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Living with Dysautonomia: How to Cope

So in my previous post I wrote about living with dysautonomia - how I started passing out up until being diagnosed with POTS and Neurocardiogenic Syncope. When all of this first started I had to wait months before seeing a cardiologist. It was such a scary experience and I wish someone could have given me some advice about how to cope with it all - physically but also mentally. That's what I'll try to do here: give a bit of clarity on how to make the whole experience a little easier to manage.

See a doctor
It sounds like the simplest of things but it's worth saying. Sometimes people put off going to the doctor on the basis of either the problem seeming too small to bother someone or being too scary, fearing they will discover something is seriously wrong with them. However you feel about it, it's worth getting checked out - to reassure yourself, your loved ones and also so you can actually get some help. Even if you are not passing out, if you are getting dizziness, palpitations, weakness etc still see a doctor.

What can help them help you is keeping a symptom diary of what you are doing when you get symptoms, a description of what they're like etc.

Doctors with limited knowledge
Don't be put off if you see a doctor who doesn't know it all. These are relatively new conditions or at least the research on them is fairly new so doctors are still learning about these conditions. Many GPs may not have even heard of dysautonomia but that does not mean there is no hope for you. They will refer you to cardiology (or neurology depending on symptoms) so you can see a specialist, have tests etc.

Keep drinking
It is so important for you to keep hydrated if you have this problem. That doesn't just mean making sure you don't get dehydrated but rather making sure you drink a LOT. This is difficult but if it keeps you upright it's worth doing. Water can get boring so I always used to carry a litre bottle of diluted squash with me which I could refill. Americans say that Gatorade helps them a lot for its sodium and I would think our equivalent would be Powerade. You can also get Nuun hydration tablets to add to water. Eating plenty of salt a day is also crucial to help you retain the fluids that you are drinking.

Depending on the severity of your symptoms and the type of condition you have it may be worth avoiding a few things that can cause you more problems. Alcohol is one of them - it dehydrates you and lowers blood pressure so can trigger an episode. Obviously see what works for you but sticking to one or two drinks may be for the best, or if your symptoms are severe and frequent then consider cutting it out altogether. Caffeine can also cause problems. For some people a strong cup of coffee will help increase a low blood pressure but for me it just brings tachycardia.

The basic things that you do to look after your health become increasingly important if you have dysautonomia so avoid staying up too late and surviving on a few hours sleep because you may be more likely to have symptoms because of this. You really do need to take extra care to look after yourself basically.

Keep moving
One other thing to avoid is standing for long periods of time. If there is no way round this, such as if you have to wait in a queue, then try to keep moving even if it's only on the spot. Moving from one foot to the other, rocking on the balls of your feet and tightening your calves are all ways to keep the blood flow circulating so it can stays where it needs to be - your head and your heart. Some people also find support stockings can help alleviate symptoms.

What everyone else thinks
You will soon learn that everyone has an opinion on your having this condition. Some people will not understand the fatigue and pain that can go alongside POTS - they may think you're lazy. Others may think you are doing too much and constantly tell you to sit down. Only you know how you really feel but try to be patient with people as it is a hard condition to get your head around and they are saying these things because they care (okay maybe not the lazy comment but the ones telling you to slow down etc).

One of the things I found hardest about suffering with this condition was constantly being watched. It would often be after standing up that I would faint so anytime I stood up all eyes would be on me with people wondering if I was going to collapse. People would also ask me if I was ok a lot too which I found frustrating as if I wasn't feeling well I would tell someone. However sometimes others will notice before you do - for example I might get much paler before becoming symptomatic and so people would be concerned before I was.

An indicator of losing oxygen to the brain is irritability and I would feel bad snapping at my Mum when she would ask if I was ok but often it's because I wasn't. It's good to talk through this so others are aware how your condition can affect you but also so you are aware how you may come across when you don't mean to.

Talk to people
This is a hard thing to go through and live with, especially in the beginning stages before you really understand what's going on, which is why it's so important to talk to people. It's ok to be frustrated and feel it's not fair: you are perfectly justified in voicing this. Sometimes you want to be so brave and pretend it doesn't get to you but no one will think any less of you for this not being true - you are only human.

