Don’t place your hope in things that don’t last

So my resolution to not focus on my health problems wasn’t something I could sustain. I had a few really peaceful days, which were amazing and beautiful. That’s how I want to train my brain to become every day.

It’s hard not to feel like a failure because I couldn’t maintain it.

Even though the weather has cooled down to a point where it’s no longer having as major of an effect on my health, I’ve had a lot of stress since then. I’m getting better about managing minor stress, but extreme stress is almost as bad for my health as the extreme heat.

I knew we needed to fix both my car and my husband’s car, which was stressful in itself. (My adult son’s car also needs repairs, but he has been so good about saving money that he doesn’t need our help with that.)

But then we got the estimate for what it will cost to fix my husband’s car. It’s not even the transmission or the engine, and it’s still the highest estimate for any car repair ever in our 24 years of marriage. There’s so much wrong with the car. It felt like a punch to the gut and I’m still reeling.

If we had more resources, I would ditch the car completely because the value of the car is not much more than the repairs. It’s an 11-year-old GM SUV that gets poor gas mileage and everything costs more to repair because it’s an SUV. There’s was a point in our lives where we would have recognized this as a bad item to own and gotten something else. But we don’t have those options anymore and we’re stuck with it.

My husband fixed one of the things himself so that will save a little money. I’m so grateful that he tries to figure these things out, because he knows nothing about fixing cars and hates doing the work. And the poor guy is already working two jobs as it is.

We’ll find a way to borrow the money and just get further behind, but I’m just so tired of always falling further behind.

I can’t help but blame my health for this. If I were working full time like I tried to, we would already have money in savings that would have at least covered part of the repairs. There wouldn’t be so heavy a burden on my husband if I could work. We would actually be getting ahead because I’d be contributing, which was the whole point of moving down here.

I also placed way too much importance on a stupid concert I want to go to in a couple weeks. Normally, missing out on stuff I’d like to do is no big deal; it’s the norm. It doesn’t get me down because I don’t expect to go.

But from the time this concert was announced, I stated my intention to go — specifically as a “fuck you” to my illness and that I wasn’t going to let it stop me.

I have gone without too many fun things in my adult life because finances didn’t allow it, and I decided that I had to make it a priority to do things now while I still could. I’m not sure how long I’ll be able to do those things because my health is rapidly getting a lot worse.

Filing for disability was the hardest thing I’ve ever done. It’s hard to convince myself that it doesn’t mean my life is over. And since that concert was announced after I filed for disability, it carried so much more weight than any other concert has.

It represented my tiny bit of hope that my life would not be over because of my disability, because I would prioritize doing the things that made me happiest for as long as I was physically able.

And of course, now there’s no money for the tickets. I think my husband thinks I’m just being immature about it and throwing a tantrum to get my way. What I can’t seem to convince him of is that I placed way too much importance on attending this concert because of what it means about my hope about my health and my future.

It’s not about the stupid concert, it’s about my fear that I already passed the window of what’s possible in my life. It’s about my fear that the fun part of my life is already over.

I’m usually pretty able to get by without needing to go out and do stuff. I can be pretty happy if I can only spend $20 bucks or so in a week.

But I’m finally confronting what a future on disability is going to mean and it’s a lot harder than I thought it would be. And I’m sure my husband is intensely feeling that in a different way. If it’s hard for me to be so helpless, it’s got to be harder on him having to carry me.

I’ll bounce back. I always do to some degree. It’s much easier to keep a healthier perspective when I don’t have negative influences in my life and I’ve gotten rid of them.

In some ways, I’m still doing okay overall at holding it together. My 17-year-old found out yesterday that I usually have so much pain that I can barely walk. I’m proud that I managed to hide that from him so well for so long and that all he could see about my MS is how it affects my brain.

So I’ll somehow find a way to adjust to the circumstances. I always do. Things are probably not as bad as they seem.

I was just already beating myself a lot over the fact that I couldn’t keep working full-time because we really needed my income, and these circumstances have made me only beat myself up more. And I’ve learned a valuable lesson not to ever pin any of my hope on things I can’t usually afford like going to concerts.

I have to find different reasons to look forward to my future. Preferably that don’t require leaving my house or spending money because I may not get to do much of that. I’m just not sure yet what those things will be. Probably some variation on just being thankful for what I already have instead of wanting more.

At long last, peace

You know when you feel like everything is just wrong for a really long time and then the air clears? That’s me.

