Monday, July 17, 2017

Lessons from my Chronic Illness


Living with a chronic illness means your life might not be how you thought it would, maybe not even how you want it to be.  It takes time to adjust but here are some of the things my chronic illnesses have taught me.

1. Doing nothing is a perfectly fine way to spend your time.

I always used to feel like I had to something "productive" every day, even when I was sick and it always just ended with me getting worn out and, consequently, even sicker.  I have learned that sometimes the best thing I can do for myself is rest and relax for a day, or even a week, instead of overdoing it.

2. You have to take care of yourself before you can take care of others.

I love to help people.  I want to do everything I can do in the world to make it a better place for everyone to live in.  Even without a chronic illness that is too much work for one person.  I have learned that I can't help every single cause in the world and that I can't help any cause if I'm too sick or tired.  I take care of myself first and then use extra energy and time to help others with chronic illness and/or mental health issues through my handmade jewelry.

3. Self care is wonderful for your mental health.

When my depression starts creeping in, despite my anti-depressant medication, I make sure to do some small act of self care.  Sometimes I even have to force myself to do it, or have Jordan get me to do it because I just don't want to, but after I do I feel a little bit better.  If I can notice as soon as the depression starts creeping in forcible self care helps me chase it off instead of sinking into the pit of despair.  If my depression goes too long unaddressed I'll feel like I don't even deserve to be happy or feel better so it's way harder to make myself do things to make myself feel better.

4.  Make the most of each good day and they will help you make it through the bad days.

The good days help the bad days more bearable.  I look for the good in every day because there is some good in every day, no matter how sick or tired you get.

5. I am so much stronger than I ever realized.

I have been through so much and I'm still here.  I have been through days, months, years that healthy people could never dream of.  I keep going because it's that or sink into depression and then still be sick anyway but feeling even worse because of depression.  So I make the best of each day and remind myself of all of the things I've made it through in the past.

6. There are going to be hard times but I'm not going through this alone.

The chronically ill community on Twitter and on Instagram have helped me through so much.  I feel so much support from everyone who is going through their own stuff and I hope I can help them through their hard days too.  We are stronger together.  Chronic illness is not a competition.  Everyone's pain is valid because they feel it.

7.
To accept my life with its ups and downs without feeling like I got ripped off or it's not fair.

I can still have a good life, and a happy life, even though I have a chronic illness.  Chronic illness is so tough but I wouldn't trade my life for one without it.  My chronic illness has made me the person I am today and I don't want to know who I would have been without it.


Sunday, July 9, 2017

I Don't Have FND?

So on June 26 this happened:



And now I'm thinking that I definitely don't have FND, functional neurological disorder for those of you who haven't seen my last post.  Basically FND is caused by stress and your symptoms get worse when you're more stressed.  I was extra stressed on the day that I started being able to walk again and I've been able to walk ever since.  I definitely overdid it on the day I started being able to walk again, but I don't regret it.  My legs were so sore the day after that.  I've been walking just a little bit each day and using my wheelchair the rest of the time so my leg muscles can get built up slowly.

As far as what I have that makes my legs stop working sometimes?  I don't know for sure but it seems like gluten ataxia could be the culprit.  I thought that I just discovered gluten ataxia on June 26 of this year but a look back at my Facebook page showed me that I learned about it last year and then I completely forgot, because brain fog.  As far as brain fog is concerned that lifted too when I started being able to walk again.  If you've seen those Claritin clear commercials it's kind of like that.  The world was just in a fog all of the days that I couldn't walk and then on the worst brain fog days it was more like being underwater.  So now I am relearning how to walk and trying to get my stomach nonsense figured out.  I have a gastric emptying test on Friday and have been eating mostly only liquid foods for a month because solid foods haven't been digesting.

Sunday, May 14, 2017

Processing my New Diagnosis

I have a diagnosis: Functional neurological disorder

"Functional neurological disorder (FND) is a condition in which patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts. The brain of a patient with Functional Neurological Disorder is structurally normal, but functions incorrectly." - Wikipedia

Basically what's happening, as the neurologist explained it, is my brain stopped sending messages to my legs for some reason. She said it's like if your computer freezes and you have to reboot it. I will be going through a process of both cognitive behavioral therapy and physical therapy to identify stress triggers and learn how to respond to them and also to learn how to trick my legs into doing what I want them to. It may take a very very long time but it is possible for me to get better. I am definitely willing to put in the work required.

I've had this for at least 6 years so it will take a long time to get better, maybe even years.  And it's weird to me because I should be happy that I can get better, and I am, but at the same time I had accepted the fact that I may never get better and I even believed that I would never get better but I was okay with that.  And I was used to it.  I connected with other people like me who have illnesses that there is no cure for.  And we supported each other and helped each other through the tough times.  And I still have a chronic illness but I kind of feel guilty because I can get better but so many of my friends can't.  It's almost like I don't know who I am anymore again.  I have gotten used to being sick all of the time and as weird as it sounds a future where I'm healthy seems a little bit scary.  I guess that's my anxiety and my difficulty responding to change.  I think that what scares me more is that if I don't get healthy then it's kind of my fault.  I'm honestly still processing everything and there are a lot of emotions involved and I don't understand all of them.

I am very grateful for all of the people who support me no matter what happens, for the community of chronically ill people who include me despite the specifics of my illness.  One of my first feelings was that I don't know where I fit in anymore but they assured me that I fit in there no matter what happens.  My immediate future holds a lot of pain, ups and downs, but also hope.  And all of the people who are happy with me during my ups and encourage me during my downs will help me get through this.

Monday, March 6, 2017

Easy Ways to Practice Self Care

If you've been on the internet and have a chronic illness or mental health difficulties (or even if you don't) you've probably seen people talk about self care.  There are all these lists of things you can do to take care of yourself and help yourself fell better over time.  And they're good suggestions and they do work, but here's the big issue: you have to be motivated enough to do the things.  When you have a chronic illness and you're having a low energy day or when you have mental health issues and you're lacking motivation it's really hard to actually do those things on the lists.  Real life example: yesterday my depression was pretty bad and my anxiety was really bad.  In my head I knew that self care would help me but I also lacked the motivation to do any of those things, such as make myself a cup of tea, do a face mask, turn on my favorite music, so I didn't do any of it.  The other huge problem is that when you're really depressed you might feel like you don't actually deserve to feel better so you just won't do anything that might help you feel better.  For these situations I have come up with a sort of self care cheat sheet.  This is a list of the easiest possible things I could think of that can help you feel just a little bit better.  It's great for low-energy days or days where you're lacking motivation.  I am personally going to try to do at least one of these things every day.  Some days you might be able to do every single one since they're things that don't require a lot of energy or motivation, and none of them cost any money!  So here it is, my list of small ways to feel a little bit better every day:

Drink water, go outside if even for just a minute (if you can't bring yourself to go outside, look out a window at outside for even just a minute), do something nice for someone else (even if it's just sharing someone's post online with your friends), take deep breaths when it gets difficult, rest when you need to. If you didn't do so well today try again tomorrow. Remember you're not alone.