Get it together

I’m not sure if I’m getting worse because I’m really getting worse, or if it’s some other weird combination of causes.

Is it because of the meds I’m taking to address pain and muscle spasms? I wonder if they’re actually making me worse. I’ve been taking them daily for three years, but it’s only been in the past couple of months that I feel so bad.

Am I worse because I’m not exercising as often? I keep trying to push myself to walk more and generally move more, but my legs feel stiff and tight. When I go from sitting to standing, my legs don’t want to move, it hurts and it’s hard to keep my balance.

There’s also the considerable guilt factor and second-guessing myself now that I’ve filed disability. Am I really that sick? Could I actually work a full-time job somewhere?

I mean, yes, I would say that I am indeed actually that sick right now. No faking about it. And no, I don’t think I could work full-time right now.

But. There’s the part of me that thinks maybe I could undo this. If I stopped taking all of my meds and let them get out of my system, did some type of consistent dedicated exercise routine every day, found a way to practice intermittent fasting on a regular basis, maybe all this would go away.

It’s that little voice in the back of my head that says I’m just not trying hard enough and that’s why I’m not getting better.

Really, what freaked me out was reading a very long thread in one of the MS support groups on Facebook. The thread was about how many people were still able to work full-time. Easily, most of them still were. Granted, there was a sizable minority who said they were on disability, even if they had once had a full-time career and had to give it up.

It freaked me out a lot that I was in the category that couldn’t work full time. More than freaking me out, that was actually terrifying.

But at the same time, I’ve had symptoms for 17 years and just didn’t get diagnosed until 2013. I had periods then when I was working full time or in school full time. It wasn’t until last year that I lost enough function that it isn’t possible anymore. And I still thought I could work full time until I actually tried it a few months ago.

Those respondents include people who have relapsing-remitting MS and may go months or years between relapses. They may have a very mild illness like I did for many years. A significant number of people in the group haven’t even been diagnosed with any type of MS at all and just think they might have it. The fact that I’m now too sick to work full time doesn’t mean I always was — or that the people who are currently well enough to work will always be so.

But if I’m too sick to hold down a full-time job at 44, how do I know I won’t be one of the people with MS who’s in a nursing home at 54?

I know people 5 years older than me who are going back to college. I’m supposed to be in my prime earning years. And instead, I feel like I’m just giving up, saying “yeah sorry, I can’t work, can’t learn anything new, I’m out of the game.” That seems really damn final. And that’s depressing.

I don’t honestly know what my next steps should be. This disease is really unpredictable and treatment is largely a guessing game.

Should I get off all my meds and hope that my pain goes away once I adjust to not being on them anymore?

Should I push myself to exercise more intensely, no matter how much it hurts or how at risk of falling I feel? Should I go on a very restrictive diet? Maybe all of the above?

Or should I just wait until the weather cools down and my symptoms go away on their own? I’ve been in a similar cycle in August many times before. Most of the past six years actually. I feel like I’m going to need to be in a wheelchair soon (I was actually eyeing the canes at the store the other day and considering one) and I can’t think clearly enough to pursue new work.

But if the pattern holds, I’ll be mostly fine again by November. Able to walk easily, able to think clearly again.

I feel guilty that my husband had to get a second job, all because of me. I’m only 44; he should be able to count on me to earn more of an income.

Am I falling back into denial, thinking that I have more control over this illness than I really do?

Or am I giving up on myself (and possibly hastening my further decline) when I have a lot more in my power to make this better?

Do I believe my current reality? Or do I believe the documentaries and random anecdotes that say that a symptom-free life is possible if I just fight hard enough to adopt a more extreme lifestyle?

So many questions, no clear answers. I mean, I guess disability will be good because it will ensure that we can survive during the 3-4 months every year that my brain just goes kablooey. But there’s that nagging doubt that I could make my brain healthy again all year long if I just did the right things.

Mothering big kids

I’ve never really thought I was a great mom, but somehow my kids have turned out really well anyway.

Although I spent a lot of time with them since birth, it wasn’t always quality time. Or even often quality time. I rarely played with them. Instead, I let them play with each other or entertain themselves. I didn’t think it hurt them.

Sometimes this is my greatest regret and biggest source of insecurity. I wish we had done more fun things together. The reason we didn’t was usually either because of my own depression or lack of money.