I am still struggling with my illness. So far after a week of cooler weather, my mental confusion and cognitive function is a bit closer to normal, but I realize that my body still hurts just as much, if not more.

And I’m okay with that, strangely enough.

My finances are still an absolute trainwreck even though I’m trying so hard to be responsible with what I buy. I don’t actually know how I’m going to get out of some of our issues, like cars that need expensive repairs.

But everything is going to be okay either way. I truly believe that. My husband has a second job at a department store (luckily they have nothing there that makes me want to use his employee discount) so that brings in some extra money while he looks for a better-paying primary job. I earn a couple hundred bucks a month from random small freelance assignments.

I keep getting little kisses from Mary or God or the universe or whatever you want to attribute it to. Whether it’s an unexpected bonus check or a bill being unexpectedly smaller, little things let me know it’s all going to be fine, because it always is.

It’s entirely possible I could be accepted for disability on the first try. I’m not expecting it, of course, because two-thirds of initial applications are rejected. But now I have easily accessible records that say that according to my MRI, I have “extensive signal abnormality throughout the white matter” of my brain. (In non-medical lingo, that means my brain is really fucked up, especially the part of it responsible for memory. It also means I’m at high risk for stroke, which means I need to keep my stress low.)

And even if my husband has to keep working the second job for a while and can’t find a better-paying primary time job soon, even if I don’t get disability for a few years, even if I don’t have much freelance work, I feel strongly that everything is all going to be okay no matter what.

I’ve gotten the people out of my life who weren’t meant to be there. My husband and I are focused on helping each other through this and we’re getting along really well. I’m realizing that I really needed faith in my life again and it’s specifically the Catholic one, which is also a great thing for my marriage.

I feel like there’s a storm going on everywhere around me and I’m sitting with my husband in a refuge, just watching it go on around us. There will be a mess to clean up from the storm and it will still be a challenge to get through, but everything just feels like it will be okay in the end.

I have a husband who’s my best friend and is working hard to make sure our needs are met. I have children who have fun talking to each other and help each other out (as well as helping me out.) I have a peaceful, comfortable home that is more beautiful than I ever thought I’d have. It is well with my soul.

Innocence and blame

There was this song from the 80s that now sounds a bit cheesy, called No One is to Blame by Howard Jones.

Even though I say it was a bit cheesy, the music was pretty and I really liked the song overall. Some of the lyrics were like a precursor to Alanis Morissette’s “Ironic”, mostly a litany of metaphors about sad things that suck and don’t go your way.

But the plaintive chorus, in which he repeats over and over “no one, no one, no one ever is to blame” seems to go through my head a lot lately. I actually think the song accurately describes about how I feel about the ending of this friendship that’s struggled on and off for years because it’s just not meant to be.

I decided I have to finally break the cycle but unfortunately the only way I can do so is by walking away. I haven’t gone around trashing her on social media or posting about how upset she made me. Most people understand that fights are never one-sided so I don’t need to try to get them to take my side.

I tried to calmly state in my previous post here (where very few people read anyway) that I felt that we had just grown apart and that our interests were too different. But I also made a very clear point to say that I didn’t think her interests were worse than mine or that my interests were better than hers.

And somehow she still took from that post that I was insulting her intelligence because of what she was interested in, even though I went to great lengths to say that wasn’t the case.

We just have different interests and values and priorities and that’s okay. If anything, I feel more self-conscious about my interests, because I don’t keep up with current movies or TV and that makes it hard to make small talk with people.

She’s telling her acquaintances terrible things about me on social media. And I can’t clear my name. I have to let those misconceptions stand because I’ll just look worse if I address them. That’s tough. Every bone within me wants to stand up for myself, even though I know it will be pointless.

I’m not angry at her. I don’t think I’m better than her or that her interests are stupid just because I don’t share them. Yet she feels victimized and wants to stay in that role for a while, and I can’t fix it. I just want it to blow over.

I am just lonely and depressed, which is a major function of my illness. And even if my husband knows that my friendship with this person always ends with me getting hurt, I’m often so lonely that I resume a friendship with her anyway. I have to work on respecting myself more and knowing that loneliness is better than a very unhealthy friendship.

I want her to find peace as much as I want to find it myself. But I really don’t believe we’ll ever find it together.

Because honestly, I really do believe – like the song says, as it plays over and over in my mind now – that no one is to blame.

