1

Feeling like a burden (Spoonie Life Complication #3)

A few months ago I got stressed out which led to a horrible back spasm. I tried to fall asleep, but was kept awake by the pain. It was so bad I actually had tears in my eyes. I couldn’t find any position in which I was comfortable. I hemmed and hawed about whether to wake up Mr. Lyndsy. I posted about it on social media – asking whether it was okay to wake him up.

Overwhelmingly the answer was “Yes! Wake him up!”

But I still didn’t do it until a time when he might have been up anyway. (Obviously he wasn’t awake since I had to wake him up, but it was after 7am when he’s usually up.)

Once up he put some ointment on my back to try to soothe the spasm, but it didn’t help much. A little while later we headed to the doctor to get some drugs that would actually help.

Mr. Lyndsy was upset I hadn’t woken him sooner. People online were surprised I didn’t wake him sooner.

Here’s the thing, I constantly feel like a burden already. I didn’t want to be EXTRA burdensome by disturbing his sleep.

Spoonies, even those with the most supportive partners, often feel like burdens because we can’t do all the things we think we should be able to. Some of us can’t work full-time like we used to. Others can’t help keep the house clean or cook. These things make us crazy. We try to do what we can, even to the point of hurting ourselves, but we rarely feel like it’s enough. (Occasionally this is made worse by outsiders who add their commentary about how bad they feel for our partners, having to pick up the slack.)

We try to be as un-needy as possible all the time. We minimize pain we’re having or hide it altogether. We just don’t want to burden those we love.

So when something happens that we believe is going to be an additional pain in the ass, we’re indecisive about what to do. Can we manage on our own? How much should we try before we go to our partners? What’s the pain point that we really just can’t take it anymore?

That’s where it has to get before we’ll reach out. Especially if our partner is doing something they really enjoy, like sleeping or playing video games or out with friends.

It all comes back to the fear that one day we’ll be too much for someone. One day our partner will hit their breaking point and that will be it. So rather than push it to that point, we do everything we can to be as self-sufficient as possible. Because we believe we’re already a weight on our partners’ backs every day.

Congratudolences

Congratudolences? What is that? Well, in the spoonie community, it’s what we say when we discover something about our illnesses. Congratulations for figuring something out! But, condolences for having to figure it out in the first place.

I got many congratudolences when I got the lupus diagnosis. Yes, lupus sucks. But! It’s great to know why I feel like shit all the time!

Today my congratudolences came when I finally realized how to tell when I’m having a fibromyalgia flare! I woke up today and my upper back wasn’t screaming in pain! That is a victory! Yesterday I was damn near completely miserable because my upper back hurt so much. I have no idea why it stopped (or started), but I am glad to have a signal when I’m flaring. This lets me know that I need to take it easy and let my body relax so it can stop freaking out.

Now the task is to figure out which drugs I can take or what I may be able to do to take the pain down a few notches. That pain is absolutely unreal. I can’t focus because the pain is so bad. It’s truly miserable.

I’m trying to really pay attention to the signals my body sends so I can better take care of myself. I should really be keeping a journal so I can track what I eat, any exercise I do, and how my body feels to see if there are any correlations. If I’d been smart I would have done this ages ago. Argh.

Anyway, congratudolences to me! Figuring things out one small step at a time!

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?

Creativity is good for my soul

Man! Designing these cross stitch patterns has been so good for me. Don’t get me wrong, I’m still exhausted as shit, sleeping poorly, and the back pain actually seems to have gotten worse somehow. But, it’s almost like I don’t mind it so much?

I feel more engaged in life. I feel a little more like I have a purpose. Above all else, it’s fun. I think about the designs as I’m falling asleep. I looked at the elevator light the other day and saw my little stitch blocks.

Some of them are gifts, which is always fun for me. I love handmade gifts. It’s nice to be able to make just the right gift. My plan is to design a bunch, make them, and then on my next trip to the US, get everything framed and shipped out where it needs to go. I’ve made a lot of designs though so I have no idea if I’ll be able to get everything done.

I do hope to sell some of them eventually, but even if I don’t, that’s okay. It’s FUN for me. And I am desperately in need of some fun to lighten up all the BLAH that has invaded my life.

If you’ve got any ideas for things you’d like to see in stitches, let me know. I’ll see if I can tackle it.

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.

Out and About

Today was an exciting day for me post-surgery. Work laptop for new job didn’t get delivered as expected so I opted to go out and find it myself. This required a drive to grab the friend to whom the laptop was sent, a trip to FedEx, and then as a bonus, dinner out. Friends had dropped off a wheelchair for me to borrow, so we figured it was easier to use that than to go out with the walker or crutches. Also, a good test run for the trip to the doctor tomorrow.

