Category: anxiety

May: The Ultimate Awareness Month

Posted on by Grayson
May 1st marks the start of an awareness month practically tailor made for me – asthma & allergies, arthritis, mental health, and fibromyalgia.
My asthma is, honestly, getting worse. When I eat or laugh or sneeze, I have a hard time getting my breath back to normal… which is probably a sign that I need to use my inhaler more. My allergies always pick up this time of year, though tend to affect my asthma more than causing problems on their own.
My arthritis is steady. I’ve come a long way in two years, thanks to my daily injection and other medications. When the weather is rainy and humidity is high, though, I’m reminded of my limitations – especially at night, when pain relief just won’t come. My hands, neck, hips, and knees are furious.
Mentally, I’m in a good place. Depression and anxiety are staying at bay for the most part, thanks to all the things I’m doing. My PTSD is another story, but that’s alright. With April being my birthday month and May being the month I cut contact with Mother (and having Mother’s Day in it), I know this won’t be an easy time of year.
My fibromyalgia is doing okay right now. I have had fewer skin-aggravating symptoms like allodynia, which is that thing when normal sensations like clothing on your skin or holding hands can feel excruciatingly painful. Today, that’s a thing that’s started and is spreading. I’ll push through cause I have some errands to run, but I’ll be glad when I’m home and can get naked as quickly as possible. I wanted to shower today, but I don’t know that I’ll be able to – the water feels like daggers on allodynia-affected skin.
I always feel conflicted when people say things like “don’t let your disease define you.” My conditions all do – they’ve defined my life from a very young age. They’ve also given me a level of appreciation and compassion that isn’t always a thing for abled people. I’ve gotten to do amazing things, meet the best people, and enact some real change – things that I don’t know I’d be interested in if I was okay.

 

Post-injection life and therapy

Posted on by Grayson

My ortho told me not to get cocky. I’m really trying not to get cocky. I know that the kenalog takes 3-5 days to take full effect… but it also doesn’t kill me to go up the stairs anymore.

Something I’ve more or less dealt with my entire life that just got worse recently isn’t a thing at the moment.

I seriously don’t know how to handle this.

Don’t get me wrong – I was sore after the anesthesia wore off after the injection. I was sore yesterday morning (it was also snowing so maybe that?). Today I feel a lot better.

Ironically for just having gotten steroids injected, I’m really tired today.

Yesterday I started therapy again. We agreed that I need to learn some of the more basic social skills, namely how to set different kinds of boundaries. We also agreed that it would be beneficial for me to figure out what types of relationships I want with those in my life and talk with the people about them. I don’t know how real families work, so talking with my dad and his family and figuring out what we want our interactions to be would be good. I also need to process my emotions related to various events in my childhood and this situation with my mother who still is causing problems.

The nice thing is that my antidepressants are working well. As helpful as I know medicine is, there is still a part of me that was concerned to go on them at all. Growing up in a household that loved learning about medical care but thought it wasn’t okay to use it can be very confusing.

I’m spending more time with friends and family lately. Having my own car is helping with that for sure, but I think I’m also allowing myself to finally really be my own person. I also am trying to make up for some lost time… I feel as though I’ve needed so much more from my friends in the last year than I’ve given, though I know a lot of my friends don’t agree. Maybe it’s a little guilt over needing so much with the wedding.

These are my people!

My theme this month is all about healing, and I think I’m off to a great start!

 

Antidepressant update: day five

Posted on by Grayson

When this posts, I’ll be freaking out in a surgeon’s office over the whole torn labrum issue… so let’s talk about happy things!

I started my antidepressant Friday following a doctor appointment on Thursday… in the middle of having food poisoning, but no biggie, right?

As much as I felt awful from that all weekend, I noticed that I’ve laughed more – and not just more, but more deeply. I’ve felt more in the moment and my brain has been able to function quick enough to not only get T’s punny jokes right away but to also make my own.

Seriously, so nice.

I also slept in my bed for the first time in a WEEK Sunday night. My hip is a little less happy today because of it, but it was so worth it.

Playing with the guinea pigs was easier and I got quite a bit done because I had motivation. Part of that was likely due to the fact that I’ve eaten more than two bananas now that I’m recovering.

T and I also are consolidating finances so we can look at getting a house next year-ish. I was actually surprised what a good position we were in to get everything moved around the right way to pay off. It’s pretty awesome… plus now I can continue my HGTV obsession because it’ll mean something in a while.

I do still feel like I’m not up to speed at work.

But I’m being challenged in a great way and I can handle that. It just means I need to work a little harder at this, and with the mental fog lifted a little bit, I think that’s doable. Plus I’m working on some amazing projects and helping to keep patients more at the center of things which I LOVE.

For now, I’m off to be more anxious about my surgery consult. See ya on the flipside!

Mental Health Ableism: what our support groups are getting wrong

Posted on by Grayson
I need to rant a little bit about the ableism present against mental illnesses… mostly because holding in my frustrations about it worsens my own mental health issues, but also because it’s not talked about.
First, some stats…

In January, I was poking around in EPIC’s MyChart, an EMR system, to try to find information on both my MRI results (because waiting a week was nerve wracking) and what exactly my former rheumatologist was treating me for… Turns out NOT SJIA, but polyarticular JIA. Frustrations abound.

But I digress.

I found an after visit summary from my therapist I was seeing a few years ago starting before Laura passed away. He was helpful in dealing with the grief from her loss as well as the issues I had with my family situation, but wasn’t necessarily as helpful for other issues. I knew that I had been dealing with depression and anxiety, but he put down two diagnoses that I hadn’t seen for those – Generalized Anxiety Disorder (GAD) and moderate depression.

