I see you. 

I see you. 

I see you. I see you as your ‘glance’ lingers over me just that little bit too long. I see you look and I see you judge. Not that you’d know. As I walk my eyes flit between the pavement and anything close by I can take hold of. As I sit I stare down at my lap. Avoiding eye contact. Avoiding conversation. The once bubbly character hidden deep down inside. Below pain. Below exhaustion. Below stammers and stutters and a noticeable tremor. 


I know what you think. As I sit here, wilting, in the doctors surgery. The weight of my thick coat weighing down at my shoulders. A woolly cap of my daughters hastily thrown on to hide the greasy mess that is my hair. Sticking up in all directions after a night of hot sweats and tossing and turning. My face crusty and falling apart. My lips splitting and bleeding. I see the assumptions in your eyes. At best I’m seen as lazy, unclean. At worst an alcoholic. Maybe a drug user. 


It doesn’t matter that I’m in a doctors waiting room. My pallid skin, the bags under my eyes, it tells them all they need to know. You may think I’m being over sensitive. Assuming the worst of people. But years of illness teaches you the difference between inquisitive, friendly and downright accusatory. When you have health problems that mean you can, and do, have to ask help if strangers; it’s a skill one has to master. 

I’ve had people yell abuse as I desperately stumbled towards home with my daughters hand in mine. Screaming that it’s ‘disgusting to be drunk at this hour’ with a child no less! Outside her school, parents who had previously chatted to me in the pick up line stepped over me without a second glance the day my symptoms got the better of me and I ended up gracing the pavement. Once again my daughters hand in mine. At four years old she eloquently stood up for me when I stood grasping like a landed fish as a rotund gentleman called me out on using a disabled bay. ‘My Mummy has a poorly heart, she’s allowed to park here!’ He looked suitably ashamed. 

I admit it. My family is my shield. Looking into the loving eyes of my children and the steady gaze of my husband saves me from looking at the prying eyes of strangers. But today, alone in the doctors waiting room, my shield isn’t here. My rescue comes only when the doctor calls my name. I wince as I try to get up too fast and escape what feels like a barrage of ever lengthening glances. 

Fast forward through the usual soul destroying back and forth with my doctor and I’m outside, desperately trying to get to my car. The doctors has no carpark so I’m forced to cling to a wall as I move in my half shuffle half stumble towards my goal. Somewhere behind me I register a friendly voice. “Are you ok?” he asks. His eyes are different. Unclouded by suspicion, he’s just friendly and concerned. I tell him I’m fine, whilst clinging to the wall as though my life depends on it. He thought I’d had a funny turn. “Oh, so this is just your normal?” Yes, unfortunately it is. With that the kind gentleman leaves me to my quest; walking off slower than he needed to, perhaps in case I changed my mind. My faith in humanity somewhat restored, I continue on  my epic quest. 

The truly unfortunate thing about this story though, it’s not my health. It’s not my struggles. It’s the fact that the friendly encounter I had today is not my normal. It’s not even close. My normal is the opposite. It saddens me how surprised I was when I was offered a helping hand. If I could have one wish it would be that people offered me that first, rather than their judgement. 

A message to the resident. 

Recently I had to call up the hospital and speak to my doctor about a change in my condition. (One of my conditions, I have many. This one being POTS that causes my heart to race on standing. Only recently it’s racing all the time. Even when I’m laid down. No fun.) Only my, lovely understanding, doctor wasn’t there. He was on holiday. I got to speak to a resident. 

Let’s just say the call got off to a bad start when he immediately began by talking down to me. Clearly to him I was just some uneducated fool who was terrified over nothing. This immediately got my back up as 1) I’ve been told by many doctors they are impressed by my knowledge of my conditions and how I keep track of my treatment etc. it has even been admitted that, as my ailments are rare, I’m more well versed in them than a lot of medically trained staff. 2) I was not, and am not terrified. I’m aware I have this condition and that it’s not life threatening. But when it is leaving me pretty much bed bound I would like to try to improve the situation, thank you very much! 

