Steady My Heart.

Yesterday, I read this article about having cancer in your 20's and although there are some marked differences, it also in part rang true to being diagnosed and living with a life altering long term condition. For me, being diagnosed with autonomic dysfunction at the age of 20 was initially a relief - I finally had an answer, but equally? It is a diagnosis that will stick with me forever and that gives me troublesome symptoms every day. At the beginning of my 20's my life was put on hold. I lost my degree, I struggled to maintain friendships and a social life and became deeply depressed about how this illness was stealing my life before I'd even truly got started. I contemplated moving back home to live with my Mum but desperately didn't want to lose my independence. However, in not losing my independence I was thrown into the tricky world of benefits and financial hardship. I had no savings to rely on, I was sick enough not to work full time, not sick enough to qual...

A year ago: The year since diagnosis has been crazy, overwhelming, liberating and full of anger, despair, happiness and hope. It's been such a mixture but I stand here a year on, stronger than a year ago and ready for yet another year of progress (with the inevitable relapses and flares...). And in all honesty, the past year has been more of the same. I have started a new job, successfully applied to University, moved house, made new friends, seen West End shows, travelled to new cities, been part of various medical teams, seen a cousin and many friends get married. There have been so many highs, yet there's still the lows, the anger, the despair and hopelessness that comes with chronic illness. In the past year, I have learned so much and have really started to manage my health, rather than letting it manage me. I am properly compliant with my medications (most of the time) and I am far more aware of my relapse triggers. I am not any better than I was this time las...

This post initially featured on Britain's Nurses for STNBC : Just another pondering from my recent experience at the other end of the stethoscope. A couple of times a day there are the drug rounds: morning, lunch, dinner, bedtime or thereabouts. The nurses go from patient to patient dishing out the drugs that have been prescribed for that time. A system I'm sure works well, most of the time, or at least some of the time. However, what about the patients with multiple long term conditions, those with polypharmacy and a set routine at home? I am great at managing my medication (when I'm not being stubborn), I have a multi-coloured dosette box that I fill at the beginning of the week. It's great. I can identify each of my medications just by looking at it, tell you what I take it for, the dosage, and when it should be taken. So shouldn't we be giving expert patients more autonomy over their "usual" medications even when they're an inpatient...

Recently, I was unfortunately poorly enough to see life from the other end of the hospital bed. I was poorly with sepsis but due to my pre-existing condition (POTS) I was automatically a "falls risk". POTS means I am more prone to fainting than your average 22 year old, even more so when I'm poorly. However, being categorised as a falls risk would possibly have been hugely detrimental to my recovery had I not been very well educated abut autonomic dysfunction and how quickly I would become deconditioned. During my 8 days on the ward, I had plenty of time to mull over attitudes to inpatient falls. Where I work falls are seen as a very bad thing . Our morning meeting involves a reminder of how many days since our last fall and how many we've had that month. As HCA's we've had various training sessions on falls prevention and are given frequent reminders to declutter bed spaces and make sure we're doing all we can to prevent falls. We often have bays where ...

"The biggest problem I have is learning to listen to what my body's telling me and making the appropriate decision and acting upon it." - Oli Lewington Recently, I lost the balance quite spectacularly. I've been feeling relatively healthy - all things are relative when it comes to chronic illness. So I let things slip - I became a little less vigilant with medications, a little less strict with rest days, I did a little more living and a lot less illness management. For weeks now, I've known I'm in trouble. I've been totally exhausted but scared to stop in case it all fell apart. Turns out...eventually you'll be forced to stop. And when the decision was made to be signed off sick, I have never felt so relieved and gutted in equal parts. I hate being sick. I like being busy. I hate resting, I hate taking medication, I hate so much about having a chronic illness. However, a few days of true rest and I'm getting there. Coming back to the und...