Most fights always involve two (or more) people. It’s rarely as black and white as that one person is evil and the other is innocent and injured. And in this case I don’t think either of us was all innocent, nor that either of us was all evil. The truth in relationship conflict often exists in that shade of gray.

But facing the reality that no one is to blame (or that in your own separate ways, you’re both to blame) and that something is just over, is a lot harder. A lot more painful.

I’m just sitting here feeling sad, trying to process, trying to avoid engaging any further and bringing on any more anger against me. I think it’s at a stage where nothing I could say is being clearly heard, anyway.

I’m not angry. I’m not feeling superior. I don’t think she’s evil. And I also don’t think I am, either. I’m still the same person who made a point to sing happy birthday to her less than a month ago because she was upset that no one else had. Obviously, I cared about her then and still do.

I’m bewildered and hurt that she went from calling me a “hetero life mate” and best friend to hating me within the span of a month. It seems so strange to go from being highly valued by someone to completely devalued by them a few weeks later. I’ve just never experienced that kind of friendship rollercoaster before with anyone else.

I’ve never gone from so loved to so hated over one argument, which makes me wonder if the friendship was ever as deep as I thought it was in the first place (or as deep as she said it was.)

But nothing changes the fact that I’ve realized that this friendship isn’t healthy. We have a long pattern of hurting each other more than helping. And I think we both deserve to be healthier and happier than that.

I wish I could convince her that I don’t think any of the horrible things about her that she thinks I do. I wish she could reread what I wrote with more clarity.

It’s been a really long time since I’ve had any kind of breakup with anyone. But I see this more like a sad ending, the kind of mature breakup where you talk about the fact that it’s over and cry and hug and feel really sad about it. (Or you would if you felt like they would let you.)

I’ll feel sad about it for a long time. I’ll always wish that it could be different, but I know that it just can’t. I’ve already tried so hard and have always had the same outcome every time.

And I’m not sure what’s harder: the fact that I keep trying and keep getting hurt or the fact that we just can’t make it work. As much as popular culture likes to say love conquers everything, sometimes that’s just not true.

Depression is a liar

So even though it flies in the face of my last post about choosing to be positive and not dwelling on my problems, I can’t hide from the elephant in the room that is my depression.

And I mean, of course I’m depressed. I’ve had depression since kindergarten, but it’s been pretty relentless since trying to come to terms with my diagnosis. My hospitalization last year and the functions I lost really snapped me out of my denial. Trying to work full-time and being unable to was another blow. This isn’t the kind of thing you can just brush under the rug and move on.

I can’t find the exact citation anywhere now, but I’ve read that grief about having MS is most intense in the five years after diagnosis. Even though I was first diagnosed five years ago, I didn’t really fully believe I had it until last year’s hospitalization. And I have been in a state of grief about it ever since, so I guess that’s when my mourning period began.

High rates of severe depression are extremely common in multiple sclerosis. In fact, it’s one of the most common and most severe symptoms. In addition to depression being so much more prevalent, people with MS are more than twice as likely to commit suicide than the average population.

I’m not suicidal at the moment but I am definitely depressed. I’m reminded every day on FB of my friend Sarah, who lost her battle with depression last year. She probably understood me better than any other person has in my entire life besides my husband. I miss her all the time. And knowing how sad it makes me that she’s gone makes me not want to put anyone else through that experience.

But when you’re depressed, it tells you all kinds of lies. Like that nobody likes you, even though you know lots of people do. It makes you find it almost unbearably exhausting to be around people, even though you need them. Instead you want to stay where things feel safe, with the people who feel safe, which for me is my home and husband and kids.

I have a lot of things going on right now that aren’t great even when you’re not depressed. I’m sick. My hormones are out of whack with a prolonged PMS/PMDD phase. I had a breakup with a friend, which I still think was unfortunately a necessary and overdue thing, even though it feels awful. All three of the cars in our household need repairs right now and we don’t have the money to fix any of them. My husband is working two jobs now to help the finances and bless him for doing so — but that also means that I spend a lot of time without my rock to lean on and the day-to-day is a lot harder on me.

I miss my parents. I can’t believe it’s been almost five years since I’ve seen them. Our relationship was always kinda disappointing when I lived nearby and they never wanted to see me or the kids. But I see now that they were likely dealing with the same depression and resistance to seeing people that I’m going through.

Just because I can understand why people do what they do, doesn’t always make it feel better to be around them.

Yet despite that, I still miss them. I posted a picture of them on my Instagram the other day and I sobbed for an hour after sharing it because I just missed them so much.

