Medication Induced Depression

(I'm too tired to come up with a pithy title) 

Uh oh. The Lamotragine that I’ve been taking for seizures has had some MAJOR side effects. This is the first time ever that a “Black Box Warning” has hit me. And it hit me HARD. Hard is actually an understatement. It’s awful. As soon as I hit the maximum dose I became so depressed I was suicidal. It slowly creeped up as my dose increase. But it took me a while to connect the dots. Because at the same time I was also instructed to get off of Amantadine.

Amantadine has been a vital medication. It’s used off label for Parkinsons. But for me it’s very helpful for muscle pain and twitches/spasms. So being told to stop taking it has made me incredibly nervous. And for good reason. Exactly what I was concerned about happened. Though I was told that taking it would increase my risk for seizures. However, I’m at the point now that I really don’t care.

 My side effects from the Lamotragine have been:

• Horrible depression
• Urinary retention
• Headaches
• Insomnia 

After I felt like I should go to the hospital for suicidal thoughts I messaged my epilepsy neurologist. They said if it happens again to go straight to the hospital. They also decreased my dose from 300mg to 250. I’m going to very gradually go off of it. They can just put me on something else. It will take about a month for me to complete the decrease.

I am eager to say the least. I wish I could just stop taking it. But that is dangerous and can bring on seizures.

My depression used to be a zero. I would say that I had no depression at all (despite my challenges.) This week it was a 7-9 out of 10. Incredibly high. And I realized something. When I’m depressed I eat and eat. I give in to my food cravings 100%. And like the depression, at first I wasn’t connecting the two. Only the other day did I think “Maybe this is from depression?” That was after I consumed an entire 10 pack of Ding Dongs. By the way… they no longer wrap them in foil which is BULLSHIT. It also shows how long its been since I had one.

Pizza, ding dongs, crackers and cheese, peanut butter and chocolate ice cream, doughnuts. All have found their way into my house and into my mouth. It feels like one of those old “before the picture starts visit our snack bar” cartoons where all the food is animated and I just sit on the couch as they march right into my mouth. Jesus.

But I told my mom today. “I’m just going through so much right now that I’m giving myself a break.” I’m still weighing myself and logging it. I’m just not being hard on myself about that number. I know it will go up. Even if I’ve been gardening, swimming and working like a fiend on my house. That’s something else I do if I’m feeling emotional or not mentally well. I work on re-arranging my house and trying to “make it better.”

I’m back on a singly dose of my Amantadine. Next week I can increase it to two in the morning which was where I was at. Hopefully that will help my pain and muscle problems. I’m terrified that the depression will linger until I’m fully off the Lamotragine. Or even after. Fuck fuck fuck.

 

 

Checking In With Myself

2025 Has been as difficult for me as 2020 emotionally. This time in 2020 the COVID pandemic was really serious. Things were shutting down and people were told to stay at home unless you really had to go out. Now in 2025 everything is a big scary mess politically.

Undocumented people are hiding out while ICE is on the hunt to deport them. Or worse, hold them in Guantanamo prison. Women, people of color, disabled people, LGBT people are all targets by politicians. Thousands and thousands of important government workers have lost their jobs because of the whim of mad men with power. Much needed services are being cut right and left. 

I feel anxious and depressed. I haven't been sleeping well and I feel exhausted pretty constantly.

Personally these changes are affecting me very little. Like the lock down of 2020. But since I'm a caring person and I see the impact it has on people I love (and people I don't know,) it is affecting me in a major way.

I have to remind myself of all the good things there are constantly. Like...

• My family
• My puppies
• The support group I just started for women
• My beautiful house
• My many friends
• My lovely town
• Nature
• That I can walk a block without my chair still
• Art and cultural experiences still happening
• Good TV & movies
• My soft bed to rest on any time I need it (which is often)
• Pottery

It's already very much springtime here. That also helps me focus on good things. It's a "hopeful" time in the season wheel. 

Reprieve

After my recent night of desperation I put into action some things that have been helping out my incredible pain.

1) Made a tote bag full of all my resources. Creams, gel, pills, patches. All the stuff I have for pain. Now instead of just laying in bed in pain I can grab that bag, go into the bathroom and choose something to try and relieve it.

2) I found my "stash." Back in 2020 I tried some CBD/THC products to help my pain and migraines. It worked, but I didn't like the side effects. I kept most of it and found that the high CBD low THC gummies did help my pain quite a bit. 

