Wellness Wednesday (2/4/14):
Living with Chronic Illness
join the conversation on Twitter! Use the hashtag '#wellweds'
What is it? Who gets it?
Click here for a list of autoimmune diseases according to Women's Health.
Your risk for developing an autoimmune disease is higher if:
- you are a woman.
- you have a family history of autoimmune disease.
- you live in an area with high toxic levels.
- you are young or middle-aged.
according to everyday health.
Autoimmune diseases aren't the only type of chronic illness out there. There's also cancer, heart disease, and many others. Check them out here.
What the heck is a spoonie?
Click here to see who originated the "Spoonie Theory" & what it means.
Follow @mssociety to get the latest in news & advancements in MS.
What a lot of people don't know is that when you get sick, you not only need to live with symptoms and circumstances of that "disease," but either it itself depending on the problem or the treatment for it can also bring on other problems/disorders, known as secondary disorders.
In my case, I have POTS and Fibromyalgia secondary to my Multiple Sclerosis due to the origin of my lesions on my brain and spine.
Many cancer patients develop secondary illness such as neuropathy due to chemotherapy.
POTS (dysautonomia): Postural Orthostatic Tachycardia Syndrome
Follow @dysautonomia for the latest news & more info about POTS
Follow @fmnetnews for news on Fibromyalgia.
Cost & Expenses
Click here for more info on the cost of chronic illness.
Sleep is very important for everyone, but even more so when you are ill. Sleep is often difficult for some because they are in pain and/or their condition/ medications cause insomnia.
Exercise is also extremely important when you're ill. However, it's usually very hard for many because of their symptoms and exhaustion. My doctors have recommended I swim or bike. I can't run anymore due to my MS & my POTS. But i frequently go on walks and I'm still trying to find a way to swim and/or get my hands on a recumbent bike.
Meditation is also a really great tool. It will relax you and may even relieve some of your pain. I really love to journal-- the first two months or so after my first MS attack, I had a lot of trouble using my arm and hand, but thankfully I regained my function. Whatever helps you, do that.
This is again where things get a bit tricky. It's easy to say you need to eat better, but many people who are ill have trouble with their digestive system, making eating difficult. I have had lots of trouble swallowing and I have pain in my chest when i eat due to some dysmotility, which means things don't move as fast as they should due to my POTS. I also have a lap band that makes moving food even harder. Some people can't tolerate certain foods because they make them flare up, vomit or have pain. Some people are gluten free or have celiac disease. I've found that it's easier for me to eat salads and veggies than it is to eat carbs. You just need to find what works for you and go from there. Find a way and make it work.
You feel like your illness has robbed so much from you. You feel like you aren't the same person you used to be. It's hard to maintain who you are when you get sick. You can't do as much as you used to, so you find yourself alone much of the time. You're too tired to work, so you lose the social aspect and validation working can give, you can't get up and go on the fly like you used to, so your friends hang out without you, you don't know how to explain your illness to your family, so you withdraw form them. Much of what you knew slowly dissipates. So how do we stay who we were before we were sick? Should we change?
You've worked your whole life to figure out who you are, to get where you are, you've built a life for yourself and it took a lot of work and now you're sick and you need to figure out how to live all over again with your new body and lifestyle. And that is a very hard thing to come to terms with. You have new limits, you have boundaries when before you were limitless. Things are harder. But not impossible.
An excerpt of a speech from the film "Still Alice" describes it best (below.) Although I do not have Alzheimer's Disease, my grandmother did, and and although it's not Alzheimer's, I do suffer from a neurological disorder, multiple sclerosis. And after my first MS attack, I wasn't able to write, speak or process things like I did, thankfully it's returned, but I understand how Alice feels. If you have any chronic illlness, or want to understand what we are going through, I highly suggest you see this film-- it best describes the deterioration we feel and the need to stay connected to who we once were. We are all fighting to stay true to who we were and not let our illness steal our happiness.
What NOT to say...
People who are ill are VERY fragile. Sometimes their illness is invisible. It's not as visible as a broken foot or the common cold. They hate what they're illness has done to them and are trying their best to cope with their circumstances. It's important to know what NOT to say to someone who is sick because one wrong thing can make them feel worse.
Click here for more tips on how to talk to someone who is ill.
From caregiver to disabled
It's very difficult to go from someone who was an active participant within a family or group of friends to someone who needs to rely on others. Sometimes it's even simple things that we take for granted like showering and eating. Sometimes it's more complex to not being able to work to bring in money to contribute. It's very easy for the person to think of themselves as a burden. They want to be able to do more to help out, but their disease gets in the way of what they used to be able to do very easily.
Making sense of things
You will never know why things happen the way they do. You just need to have faith that everything that happens, happens exactly the way it should. It's important to find the brighter side to illness. Even though we can't always help ourselves, maybe our illness will help someone else. Maybe it'll open someone else's eyes to how precious life is, because it sure did make you see life differently. Maybe it'll cause someone to not judge others so quickly, because you sure don't anymore. Maybe your case will lead to saving someone else's life. Or maybe it was you who needed saving & this illness is your transformation. You never know what the reason is, but i promise there is one. Whatever happened was meant to happen.
Accepting your new life can be challenging. All of your plans, dreams and goals were based on your old self, but now you have a new one and you need to find a way to still do those things, just differently. You shouldn't give up everything you wanted because something happened to you. Use it as your driving force to achieve it even more. It won't be the same life it was before because it'll be even better. Life may not have gone the way you wanted, but that's okay. The sooner you realize that, the happier you'll be in your new life.
Some people just won't understand
Hopefully it's no one in your immediate circle, but there WILL be people who just don't get it and will never get it no matter how many times you try to explain it to them. Sometimes you don't get it until it happens to you. You have to learn how to brush it off somehow. Try to take comfort in people who do understand. Find a support group or online community who knows what challenges you're facing every day.