Yet somehow now that they are teenagers, I still see signs in my younger two that an element of friendship between them remains. They’re going to be 16 and 18 in the next few months; they’re less than two years apart.

It was sometimes hard having them so close together in the early years. They had always been lumped in together. Often mistaken for twins when they were younger, they were inseparable for many years. They shared a bedroom for most of their lives. But by the time they were in their early teens, they wanted to be different from each other, recognized as distinct individuals.

More than anything, they wanted and needed space. We were finally able to afford a four-bedroom house two years ago, which enabled them to have their own separate rooms. Even still, they spend most of the day in their separate spaces. I’m so grateful that we were able to do that for them, even if at times it has been a difficult sacrifice for us to make financially.

Today I saw an amazing glimpse of who they used to be when they were little. My husband and I took the two of them out to have kind of a last-hurrah fun day before school starts Monday (leaving our 20-year-old to do his own thing.)

We went school supply shopping, went out to eat in a hipster neighborhood in Fort Worth, then drove up to a very corporate but fancy and unique area in Plano. We were in the car for a really long time. And just like when they were little, as we were driving from Fort Worth up to Plano, they were playing chess together on their phones, their heads leaned in to each other and having fun and silly conversations with each other.

I had nearly forgotten that that kind of behavior used to be an everyday occurrence. It was really cool to see it return, even if briefly.

I have questioned myself on many occasions about whether the move here was good for the family. After all, it was solely my idea. That’s a lot of weight on one’s shoulders. I was the one who was most strongly motivated to move back here, which was prompted by my discovery of my illness just before I turned 40 and my intense fear of dying in my hometown in Michigan.

It wasn’t always a good move at first. My oldest dealt with it very poorly and I have frequently regretted making a decision that so negatively affected him. My middle child got hit by a car–ironically, four years ago to the day yesterday. (In fact, enough bad things happened in enough years on yesterday’s date that we started to fear the day was cursed. I opted to go out and do fun stuff as a way of facing my fears and laughing in the face of the cursed day.)

But we now live in a beautiful house we could have never afforded in Michigan. We finally have enough bedrooms for each of the kids to have their own, and I don’t know if that would have happened there either. My husband’s line of work is very much in demand here, which it wasn’t in Michigan.

I think the best thing by far, however, is the way the move enabled my younger two kids to see their futures in a new light. They both initially said they wanted to move to some different state as soon as they graduated– which I supported, because I’d be a hypocrite if I begrudged them the freedom to explore their own desired place to live the way I have. They didn’t want to go back to Michigan, but they didn’t want to stay here, either.

But I also have to say that I wasn’t sad at all when they both said tonight that they will probably stay in the area after graduation. My youngest (a sophomore) wants to make a lot of money, so we talked to him about careers that will enable him to do so. He overwhelmingly seemed to agree that this is a good place to do that. My middle child (a high school senior this year) wants to major in computer programming, another field that is in high demand here.

Driving around and taking them to see more parts of the area other than just the suburbs we live in gives them more of an idea of what’s out there. They both said they’d be interested in possibly working and living in either downtown Dallas or the booming Plano/Frisco area. So my goal over the course of this year is going to be taking them to see more of those places.

They’re both tentatively thinking of starting out at community colleges, then transferring to finish the rest. And they’re open to the idea of living at home while they’re doing some of that.

My oldest still wants to move back to Michigan and may very well do so at any point. But I also suspect that one reason he hasn’t done so yet (since he planned to move 3 years ago and has enough money saved) is because being in a big city with a lot of job opportunities is hard to walk away from.

I don’t know if I did anything right or what I can take credit for, if anything. But my kids are all so kind (don’t even get me started on how gentle and patient they all are regarding my illness) and they all seem to have good plans for their future. Even if they’re not necessarily planning on going away to university all four years, they do have future plans.

They have hope for their futures, which I did not for mine at their ages. They don’t feel like they have to get away from where they currently live in order to have opportunities. Even though they look forward to living on their own, they also don’t seem opposed to the possibility of having to stay with us for a bit as a strategic move.

And one of the last things they asked tonight, surprisingly, was about what our plans were for once they were all moved out and well-established in their own lives. Honestly, that’s still hard to imagine. I want them to have a soft place to land if the transition is bumpy in the first few years. But I know that eventually they’ll all really be gone for good, and I can’t see us needing a big four-bedroom house anymore.