After my somewhat melancholy post the other day, I have slept, eaten, drunk and medicated to my hearts content and am feeling slightly more coherent! If you've been reading for any length of time, you'll know I have PoTS/autonomic dysfunction and that I'm pretty open about it. I could pretend I don't have a chronic illness (given for the most part it's invisible)...but what would that really achieve? So here's a few things I've learned about living with invisible illness: It's easier to say you have a heart condition than to explain PoTS. PoTS is a condition that affects my autonomic nervous system - thus affecting everything that my body should automatically regulate (blood pressure, heart rate, digestion etc.), however, trying to explain that to someone without medical knowledge is inevitably boring for them, and time consuming for me. How do you explain a condition that many doctors don't even understand?  Dry shampoo and good deodorant becomes ...

...until you're passed out on the floor. I'm having an argument with my autonomic system once more. I am angry and I am sad and IT'S NOT FAIR. It's not often that I let my illness get me down, but at the moment it is. I can't sleep, I can't eat, I can't do half the things I want to do. I have collapsed multiple times this week which is so unusual for me these days. Living with POTS/autonomic dysfunction is so incredibly difficult. It's hard to explain it to someone who has never lived through this. Just because I don't look sick, doesn't mean I'm not. For one - make up can do wonders! I have been feeling awful for over a week now, gradually getting worse. My energy to fight ran out about a week ago. Currently I am functioning on pride and a large amount of stubborn. Thankfully, I've survived to annual leave. Today I didn't have to get out of bed - not that I could have done if I'd tried. Tomorrow will probably be the same....

I have a chronic illness, I will more than likely always have said illness in some shape or form. At times I am totally debilitated by it, but for the most part...I manage, I have a full time job and things are okay. I am one of the "lucky" ones. I can stand, I can walk...heck, I can even exercise if I'm careful. I can work full-time, cook for myself, drive. But sometimes being "well" isn't all it's cracked up to be. Because in reality... I am still ill. I am still dizzy. I am still fatigued. I am still breathless. I am still nauseous. I am still in pain. Too well to be sick, too sick to be truly well. Financially and physically, I am better off if I don't work. Emotionally...I love healthcare, I love my job, my future prospects. And I genuinely mean that, I enjoy at least some parts of every shift. I always leave feeling fulfilled. I will continue to work for as long as my body will allow. I hope I am working for many many years to come....

"On your knees you look up Decide you've had enough You get mad, you get strong Wipe your hands, shake it off Then you stand, yeah, then you stand Every time you get up And get back in the race One more small piece of you Starts to fall into place, yeah Cause when push comes to shove You taste what you're made of You might bend til you break Cause it's all you can take" A year ago today, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) and it was a huge relief. Yep, you read the right...being diagnosed with a chronic, life-changing illness and I felt relieved . For a long time prior to my diagnosis I had suffered with collapses of unknown cause, and more recently in the year leading up to my diagnosis it was suggested that I was suffering from psychogenic seizures. Now, psuedo- or psychogenic seizures are a real phenomenon, they're not just someone "faking". However, I knew that this was not the answer to wha...

I've realised recently just how unknown POTS is. Unless you know someone with it, you probably have no idea what it is and even when you know...you don't really know. As such...I thought I'd do a couple of posts about what is is, where you can find out more info, how it affects me day to day and the like. So first off...symptoms and diagnosis.  It was around 2006/2007 when I first started having episodes of fainting - my GP and the paediatrician we saw put it down to my height and therefore my blood pressure dropping when I was stood. Quite a logical solution and I was told it'd improve with time - which it did. However, I still seemed incredibly prone to fainting and once at University they realised my postural drop and resolved yet I was still having these faints. In September 2011, I was generally unwell and had multiple collapses over the course of a few days. During which I hit my head. After CT and MRI scans I was transferred to the local neurology specialist...

Once again, there's another bump in the road, another twist in the tale. This might be a lengthy post and it'll be a mixture of an update plus a reflection on hope and a smidge of gushing about how blessed I still am. For those that don't know me in real life...I am ill once again. Not just a little bit ill, full blown couldn't stand up for a few days ill and as a consequence, my plans of being a teacher are over. Since the 2nd March my heart rate has been all over the place, I haven't been able to eat and for a few days I wasn't able to drink. I became very dehydrated and ended up in hospital. Whilst an inpatient I met one great doctor and one rubbish doctor. It's made me realise the the management of my POTS could be so much more effective if I was under a doctor who understood that it was part of a bigger illness that is affecting many parts of my body aside from my heart. So...the good doctor agrees that I have general autonomic dysfunction (d...