3) Tried something new! I found some new cream that so far helps better than any other topical product I've tried so far. All CBD. No THC.

I'm also being very watchful of my activity levels and how I use my leg. I'm trying to really be vigilant to give everything a chance to heal up. So far it still hurts, but not at all like it was. I'll take it!

What Keeps Me Going

 

Did you know that the suicide rate of people with migraines is twice as high as the typical population? And that people with chronic migraines (what I have) are 42.9% more likely to kill themselves than people with episodic migraines? As someone who lives with never ending migraines these numbers don't surprise me. (read the full study here)

I have wished for death before and I'm sure it will come up again. But I would never ever act on it. Despite the constant pain, vertigo, and insane impact on me. And it is INSANE! There is no better word. Despite all of that, what keeps me going? What keeps me here?

Of course Love is #1. Especially love for my wonderful, amazing, fantastic family. They keep me laughing, keep me positive and try to help me as much as they can. I also think they'd all be screwed without me.

Shockingly my doctors would have to be #2. I know many people don't have that luxury of a fantastic medical team. Although they take a lot of time and effort on my end, they also provide me with a lot of relief and answers. I wouldn't have known that I was suffering major migraines without the Neurologist and ENT stepping in and educating me. I also would never have known to try Botox, the one thing that has consistently helped me.

Here are a few other things that not only keep me from killing myself, but make me smile and help me to thrive.

My beautiful garden that I created with my husband.

Silly, fun games that we play together.

We used to LOVE playing all kinds of games and puzzles, but when my Botox has worn off and I'm feeling "like garbage" (like now), these little iPhone games are about all I can manage. I love that we do them together.

Getting out of the house and into nature.

Any kind of nature! I can't drive, but I can wheel my chair around my small town. I can also go to and from my Mama's home. It's great to get out on my own and it gives me a feeling of autonomy, which is vital.

It's important for me to feel in charge of my body as much as I can. Maybe that's why I'm always cutting and coloring my hair.

All of these and millions of other tiny things are why I'm here today. Still fighting through the quicksand of symptoms. Of course a big sleep and some movies in bed now and again never hurt either.

And of course the...

Disability 6 months in

You'd think after being off of work for six months that I'd be more adjusted and used to it then I am. But I'm not. I was recently approved to take my licensure exam, which when I pass, will be the pinnacle of what I went to school for. That's IF I can pass. Even if I can't actually work in this field again it's important to me personally to achieve that goal.

My symptoms are still worsening and my muscle weakness seems to be getting a little worse. It's mostly that constant pain that's worse. I always feel like I've been stretched on a medieval torture rack. 

Then there's the bad dreams. I have a recurring dream where I'm starting off walking fine, but then the pain sets in and I can no longer walk. I'm stranded somewhere with something I'm trying to do usually on my belly crawling. It's really stressful.

I also still think about my clients and my job that I had to leave behind. I don't feel like I have a "new life" or any kind of a "new normal" at all. Especially not with the world in chaos right now and trying to keep healthy. I feel stressed, upset and just heavy. Emotionally and physically. 

So rather than moan any more here's what I'm doing right now that helps me.

Ok, so that was going to be it... followed by another list of happy helpful things. But then I realized:
1) I'm not "moaning" I'm sharing important feelings.
2) It's my blog and I can write about whatever the f*@& I feel like.
3) I have no idea where this pressure to "not complain" on my own blog is coming from, but it's worth looking into.
4) I have a right to my own feelings.
5) Why am I underplaying things that are a big deal? Trying to brush them off? For me? For others? It IS a big deal and that's ok.
6) Where the F*$% did that come from anyway?
7) Yes I am disabled. Yes it sucks. It's ok that for now there's a period at the end of that statement.
8) Everything I do hurts me. It's just a matter of how much and is it worth it. I know I'm not alone in that, but sometimes it feels like I am.
9) Being me right now is exhausting. 
10) I hope my doctor gets back to me so we can try and find something else that will help.

(I'm not in the mood for pictures today, and that's ok too.)

Painsomnia

Painsomnia is when you're in too much pain to sleep. I've had a nasty head cold lately (and a beauty of a cold sore) and when I'm sick my body pain level usually skyrockets. The last few nights I've been in bed trying everything I can to get to sleep. Night time cold medicine, Ibuprofen PM... nothing seems to help.