Hell, I never really miss Michigan at all and never regret moving, but this super extended miserably hot summer has even made me nostalgic for cold Septembers there (even though it’s not actually cold there right now, either.) And fall is always the only time of year when I feel a bit nostalgic for home. I miss leaves changing colors and the kids avoiding raking them and getting hella overpriced fresh caramel apples bought directly from the orchard.

^^That is an actual picture of Michigan in the fall. Isn’t it gorgeous?

Halloween has also never again been as fun since we came down here, either, because everybody here does stupid, sterile “trunk or treat” events at churches instead. Dressing up in costumes and walking around in the heat from trunk to trunk in a concrete parking lot (usually in daylight) is so lame it’s not even worth it.

I miss Michigan Halloweens in our small town, even though it was invariably cold and rainy. (Some years, it even snowed on Halloween.) It was the one time of year when I felt most strongly like where we lived was a community, going outside of our home on foot to see our neighbors. It was fun. We got to know people.

I liked making costumes for the kids most years (and then my husband or I started helping our oldest make his own because he always had creative but impossible ideas.) I’d pass out candy to all the trick-or-treaters that came to our door (and there were always tons) while my husband took the kids around the neighborhood to collect their own candy.

Maybe what makes me sad is just nostalgia for when the kids were small. For as difficult as those years were in terms of our finances and my husband’s career, they were also really happy times with my children. Every day they did some new, cute, creative thing that just delighted me. My younger two were the best of friends and did everything together, almost like twins.

I’m not nostalgic for my own childhood at all, but I am nostalgic for theirs.

Then my old friend depression rears its ugly head again and tells me things that make me sadder. Like that maybe my kids will feel like their childhood was as sad as I thought mine was. Maybe my parents didn’t realize how sad my childhood was either and have memories of cute things I did, which I don’t remember.

It’s a vicious cycle. And because I know on some level that it’s lying to me, I can try to breathe through it.

Not get hysterical. Avoid people who make me feel worse. Appreciate the good things that I already have and make plans to do creative crafty stuff to distract me. Let my husband comfort me. Enjoy the hugs of my kids.

The hugs from the kids offer the one piece of hope that maybe my kids will feel differently about me than I did about my mom. I rarely hugged my mom as a teenager and she never asked for them. My kids hug me every day (my oldest does on most days I see him, which isn’t every day anymore.) My middle son does so several times every day.

I’m told that for teenage boys to voluntarily hug their moms — even in public, which they do — is pretty rare, so I’m taking that as a victory.

I know this feeling will pass because it always does. I’ve learned about the things that bring me peace and calm (and also about the things that disrupt my ability to be calm.) I have to stop my thoughts from getting carried away and recognize the cognitive distortions for what they are.

I’ve developed just rudimentary enough coping skills to get myself through until I actually do feel better.

I can resolve all I want to stay positive and that counts in terms of not allowing myself to wallow when I feel bad. Not seeking excessive attention from others when I feel bad. Drawing upon my self-care skills and trying to improve them.

But deciding that I won’t let myself wallow or talk about my problems all the time doesn’t make the depression go away, either.

It’s my cross to bear. I may never be free of it entirely, so I have to learn how to make peace with it. And for the most part I have, in my own small way. Now I just wait for it to pass.

The ending of a friendship

When you’ve spoken your piece and tried to end things on a high note, saying you’ve just grown apart, you hope that will be the end of it. You know from previous interactions that this person is prone to going into a rage and you just want to avoid that at any price.

Sometimes people, particularly those who engage in “splitting” (a psychological term worth looking into and what it means), can’t deal with the fact of someone refusing to engage. Their reaction to being hurt or feeling rejected is to lash out with abuse. If you say “I’m not discussing this further. I hope you find help” and step away, it’s turned around into you being a bully.

If someone calls you their best friend and “hetero life mate” and a month later you’re the worst person ever, chances are you’re dealing with someone who has much bigger problems than you can handle. Hence why I told her I hoped she’d find help. I meant that with zero snark.

The only thing you can do is to stop engaging, stop reading the messages they send you. They want to keep fighting and if you reply, even calmly, you’re feeding the drama they crave and opening yourself up to more of the same.

Of course I’m sad that it ended. I’m not going to post about it all over social media because I don’t want attention from airing those kinds of problems. And I don’t need to try to get sympathy from acquaintances over what is actually a very personal and sad matter.