So...I have made lots of online friends who also have dysautonomia and POTS. A lot of them feel pretty hopeless and it's sad to see that some are losing hope that they can achieve and get their life back. Some have even suggested I'm taking on too much by attempting such an intense Uni. degree and that I might as well give up now. However, I refuse to lose hope and I hope that my experiences of placement whilst relatively stable might help bring some hope back to them. Bright and early this morning! Today was my first day. I made a few mistakes POTS wise but it's okay, I'll learn and get it better tomorrow. So, in one short day the things I have learned about POTS and placement: Fluids. I completely forgot to drink when I usually drink upwards of 3 litres a day. By 5pm, I'd probably had no more than 600mls.  Consequently, I have the most horrific headache (to the point where I've thrown up) and my blood pressure is a rather measly 90/61. Tomorrow will i...

So it's been a while...my bad. But today is New Years Eve so it seems fitting to choose a song that has been a bit of anthem for me this year. And the winner is: Kingdom Come - Beth Croft It's a song from Soul Survivor this year and sums up my year perfectly. 2012 probably wins the award for the worst year of my life. Don't get me wrong, there have most definitely been highlights but there have been so many totally crap things happen that I'm not sad to see it go and welcome in 2013! The lyrics to this song are just perfect, this year has been so tough and at times it has felt so hopeless, but I'm still here, I still have most of my health, I still have all of my faith. In fact, if anything my faith is stronger. Even when the waters rise/ And the waves are crashing over/ We're hard pressed on every side/ But won't give up the fight/ Surely you are holding on Father let Your Kingdom come/ Your will be done on earth/ Saviour can You hear us call/ ...

If any of you have seen me in the past week, to the point where we've had a meaningful conversation, you will realise that I am currently extremely stressed and anxious. I see occupational health this week and they get to give the big yes or no about me going back to Uni. Now, I *know* that I am ready to go back, I know it's not going to be easy but I will sure as hell give it my best shot. I can do this. I am willing to sacrifice paid work, I'm willing to drop all other commitments to ensure I get adequate rest, I'm willing to do whatever it takes to give my body what it needs to get through an intense placement. I'm under no illusion that going on placement will be easy. It's tough even when you're 100% well. But I know I can do it, I know I can be a good teacher. If my appt. this week goes to plan I will have the go ahead to go back to Uni. The only special request I have, which might make things easier, is that my placement is relatively close by as ti...

I hated church today.  That's probably a bad thing to say but it's the truth. I didn't want to go, I knew the preach topic and it's one I find difficult. Everything in me wanted to stay at home in bed, I was bargaining with God right from when I left work. "If the bus home is still there, I'll go", it was running 2 minutes late so I caught it easily. "If there's a sensible bus to church, I'll go", there was one that'd get me there with time to spare. I misplaced my keys and my water bottle emptied in my bag..."if I still manage to make that bus then I'll go", I made the bus. Don't bargain with God, He'll win. I didn't want to hear another preach on healing and incidentally I had a shooting pain under my left clavicle every time I inhaled today but the fact I didn't want to hear it made me go and listen. It's often the things that we need to hear most that we really don't want to. Plus, after posti...

Back when I first started writing I wrote a post entitled Tachycardia briefly explaining what had been going on with my health and that we were stuck in a bit of a no-mans-land. Yesterday, nearly a year after my first admission I have a diagnosis! For those of you with a medical background; postural orthostatic tachycardia syndrome (POTS) with episodes of hypoglycemia. There's some general dysautomonia and they're still pursuing neuro follow up although we're hopeful that I can be discharged and just remain under cardiology. My tilt table showed an increase of 60bpm post-GTN,  intolerance of exercise (40bpm increase on standing and hit 150bpm within first minute). 7 day monitor showed persistent tacycardia (hit 190bpm at rest on more than one occasion). For those of you to whom that makes no sense...it's a name that explains the majority of my symptoms. It accounts for symptoms that I didn't even realise were related to the heart stuff so it's taking a wh...