When my pain gets this bad I usually just try and distract myself into a state of ultra sleepiness by messing around on my iPhone. Pinterest is my go-to. I found myself doing some last minute Christmas shopping last night. "Design Home" is my favorite app. I've played it for years. I find it relaxing and a fun way to unwind. 

If I'm getting busy brain or feeling worried looking at animal "pins" or humor is helpful. Baby animals cure everything. 

My sweet girl is also helpful. 

I can't force sleep. She will come when she's ready. Bottom line is I'm lucky to not have to get up and go to work on only a few hours sleep. It really screws me up. If I'm up late with painsomnia I feel super dizzy and foggy headed the next day. I will also likely have a migraine. 

I'm lucky not to have this happen every night, but it does seem to happen back to back nights when it does come up. Being sick with a bug is almost always a guarantee that it will happen. It also seriously affects my mood. Bah Humbug!

It's ok to struggle

This chronic illness life is such a roller coaster ride. Not just for me, but for my husband too. One moment I'll feel I've hit homeostasis and I can work with all these symptoms and challenges. Then the next something new will come along, or something will get worse and I'm tossed into a sea of frustration once again. 

A lot of the time I really do feel like two people. One healthy and able bodied and the other sick, chronically ill and immobile. More and more I feel that one healthy side of me literally dying. My husband jokingly tells me "Don't you die on me"! And I always promise to "do my best". But it does feel like a long slow death of the "healthy me".

Turning into a mermaid

To me the "healthy me" is the one who didn't need to nap every single day, who didn't have to think about the accessibility of a place before I went somewhere. Who didn't have to measure what I could do during the day in spoons (energy) and not do a lot of what I really want to because I just can't. The healthy me could eat whatever, go for a walk, hike, run, take a bath, have an orgasm and other things that I just can't do now. She's dying and it feels like a serious loss.

Sometimes that loss feels like my heart will break and I will drown in my disability. Some nights it feels like I'll just stop breathing or never be able to walk again. Sometimes I think of taking a lot of pills or drinking a lot of booze to just get the pain to stop for a little while. But I never make those choices.

Instead I choose continue to fight and swim against this tide pulling me down. I come up for air, and gasp before going down again. Sometimes I get hopeful at a doctors visit or with a new medication and I feel like I have some new floaties to help keep me above water. 

What really saves me and always has is knowing my husband is right there with me. Holding me up. Keeping my head above water so I can continue to struggle and try to learn to go along with my symptoms. Rest, recover, heal, eat well, pull back, reach out. All of these things help. But that doesn't mean they're easy. 

SHE also helps a lot. "My little nap buddy". Pulling back on work has also been useful. This week I also decided to apply for State Disability. Despite pulling back on my work week and working from home one day a week I don't want to come to a point where I wake up one day and just can't do it at all. I'm trying to be ahead of these symptoms for once and not go under the next time a big wave hits. 

Letting go

Part of adjusting to life with a disability is letting go of what you can no longer do. Mourning those things that your body just can't do anymore. For example, I can't do the kind of travel that my husband and I used to enjoy. No more hiking down cobble stairs into a secret well (like is pictured here in Sintra, Portugal). 

Yesterday I took a short bike ride to see how my body did. It has been a very long time since I tried to ride. I love my bike and it used to make me very happy. As I had feared my muscles did not like my bike. It's just too hard now to get it to go where I want and to balance. Time to mourn not being able to use my bike anymore and let it go.

My awesome bike and fantastic helmet two years ago.

A funny thing happened though when I got off my bike and in my wheelchair yesterday. I felt relief. I also had that excitement feeling I used to get from my bike, now just from my wheelchair. Like my bike it's a tool to take me around. I also get to feel the wind on my face, just like on my bike. But unlike my bike it's a tool that I CAN use. That's a good feeling. I'll be selling my bike and hopefully the next owner loves it as much as I did. 

But having a permanent disability doesn't mean I still can't do fun things. In fact there are loads of amazing things that I CAN still do!

I can eat fresh berries in the summertime!

I can still snorkel. Which is a life-changing experience. 

I can still swim! Or float. Depending on my energy level. Water is still my friend.

I can still travel and have adventures with my husband.
They're just different kinds of adventure now. 