Also if you have any concerns it's better to talk them through and find out answers rather than letting the worry build up inside you. I remember as the frequency and severity of my attacks were building up talking to a friend and suddenly getting upset asking what all this was leading to. She reassured me that it was probably this way because the more tired I was the more likely I was to have an episode rather than my body failing more and more because of some serious fault.

The doctors also reassured me that fainting is not dangerous for me (my heart never stopped during an attack) and the only danger was of injuring myself in the fall. It's hard to believe this when you're going through it though and I guess in a way I was scared of dying - either through an attack as they were getting so much worse or in my sleep as it felt my body really was failing and shutting down. Talking through these fears alleviated anxiety as I could see this wasn't rational and allowed me to stay calmer about the whole situation.

Something I didn't think to do until only a few months ago was search my conditions on Facebook and when I did I was amazed to find several support groups - Living with Vasovagal SyncopeNeurocardiogenic Syncope SucksPOTS, etc. It helps to talk to others with this condition and in my instance the only way I could do this was online. I learned that some of the bizarre things I would experience as part of my condition were in fact very normal. It also gives you the chance to vent without worrying people or seeming like a broken record but also to share the positives and stay hopeful.

Know your limits
If you have dysautonomia then chances are you won't be able to carry on the same as you did before. You will find you will have to take breaks throughout the day so you don't over exert yourself. I take the lift rather than the stairs - this used to be in case of an attack but now it's just because it wears me out too much. I can't do the dance game on the wii which is my favourite way to exercise but instead would go on the exercise bike on a gentle setting. I'm honest with my manager at work about not being able to do heavy lifting or needing to come in late the morning after staying late to do a press night. I had to do online shops rather than going to the supermarket. I used to get taxis rather than public transport. The list goes on. As you go on you'll learn how you have to make changes and will grow used to this rather than it being a source of frustration.

It is really hard when you have so much to do that you feel you can't take a break but you have to look after yourself and make some difficult decisions in the process. In my final year at university I was supposed to have a main acting role in our show but had to pull out because I felt I wouldn't be doing it to the best of my abilities and also it was too risky in case I fainted onstage. So I took on directing instead and absolutely loved it - you take the positives wherever you can find them.

If you feel an attack coming on
The best thing you can do is get down on the floor and put your legs up to get the blood back to where it should be. Moving around can help too but also tell someone how you're feeling so they can help you - by getting you a chair or just making sure you don't injure yourself if you do fall.

What I've learned is that in terms of mentality there really is no "right" way to handle your condition. That said, what helped me was just staying positive and trying to believe this would not be my life forever. I kept my sense of humour and would talk openly about my condition which helped alleviate any awkwardness in other people - they felt more able to ask questions because of my attitude towards the situation. It wasn't ever a big dark secret (it couldn't have been - I was passing out too much!) and so was able to become normalised - it was just something I had.

It also gave me a sense of determination - I was limited in what I could do but this meant I put more effort in. Even though I was so flimsy physically I was set on being a strong director. Despite passing out at least once a day and being so weak I still got a First in that module and some really positive feedback from my tutor and my peers. I guess where the illness took away my social life to a certain extent it meant I really threw myself into that. With written work I struggled more as my concentration was shot and so my grades were lower than the year previously but because I stayed committed I still managed to do the work and do okay. I didn't blame myself for getting stupid, I just knew it was the condition making it that much harder.

Living with dysautonomia has been incredibly hard, but in a weird way - I've also got a lot from it. At the risk of sounding sentimental - I now so happy my health and  job whereas I may have taken those things for granted otherwise. I also wrote so much more on this blog because there were other things I couldn't do so I really reveled in having this creative outlet.

You keep hold of the things that you can do that make you happy because they are what will get you through - alongside your friends and family who make you realise just how loved and supported you are. I hope that's the case for you anyway, it has been for me and I really don't know what I would have done without them putting up with looking after (and worrying about) me everyday and endless hospital visits.

Any questions about this condition please comment and let me know and I will try my best to answer them!