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Well, so much for that

On Friday I gleefully posted about how the Blargh had hit me, but that I was doing really well emotionally and pretty well physically.

I never should have posted that.

You know why? The Universe was listening.

And do you know what the Universe gave me? An anxiety attack that led into a suicide spiral. That’s usually how these things go for me. I’ll break it down.

I get into a situation where I stop seeing possibility. I stop seeing opportunity for things to change. It can be for any number of factors, but generally involves: 1. My physical inabilities currently to work in a full-time environment; 2. That I live in the desert in the Middle East; and 3. Bills. Damn bills.

Money is usually the trigger that sends me straight into the darkest places I can go. See, I know what plans Mr. Lyndsy and I have. We want to buy a house in the US (we were going to do that this summer, but it’s been tabled for reasons that have nothing to do with me). We also want to save as much money as possible before going back because it’s highly unlikely that Mr. Lyndsy will make what he does here. We also have no idea what kind of condition I’ll be in.

So on Friday, the trifecta hit and my anxiety shot through the roof. I have a student loan I cannot get rid of no matter what I do. It’s $500 month. Most months, I barely make that. Which means that the other various bills I have – hospital bills from the little trip I took to the ER in February, credit card bills from business expenses (sadly, direct sales haven’t gone super well lately), and personal credit cards (which are my fault, some, and stupid shit), don’t have much money to fund them.

Then I have to ask. I hate asking, because it puts me into the expense column.

My brain starts scrambling to figure out what I might be able to do. Then I get caught up in the fact that my body is not so good to me all the time. I have constant fatigue from fibromyalgia. I have insomnia which I only overcome when I take one of my antidepressants. The problem with that antidepressant is that it knocks me WAY out. Even if I fall asleep around midnight, it’s not unheard of for me to sleep until noon. That would make getting to work on a bit challenging. If I try to get up before my body is ready, it won’t move and I end up falling back asleep. I’ve learned it’s better not to fight it.

The thing is that here I couldn’t have any of the accommodations that I would have in the US. They don’t have an ADA. If you can’t do exactly what they’re asking (and most jobs work 6 days/week) they have no reason to hire you because there are people lined up behind you to take the job.

“So Lyndsy, just move back to the US!” Ah, but you see, the US is a problem now – healthcare. It’s too up in the air to risk it. Mr. Lyndsy’s anticipated job doesn’t have healthcare. *I* would have to find a job with insurance (the exchange plans where we’d be aren’t the best) and be able to work and make enough money to cover it. Right now, I don’t see how that’s physically possible. Knowing that any protections I would (no lifetime caps, pre-existing care coverage) would either go away or become unaffordable freaks me out. I see a rheumatologist, endocrinologist, nephrologist, and a shrink (and you know how Republicans hate treating healthcare!). I take 7 medications per day, well, 8 right now, plus one more weekly. I don’t even want to think about what those would cost if I had to come up with the out of pocket funds.

Herein lies my problem. Whether I’m here or there, I’m kind of screwed. The only saving grace would be a successful SSDI claim, which is unlikely the first go through. They often take 2 years to fully litigate. What would I do in the meantime?

This is how I end up feeling trapped in a dark place I cannot get out of. Where I hear from a voice in the back of my head, “The best thing to do would be for you to kill yourself.” And it starts to sound downright LOGICAL.

YES! Kill myself! Then all of this doesn’t matter. I stop being a expense! I no longer have to worry!

Friday night was the closest I’d been in a long while. I mentally wrote my goodbye note to Mr. Lyndsy and my obituary. I thought about messages I’d like to send people. I don’t want anyone to feel bad. This is just my life and how it rolls.

After a while, it’s too much. Knowing now, after almost 3.5 years of constant pain, with other worsening attributes, that any kind of traditional work environment would be too much, is demoralizing. I feel guilty about spending money on fun things. Because if I spend money out of my accounts on anything fun, I’m going to have to ask for money from Mr. Lyndsy. But, if I try to not spend, I grow resentful. I hate losing my independence.

So here I am. I made it through Friday night. It’s just a one episode at at time kind of thing.

Stop telling us what to do

You care, I know you do. I appreciate that you care.

However, you need to find better ways to show how much you care. Telling me what to do, what I should eat, how I should move, etc. is not the best way to show me how much you care.

You think you’re helping. You’re not.

I’ve seen more medical professionals than I care to count. I have had to fight with them to even get diagnoses, to get treatment that would make me feel even a little bit better. I have spent countless hours researching my condition online, consulting with Dr. Google. Looking for alternative treatments, new things to try, talking to people who have fought this battle before me.

Chances are good that you aren’t a doctor or even have any medical training. You know someone who knows someone who has the same thing and some random root from Chile helped them. Or maybe they gave up all sugar and only eat broccoli and avocado now.

I’m glad that worked for some random person I’ll probably never meet. I love hearing when people who struggle like I do get better. No one should have to deal with the things I deal with. Chronic pain. Brain fog. Depression. Anxiety.

