-Footnote-
I began to write this post a few nights ago, but it's taken me longer than thought! It started only as a means to vent, as on that particular day, after meeting friends I became completely frustrated with how bad one of my symptoms was; forgetfulness, but I feel that it's probably right to do a proper post explaining P.O.T.S. Although it'll probably be the only time as I'm sure as much as I feel it's important to raise awareness, I want to get back to the 'fun' bit, music! :). However, if you have any queries about the condition I've discussed, I'd definitely recommend doing further research as that'd be able to explain anything in greater detail better than I would, I think!
In this post I will go onto explain a little of how my chronic, but managed condition affects me and explain a little more on the impact it has on a person's life who has the condition, as tonight like many nights I see particular symptoms emerging that are just distressing and frustrating at times.I hesitate to use the word 'sufferer' when I talk about a person with a condition, because even though you do most definitely suffer, I see a 'sufferer' of any condition to be stronger than to be branded by such a pessimistic term!
I've had Postural Orthastatic Tachycardia syndrome ( or P.O.T.S as its abbreviated) since the age of 14, yet I wasn't diagnosed until I was 16, after being branded by a sort of umbrella condition known as M.E. This in itself is a proper and painful condition but it is usually the name given when you have extreme fatigue, often with other symptoms which include: nausea, light sensitivity, forgetfulness or 'brain fog', aching limbs.. The awful symptoms are endless. However what I aim to point out is the title of M.E is usually given when Doctor's cannot find the source of fatigue and so brand you with a sweeping term so to speak. Many patients of M.E have varying conditions brought about by any part of the body which doesn't seem to be working 'properly' (in the most unprofessional statement going) , though many patients have either stomach conditions, bad reactions to certain vaccinations (which causes the immune system to in a sense temporarily fail, bad reactions to bites or tics... Or in my case a condition affecting the autonomic system in my body. This is the system that covers all the basic needs in a sense, such as temperature and pulse regulation. Basically, when a person stands, their heart beat is regulated, despite the change in bloodflow, to make sure the blood reaches their extremities and then back up to the brain. However in a person with P.O.T.S this regulation simply doesn't happen, usually due to stretchy veins in the legs. This means the legs can't contract as normal to push the blood up to the heart. This then means the heart beats faster to overcompensate. Over time this of course causes massive physical stress on the body and it becomes extremely fatigued. It feels like you're running everywhere just on standing and it means you feel exhausted past the point of sleep in the most awful way. It means you can sleep for twelve hours and wake up feeling just as bad as you did before, this sleep not even denting the type of exhaustion we're talking about.
In normal cases, the heart and blood are perfectly healthy in themselves, it's just the connection in the autonomics that isn't right.
As P.O.T.S is a fairly new condition, with only a small amount of research being performed by specialist teams in the UK, the exact cause of the condition is unknown, but it is thought that various triggers can spark the condition in different people and factors that affect one person may not affect another. For some it's hormones (interestingly on average females tend to get P.O.T.S more than males), but in others vaccinations and virus triggers seem to be the cause for knocking the autonomics out of shape. I could explain the condition for hours I feel it might be clearer to look on the main website for P.O.T.S and it's treatment here:
http://www.potsuk.org
My story to being diagnosed is a long one, so I feel it'd be impossible to explain everything, but the debilitating fatigue I felt caused me to suddenly drop out of school, as I was bed bound, unable to have the energy to maintain simple conversation, extremely sensitive to light ( I remember vividly having to lie in complete darkness), feeling so incredibly sick and achey I can't even begin to describe and feeling so helpless with it all. I loved school, I love to learn, I was happy had lots of friends and suddenly I was stuck at home, unable to even walk for five minutes in the fresh air or speak to a friend. It was incredibly, awfully, crazy and even though my condition is now managed, through medication that slows my heart rate, compression tights to help my blood flow and plenty of fluids to raise my blood volume and pressure, I still can't believe it all happened to me. I can remember feeling at the time a sort of surrealness about the whole thing, like its a bad dream I should wake up from, that naively, bad things like this don't happen to normal fun loving 14 year olds like me, but to other unfortunate people that you always seem to hear about through mutual acquaintance. But sadly it does happen, to hundreds of teens and adolescence, as well as adults. I saw countless Doctor's who didn't know what was wrong with me, some open minded enough to see the pain and my chalky
greyish colouring I get when I'm ill, and some that recommended that I should just 'take a holiday' and then I would feel better. This was when I only had enough energy to just about manage the appointment before sleeping for the rest of the day. When you're ill like that, the day's merge and at times you wonder if you'll ever feel like you used to, feel better. But I told myself if I became ill I could, by laws of physics become better to and I'd make sure that I would. Of course I couldn't of seen the right people, who explained the reasons I was feeling so ill and offered treatment, if it wasn't for my parents who put everything they could into making me better. Taking time of to care for me, whilst my Dad worked, my mum joined online groups made by other Mum's with ill children in the same situation. It was through this amazing support that she first heard about P.O.T.S and made appointments with the right Doctor's, that may have been in the far corners of the country with their pioneering research, if it meant getting me better. I am forever grateful and moved by their compassion and love.
As I say skip forward an unbelievable 5 years and I'm living a pretty normal life, within my energy restraints. I am now overjoyed to have finished my first year of a levels, despite only being able to concentrate on lessons for more than ten minutes at a time at my worst back in 2011, and I currently volunteer as well as maintaining a fairly active social life. I have to be more conservative with my energy than that of my friends and I definitely feel like the symptoms still take their toll, fatigue mainly along with poor temperature regulation and loss of short term memory at times. But I am aware of my limitations and live as fuller life as I am possibly able to. I might have times when I am better or worse, but I absolutely enjoy every day to its fullest, as I know it could always be worse. I feel incredibly lucky to have such amazing, understanding friends and family around me and I'm sure they've aided my recovery massively with their positive supportive influence.
I'd just like to say a massive thank you to anyone who has taken the time to read this. It is really the first time (after starting this blog nearly a year ago) that I've tried to put my experience with a chronic condition down properly. I've found just by writing I've come a huge way in understanding myself and as well as this hope that by writing, whoever reads this may gain a little more knowledge and understanding of a condition they might not of heard of previously. I would urge anybody who is in a condition where they feel so poorly their life is impacted to keep searching for answers as best they can, because they should be out there, chances are you are NOT alone. I stress that my journey to recovery is personal and what was the cause of my condition most certainly isn't guaranteed to be yours but I just wanted to share my experience.
One thing I will say is KEEP SMILING, you are stronger than you think :)
And... In true Molly form, I've got to maintain tradition and post a song. So without further ado this song sums it up! Not only from the greatest comic group of all time, to my mind, but also with amazingly true lyrics!
'Always Look on The Brightside of Life' - The Monty Pythons :D
Take care,
Love,
Molly xxx