Maybe we’d downsize to a cheap apartment in Arlington, the first place we lived when we moved here in the 90s. My husband still likes apartment living, although I don’t like the lack of privacy. Maybe we’d move up to Plano or Frisco, where there are many more job opportunities for my husband, once we’re no longer tied to our current location to keep our kids in the same schools with their friends. Whether we’d go for an apartment or a townhome or just a much smaller house, I don’t know.

I like the idea of a bungalow in the kinda artsy, kinda homey Lower Greenville neighborhood of Dallas. At least it would meet my husband’s preference of being more walkable than the burbs. I’d honestly like that, too.

But the fact of my kids maturing into adults really snuck up on me. They’re all at different stages of maturity and my relationship with each of them is different. But the one thing that’s the same is that I’m finally starting to see who they might be as adults, and they’re so capable and level-headed. I hope they’ll stay friends with each other and still want to be a part of my life too.

If I achieve those things — their friendship with each other, caring about me and my husband, and self-sufficiency — I will really feel like I hit the jackpot, even if it was in spite of myself. But if they have hope for the future because I moved them down here, well, that’s what I hoped for all along.

MS and family

I was watching this video last weekend about how to heal MS with diet. So far I’m really intimidated by that, but the video is not the main point.

In the video, the main person they were following was the MS patient. They interviewed all his family members, from his parents to his siblings and even aunts and uncles. All of them were just so concerned about him and they made a big effort to learn about his disease.

Literally no one, other than my husband and possibly my kids, has been that concerned about me. The way the rest of my family has reacted, I might as well have told them I had eczema or recurrent athlete’s foot or some other completely benign illness.

Is it that the people in my family and my friends just don’t care enough to learn about it? Do they think it’s not that serious? Or was the level of concern shown by this guy’s family and friends in the video an unusual thing?

It’s really frustrating and I’m sure it contributed greatly to the fact that I was in hardcore denial that I even had the illness until my super bad relapse last year. Nobody else seemed to think it was any big deal, so why would I?

I know I’m very lucky that my husband loves me, because I hear about many women with MS whose partners abandon them. But I still can’t help but feel like it’s pretty crappy that no one else seems to even think it’s a big deal.

Applying for disability at 44 is by far one of the most depressing experiences of my life and it seems like nobody cares.

Illness and real vs imaginary friends

My illness has robbed me of many things. But perhaps the greatest thing it has taken from me is friendship.

Of course, it’s not all the fault of the illness. I knew I was too lonely working at home so I tried working full-time outside the home again. Not only was it too hard on me physically, but I also found that I couldn’t make friends.

There was once a time when I could make friends at work; it doesn’t seem like so long ago. Even when I worked for the library back in Michigan, I felt like I had friends there. I’m still friends with two of the people I worked with at BabyCenter, which was a completely online job. I didn’t socialize nearly as much at that job as my coworkers did and that may not have helped my job standing, but I still managed to make a couple friends.

I’m not sure if it’s due to the way the illness has changed my brain or just the particular places I’ve worked, but I’ve had a lot more trouble since I returned to Texas. Both my recent job and the job I held in Downtown Dallas were mostly staffed by recent college graduates, so I didn’t fit in simply as a matter of age because I was so much older and no longer into hard drinking.

I made friends at the secretly-Baptist church I attended for two years. It was safe to talk about my traumas and illness with them, but they otherwise did not know the real me. Even still, during that time I also distanced myself from the online moms group I’d been part of for 16 years.

I had reasons for leaving the moms group. I felt like the same couple of members were going on campaigns every few months to turn on one member and essentially run them off. It would be presented with a ton of faux concern even though it was dripping with judgment. It would polarize the group and end up with not only the one being attacked leaving, but also many of her supporters. It was in one of those rounds that I also left. It was distasteful–and I also figured it was only a matter of time until they turned on me, too.

At the time, I was still at church. Even though my moms group knew the real me and my church friends didn’t, I couldn’t yet foresee a day when the church friends wouldn’t be around. One of my closest church friends said she considered me like a daughter–but of course she dropped me once I stopped attending, so I guess the “like a daughter” only goes so far. When I left church, nearly all of my friends from there stopped talking to me, so they were just situational friends all along.

Now I’m left with virtually no one besides my husband. We’ve always been each other’s best (and sometimes only) friends, but it would be nice for both of us to have additional social support.

