30 Things to Make the Day of Someone Chronically Ill

Since becoming chronically ill in 2011, there's been many things that have, and would have made my day. From simple messages, to thoughtful gifts. Here, you'll find my list of 30 Things to Make The Day of Someone Chronically Ill.

1. Deliver a meal. Make sure to ask in advance if they have any dietary restrictions or are following any guidelines. Stay for a visit, or just drop off the food if they're not up for it. Sometimes those who are chronically ill, aren't up to preparing even a slice of toast for themselves, having someone drop off a meal, is always greatly appreciated.

2. Send a quick email, text, or message saying you're thinking of them.

3. Add "No need to respond" to the end of your message - having people in your life, understanding that you sometimes aren't up to responding can make a huge difference. Feeling like we have to respond, because someone doesn't understand how difficult it can be to move our fingers, always makes it easier for us to then have a warmer response when we are up to it.

4. Add "Feel free to take me up on this offer whenever" when you offer help - This is always a wonderful thing to hear. Sometimes we may feel horrible for needing help, so may reject it at first, or we may feel we don't need it right then, but knowing the offer is still sincere whenever we need means we may not be as worried if something comes up that we do need help with.

5. Send a text the next time you're at the grocery store and ask if they'd like you to pick anything up. - This always gives me a warm feeling of gratitude. Just having that offer, 

6. Set a calendar alert reminding you to check in with a quick hello or offer of help on a regular basis. - Sometimes, as someone suffering a chronic illness, people sort of forget about me. If I'm not seen in person for a while, or haven't started a conversation via some type of message for a short period of time, I will find people no longer will contact me. 

7. Send a housekeeper to clean up their place. Take care of the details so they just need to be there to open the door, or surprise them, (if they have given you a spare key) and have their place cleaned while they are at a treatment or long medical appointment

8. Send a text the next time you're at the pharmacy to see if they need any prescriptions - Sometimes picking up prescriptions, vitamins, well any medication, can be very difficult for us. This will help us dearly with our treatment, and take one of our worries off our chest.

9. Send a mobile masseuse for a gift massage. - Of course if they would enjoy this. It may be a good idea to check the masseuse has a basic understanding of any physical issues we may have.

10. Offer to take them out for a coffee or lunch date. - Sometimes, we get so used to people no longer asking us out due to being ill, we never go out, for anything except medical appointments, and groceries. Every time a friend has taken me out, has made my world

11. Offer to take them out to a movie. - If they're too tired, come by with a rental.

12. Offer a ride to treatment or appointments and keep them company.  - Even better, commit to giving a ride on a regular basis throughout any treatments treatments.

13. Let them know you're "on call" for emergencies. - Mean it. There's nothing worse than feeling like you don't have anyone to rely on in an emergency.

14. Order take-out and have it delivered. - If they seem too overwhelmed to make any decisions, about what they would like, just get a sense of their dietary preferences and pick out a nice meal to send.

15. Gift a magazine, newspaper or even box subscription. - This can be a nice way, to make the life of someone chronically ill a little entertaining. Often we will not spend anything on ourselves, as we are caught up paying for our treatments, appointments and medication.

16. Gift a good book. - This can be extremely helpful, for when we are bed or house bound, or any friends who are admitted to hospital for treatment.

17. Tell them you love and care about them. Even if they don't have the energy to respond, your message means a lot and can often be the only positive thing they see or experience that day.

18. Understand that someone chronically ill is probably too overwhelmed to ask for what they need - take the initiative  and offer specifics, don't just say, "Let me know if there's anything I can do for you."

19. Remember to still be there a few months after the diagnosis - It's no longer new, but your friend will still be struggling and needing logistical and emotional help.

20. Does your friend have a dog? Offer to come by and take them for a walk, to the vet, or groomers

21. Does your friend have kids? Offer to babysit, do a school pick-up, help with homework or have them over for a sleepover. 

22. Say, "Give me a task." - Maybe it will be laundry, picking up groceries, or a random errand.

23. Does your friend have a garden? Offer to come by and do some watering and care. 

24. Buy a monthly parking pass for family members when your friend has a prolonged hospitalisation - hospital parking gets expensive, and this is an extremely thoughtful gift both for your friend, and their family. 

25. Gift a super comfy blanket or pillow. There is nothing better than a good blanket or pillow for when you're bed or house bound, and even when you're in hospital. Sometimes having your own blanket or pillow, makes the hospitalisation easier.