Things further went down hill when I mentioned the readings I’d been getting from my heart monitor. Let’s just say I didn’t appreciate him  stating “We don’t advocate people having their own heart monitors, it just frightens them.” I think it was at that point I gave him an education, it went a little something like this: 

Look, I am not some hypochondriac freaking out over my symptoms. I was diagnosed with POTS around four years ago and had been suffering with it much longer. I know it causes tachycardia. I also know it is not going to kill me. Fear is not why I have a heart rate monitor. I have one so that I know what my ‘normal’ baselines are. I have one so that when I’m out and about and I feel symptomatic I can check my pulse. I can ascertain if I can make it to the car, if I need to sit down or if I need to lie down right there on the floor. Because I’ve tried making that call on how I’m feeling alone. I inevitably push myself too far and end up getting better acquainted with the cold hard ground, at speed. Let me tell you, using the monitor is preferable. Especially as I’m heavily pregnant! Finally it allows me to track my condition, and if there’s significant longstanding change I can contact my doctor to discuss my options. 

It was at that point his attitude towards me shifted. After I pointed out I was only calling to check I was doing everything I possibly could to help myself, and that I didn’t want to get deconditioned his attitude completely changed. He began saying things to placate me “Well clearly you know what you’re doing” etc etc. 

So my message to the resident, or any other doctor, is this: 

Don’t automatically assume that you are by far the most intelligent person in the room, and definitely don’t assume you know more about the patients condition than them. To you we are just another patient, with another condition you have read about in a text book. But this condition is a huge part of our lives. It affects us every day. How can you possibly know better what it’s like to live with? How can your textbooks equal years of experience? Yes, some specialists are an amazing fountain of knowledge, for whom we are very grateful. But most of you? Well, most of you have the bare bones of information. Listen to your patients. Learn from your patients. But mostly, don’t assume we are hypochondriacs for having tools in our arsenal to help us live. 

Emergency Measures. 

So, yesterday was a family wedding, and a full day out for me. Which was terrifying, absolutely terrifying. I’ve been bed bound a lot recently. It seems pregnancy and my conditions are not mixing well, so the thought of a day, and night, upright and moving had me panicked. 

In the run up to the event I was stressed, jittery, and having sleepless nights. I tried to rest up more, in preparation, but the nerves just made me more tired than ever. Things were already not going to plan. 

On the day I stayed in bed as late as was possible, then set about getting ready. I did my daughters hair (hurting my hands). I did my hair (putting my body in a stress position I’m supposed to avoid). I wore makeup (which makes my skin and eyes sore and my nose stuffy). I wore nice clothes, and even heals (ouch, just ouch). 

We had a plan in place. A small amount of coca cola to get me going in the morning. Bottles of water in the car. Pain killers in my purse. It would be ok. Except I was so flustered by the time we left, I forgot everything except the coke (which I’d already had). 

I made it through the morning ok. There was lots of standing, but by shifting my weight and fidgeting, I managed to be ok. I could have sat out of the way. But there was a lot of people I didn’t really know and didn’t want to seem rude. 

After the wedding, came photographs and the meal. It was this point that I came undone. There was a wait in between. Though I remained mainly seated, my body just couldn’t seem to take it. I forgot how much effort just conversing with people takes. As I felt myself deteriorating, I hoped the meal would perk me up. 

But alas, though it was delicious, it didn’t make me feel any better. I mentioned to my husband I should lie down in the car, but he didn’t want me crossing the busy road, and besides, we would be going soon. I took deep breaths. My heart rate crept up. Soon after, it happened. Tears stung my eyes and the world began to shift. If I stayed there, I was going down. 

So I took emergency measures. I hightailed it out of there, and to the furthest (least frequented) toilets. Luckily the movement kept my blood pumping just enough to take me there. Locked in a cubicle, I laid on the toilet floor. The cold tiles against my back, my feet on the hastily dropped seat, my hair no doubt poking under the door. And breathe… 

   

 

It took seconds for my heart rate to drop. I’m lucky in that way. But, my god, it feels horrible when your body is righting itself and your heart rate is plummeting. Often I think that preventing collapse feels worse than actually having one. Because you never quite get the release. You’re just left feeling like you’ve been run over by a freight train. 

As I laid there, on the floor, I thought to myself This, this is my life. Hiding out in toilets just to get through what for everyone else is a relaxing fun day. But you know what? It’s ok. Because guess what I did next? I got up. Brushed myself off, and carried on with the day. 

I even managed a dance with my little girl, for which I’d lie on the floor any day of the week. 

You feelin’ me?!

