Online Support With A Chronic Illness - Rare Disease Day

Hiya!! This post is about something thats very important to me.. It's also rare disease day today so it fits in nicely.

You may not all be aware but I have 3 chronic illnesses called Ehlers Danlos Syndrome, Postural Tachycardia Syndrome and ME/Chronic Fatigue Syndrome - Click links to find out more. I was extremely unwell but I seem to have been able to turn my life around pretty drastically throughout 2014. So I try to force myself to live and act as normal as possible now, with the help of medication.. which I do prefer as I don't like my illnesses to defeat me. But I've been struggling lately, so I feel this was the right time to write a post like this.

I've been in two minds about posting about my chronic illness online, as I've received hurtful comments in the past about posting how I'm feeling and updates on my health. But in other ways it's been such a help to my life. I've also read and heard about the amazing help, positivity and hope speaking to others online has given them. I've heard of many stories where people feel extremely alone with their illness, and by joining online support groups they've found hope where there was once fear, worry, loneliness.

When you're chronically ill, especially when that illness is rare. Its hard because not many people can understand what you're going through, you truly do not know how hard living with a chronic illness is unless you're going through it yourself. This leaves anyone suffering feeling alone and very isolated. Which then can lead to depression and anxiety. By joining support groups on Facebook or searching for your illness tag on Instagram, you can friend/follow people going through the same things as you. Seeing how others cope with their symptoms, being able to speak to them too share advice and offer support really helps someone who is in a bad place. You can talk to family and friends about the same things, but as much as they can help you, nothing beats speaking to someone who knows exactly what you're going through.

In my experience speaking to people on Facebook, Instagram and Tumblr hasn't only just helped me learn to deal with my symptoms and too feel less alone. Its also helped me find a diagnosis. I was firstly diagnosed with Ehlers Danlos Syndrome but I was having unexplained heart and nervous system related symptoms. I had no idea what was causing it, but by posting online people with EDS reached out to me and told me it sounds like Postural Tachycardia Syndrome, which is commonly associated with EDS. Without me sharing my health issue's online and having the advice of others, I could still be undiagnosed and suffering quite badly from those 'unexplained' symptoms.

(p.s I'm no way encouraging you to self diagnose, if someones suggested an illness to you never assume you have it until a medical professional has diagnosed you)

I've also gotten to know some of the most amazing friends too! I think this is one of the perks of being chronically ill. Because if I wasnt I would have never spoken and got to known some of the amazing, kind, helpful and down to earth friend's I have. They're always there to help. Which is great, they also don't judge when you come up with the most random questions about your new unexplained symptoms. 99% of the time you'll get a reply "omg I get that too" and all of a sudden you no longer feel like the only person in the world with this issue. I love the girls I've gotten to know over the past few years and I'm hoping to meet some of them this year.

So if you have a chronic illness I seriously advise you to have a look online to find support for your illness. It could completely change your outlook on your life. I'm so glad I searched for other's with EDS as if I didn't I would be in a completely different situation as I'm in now. And if you don't have a chronic illness please don't judge other's for writing their story or speaking openly about their illness online.. Its helping them In a way you couldn't even imagine.

Also, in honour of Rare Disease Day please be kind and loving to anyone you may know suffering with a rare disease, not just today. But everyday <3

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Nicole 

Xoxo

Healthy Eating When You're Not Feeling Up To Cooking.

As you may know by now if you've been keeping up to date with my posts. I'm not what you'd call 'well', I have a few chronic incurable illnesses that leave me in feeling exhausted, in pain and generally just really unwell. So eating healthy isn't always easy, from wanting to comfort eat myself 'better', to just not feeling well enough to cook a meal.

So I thought I'd write a post to say even if you don't feel well or you don't have time. There are still fast, healthy foods you can eat that takes the same time as a microwave/oven meal. Not all of these foods are perfect if you're 'eating clean'. But they definitely aren't bad/unhealthy.

I will say, my diet mainly consists of rice... microwave rice that is. Why not? Rice isn't the worst thing you can eat, it gives you energy, it's gluten free and it fills you up! People stay away from things like rice because of fear of carbs.. I love anything that is carbs. So I refuse to give them up!

So on this post I'll be talking you through what I do eat, or what you can eat while you aren't feeling up to cooking too much.

☻The main thing I eat when I'm really not well is Soup, I mainly just stick to one soup. Heinz lentil soup. With crackers or a slice of bread. There has also been times where I've had left over rice and I've added it to my soup to 'bulk it out' a little.