Getting around with a wheelchair here is a bit difficult and I couldn’t do it on my own. Trying to get the chair into the trunk and get me into the car is hard. Navigating in a place that doesn’t have sidewalks or ramps everywhere is a hot mess. The trip to the bathroom at the restaurant was a pain as it was tight turns and spaces everywhere. Not something I’d ever think of just walking around.

Being out and about was good – I liked getting out. However, my leg is pretty much completely protesting now. It’s buzzing and there are occasionally stabs of pain. I’m back in bed with my leg up, hoping to ease some of the discomfort. Pills are soon to follow.

After tomorrow’s trip to the doctor, I don’t think I’ll be out and about for a while…

One Day at a Time

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I feel like I should substitute a picture of my actual leg, but my foot looks pretty gross right now. Toes look like sausages and they’re covered in plaster. Anyway…

My leg is still numb, but only from the knee down now. I have the feeling back in my thigh. I suppose getting feeling back is a good thing, but I’m concerned about how my leg will feel once the numbness goes away given that I still have a decent amount of pain now. It’s mostly a throbbing pain, with occasional spikes of sharp pain if I move the wrong way. I can’t tell if the drugs they gave me are doing anything, but I’m choosing to believe they do.

The other problem (Warning: TMI ahead) is the effect that pain medications and anesthesia have on the stomach and exit system. It’s like there’s a big huge pile up and the tow trucks are slow to get the cars off the roadway. The good news is that the cars are finally starting to move off the roadway. (I have drugs to help.)

I have worked out a good heel-toe method of moving around without crutches, but it only works when there’s something for me to hold on to. So far that means it only works to get me to and from the bathroom. I may expand it out soon.

Emotionally I’m a little overwhelmed. I’m usually the person who’s helping other people. I HATE asking for help. I do not like not being able to do things on my own. The amount of pride I had for brushing my teeth and shaving my pits (it was beginning to be a forest) is ridiculous given how simple those things are. But trying to figure out how to stand without pain was a major accomplishment.

That there is another 6 weeks of this makes me want to cry. I’m going to have to look at this as a one day at a time situation or I will have a meltdown.

1

I Give Up

No Cast

Went back to the hospital this morning – no dice. They told me that I need to go back to the doctor and try to get an admission some other date. They also recommended trying surgery at a different hospital in another city. The main hospital apparently gets quite filled up with emergencies.

I won’t lie, I don’t get how all of that works. It makes no sense to my brain. But, nothing I can do about it.

I know from my first meeting with the doctor that he has one more surgery date this month – June 16th. However, I have no idea whether I’ll be able to get an appointment with him before that date. I also know that he won’t be operating during Ramadan – so nothing from about June 17th through July 18th.

We’re supposed to be heading out to Brazil about July 18th. A surgery date of June 16th would make that leave date impossible. A surgery date after Ramadan makes the trip to Brazil impossible. Mr. Lyndsy hasn’t been home in years and I know he’s really looking forward to it.

Everything about foot drop has been impossible to deal with. From the physical therapist making things worse, to holding off when the neurosurgeon said to wait, to the first doctor I saw here this year. At this point I just wonder if I’m just supposed to leave it as is and not try to have the surgery.

Then I think about how hard it would be to live without trying surgery. Driving hurts. Walking hurts. Surgery *might* make those better. Or it may not work at all.

All of this depresses me. A lot.

And we are cleared for surgery!

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Met with the anesthesiologist on Sunday night. Mr. Lyndsy and I had no idea where the appointment was so we went to the place that seemed to be indicated on the paper – the actual hospital where they’ll be doing the surgery. Not so much. Mr. Lyndsy insisted on going early and it was a good thing he did. We just made my appointment.

I hate going to the doctor, which is unfortunate given my medical issues. They took my blood pressure and it was sky high as it usually is when I go. White Coat Syndrome. And they weighed me which is always a pleasure. It was fun to look at initially since it was in kilograms. Then I did the math and groaned to myself.

Anyway, met with the anesthesiologist. It was an easy appointment since I’ve been under general anesthesia so many times before. I really wish I didn’t have to say that.

I have been cleared for surgery on the 6th so let’s hope I can actually get a bed and get this done!

Unfortunately, while I was turning to look at something today, I pulled something in my side. Walking is now extra painful. I did test out the crutches a little bit to see if the pain would interfere, but it seems like I should be okay if this doesn’t resolve before then. I do know this, my arms are going to be really buff when I get off the crutches.