Managing My Illness

This is a post that I’ve been meaning to write for a while. It’s a very honest and personal post though, so it’s taken me a while to write. As lots of you know, I got into healthy living after I was diagnosed with something called Postural Tachycardia Syndrome back in 2011. Two years after changing the way I ate and lived, I was able to get in control of my symptoms and resume normal life, which was amazing and everyday I’m so grateful for it. That being said, I still mange the illness everyday, which can be tricky. I know that lots of you also eat and live this way, as you too are living with illness or continuous health related issues, so I wanted to share a bit more about my journey, because it’s so important to talk about it and not feel alone in our challenges. I’ve met so many of you recently who feel alone in it, but I promise you’re absolutely not!

The first question everyone asks is what I did to get control of the illness, so let’s talk about that first. Everyone with POTS is different so what works for one person isn’t always the same for the next person, but there are some things that really helped me. Changing the way that I eat to focus on plant based, natural foods with lots of veg, beans, nuts, seeds etc made the world of difference. At the same time I cut out additives, processed food, refined ingredients and white sugar and pretty much stopped drinking, except for a few one offs. I was put on an exercise program by one of my professors which really helped, and we worked up from cycling on a reclining bike for 2 minutes to going on the cross trainer for 45 minutes over the course of about nine months. It was a massive challenge and I’d sleep for hours after the intensity was increased but it really helped over time. I also worked closely with a nutritionist to support the areas of my body that were really struggling, like my adrenals and gut bacteria, which made a massive difference to my energy levels and then did acupuncture and yoga to help my mind. It took me about two years to get a handle on my symptoms after changing the way I lived and it absolutely wasn’t uphill all the way. I would have good periods followed by bad periods, and it felt at times like I was making no progress as a result, but overtime I did get there.

Since September 2014, I’ve had good control over my symptoms and they no longer dictate my life. I’ve been off my medication since then, and on a day – to – day basis, I feel really well; much better than I ever did before in some ways as my energy can by sky high! That being said, everyday I have to be very conscious of what I’m doing in order to maintain that feeling of good health, and I do have to live with pretty strict parameters to keep it. When I step outside those limits my symptoms start coming back and I quickly feel pretty rubbish. The parameters are relatively simple: eat lots of natural foods, avoid refined foods, exercise, de-stress, sleep and generally look after myself. I love doing all those things, and I’ve got myself into a good rhythm so that they’re naturally now a part of my life and don’t seem hard to do anymore, however, sometimes I don’t have as much time as I’d like to stick to them all and that’s when things go a little wrong for me. There are a few questions that lots of you ask me around this and I wanted to address them…

1. How Do You Stay on Track?

Staying motivated 24/7 can be tough. I may love sweet potatoes and kale, but even for me it takes a lot of discipline and commitment. I absolutely love this way of living and eating. I would never swap a big bowl of veggie curry or a pile of medjool dates with almond butter for a burger or a bag of Haribo, those things honestly don’t appeal anymore. However, that doesn’t mean that sometimes I don’t just wish there were way more options for me everywhere and that I could find the food I wanted to eat as easily as everyone else. You have to be so organised to eat this way all the time; always carrying snacks with you and trekking across cities to find something to enjoy that won’t make you feel ill! It can get a little frustrating and as much as I’m pretty used to it now and feel it’s so worthwhile, I do still sometimes feel like a bit of a weirdo. For example, when I go away for a few days with work, my bag is 90% food, and I always have to do something a bit different. For me, staying on track is just about these simple organisational tips, and always making sure that I have great food to eat so that I don’t get ‘hangry’ or develop serious food envy. It can be boring to constantly be thinking ahead, but if you’re satisfied and full, it’s all a lot easier! I then focus on how good I feel compare to where I was a few years ago, and try to focus on the positives around that rather than getting frustrated and envious of other people. Your life is your life, and we don’t gain anything by comparing ourselves to others. We all have our own unique struggles so there’s no point comparing one persons difficulties to another. Being kind to yourself and accepting of the situation makes it all a lot simpler – although, I know that’s easier said than done!