One of my conditions is POTS. It stands for Postural Orthostatic Tachycardia Syndrome. Even though there’s thousands of us POTSies out there, it’s still a relatively unknown condition that’s difficult to diagnose.

If you have a friend or relative with POTS you may choose to do some online research on their condition so you can better support them. (Big round of applause for caring if you do!) This is a lovely gesture, but please, only do this in order to learn. Remember we are all different, we often have intermingling conditions, and we have already tried EVERYTHING imaginable to get better. We don’t need Dr Google giving us unsolicited advice. Compassion, understanding and company is always welcomed though.

It’s the idea of understanding that’s prompted this post. Often I see POTS described as ‘an increase in heart rate of 30bpm on standing’, which is true. But it is oh so much more. Better articles will explain that living with POTS is akin to living with heart failure in the effect it has on your body. This is a little better at describing life for me. But unless you’ve lived with heart failure (which I hope you haven’t) you’re still not going to know how that feels.

So I thought I’d try to describe how POTS feels to me. Please bare in mind I have LOTS of random stuff wrong with me, so I apologise if not all the stuff I talk about strictly fits with POTS. It’s hard figuring out which ailment goes with which condition these days.

So first, the heart rate. Yes it increases when I stand, often reaching 154 and above. This isn’t bad for many people with my condition, who can go much higher. Luckily I’m not affected when seated, so I can still drive. When your heart is racing it feels like fluttering in your chest. But not sweet little butterflies, noooooo. When my heart races it’s like I’ve got a giant ass albatross in there! Soon, as my heart is going so fast, I start to get dizzy and lightheaded. My head and feet don’t seem to be part of the same body, and I’m almost detached from myself. This makes me clumsy and I often look drunk when walking, or I stumble and trip. One of my talents is tripping over nothing, the other is walking into things. Door frames, furniture, people, anything is fair game.

After being upright for a very short time (often immediately on standing) my body feels like it has lead weights attached, trying to drag me to the ground. Everything is heavy and I’m walking through waist high mud. My energy is sapped as it takes so much (three times to be precise) more to do anything. It’s at this point I’m usually clinging on to someone or something for dear life. If I’m not seated (or preferably laid down) in time, then my body will give out on me.

I’ve been told all the colour drains from my face and I crumple to the ground like a puppet that’s had its strings cut. What I know is all of a sudden the world shifts. Dark engulfs my vision and I can no longer keep tension in any part of my body. I used to think I remained alert, but having not realised a woman was screaming when my head connected with the floor in a local supermarket, I now appreciate that’s not the case. As the world swims back into focus its at that point the pain hits. Let me tell you something, floors are hard!! Pavement diving is not a sport Id partake I given a choice! I lie there, usually crying (I’m not sure why as I’m not upset) and shivering uncontrollably. I can’t sit up too fast or I’ll go again. But when I do, I feel as though I’ve been run over by a freight train for the rest of the day. I usually also end up with whiplash and sprains due to my other joint condition.

However, this isn’t the whole story. My condition causes my body to constantly be in ‘fight or flight’ mode. My autonomic nervous system (the one that controls everything you automatically do such as digesting, regulating temperature, circulating blood) is constantly on high alert. I am the human version of bambi in the woods. Because my body is constantly thinking danger is on the way it does some really stupid things. It sends blood away from my none vital organs, like my digestive system (because according to nature food is not vital, stupid nature) leaving them slow and sluggish. Or sometimes way way way too fast. Which is always fun. My thermostat is always off, so I’m either too hot, or freezing. Or, if I’m really lucky, both at once. My blood pools in my hands and feet, making pain I already get there, worse. Plus it turns them a rather fetching shade of purple. Then, as well as completely exhausting me, my lovely body won’t let me sleep. After all, could you sleep if your body was in constant high alert, waiting for a wooly mammoth to attack? (Fight or flight mode is a throw back from when we were cavemen.) I’ll give you a hint, the answer is no. No you couldn’t. You’d just toss and turn in bed, sweating one minute, freezing the next, and every now and again twitching for good measure. Just because.

So that’s the bulk of it. I know there’s so much I’ve missed out, but my eyes are struggling to focus (that’s a lovely symptom right there) and my hands are hurting. I hope that my description has helped you imagine what it’s like for us a little better. Maybe next time your friend with POTS is being cranky (me every day) or boring (again me) you’ll find it a bit easier to be understanding.

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