26. Just listen. - Don't give advice, don't try to be super positive. Just listen and let your friend talk. We sometimes will keep everything we're feeling locked up tight, and having someone listen when we let it all out makes it so much easier.

27. Ask what they need from you most right now - And Do it. So often I've had people ask me what I need when I'm at a bout of my worst health wise. They then don't do it.. It doesn't make much sense to ask for no reason.

28. Most Chronic Illnesses aren't contagious - give your friend a hug to let them know you're there for them. A lot of the time people will stop having any physical contact with us, and it becomes a little depressing. Hugs give us a huge amount of comfort.

29. Make a CD/USB of music for them. - Creating a CD or USB of music you know your friend will love, to listen to whenever they need is one of the sweetest gifts I have been given since becoming chronically ill. It shows you not only care, but know what music will make their day better. 

30. Believe their Diagnosis. - It's so hurtful when friends and family don't believe your diagnosis. It can make us feel crazy, because that's implying all our symptoms are in our head. Having people believe us makes moving forward in treatment, and our own understanding a lot easier.

Girl Problems When You Have Chronic Illness - Body Hair

This is something I've been wanting to write about for quite a while, and have only just had the confidence to write about. As many know, even though I suffer from a variety of chronic illness's I take pride in my appearance, and truly love to make myself look as healthy and bright as possible, which is how make-up became a big part of my life. But over the past few months, things that only happened every now and then, have started happening often, and making being a girl, extremely difficult.

Now, girl problems for regular 18 year old girls could include friends fighting, what outfit to wear, how do I get my hair to look good and so on. Although I have these minor issues, I don't see them as issues or problems at all for myself. My new girl problem, is shaving my legs. 

Whether it is from my EDS, ME/CFS or Fibromyalgia, I can no longer shave my legs, without causing myself a great deal of pain. Not from the razor, but from having to reach my legs to shave them. The pain is excruciating, and even though I have the flexibility to actually reach my legs, the pain is something I can't deal with. It has made me wonder, how many other's like me have this issue? Do they just no longer shave and constantly hide their legs underneath clothes? Does someone else shave their legs? Do they go get their legs waxed or body sugared? Do they no longer care and sport a hairy leg?

Maybe one day girls having hairy legs will be the new fashion statement, but I enjoy that feeling of smooth legs against my bed sheets, and of course, not having dark black hairs staring up at me when I look at my legs.

It's not that I'm ashamed of body hair, or that I believe all women should have smooth legs, underarms and so on (because I definately don't believe that, you should appear how you're most comfortable, not how society is most comfortable), it's just, it is how I like to be. It's how I am most comfortable and to not be able to be how I am most comfortable, is difficult.

When you're chronically ill, being comfortable with your body is so important. A lot of the time, you can't do regular exercise, or even go out dancing with friends (which can be a form of exercise anyway), so many people who are chronically ill, feel uncomfortable with their body because their body, can't do what other's can, OR, they can't work towards, what others are working towards physically. It's important, to recognise what your body can and can't do, and exercise while being chronically ill, is something I will talk more in depth about another time. Another reason those who are chronically ill feel uncomfortable with their body, is their inability to do as much for themselves as they used to be able to, or others their age are able to. Such as circumstances where you require a carer to help you do daily hygiene things, or maybe just wash your hair. If your chronic illness affects your hands, hair becomes a problem, and I often find myself just leaving it tied in a bun for much too long, and avoiding washing and brushing it, due to pain, and weakness in my joints, particularly in my hands, and shoulders. Another reason being that your body changes much differently when your chronically ill, from the colour of your skin changing, to how your skin hugs your bones and muscles, swelling, bruising easier, putting on weigh easier, hair growing darker or lighter, and so on. There are so many reasons, I could go on all day. So taking all of this into consideration, for me, not being able to do one of the things that makes me comfortable with my body, makes living with a chronic illness/s so much harder. It's actually making my self confidence fall, and I can seeing it affect me in more ways than just hairy legs. This is why I am writing this blog.

I don't want anyone to ever feel uncomfortable, or unhappy with how they look, and essentially, I am uncomfortable and unhappy with how I look. Stereotypes are thrown my way for being chronically ill already, I'm terrified of what people will also think of me if they see hairy legs on a person, who is so obsessed with makeup, fashion and all things beauty, feminine and pretty. I know, I shouldn't be. But I can't help it.
It is now my goal, to not feel this way. If I were brave enough, I'd wear my hairy legs like a badge of honour, but for now, I think I'll invest in body sugaring (for those who don't know, a less painful and natural way of waxing) or the more fun option, the boyfriend.