I can still enjoy the beauty of nature.

I'm very lucky!

Depression and Chronic Illness - One Year Later

Last April I shared some tips on ways that I help myself with Chronic Illness and Depression. But sometimes that's just not enough. Last July I had a few weeks where I just couldn't stop crying. I was about to start a new job that wanted me to work 40 hours a week and was struggling with illnesses that then still had no name (now I know it was a brain tumor, Metabolic Myopathy and Rheumatoid Arthritis.) I talked with my doctor and he put me on Cymbalta. That helped my mild depression and my joint pain. Things were good. 

Fast forward to today and I'm feeling the fog of depression again. I'm feeling numb to things I should feel engaged in, everything feels hard like I'm running through molasses (and I'm not talking physically, but mentally and emotionally.) I feel sad and things at work that are usually easy are becoming hard. I sometimes think about being dead and how lovely it would be (but not to worry, I'm not suicidal. There's a difference.) I feel overwhelmed and exhausted mentally. 

I think these are very common feelings when one is struggling with a medical condition or chronic illness. I once asked a friend with a spinal cord injury how she keeps so positive and she said "I don't allow myself to think any other way." So Cognitive Behavioral Therapy is what works for her. For me that can only work so long or so well.

So I messaged my doctor yesterday about increasing my Cymbalta. He asked my symptoms and I shared with him and now he wants to see me today to talk in person. I'm ok with that. I'm suspecting that instead of increasing my Cymbalta he'll want to put me on something else. Any help I can get will be appreciated.

But why not try therapy first? Well, I've had a lot of therapy in the past and I'm actually really good at using my non-medical tools. But I think there comes a time when therapy just isn't enough. You need help and you need it fast. 

On the non-medical mental health front I am trying out a support group on Saturday May 18th in my area with the Muscular Dystrophy Association. It's a "Mixed Diagnosis Group." So it's for adults with all forms of MD to come and talk. Partners are also welcome so my amazing husband will be coming with me. You can never have too much help or too many tools.

Alone Together

Back in May I did a post where I shared a picture I had done in my journal. It encapsulated how I was feeling at the time. I said "I bet a lot of people feel like this, like they just slipped below the surface. Just dipped out of range. Other healthy people live on one level while you're just out of reach. You can come up to their level, but it's a lot of work... Then you dip down again"

I've been thinking about that picture ever since and noticed a few things.

1. I noticed that I didn't use the word "I" once. I was speaking in a generalized way about something I was personally feeling. 
2. I was feeling like it's me vs. everyone else who must be healthier than I was feeling at the time. That's a huge assumption.

Today I did another picture on the same theme. I said "In reality it's more like this... Everyone struggling with their own private challenges."

Again, I can't help but notice I didn't use the word "I." Although this little doodle might be more culturally accurate I think I drifted even further away from myself. I'm nowhere here. Just anonymous people trapped by their own challenges (despite the ladders everywhere.) 

Art is a useful language when words fail. Even though I was attempting to do a new drawing showing a more communal, mutual struggle I think it looks like I'm still feeling withdrawn and isolated. 

Noticing these things is very important for me. I feel like it means I need to connect with people more. It's not easy to do when I feel so drained being social and I don't have easy answers when people ask how I'm doing and what's going on with my health. The combination just makes me want to stay home and take a nap. But I know that's not healthy for me.

I made a new friend at aqua aerobics and we're having coffee Friday. I also e-mailed a friend this morning suggesting a few dates for lunch. But I notice I've been really struggling with my mood lately. Nothing about this is easy and I'm just doing the best that I can. I'm trying to have some kindness with myself and just ride these waves of emotion as they come.

Perspective

Life will always have its challenges. When they come along, regardless what they are, it's easy to let yourself get sucked in and for that challenge to become your life. This is most true with physical or health challenges. I'm fortunate to have friends who have much more serious challenges than I do. MS, breast cancer, spinal cord injury paralysis... Personally I find it difficult to balance noticing that I don't have as big a serious challenge as other people, while still respecting that I do still have struggles.

Today is a reminder to myself. A re-set on my perspective and a list of things that help me remember all the many many many pluses and blessings in my life.

#1) I worked my butt off over the last 10 years and now have 3 college degrees. I was the first person in my family to ever graduate from college (and I did it three times.) That's a massive accomplishment.

 This picture of my son when he was little always inspires me. 