Now I’m going through this adjustment to my illness and disability filing, and I’m not sure how much it’s appropriate to talk about to people, anyway.

I could try to make friends with people in the online MS groups. But often I feel like that just reminds me more of why this disease sucks and it scares me more. I need to try to maintain a more positive attitude than that.

The fact of the matter that runs through everything is that I don’t honestly know how to be a good friend. I’m extremely generous with friends who need help, which is never reciprocated and often makes things weird. I don’t think trying to bail out my friends when they’re in trouble is the right way to maintain friendships. It often creates weird power differentials. But after all these years, I still don’t know what is the right way.

I’ve never really known the right way to make friends. I have vague guesses that you’re just supposed to talk about surface-level stuff with people you have something in common with. But I don’t know how to talk surface-level. It’s hard to find people I have things in common with. And often trying to make friends brings back all these weird, lonely feelings from my earliest childhood, when I came on too strong in my desperation to have friends.

When I didn’t understand when and if to give my opinions and when to keep them to myself.

When I didn’t know enough about pop culture to even have surface-level stuff to talk about.

So many of those things are still true for me. I still want friends as much as ever and still feel like I’m sabotaging any friendships that have potential. I don’t know how not to be weird. I don’t know how normal conversations are supposed to go. I don’t know why I keep thinking that trying to rescue my friends is my job when all they probably want is sympathy.

It feels like there was some essential social-skill training everyone else got except me.

Maybe as I adjust to being disabled, I also have to learn to be more comfortable with being lonely. In truth, I’m somewhat introverted anyway. But I am not as introverted as my current circumstances make me be.

I really thought that based on the interviews, my most recent full-time job was going to be a great fit. I’ve realized that when I feel like people really like me, I’m actually somewhat extroverted. But the faintest hint that people don’t like me makes me retreat into my turtle shell. Unfortunately, at my recent job, it seemed like I turned back into the quiet introvert almost immediately and it all went downhill from there.

I’m not really sure what to do from here. I don’t really know how to form close friendships anymore. I don’t know how to maintain the friendships I already have, either. I need friends more than ever, but maybe this is a time to retreat. Try to come to terms with my illness. As I said above, nobody else is too interested in that. And unfortunately, it takes up most of my thoughts these days.

I’m revisiting my childhood lately and a lot of that was traumatic. Simply the fact of acknowledging myself as disabled is making me revisit my life and re-evaluate what I’ve done vs what I wanted to do. It’s hard not to feel like my life as I knew it is over, and that makes it that much harder to try to “be normal.” I’m not sure it’s even possible to be normal in these circumstances.

Sometimes I think I’ll turn back to religion. It would be so easy to go back to the secretly-Baptist church and have instant friends again, but it would still feel as dishonest and empty. I still think the Catholic Church is probably true and the practice of the faith itself is often beautiful. But it’s also almost inherently lonely. It’s hard to make friends at a Catholic church unless you have a ton of young kids or you’re over 55.

Maybe I’m clinging to the shreds of faith that remain in me and trying to start something from the kindling just because I’m lonely. Maybe God and Mary and the saints are just imaginary friends. But right now imaginary friendships are the only ones I can seem to maintain.

The ties that bind

I’m kinda struggling to keep it together and have not kept up well with responding to people in a timely manner. I am however getting some freelance work done again. Even if it’s only a little bit and my husband is still carrying the bulk of the load himself, I at least feel better for contributing.

I’m finally getting enough sleep, so I feel like my brain is starting to heal. (Although my relapse symptoms have not completely disappeared yet, they are diminishing a bit thanks to some cooler weather.)

I have some ideas of things I want to work on and almost all of them relate to writing what I really want to say. Being a resource for people, starting first and foremost with my immediate family. And trying to rebuild some kind of spiritual faith, which will almost definitely be of the Catholic variety.

I’m also slowly learning to make peace with myself and my illness and my place in the world. I had a long phone call with my mom yesterday, which lasted nearly two hours. I hadn’t had any contact with her in months and honestly I was really dreading telling her I had to quit my job and that I had applied for disability.

Yet she was so kind about it. She said she didn’t understand why I was so afraid to tell her and why I thought she’d be disappointed in me. If anything, she seemed more surprised that I had tried to work full-time, but said the fact that I had done so would likely help my case (since I had applied for disability once 2 years ago and canceled it because I thought I was well enough.)