It would’ve been nice to know what was going on with me the last couple of years before last month!

I had a lot of life changes in the last year, so dealing with both was very difficult for me. Wanting everything with the wedding, with my family issues, etc, to go right brought about a lot of anxiety. I’m go grateful for how wonderful that day turned out to be. I’m just floored at how much laughter, fun, and love there was.

I met my dad and his family, which was awesome but a little scary. I’ll admit that. There are no words to describe it. My sister moved out to California and then discovered she was pregnant again. T and I moved and I changed jobs as well as having worse health issues. We adopted three adorable guinea piggies. T’s therapist retired, who has been a huge help to us both. He’s known T a few months longer than I have, and so he’s seen our whole relationship. I think around October I was doing really well, but when my hip issues started in December things went downhill again.

Me? Maybe

I have noticed with that change in my mental health how differently I’m approached by others in the chronic illness world. When I was doing well and putting more inspirational things out there, I was getting more feedback – mostly positive, but still. Now, when I’m a little more in need of that support, it seems that others aren’t always as willing to give it. People think I’m being extremely negative all the time by discussing what’s going on with me, my fears, and my anxieties. As an optimist at heart, that bugs me.

We all handle our physical illnesses differently, just as we do with our mental health struggles. Mental health is paramount to physical health and vice versa, which is a huge part of why those with issues on one side often end up with issues on the other. There just seems to be a huge disconnect in the chronic illness world between those who discuss one or the other.

A related issue seems to be the lack of support if you don’t fit one mold. A lot of that depends on those you know or what subcategory of illnesses you have, but it’s still an issue. I know some people who have been treated poorly because they’re able to do more physically, but I’ve also seen that go the other way. Right now being laid up, I see it a lot more.

Being MIA from being active is driving me nuts

In line with that, there are those who believe that if you’re positive you’ll do better. There are studies that go along with that, but that also state not to deny your emotions… Personally, if I hold emotions in, they build until I have a major mental health issue or flare up physically. I’m not the only one who knows/thinks that you have to give yourself permission to deal with your feelings.

There is a difference between encourage positivity and kind of pushing it on people, remarking things akin to “if you just focus on the good/light/etc, you’ll feel better.” That type of thinking is actually a form of victim blaming.

It’s not as easy as a choice

It’s so similar to when someone says “my uncle’s brother’s former roommate had that and he just started thinking happily and he’s fine now.” It really bothers me, especially always being someone people refer to as the ‘Pollyanna’ of our friend group or at work, etc.

I think we all know the problem with that type of thinking. It invalidates all the hard work we’ve done to try to get better. If someone suggests copper bracelets or what have you, they may want to truly find something to help you. That’s great and I love that there is support there, but it’s misguided and misdirected. Again, it invalidates your hard work, your feelings, etc, and you end up having to put on a happy/polite face so that people don’t get frustrated with your response.
Telling someone to ‘choose’ happiness invalidates the emotions they are going through. That’s not what we should be doing in the chronic illness community or as loving and compassionate people in general, not even close.
If you want to encourage others to be happy, that’s great! Encourage them to find things that make them happy, to try new hobbies they’ve wanted to get into, or to practice self care/love/compassion. Be there for them when they’re going through hard times. There is a difference between support and lecturing, and advice without the support is the latter.
If you want to encourage or coach someone, you have to acknowledge what they’re dealing with. You can’t simply say things like “Oh, it’s not that bad. You’ll be fine.” Invalidation does not work. Active listening, compassion, and empathy do.
I think it’s funny that these are things we want our doctors to do, and yet we as patients don’t do it to help each other!! We cannot honestly afford to be hypocritical when we’re trying to change the whole healthcare system!
I would love with all my heart to be ABLE to choose happiness over my depression and anxiety. I honestly would love nothing more than to be as calm in the face of adversity as my stepmom or handle frustrations as well as some of my other chronic illness friends. Believe me, I’m not choosing to feel the way that I do. I’m not choosing to lose sleep over not handling situations correctly or coming up with a great comment I should’ve made for a conversation I had with someone two years ago or to want to cry when I’m alone.
I’ll admit a lot of that is not helped by uncontrolled pain with this hip though oh my god. It keeps me up and my brain tries to keep me ‘entertained’ in the meantime.
Not being in a position to choose happiness, I ask that we stop acting like it’s always a choice. The idea of some methods of promoting positivity being akin to victim blaming isn’t going to be a popular one. Many people won’t see it that way, and that’s fine. I fully acknowledge that my ideas on this aren’t for everyone. I recognize that I’ve lived a very different life from many other people. I’ve been through all sorts of abuse and, honestly, could probably add a bit of PTSD to my mental illness repertoire. Not everyone deals with these issues, and some people deal with more.

Honestly I just really hope that this post gets people talking about mental health more than just stating that there is a problem with how we approach it as a society. We need to start asking how to treat others and ourselves with more compassion. I’ll start – Thursday at my appointment with my primary care doc, I’m going to ask about medications for depression. Things aren’t super horrible right now, but they’re not as good as they were… and being laid up and dealing with recovering from a surgery is going to make them worse. I’m going to take some proactive measures and see if I can’t get myself to a better place mentally with medications since I can’t balance it on my own with coping mechanisms and meditation. They both help tremendously, but not enough.

Have a cuppa!

If you’re looking for resources on self love/care/etc, wander up above to the resources page.

What do you think? Are you an optimist, realist or pessimist? Does thinking positively help you, or does it frustrate you when people suggest that as a solution? What’s your experience been like?

Perhaps more importantly, what are you going to do to start showing more compassion and empathy towards others?