I feel like this blog was more of a ramble than anything else, but I hope this brought some understanding to someone, or made someone in a similar postition, not feel alone.
Let me know if you'd like to read more 'Girl Problems When You Have Chronic Illness'.

Dealing with my side affects.

At the end of June last year, specifically my 18th birthday, I was prescribed a pain medication. It was a great birthday present. I only have needed a pain medication for my fibromyalgia, EDS and M.E./CFS for a very long time. The thing I didn't realise was, that one of the side affects to this particular pain medication was gaining weight. I won't mention the pain medication name. We will just call it S. I knew that dizzyness, and fatigue could be side affects of S, I did get those, but only for the first few days. Over 3 months, I gained 10KG.

 June last year.

 Today

People around me, still say I look healthy, it is now almost a year since starting it, and it hasn't been long since I stopped because it honestly wasn't making a difference, but 10Kg to me, is a lot. I have struggled with my body image so much. I was at the point, on my 18th birthday that I actually was very happy with my body. I'd been at the same weight for over a year at that stage, and it wasn't until that May, that I started to love it. I had realised, I was the perfect weight, and I looked good. 10Kg later, my stomach constantly looks bloated, and some days, I look pregnant. I can't fit into any of my winter pants, bar one, and that is squeezing into them. Now, I have lost all confidence in my body. I want to hide it. I stare at my stomach and poke it after having a shower, wishing it would just go back to it's old self. I burst into tears last week, in Big W because I couldn't get my lower leg through a pair of jeans I was trying on... Not because of the jeans, because everything that makes me happy, in one way or another is destroyed through the illnesses I have. I have to give up opportunities, or put them on hold, medications that make me feel sick and cause me to miss out on events, or as this one has, made me put on weight and cause me to hate my body once again. I want to love it again, I do. I want to be confident, and wear my bikini even if it is getting into the cooler months. I want to not wear shapewear under a tight dress, or choose to wear a loose dress over a tight one.

What am I doing to change my weight and deal with this side affect?
1. I started a Mediterranean Diet. I will be posting my favourite recipes in a new post soon. This diet is meant to be amazing, for losing weight & for helping with health. I have had to adjust it, to suit my food intolerances, and the fact I need high salt intake for my POTS. But it's a huge start. I already feel slightly better.
2. I've started once a week, spending 20 minutes doing pilates. I'm starting with my legs. When they are strong enough, to also add other exercises we will. I know this will take some time though.
3. Swimming. It is starting to get cool, but I try to go swimming at least once a week.
4. Being positive. It has helped me in the past, with my positive writings every day, it will help me now, and in the future.

I know this hasn't been much of 'dealing' with my side affects, more of how badly I'm coping. I hope that maybe this post, helps someone else who is feeling awful. My page and email is always open for messages. Sometimes a chat can make a world of a difference.

The Power of Photo Editing

 

This is me, Coralee. I'm 18 years young, a student, musician, model, crafter writer and fighter of illness. I'm a friend, a daughter, girlfriend, and so much more. But is this really me? Do I really have almost clear skin, and perfectly applies makeup? Does my skin really glow like that? A lot of you may see me posting about what it's like to live with a long term illness on Instagram, Twitter, sometimes even Tumblr. So keeping that in mind, how can I look so nice in this photo, that I posted a few months back, on a day where I felt absolutely horrible. The truth is, I didn't look like that on that day. I wasn't wearing a speck of makeup, the lighting wasn't like that, and my skin wasn't clear. Below is the the original image beside this image.

 

This here, is just a small example of how much you can change how you look, or change how someone else looks with some sort of photo editor. And this photo, was edited with a very, very basic online editor called picmonkey.com. As you can see, I was able to make myself look more away, remove the dark circles under my eyes, eliminate most of the acne that was visble, add makeup that looks REAL, and as most basic editors let you do, change the lighting. By using the few tools available on picmonkey I was able to look better than how I actually looked and felt. This isn't anything new to me. For a long time, I hid being sick from those who weren't close to me. In photographs I did not want to look sick, I wanted to look alive. I made it my duty to not look sick, and a lot of the time, without even trying you can not tell, as I do have an invisible illness, but sometimes, it takes a toll on me, especially my worst days where I looked like a walking corpse. When I got sick, I suppose is when I really got into make-up. It was one of the ways to make me look healthier than what I was. So days when I want to take a selfie, but look awful, picmonkey can do the job instead of me applying make-up. This isn't the only thing you can do only such a simple editor though, you can change your proportions. I can increase or decrease my bust, chin, nose, lips, legs, arms, stomach, literally anything. I can change my hair colour, eye colour, I can add a spray tan, or lighten my skin. If this is what you can do with an editor that is free for the basics, or $5 a month for a few extra's, imagine just how much you can change with proper editors such as photoshop. People all around the world have been showing just what you can do in an editor, but I felt it important that I should share my own part in it. Too many girls are wanting to look like the photo's in magazines and on billboards, but the models, mots of the time, DON'T look like that. There has been instances where the photographed person no longer looks like themselves. We need to make more and more young girls aware of this, until they understand. It isn't real, and you're still beautiful whether you look like an edited photo or not.