My dad picked up the other line and cut in unexpectedly and briefly, just to tell me hello and that he loved me.

Something that was kind of an eye-opener and an affirmation was that I always envied my sister because she has so much more money than we do and is able to afford to do everything “right” for her kids’ success, like putting them in a ton of sports and introducing them to the concept of networking, which will surely help them get a job someday.

Yet my mom pointed out that my sister’s life is harder than it looks and the money is really the only good part. She also confirmed that my sister is prone to lashing out at people unprovoked, even her, so I’m not the only one on the receiving end.

And then the most important part of all that came from that conversation: my mom said that my husband and I are a lot like she and my dad are and were. Didn’t always have a lot of money and therefore had some struggles, but never went without any of the important stuff, and that there was a lot of love there.

I admit that for a lot of years I didn’t feel that love. Either I was too stubborn to recognize it or they had too many issues expressing it in a way I could understand– or maybe both.

I can see things from a different perspective now. I know that they tried their best, even if at times I didn’t feel like their best was enough. I see how my kids may have some of the same resentments toward me. But I’ve always done my best, even if they didn’t think it was enough. I’ve tried to keep getting better as a person and as a parent.

I see that a lot of my good traits come from them, like being anti-racist and thinking there are more important things than money and career success, and that a good marriage has to be at the center of it all.

They are sad that I’m so far away and haven’t been able to afford to visit since I moved, but they absolutely believe this is where I should be. And even if they can’t help me much financially or fix my MS, just knowing that they’re on my side is really pretty huge.

Suddenly, some peace

I never know how long the peaceful moments will last, but I enjoy them while they’re here.

Sure, I’m most definitely in a relapse of my MS now. Or more accurately, just an exacerbation of old symptoms that decided to reappear because I was too overheated for too long, haven’t gotten enough sleep, and still haven’t recovered from the stress of trying to work full-time.

Steroids don’t help me anymore since my illness has progressed to that point, so I just have to ride this one out. It’s not comfortable to say the least.

And yet, somehow in the middle of all this, I have little glimpses of peace and hope. I watched a good documentary tonight called “Living Proof” that showed how diet and lifestyle have a greater impact on the course of MS than the medications do.

Seeing as how I already lean toward that point of view, I was more than willing to go along. And it also gave me a renewed sense of hope. Some of the people in that video were so much worse off than me. On the one hand, that could terrify me about how bad I could get at any moment, since the disease is so unpredictable.

On the other hand, it was also a much-needed perspective check that I’m not really as bad off as I feel. I can walk even if I limp and my balance isn’t great. I don’t need a wheelchair or walker. I don’t need assistive devices to help me speak.

And knowing that cleaning up my diet will likely help me feel better (because it did before but I just didn’t stick to it strictly enough) gives me hope.

I know I’m still not likely to ever be able to work full-time again. Even if the confusion and difficulty learning new things that I’m experiencing now eventually goes away, I’ll still need to be able to get enough sleep, keep my stress low, to get regular exercise.

But I started thinking about all the things I still want to do and all the things I still have to contribute. And I just don’t want to count myself out of the game just yet.

When I find myself in times of trouble

Mother Mary comes to me, speaking words of wisdom, let it be.

Okay, so the Beatles wrote that. And I’m not the world’s biggest Beatles fan. (I think some songs are okay and I can respect their influence on music, but overall I think they’re kind of overrated.)

But these lyrics are repeating over and over in my head and I wish I could make them feel more true for me.

I was thinking we would just barely make it through this month, with a double phone bill and the kids’ school clothes and new glasses, considering that I had a lapse in income. I thought we would be okay, but just barely.

But I forgot about the electric bill. And of course it’s extra high because the summer has been hotter than normal. And of course it’s due in a little over two weeks.

There’s just no money for it. There’s also no money for the kids’ school fees. Everything looks impossible right now. And of course my husband’s car needs to be fixed, which we also can’t afford, because of course that’s just what we need.

He had an offer for a second job that he accepted, which gave me some hope. But now I think he might turn it down in favor of a different second job that pays more per hour and is more interesting, but will be much less money overall (and would take a break altogether before both Thanksgiving and Christmas, when we’ll really need it.)

