5 Things About Life With An Auto-Immune Disease

It's Coeliac Disease Awareness Week, so I thought this would be an appropriate piece to write, considering it's been 7 years for me this year.

1.You can't live and behave like the every day person, especially when it comes to stress and workloads.

I'm still continuously learning this lesson. My body can't handle stress and certain workloads, as it is too much. My immune system is weak as it is, and so pushing it beyond it's threshold leaves me so exhausted and then, in most cases, I will get sick with something because the stress has taken a toll of my already vulnerable immune system. Learn what your limits are, and balance it out with rest. Stress is toxic for your auto immune disease. You need to be able to give yourself plenty of time to rest between work and play, or else you'll find yourself out of the game for weeks at a time. Lighten your work load where possible, or cut back on other commitments: it's hard mentally to live this way, especially if you have a busy mind, but at least in my experience, my body just can't keep up.

So, don't do late nights. Don't drink in excess. Don't forget to prioritise your nutrition. Don't be relaxed in whether you take your supplements or medications. Prioritise exercise if it makes you feel good, and if you're not feeling well, don't do it (everyday people should also do the same). Find your meditation, still time. Have a good self care routine. Your body is fighting a war against itself every single day.

2. You need a good flare up routine. Something easy and fail safe that helps. Nothing too complicated.

I know in the middle of a flare up, if you're like me, your brain doesn't work properly. You can't think straight. So, to get yourself feeling better (although we all know it just takes a little time, sometimes) you should have a good little routine in place that's easy to do and follow, but makes a big difference in your pain and discomfort.

For example. because my auto immune disease affects my digestive tract, I have a list of easy to digest and simple foods I tend to lean towards, when I get my appetite back. Lots of tea and warm lemon water. A warm bath, a wheat bag, a day or two in bed with Netflix. Lots of lavender essential oils, to relax the body. Lots of sleep. If I feel I can go for a bit of fresh air, a light walk, but nothing more and I don't push it. Every auto immune disease is different but these would work for any, I think. Keep it simple and therapeutic. And be patient: your flare up isn't going to go away over night.

3. People won't always (or ever) understand. Don't expect them to. Be glad that they don't understand. I would not wish this on anyone, would you?

The fact that they don't understand is a blessing, because I want as few people as possible to know what it feels like to live with this kind of thing every single day. That constant worry at the back of your mind, that always feeling off sensation even on your good days, feeling restricted in life. And the flare ups, oh god, the flare ups. I wouldn't want anyone to experience that "bones on fire feeling:, that "every muscle feels like it's being electrocuted" sensation, that "my stomach is turning itself inside out" pain. That doesn't make you alone either, because you have these wonderful people that care enough to ask how you're feeling, or what it's like. You're the opposite of alone.

4. As hard as it is, try to see the good in your diagnosis.

At least in my case, finding out meant I stopped eating gluten which so greatly improved my symptoms (ones I didn't even know I had, because I was used to feeling the way I did, and didn't know anything different) and also, should protect me from any further damage that my disease can cause, which leads to certain types of cancers or other serious health conditions.

Yeah, I really miss pizza. And pasta. And bread that tastes like bread and not cake. Having way more food options. Not having this anxiety about whether I'm going to get sick every single time I eat out. Having to religiously read the back of packets, always taking risks with my food. The flare ups really suck. Feeling constantly a little bit under the weather, never quite truly well, is really hard. And they are the good days.

But, it has opened my eyes to true health. How it's a constant battle, and it's worth it. How to take care of yourself. My knowledge in health and nutrition and so many other things has increased by the truckload. I've learnt a lot through the years, through good and bad experiences. I've learnt a lot about cooking, how to make things taste better. I've tried many products; some good, some bad. I've watched the range of products forever expand over the years, and that is so exciting and comforting. I've seen some eateries expand their knowledge and take more care, and provide more options. I've felt less isolated, less afraid. It's still hard, but the world is becoming more friendly for people like me.

5. Take care of your mental health.

When you get told you're going to have this illness for the rest of your life, and you currently feel like you're dying, it's pretty dark. It can put you into a really horrible place mentally. For the last year, I've been feeling quite unwell consistently. "A bad run" we will call it. Never quite right. It's taken a huge toll on my mental health, which was already vulnerable to begin with. That doesn't help you feel better physically; in fact, it can worsen it.

Your mental and physical health work together. It's important you take care of both of them. If that means talking to someone; a therapist, a friend, a family member, your dog... do it. Express yourself, your pain and worries. Get them out of your head, at the very least. Being alone with your thoughts is sometimes the worst thing you can do.

If you're not well on the whole, you aren't truly well. You need to see your mental and physical health as a big machine, and those are seperate parts of the machine, yes; but, if one piece is not working, the whole machine won't run.

And being sick is hard work mentally. Stressful to take time off work, anxiety over going to the doctor or having to cancel plans or not being able to even get out of bed to do the basic stuff. Anxiety over going out to dinner and getting sick from it, sad when you do get sick, angry at yourself for being sick (even though it's not even close to being your fault). So much negative emotion, so much sadness. It's exhausting.

Give yourself the best fighting chance by being in a good place mentally. If you don't treat your mental health with as much respect as your physical health, and your physical health takes a turn for the worst, you won't have a solid base to stand on. And that's so important.

Thanks for reading. I hope this somewhat inspires you to learn more about auto immune disease, especially if you have someone in your life who suffers with one. There are so many, and they all affect us a little differently. And yet, we are all somewhat the same: we feel pain, we suffer, but we are also so strong. Through all the unknown, the testing, the trying times, we go out and we live our lives every day. I'm proud of all of us.