When Life Throws A Curveball

So recently I've come to the realisation, my health really has take a wrong turn. Although my fortnightly B12 injections help a lot with my neurological symptoms, I am no longer able to do things I was able to do just a few months ago. Whether this is to do with stress in my life at the moment, or just an unlucky bout I'm having - I don't really know.
My pain levels have been really bad as of late also. I need to start building up the use in my arms again, as I can't play my cello for as long as I used to be able (even whilst sick). It was just 12 months ago, I was playing my cello for 6-10 hours a day at music camp, and my body coped really well. At the moment, I'm lucky to get a 30 minute practice in without feeling weak, having tired out, and on occasion, feeling a bit dizzy.
I had plans, that this year was going to be my year. I was more positive about this year than I have ever been about a New Year. This is the year I graduate, something I've had to take an extra two years to do. All my friends left for uni last year, then the friends I made since are leaving for uni in these current weeks. I also had so many goals. To get my not for profit organisation up and running, to complete and pass at least 1 A.M.E.B exam on my cello, record some quality songs, regularly perform at retiremant and nursing homes, move town, take up all opportunites thrown at me for my blogging and do more modeling. All of those opportunities are sitting there, in front of me. I am mentally ready to grab onto them with all my soul! Physically, I'm not so sure I can do everything I had hoped and wanted. Graduating has to happen this year. It is my last chance really. I also feel like I have to do the AMEB exam this year. I've waited too long and surely, I'm at a disadvantage having not done one in my 10 years of studying the cello? The NFP organisation I have help with, but not nearly enough so I feel this is going to take me a great deal longer to have happen; I find this really disappointing. I am creating it as something positive, not just for me, but so many others. It makes me feel I've let down so many people. My modeling is really easy to deal with - it does not take all that much energy out of me because really, it's just acting for a photograph. Do you know how many times I have 'acted healthy' and no one has even noticed something is wrong? (except for my mum of course, mother's know everything).
Although I now know everything is going to take a bit of a halt, or delay, my dad sent me some very wise words.
"You need to find joy in who you are, not who you wish you were. Who you want to be is a journey everyone must make.. It has many steps, and takes as long as it takes and unfortunately, there are no shortcuts. And you my girl, have a few extra steps on that journey - overcoming your illness. Don't let your illness define you. There are ways to get better, you know what they are. And you are the only one that can do them. Mum and I will help if we can. We love you kiddo. Don't forget that"
This made me feel a lot better - but I still feel disappointed in myself. At times, my illnesses do define who I am. They have changed me, and continue to change me. This year will be hard, but I will make it work. Some how.

What Is 'Real' Beauty?

Hi everyone! So below is an opinion column I had to write for school, I thought it was extremely relevant and that I should share it with everyone. I'd just like to say, I chose this topic for my column because I have struggled with the media's representation of beauty and what women should look like. I say this should be NO MORE! Women, men, girls, boys, EVERYONE should be happy with their appearances, everyone should feel beautiful. So below is my very thought out opinion column, I hope you enjoy it. 

Beauty is a topic that doesn’t go astray in many women’s day to day lives. From clothes and make-up to gym and dieting – it’s all constantly there being advertised, talked about and drilled into our brains. With technology being readily available and children accessing it younger and younger, young girls are being pushed into a whirlpool from day one in life. To be thin, NO, now be curvy, NO, now be thin, NO, now be curvy. Why isn’t the media telling us to love ourselves for who we are, not what we look like? With constant pressure to be beautiful, what affect is this having on young women?