All this just makes my stress go crazy, which in turn makes my MS symptoms worse. My left leg has been numb for over a week and isn’t getting better. Tonight my right hand also started having a weird spasm where I can’t hold my fingers straight.

That’s me trying to hold my hand straight and put my fingers next to each other. It’s been like this for about 8 hours.

I really need the stress to go away or I’m going to end up in the hospital. I know that. As I’ve said before, August is always my worst month for relapses. I am trying not to make that a self-fulfilling prophecy but also can’t seem to do the self-care things to avoid it because I feel too much pressure to work more.

I’ve picked up some freelance work and even though I’m working a lot slower than usual, that will help a little, I hope. It’s not as much as we need but it’s still significant.

It’s taking me about three hours to write a 500-word article, which I can normally do in an hour or less. But I’m pushing through it, even though my brain needs rest, because it might help us afford everything– IF I get paid on time. That’s a big “if.” (I hate depending on freelancing because it can’t be counted upon.)

I know I’m not the only person with money worries. I also know that in particular I’m not the only person with MS who has money worries.

But that’s small comfort when the expenses aren’t hypothetical. At this point, the only thing that will get us through it is divine intervention, some kind of last-minute unexpected surprise that will make everything okay.

So far we’ve gotten a few such lucky breaks this month. Yet I feel greedy for needing even more lucky solutions to seemingly insurmountable problems.

I feel like I’m getting little miracles and saying, “thanks but can I have more?” It seems ungrateful.

I’m not spending recklessly. I’m not getting little things (or big things) for myself. But cars still break and kids still need fees for school and more new clothes. We can’t really set the temperature in the house higher to save on electric bills or else it will further trigger my symptoms.

We just plain can’t seem to make it without me having earnings while I wait for disability. So I have to skate the line of doing enough freelance work that it doesn’t disqualify me for disability but still helps us meet all these bills.

Normally I like to have work to do. But when I’m on such dangerous ground in terms of risking hospitalization again, I need to be resting my brain instead.

Because the overwork can’t be avoided, I have to find a way to manage my stress. And that’s what I just don’t know how to do. I wish I believed in religion enough for it to give me peace. I wish I had anyone at all in either the spiritual or physical realm who could help me out.

Right now I haven’t even told my parents I had to quit my job because I think they’ll be disappointed in me. Plus I don’t think they could help anyway. My mother-in-law says she’s broke because she’s retired but also talks about recently buying two $600 recliners like it’s nothing, so she’s just kinda out of touch with our reality. Besides, I’m 44 years old, well past the point when I should need help from my parents anyway.

I just wish there was someone who could rescue me when things look this scary. It seems like other people can deal with these kind of worries without having anyone help them and also without feeling the tightness in the chest that I do.

And that’s what I wish I could learn: how to take the stresses of life in stride. How to not feel completely anxious about them. How to still push myself to work harder than my brain feels able to do and not worry about possible repercussions.

I know that preventing relapses with MS requires two things: getting enough sleep and avoiding stress. Since I apparently can’t avoid stress, I have to learn how to cope with it.

I’m still tempted to try to get another full-time job anyway and just deal with the consequences, which would likely mean I’d have to quit within a couple weeks because I wouldn’t be able to handle it and start the disability process all over.

The alternative of waiting for disability and trying to earn enough from freelancing to help us get by — but not too much — is nearly as hard as working full-time was.

It seems like most people just don’t have this degree of anxiety. And I wish that’s what I could be like, too.

I wish that I could feel like Mother Mary was whispering words of wisdom to me.

Instead I just feel alone, terrified about my health, worried we’ll lose everything.

Finding pieces of my old self

It’s kind of ironic that in many ways, I’m returning to some of my interests that I had in Michigan, which have been almost completely buried since I moved down here. That’s actually pretty cool to me because it’s integrating my Michigan-self with my Texas-self, which up until very recently I thought were entirely separate.

I’m finding a renewed interest in sewing and baking and doing crafty stuff and even in knitting. I’m still just as bad as I’ve ever been at knitting in particular and doing so kind of causes the muscles in my arms and hands to spasm a bit and get sore. But I also think it’s good for me, like exercise or physical therapy for my hands and wrists.