[Heinz Lentil Soup. With Jacobs 'thins']

☻Sandwiches are always a good quick meal! Bread isn't supposed to be great for you but I definitely haven't ever eliminated it from my diet, and I have what I'd call healthy eating habits. So if you aren't feeling up to cooking just make a sandwich, ham, egg, chicken, tuna or anything else that isn't too high in fat that you fancy.

[Ham Salad Sandwich... & A Cuppa]

☻Rice.. Well here we go, the paragraph about how much I love rice. I honestly would eat rice every single day... wait, I think I already do eat it every single day?! I have rice with a lot of things. But my main meals I stick too are rice with, pan fried salmon fillet/bacon & avocado/feta cheese/feta & avocado. 
All of those combinations are with rice and rocket. I always use microwave rice (Veetee long grain). I love this make of rice over others as it's nice and fluffy. I microwave the rice in 2 minutes and then season.. It's really not time consuming and doesn't use up much energy. Of course if you're having the salmon, bacon or avocado, these foods will need cooking/preparing but it doesn't take more than 10 minutes. My point about rice is, it takes no more than 2 minutes to microwave and you can have it with just about anything to make a meal a little more filling. Find a rice based meal you love and you'll have a super quick meal in no time! 

[Salmon, Mixed Rocket Salad & Rice]

[Left - Bacon, Avocado, Spinach/Rocket & Rice.  Right-Avocado, Feta Cheese, Rocket & Rice.]

☻Banana's and peanut butter is another thing that you can have as either a snack or breakfast. Have it any way you like, in oatmeal, in a sandwich, on toast, by itself is always fine too! It's super yummy. Peanut butter contains good fats and protein, only if you get the natural peanut butter. And banana's are great for you too! (So craving this now)

[Banana & Peanut Butter on Toast]

☻Stir frys are always a good option, the shops always do a ready chopped stir fry pack which provides enough for two servings. It only takes a few minutes to cook with a pre cooked (or uncooked) meat of your choice, just make sure you use a low fat and sugar sauce. And try to avoid the egg noodles. I usually buy wholewheat noodles and pop them in some boiling water while the stir fry is cooking.. and then stir them in at the end.

☻ No excuses if you're going to the shop and can only get a ready made lunch or what most shops call a lunch time 'meal deal'. There is always a healthier option sandwich, whether it's just a plain ham sandwich, a low fat egg mayo, tuna cucumber, or a chicken salad. There are healthier options. As for the snack, if I'm craving crisps I'd usually go for the Walkers Sunbites as they aren't AS bad. But otherwise I'll have carrot sticks, apple bag, pineapple or some kind of fruit. I always have water with my meal deal (although in my photo below they had no water left..my boyfriend drank the oasis). You can always find a healthier on the go food option in the shops.

[Left- Egg & Cress Sandwich, Sunbites Crisps (Don't Usually Have Oasis).  Right- Sainsbury's Made Fresh, Pesto pasta, With Mozzarella Salad]

☻With things like oven foods. There are options that you can pop in the oven and create a fairly healthy meal from. Bake in the bag fish, grilled chicken pieces, veggie burgers etc. They also do some amazing frozen sweet potato chips in Tesco!!! So if you're stuck to only oven foods, have a good look in the freezer sections.. you'll find there's healthier choices than pizza and chicken nuggets.

☻Eating out, even when you have to eat out, there are still ways to be healthy. And you don't even have to spend much money. There will always be healthy food choices on menus in restaurants and you have the choice to substitute things from normal meals, like fries for boiled potatoes. If I'm trying to be really healthy eating out for food, I order a starter and a side, and ask them to bring them out with the main courses. Things like soups are good on the starters, and salads for the sides. There will always be something you can chose.

[Tomato Soup & Mozzarella with Tomato Salad]

☻Other options you can have are eggs, eggs are fairly fast and easy to cook. Especially poached or scrambled eggs. Have scrambled eggs alone, on toast or with baked beans. I usually have poached eggs with avocado. But there are plenty of ways you can make eggs and add more nutrients to the meal.

[Left - scrambled eggs. Right - Avocados]

☻Pizza... yes healthy pizza. Pop the oven on, grab a wholewheat tortilla wrap, cover it in pizza/tomato sauce and add your choice of toppings. Chuck it in the oven until the cheese has melted or the wrap has crisped slightly.. then enjoy!!!

The point in this whole post was to advise you that there are ways to eat healthy in circumstances where you don't want to cook, or you don't have the time to cook. Where you need to eat out at least once a week. Or you're in such a rush that the only thing you can pick up is a sandwich from the shops. If you truly want to be healthy, you will find a way to eat healthy. If you look for healthy options you'll find them.

I hope this post was helpful to some of you, good luck on healthy eating! :-)

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All photos were taken by myself - follow me on Instagram @colemaria_

Nicole 

xoxoxo