Current campaign circulating ‘Real Women Have Curves’ features photo’s of bigger women being compared to thin women. In one promotional photo the Victoria Secret ‘Love Yourself’ campaign which is promoted with thin Victoria Secret Angels is placed above a photo of the Dove ‘Love Yourself’ campaign, which is promoted with plus size models. Another promotional photo being shared for the campaign is one with Marilyn Monroe, pointing out all her curves in the right places, beside this photo is one of a girl with anorexia. Below both photo’s is a caption “I’d rather a girl like this,” (pointing at Monroe), “than a girl like this.” (Pointing at the girl with anorexia). How else could this affect girls than make them feel insecure about their body?

Left: Victoria Secret 'Love Yourself' Capmpaign. Right: Dove 'Love Yourself' Campaign. 

The effect of this campaign is shown on 16 year old, UK model, and social media star Cemone Warren’s Facebook page. Originally she posted a photo of herself, in a crop top and leggings. This photo received so many negative comments about how thin she was, she removed it. She later reposted the photo on the 19^th February 2013 with the caption “So I deleted my other photo that was like this because all i got was 'too skinny, too skinny eat' ect, I eat loads & just don't put on weight, so why should I hide it? i'm not ashamed, f*ck you.” Even after stating she simply can not put on weight she still received comments such as the following “To anyone that says I eat loads and can't put on weight. Here's a way to fix that problem. Eat more. And if that don't work. Eat more than that” and, “She is a good looking girl but does need to put on a little bit of weight..” and finally, “Holy fuck please go to McDonald's or something”. At the same time all these negative comments were flooding hundreds of comments were also young girls stating they too had the same problem – they just had a fast metabolism.

Cemone Warren's photo posted to Facebook.

Just two and three years ago, skinny shamming didn’t exist. All the negative was on ‘curvy’ or ‘bigger’ women. DailyMail.co article from October 2010 by Fiona Macrae titled ‘Being Thin Makes Any Women Happier Than A Man’ stated that what makes a woman her happiest is her dress size and weight. Another article from Forbes.com, June 2011 by Lisa Quast explained that being thin translated into a bigger pay check for women. It states that Timothy A. Judge from the University of Florida and Daniel M Cable from London Business School “set out to test the norms that society holds very different body standards for men versus women.” The article then states that their research found

“• ‘For men, increases in weight have positive linear effects of pay but at diminished returns at above-average levels of weight.’

• Gaining weight is more damaging to women’s earnings than to men. ‘For women, increases in weight have negative linear effects on pay, but the negative effects are stronger at below-average than at above-average weight levels.’”

August 9 2013, Jasmine Bala of Girls Globe wrote ‘On Skinny – Shamming: Not All Real Women Have Curves.’ Bala comes from both points of campaigns, and explains how “In the light of body-acceptance and fighting the body ideal, it is a myth that thin women have it easy.” She goes into detail how dangerous it is to say that one body type is more worthy of beauty than another. Some very vaild points are made on skinny-shamming, the most vaild being “If you wouldn’t call a women fat, why would you want to call a woman thin?”

March 28^th 2013, Amanda Russel, a fitness guru who posts workout video’s on YouTube released a video titled ‘Why Are You So Skinny?’ In this video, her friend interviews her on what it’s like to be skinny and the criticism she receives. Her friend then expresses just how much it upsets her to see people tell Amanda that she is “Too skinny,’ or that she shouldn’t be posting videos as she is a “bad influence on young children.”

Better Health Victoria on Eating disorders claims that “Westmeand Hospital in Sydney and the Royal Childrens Hospital in Melbourne have observed that eating disorder cases have increased substantially in the under 12 age group.” This is both ends of the scale, rapid weight GAIN and rapid weight LOSS. 12 years old and younger suffering from eating disorders more now than they ever have. Why? Because with easier access to the media now than ever, children are witnessing the media’s portrayal of so called ‘beauty’. How the media wants us to look, or what they want us to buy so that we can look that way. It’s affecting children, and in my opinion, needs to stop now.

The media should be telling us to love ourselves for who we are, not telling us to change our body to be perfect.  

Girlfriend Australia Article.

Hi all!
Long time since I've posted here, and I'm very sorry. I am hoping to share my journey with you all a bit often now - organise my time a lot better.
Today's post I've decided to share with you all an article that is my story. During M.E./CFS/FM and EDS awareness month I contacted various magazines, newspapers and news channels etc. The only one to get back to me was Girlfriend Magazine Australia. They wanted me to share my story and I did. Though they left out many things, for example how much support I recieved from my dad (not just my mum) I'm glad I still got to share my story. I was a little upset with the title, but I understand what editors can be like. So here is my story that was shared in Girlfriend Magazine Australia - I hope you enjoy it.

(This article was in the August issue of Girlfriend).

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