But, I need you to respect the fact that I’m on the path I’m on. You telling me over and over to stop eating sugar doesn’t add anything useful to my life. Instead, I feel like you think I don’t know how to take care of myself. Like I haven’t talked to the doctors. Haven’t researched. Haven’t tried to figure out what’s best for me. You don’t know what’s best for me. Stop acting like you do.

You also may be ignoring the fact that I could be going through a rough patch. One where I’m struggling to get up everyday, so we should just be glad I’m eating at all. You’re probably not with me 24/7, so there’s no way for you to know what I put into my body when you aren’t around. Don’t assume that what you see is my whole life.

Because the reality is that there are probably very few people, if any, who really get the full picture. Who see me when I struggle to wake up and get out of bed. Who see how I struggle to walk through a grocery store or how sometimes breathing is painful. Who know how many voices in my head tell me I’m a failure. That I should be doing more with my life than I am. Over and over I hear, “You’re not really sick. Get up. Get moving.”

Until you’ve actually trudged a mile in my shoes, or spent a whole day in bed because the pain is pretty much unbearable, please do not bestow your unwanted advice on me. For some of you, it’s a compulsion. You feel like you *have* to share with me because you know it will help. You won’t feel like you’ve done your part until you do.

Just stop. Ask me how I’m feeling. Ask me how you can help. Tell me something funny to get my mind off of whatever I’m going through.

If you can’t stop, you may soon find your way out of my life. I spend enough energy dealing with shit, I don’t need it from anyone else.

4

The Kid I Cannot Have

I recently decided that I do not want to have kids. I resent that I had to make that choice.

You may be wondering, “If she resents it, why did she make that choice?”

My 35th birthday is in a couple of weeks. The statistics about pregnancy after that age are readily available and definitely not positive.

But that’s not why I don’t want to do it.

Mr. Lyndsy has pretty great genes. He’s 35 and in good health. He broke a vertebra in his back and an old ankle injury gets him sometimes, but he spends his days in activities with kids who are twelve years old and does pretty well. He still plays sports. His father is in his 60s and still VERY active. He’s smart. He’s funny.

I’m smart. I’m funny. But that’s where the good stuff ends.

I was born with a bad back, or so said the neurosurgeon who fused my spine. Even now I still have back issues, just located in a different place. I have chronic pain in my foot from the nerve damage and tendon transfer.

I have Hashimoto’s which causes my body to ebb and flow through periods of almost manic energy and then into a state of fatigue. I’m lucky to have an endocrinologist now who was willing to treat it with medication, but it took going through three doctors before him.

Even with the Hashimoto’s treated, I have to contend with fibromyalgia. Random flares of body pain and bouts of fatigue so oppressive I don’t want to get out of bed. When you do finally get out of bed to do something, brain fog kicks in and you can’t remember why you up in the first place.

Of course, that’s not the only reason I don’t want to get out of bed some days. Depression and anxiety also like to jump into the fray, further knocking me down. The commercials that say depression has a physical component aren’t kidding. The body aches and fatigue are on top of feeling like your soul has done a round with Mike Tyson.

Diabetes can be a result of lifestyle choices. But sometimes, when your body is under attack from a bunch of other shit, diabetes gets you anyway.

For shits and giggles my kidneys leak protein. They aren’t supposed to. We do not yet know why it happens.

Perhaps my favorite is that I seem to be allergic to the sun. Prolonged sun exposure (as little as 30 minutes) results in a butterfly rash across my face and bumps down my arms and into my hands.

I have walked on the edge of the ultimate blackness. Been in that place where dying seemed like a much better idea than living. I managed to walk away from the desire, but my kid may not be so lucky. And it hurts because I know that all of my love wouldn’t be able to save him or her from that edge.

I don’t want that for my kid.

I had 15 doctor appointments in one month. I had blood draws for probably 40 lab tests. I spent a lot of time going to and from the hospital for those appointments. I have spent 9 nights in the hospital. The place where you’re supposed to get healthy, but health is impossible when you can’t sleep because someone is coming in every hour or so to make sure you’re okay.

I don’t want that for my kid.

There’s a long ass list of foods I don’t eat anymore because they upset my stomach. I can’t eat some of my favorite treats, unless I’m willing to risk an explosion of diarrhea at the worst possible time.

I don’t want that for my kid.

Standing, walking, and sitting cause pain. Running is out of the question. Sports don’t happen. Theme parks require sunscreen and a hat, and even then my face feels like it’s on fire and my arms look like something out of a sci-fi movie.

I don’t want that for my kid.

So I won’t have one.

I feel like I’m making the choice any good parent would make.

That doesn’t mean I like it.

I resent the hell out of it.

But it’s the choice I have to make. For my kid.

 

Wow, I have not been here for a while. I haven’t figured out what that says about what’s going on in my life right now. Either I’m busy and haven’t had time (seems not quite right) or I’m avoiding something (also doesn’t seem quite right).

I have been super busy lately. Being in a place where you’re surrounded by people you know and can access things like fun shopping and the gym easily means less time staring at walls. I’ve been hitting the gym 4-5 times per week which has been so good for my body. I feel strength I haven’t had in a long time. I’ve developed muscles in places I didn’t know you could have them. Shoulders have muscles? What?