He was scared of heights, but determined to jump off the high dive at our local community pool. He did it! His bravery continues to this day. Never let fear stop you.

#2) I've been to some amazing, inspiring places. Both here and around the world. Traveling the world has helped me remember what's most important in life. Kindness, openness, friends (and food!)

My husband and I traveling 2 years ago.

#3) The belief that I can do anything I want, I just have to want it bad enough. From graduation to getting a new job to being in a career field that I love. All of these have been incredibly challenging. But I did it! 

#4) Humor is everything. It is everywhere and easy to find. Enjoy it. Let it heal you.

My "study Jaws" got me through some stressful times in school

#5) I'm lucky. I have plenty to eat, a safe place to live and people who love me. I love the town I live in and am spoiled by my partner. He works very hard to give me a wonderful life. I'm very grateful for that. We're a good team.

Spoiled me with a graduation gift from my husband.

#6) I have a lot of people in my life who love me. Husband, son, dogs, family, friends... even my in-laws care! Remembering my huge team of cheerleaders (even when they aren't there all the time) is very helpful in keeping my perspective. 

Family

#7) Remembering what I CAN do! I can still walk, run (a bit), play, laugh, sing, yell, scream, eat, bathe, swim... and much much more. Instead of letting what I can't do (or what's hard) swallow my motivation I try and focus on what I can do, and do even more of it. 

Come on feet! Let's go!

#8) That I live my values. This is a fun activity called a "Value Card Sort." You go through 100 cards picking what words most reflect your values. Even when I'm feeling awful my values help keep me balanced. (Just click on the picture or link above if you want to print it out and do it yourself.)

I could honestly keep going, but I think you get the idea. Besides. I'm going to be late for my Zumba class at the gym. This time I'll keep it slower and I have my knee brace on for protection. I don't want another 4 day recovery process! But I'm determined to keep moving and trying.

Depression and Chronic Illness

I don't like the term "Big Black Dog" for depression. Dogs are loyal and funny and awesome. All they want is tummy rubs and bacon. Depression wants your joy, your playfulness and your hope. Not the same thing at all.

I've been struggling with depression the last few days. It all just feels like a lot going on all at once. Losing my job and starting Plaquenil (after the RA diagnosis) has just left me worn out. It's not just being laid off either, but the entire agency I work at is shutting down. So there's been a lot of miscommunication and uncertainty creating a ton of extra stress. And then there's trying to do what's best for my clients and make their transition as easy as I can. No wonder I woke up with a major flair the other day.

Despite feeling completely overwhelmed, depressed, angry, sad, upset and even hopeless at times, there are a few things that help me.

#1) HUMOR!

My favorite shark "Bruce" taking a night time sip from MY Disney Frozen cup.

Yeah, that's right. I own a stuffed shark AND a Disney cup.

You should try it. It helps. 

Humor is a HUGE part of my relationship with both my husband and my son. We make up funny songs, send each other silly memes and joke around a lot. Depression hates laughter. So watching a funny movie or TV show, or just spending time being child-like is incredibly helpful for me when I feel depressed and hopeless.

#2) Writing or Drawing about my feelings

My journal is a great place to get out feelings like these.

Some days are worse than others.
Monday was a bad day.

Sometimes I don't want to share my feelings with another person. But it does feel good for me to get them out. My journal is an important part of doing that for me. In it I can be funny, encouraging and hopeful. But I can also vent some darker thoughts as well.

#3) Being pro-active

My new jammie rack

A helpful way that I deal with any new situation, especially a stressful one (or one that can feel overwhelming) is by taking action. As I adjust to what it means to have RA and peripheral neuropathy I learn what's good and helpful for my body and what's hard and damaging. 

For example, digging through the freezer with bare hands? Bad. Holding cold things. Bad. Trying to pry open the drawer of our 1950's dresser every night to get my pajamas out? Bad. Going barefoot all the time? Bad.

Soooo... last night I took everything out of my "super hard to open" dresser and hung them on this wall hook behind the door instead. Now everything's eye level and easy to get to (and put away.) And my husband gained another drawer. Win-win. And since this is behind our door and we keep the door open almost all the time, you don't even see it. Problem solving at its finest!

This gives me a sense of accomplishment and taking care of myself, both of which Depression hates. Almost as much as it hates a sparkly Disney cup.