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.