Probably the best part about it has been the discipline I’ve exercised. I’ve talked before about how I struggled with discipline. I just cannot get myself to develop good habits. I do fine for a while and then the wheels fall off. My gym activities have been helped by the fact that I have a gym buddy. She’s using my guest pass to go to the gym, so I feel like I should show up so she can go. She comes because she knows I’ll be there so she can go. It’s working out well enough now that I think I’ll be able to continue it on my own.

 I need to work on developing better habits in the rest of my life. It’s almost 2:15am as I write this and I’m still awake because I totally failed at taking most of my meds on time today. Got the pill I take when I get up and… that’s it. When I don’t take my meds on time, things are not good. I feel joint pain. I don’t sleep. I have to get better.

I also know that there are other areas of my life (read: flossing, sorry J), that I’m terrible about too. It’s largely things that would make me healthier. The bad stuff is so much easier to do because we can accomplish it by doing nothing.

When I started thinking about what I could do to make myself be a better about healthy habits, I was thinking from the point of a reward system. How could I reward myself for doing the shit I’m supposed to be doing anyway. But now that I’m writing this, I’m irritated at myself.

For the things that are good for me, I should do them because I know that doing them will make me healthier. Health should be its own reward at this point in my life. The other part of the problem is how I would reward myself. Cake and other goodies that I would normally consider aren’t things I should be eating now anyway. Also,  I generally buy what I want when I want it (perhaps this is something I should be working on as well…) so there’s no saving up good behavior credits for a special something.

So, I have to suck it up and face the fact that sometimes in life, I just need to do something because it’s the best thing for me to do. I can’t expect to get a reward every time I do something I *should* be doing for myself. Chris Rock has a skit about it – I won’t mention where it comes from here, but if you’ve heard it, you’ll know what I’m talking about. He’s talking about people want recognition for things they should just be doing like, “I ain’t never been to jail!” Response, ” What you want? A cookie? You ain’t supposed to go to jail…”

I am a very visual person so I am going to track and monitor how well I stay on track with the things I should be doing. The plan is to have a calendar that I hang up where I can easily see it as a reminder. For this month, I’m focusing on three things and will give myself one star/sticker per day for each of the following:

  1. Take all of my meds ON TIME
  2. Brush my teeth twice/day, floss, mouthwash
  3. Meditate for at least 5 minutes

I already screwed up today, but since I just came up with this plan, I’m going to give myself a “N/A” for September 1.

What kinds of things do you feel like you could be better about? What do you think keeps you from doing what you feel you should?

A Prescription for Change

Being sick for pretty much a whole month on top of the stress my body undergoes on a daily basis has sucked. A ton. I feel like I can probably add depression and anxiety to all of that. Physically and emotionally I am in a really fragile place right now.

In an attempt to try to get some control over some of my issues, I went to an endocrinologist on Sunday. He told me that I don’t have Hashimoto’s now, but it may become Hashimoto’s in the future. (I think he meant hypothyroid…) Accordingly, he won’t put me on medication unless my TSH, T3, or T4 readings come back out of normal range (they never have). The antibodies should come back positive, but he’s seen lab work like that already and doesn’t think it warrants medication. This is in spite of the fact that I present with all the symptoms. Based on my understanding, my numbers aren’t reliable since the thyroid hormones could just be in my blood after the thyroid gets attacked. Either way, it doesn’t look like I’ll be getting help from him.

What I’ve come to realize in the last few days is that my patience level is nowhere near what it usually is. Those who know me know that I don’t seem to suffer bullshit well normally. Imagine that what little you saw is now gone. Yeah, feel bad for the people around me who seem to want to try my patience. Or don’t, since they are trying my patience after all.

While I don’t like how I feel now at all, AT ALL, it’s given me a unique opportunity. I can take a look at my life, how I’m living it, who I involve in it, and what I do with my time and figure out what I just don’t fucking want in it anymore.

There are some obvious solutions – stop spending time with people who piss me off (harder to do than you would like when you’re involved in an organization) and start doing more of what you enjoy.

Social media is a good example. I enjoy using it. I like staying in touch with people, seeing what’s going on in their lives. However, social media is also full of a lot of bullshit. I’ve already posted about how I tend not to back down when I see something come across my screen that seems like it deserves my attention. Even if I didn’t engage, simply seeing something that needs a response is usually enough to get the response.

I think that because my energy has been down I haven’t been able to protect myself from a lot of the negativity that floats around in the ether. I have no defense against the onslaught of horror that comes at all of us every day from so many different angles. I can’t make myself not care.

At this point I think I need to start doing things I should have been doing for a while now.

I need to meditate.

I need to get back into journeying.

I need to focus on gratitude for what I do have.

I need to unclutter my life – people and things that just aren’t helping me be the best Lyndsy I can be.

I need to eat better to try to gain back some of what I lose every day.

I need to enjoy simple things again – reading, listening to music.

There’s probably more I could, and will, come up with but this seems like a good start. I hope it is anyway. The way I am now, I won’t last very long with what little sanity I have left.