was wasting the Doctors time or just making things up, I felt like I have never been treated better. I was finally taken seriously. April 9, at 9am, 9 years after becoming ill... I finally found out that, as I suspected, the demon I've been fighting is indeed PoTS. Now I know this for sure, I can find the weapons to fight it and finally start grasping back the life it stole, piece by piece. I've always been a fighter. Strong, determined, optimistic. Even if I can never truly win back my 'old' life... I am going to make sure that I live my life to the full. I am going to accept this 'new' life, DESPITE dysautonomia, and make sure I live a good one.