We had limited space in the moving truck for what we could bring down with us and there are only a few things I’ve missed. One is the fancy office chair my mother-in-law bought me one year for Christmas. It was really ergonomic and sitting in it all day to work didn’t screw up my neck and back alignment like the setup I have now. I also miss this really pretty table my mother-in-law had given me that was inlaid with some type of rose marble. I don’t even know what the name was for the piece of furniture–I’m sure she told me and I just don’t remember–but it was beautiful, much higher quality than my usual furniture purchases, and most importantly, it was a perfect sewing table.

Which brings me to my third and most profound loss in the move: my extensive collection of fabric, patterns, notions like zippers and elastic, yarn, and bamboo knitting needles. It’s likely a gross understatement to estimate its value at more than $1,000, given that I collected it all over a ten-year period.

We could only fit so much on the moving truck so we cut the things that didn’t seem important. I didn’t think I’d ever be working from home again, so I didn’t see why I needed a fancy office chair. I figured I’d never live in a place again that was big enough for a sewing table so that went too. And I was so focused on wanting to work full-time and become a career woman that I lost my interest in crafty stuff and didn’t see it returning.

Fortunately, I had the foresight to save my sewing machine and my soapmaking supplies. But I have missed the fabric and yarn stash on occasion already and can’t afford to replace what I lost. And now my desire to do crafty stuff has returned in full effect and I wish I had the materials.

I can be kind of a minimalist compared to a lot of people I know and in general I don’t need much “stuff.” Particularly since my MS has gotten worse, having a relatively uncluttered home is a source of peace. But I also sometimes get rid of stuff that I later wish I still had, and nowhere is that more true than in terms of my fabric and craft-supply stash.

I’ll gradually build it back over time, I’m sure. In the meantime, I find it really interesting that I’m getting that desire back to do crafty stuff again.

Even though gardening in Texas is pretty pointless and I don’t really have the stamina or interest in doing all the work of maintaining a garden, I do miss making stuff with fresh produce. My youngest son also misses when I made fresh pickles and wants me to do it again (which also requires more supplies that didn’t make the cut in the move.)

I’m trying to figure out what made these interests come back and the only thing I can think of is that I filed disability. When I did all the crafty stuff before, I also wasn’t focused on trying to work full-time (or find full-time work.) The pursuit of full-time work has been something I’ve really pressured myself to do the whole time I’ve been down here.

When I was working part-time, I was trying to get enough freelance work to supplement it to equal a full-time income. When I was freelancing, I almost never felt like I had enough work, so I was always looking for more.

What I think this means is that knowing that I’m really, for real, pursuing disability and expecting that I’m in the fight to get it for however long it takes has finally freed me to seek balance.

My middle son, who’s a high school senior this year and has always been my special buddy, has been telling me for years that I need to take time to relax. I need to let myself just have fun and do things I enjoy.

From his perspective, I typically only allow myself to work or sleep. That may be a bit of an exaggeration on his part, but he’s right that I have a really hard time relaxing.

Now I’m rediscovering that I do indeed have hobbies. Pursuing those hobbies does make me feel like I’m relaxing — and relaxation is not a bad thing. But interestingly, I had to get sick enough that I was officially backing away from ever working full-time again to be able to let myself have hobbies and to relax.

Maybe having hobbies and relaxing will make me feel like I have found a bit more balance in my life. That might make me a little healthier. Even if it doesn’t make me healthier, it feels right. Like I’m finally going to be okay even if I’m not completely driven by making money. It makes me feel like I have a sense of purpose, like there’s something I’m good at and enjoy doing.

I didn’t expect to suddenly find my desire to do crafty stuff again. If you had asked me a couple weeks ago, I would have said that I didn’t think my life had a purpose if I didn’t work full-time. And now everything looks completely different.

You were so great back then

Yesterday I was listening to Jack White’s live set at Lollapalooza and I couldn’t help but think that I really don’t like him as much now as I once did. He was a lot better with the White Stripes and even earlier in his solo career. Now to me he sounds theatrical and kind of pretentious.

But then I got to thinking about that a little more and saw parallels to my own writing. I started keeping a blog more than 17 years ago and that was what originally led to me becoming a freelance writer. I have often thought that my best days as a writer were behind me, more than 10 years ago.

A lot of the people who read my blog then no longer read it now. And part of that may be because when I was doing it then, there were a lot of moms with young children who were keeping blogs and we all read each other’s. Most of those people don’t regularly read blogs anymore, period.

I can’t help but feel disappointed in myself, though. Like my best writing was so much better back then and if I could just find a way to get it back, I’d get my audience back, too.