2. How Do You Get Back On Track When You Fall Off!

This is also a very important question. I don’t fall off the bandwagon and eat Ben & Jerry’s or a Domino’s (although I get asked if this happens all the time), but I will occasionally eat a (or occasionally several!) whole trays of sweet potato brownies or something similar whilst recipe testing, as moderation and willpower aren’t my strongest points. Something like sweet potato brownies may be healthier than the conventional alternative, but after a week or so of eating way too much I find myself feeling a bit rubbish and my old stomach issues will come right back – most notably I’ll look about nine months pregnant and be in lots of pain. For me I need to then have a few stricter days to change my norm, focusing on lots of veg, beans, grains, nuts etc rather than kilos of dates and honey! I’ll make lovely meals like porridge with nut butter, bowls of brown rice with roasted veg and quinoa salads, then I’ll snack on homemade hummus and crackers and a spoonful or two of nut butter, rather than reaching for more flapjacks or spoonfuls of maple syrup. I’ll also try to get to the gym or go to a yoga class so that I feel positive in myself, getting a good sweat on always puts me in a happier place and motivates me to be kind to myself.

3. How Do You Stop Yourself from Feeling Isolated?

I think everyone feels isolated sometimes for any number of reasons, so never worry that you’re the only one – it’s just that everyone has a different reason for feeling that way. For me, and I’m sure for lots of you, it always comes down to being a little different with the way I have to eat and live. I’m conscious that most of my friends and family never have to worry about every ingredient in their food and they can all go out for late nights eating, drinking and partying in a pretty carefree manner, whereas I have to pick and choose my moments, ask waiters never ending lists of questions and pretty much always call it a night a little earlier. To start with I found this really hard, but as my love for healthy living grew, and I found hobbies in that sector that made me equally happy, it became so much easier – although of course I still have my moments of frustration. I know it’s a massive cliche, but things like yoga now make me so happy, and I find it a lot less isolating to think that I’m leaving a party earlier than I would would have done in another life to go to bed but I’l wake up feeling well and that means I get to go to a class I love in the morning. Finding friends that you can share the healthy fun is a huge help too, I met two of my closest friends through my job in this space, and they love kale, spinning and matcha lattes as much as I do. They can relate to everything I’m saying and that makes the world of difference. That’s not to say that all your friends have to be health nuts, lots of mine are the polar opposite and we still have the best time together, but finding some people to share your new culinary experiments with is really great.

4. How Do You Stop Yourself From Getting Frustrated When Symptoms Do Appear?

This is a hard one, it’s a massive mental push not to panic and feel like you’re slipping back into a place that you worked so hard to get out of. This feeling is probably my weakest spot when it comes to managing my illness, and I have certain symptoms that often create real feelings of anxiety and I tend to get really upset and lose all perspective really quickly. At this stage I try to focus on much I have improved, even if it’s not quite where I’d want to be in an ideal world. Two years ago a bad day would mean being bed bound all day unable to do anything really, now it means I may feel a bit rubbish, have a really bad stomach or something else, but I’m certainly a long way off where I used to be and that’s such an important thing to focus on. I then try to make a plan of action for getting rid of the symptoms, so that I feel pro-active. I often write in a notebook the things I plan to do to help myself and try to tick them off as I go. I’ll do this for a few days so that I feel I’m doing positive things to help myself rather than slipping into a world of panic. I also try to get to a yoga class or the gym, as I find that often helps take the edge of the panic and slightly refocuses my thinking.

5. Always Be Kind To Yourself

This last point isn’t a question, more a commandment – we all have to learn to love ourselves and be a little more understanding of our own issues! Beating yourself up only heightens feelings of negativity and therefore worsens the situation. It’s so easy to be really hard on ourselves though, we all do it, but it never helps us feel better. With me it definitely sends me into a downward spiral as I start focusing on all my insecurities, rather than just trying to find a plan of action for the issue at hand. So next time something goes widely out of your control or you feel like you’re making no progress, stop and focus on a solution to that single issue rather than letting one issue create a never ending spiral of negativity, because that will only kick you down further, which isn’t what you need. Instead do something loving and kind for yourself while you work out how to help yourself – make a lovely nourishing meal, drink a cup of tea in a warm bath and snuggle your dog, just do something that helps you feel positive and inspired.

I hope this helps some of you in your journey and most importantly helps you feel that you’re not alone in it, because you’re absolutely not! We all have our own ups and downs, but I can promise you that you’re not the only one that feels insecure, isolated and ill sometimes – just have faith that it can and will get better, and remember to always be loving and kind to yourself as you go.