But isn’t that essentially the same as the thoughts I had about Jack White? Any artist can’t keep doing the same thing. The work they produce will change and evolve as they do as people — or at least it should, because the alternative is that they’re not evolving. Whether it’s music or writing or art, you can’t keep doing the same thing over and over or else it ceases to be a creative expression.

I’m not the same person that I was when I had three kids under five. I still have a lot of the same political views as I did then, sure. I’m still recognizably me. But back then, I wasn’t wrestling as much with religion. I did have some vague idea that I was sick but it hadn’t yet become something I lived with every day that had significant impact on my life.

I had a greater sense of my potential back then, too, and I thought I had more control over how my life would turn out. Being on the other side and seeing that I now spend several months a year nearly incapacitated by my illness and limited the rest of the time, I now have a different perspective.

I’m trying to figure out what I’m going to do with the next phase of my life. I don’t want to say “the rest of my life” because that sounds too final. I hope and want to believe they I’ll go through more stages of my life.

But this phase, when my kids are all nearly grown up and I have to wrestle with the reality of my illness and how it limits me, is undeniably different than what it was when my kids were small. Back then I still thought it was likely I would change my life in some more drastic way, particularly in terms of my career.

Now I know that I can take up new things and I hope that I will. But I may not make radical changes again. Or I might; who knows? But the key point either way is that I’m not the same person I was 15 years ago.

That means that some of the people who liked me then don’t like me as much now, and the feeling is mutual. Not that we’ve necessarily grown to dislike each other, just that our paths have diverged. We don’t have as many of the same circumstances in common anymore.

Much like Jack White makes different music now because of where he is in his life and I may not like it as much as the older stuff, that doesn’t necessarily mean his art objectively sucks now. It just means that his work had to change because he changed. And he’s made whole new fans who love what he does now.

As a creative sort, you can’t try to avoid changing so that no one ever feels alienated. You have to just follow where you are now and hope that some fans will like what you do. But maybe they won’t, and that has to be okay, too. That’s always a hard challenge for me. I want everybody to like me always.

I can’t write with readers in mind. I think that trying to do so has stifled my voice. I have to write what I need to say, and if people like it, they’ll come along. If they don’t, it’s not my job to change myself and what I write to please my audience and keep the same followers.

At the same time, that’s a lot easier said than done.

Do I need self-discipline or a reality check?

I need to get some self-discipline, but unfortunately I don’t know how or where to find it.

I know that right now, I’m really struggling just to stay out of the hospital. August is always the worst month for my MS, but it actually started earlier this year because of the unusual heat wave starting in June. It feels like I’ve been on the verge of needing the hospital since mid-June.

My MS relapses usually take either a primarily mental aspect (like with the brain fog and slow cognitive processing) or physical like with numb legs or arm tremors or foot drop. This year, because the summer heat began so early and because I started the summer being rundown from trying to work full-time, I’ve experienced both the mental and physical aspects.

I’m quite literally melting down, like circuits that have overheated and are malfunctioning as a result.

Despite all that, I’m still being pretty hard on myself. Somehow I think I should still be trying harder. Like I would have more freelance clients — or at least have the motivation to work on an e-book and my websites — if only I had more self-discipline.

How much can I really expect of myself while my circuits feel like they’re fried? I don’t honestly know the answer to that question.

I’m honestly terrified to go on to disability. I can look at how much I’m still on the verge of total shutdown even without working full-time and I feel pretty certain that I couldn’t have worked through the past six weeks.

But there’s this voice in my head that calls me a quitter, tells me I didn’t try hard enough to find some kind of work I could do with these limitations. I feel like getting disability is giving up. Secretly, I feel like saying I’m disabled really just means I’m lazy.

In truth, though, I can look at the past few years and realize that I don’t think I was ever quite as capable as I wanted to believe that I was. I can see how my MS was affecting me even before I moved down here. Most of the past 10 years, I wasn’t working full-time. I wanted to be working full-time during a lot of that time, but any time my freelance work started to approach full-time (for example) I started to have more trouble with my functioning. And I’ve only gotten worse since then.

But if I don’t have control over whether or not I’m really disabled, how much control do I have over the rest of my life? And what do I want to do with my time? I guess I’ll have to figure that out — once the summer heat is over and I can think clearly again.