There are always two sides to every issue. We both behaved badly and I’m not holding myself up as innocent. Certain things trigger anger in me too and she often did push those buttons. I’m not proud of myself for regressing into feeling angry so much. I had worked very hard to stop reacting with anger when people pushed specific triggers and lost a lot of progress when we became friends again.

But things like ending a friendship shouldn’t require talking about how upset you are on all your social media networks and trashing the person you were describing as a best friend just weeks ago.

However, the fact that you’re not posting about it all over social media also doesn’t mean you’re not deeply sad or hurt. You just recognize that some hurts have to be dealt with less publicly. Nobody reads this blog and it’s not connected to my real name, so this isn’t very public.

I’m feeling pretty beaten up. I calmly wrote in my blog post the other day that I felt I had grown apart from a friend. I woke up the next day to a barrage of insults from that person. I didn’t even read most of the angry messages as there were so many and I tried to respond calmly to a couple. I completely stopped reading any messages from her even as she continued sending them. Still kept sending them a day later, which I will continue to leave unread. And yet that was somehow turned around in her mind as me bullying her.

This has been a cycle for all of our friendship. I love her and always have and always will. But for my own peace of mind, I have to respect myself enough to walk away.

My husband and kids know that when I become friends with this person again, it’s always going to end badly within weeks or months. They always warn me against it because they know I’m going to get hurt. They know how hard it is on me to recover from the fights with her.

I am not doing a great job of modeling self-respect when I can’t even stay away from what everyone else sees as bad for me.

It’s sadly time that I do value myself and my peace enough to say, no more. Even if it hurts. I really get it this time that the nature of the friendship is never going to change. My husband hopes I really mean that.

It’s frustrating to know that you can’t clear your name. You have to let their misconceptions of you stand and let all their friends believe the horrible things they’re told about you, many of which are either exaggerated or completely untrue.

That confirms that it’s right to get away. You can’t heal other people. You can’t control how they choose to view you or how they behave. The only thing you can do is walk away and try to avoid letting them hurt you anymore.

Being positive, avoiding denial

I have decided that I don’t want to talk about my problems anymore. It’s bringing me down and keeping me trapped in a version of myself that I don’t like to be. But I’m also not sure about how to move forward, either.

It’s true that MS is a pretty major diagnosis. A very scary one. And though it’s hard for neurologists to really define much about the disease course in specific people, all five of the neurologists I’ve ever seen said my case is pretty advanced and was already either progressive or some rare variant from the time I was diagnosed.

They say it looks worse than typical relapsing-remitting and I wasn’t diagnosed until it had done a lot of damage to my brain. But at the same time, an MRI that looks really bad doesn’t necessarily mean a really bad prognosis. Several neurologists said that based on my MRIs, I shouldn’t even still be able to walk.

Then again, six doctors told me years ago that I’d never be able to get pregnant. I had to use fertility drugs for the first, but went on to have two more children without any help. So clearly, doctors aren’t very good at being able to make predictions, especially about what the body can or can’t do.

My mindset counts for a lot. I’ve given in to being more negative about my illness in the past six months, especially after finding out I couldn’t work full-time and had to file for disability. But I’m deciding now that I’m not going to be negative about my health anymore.

I don’t want to have my whole identity be the sick girl. I don’t want to be one of the many people I know online with MS who are wallowing in misery every day. I don’t want to define myself by my illness, because frankly there are a lot of other really interesting things about me and gifts that I have to offer the world.

But. That said, it brings up the question of how I can avoid focusing on my problems without also slipping back into the denial that I’ve battled for so long. That’s good when I’m not focused on my illness, but also bad because it’s harder to take the illness seriously enough. I will have to walk that fine line and figure it out, I guess.

I think avoiding being focused on my problems is more important for me than the risk of falling back into denial, though. I can look back and see old friendships that just kinda faded away without drama, and I realized years later that it was because I talked about my problems too much. Being focused on my problems is a part of depression, for sure, but it has had a very negative effect on my life.

I had always thought that since they were my friends, of course they’d want to hear about my problems. I just didn’t know when to stop talking about them. And they had to get tired of hearing about the same problems over and over because I have gotten tired of hearing other people do the same.

In a kinda strange comparison that helped me put it into perspective, my oldest always suggests watching movies that he describes as really bleak and depressing, but still worth watching. I can’t ever psych myself up enough to want to voluntarily watch something that will bring me down. Then I had the lightbulb moment that I was having that same effect on other people. No wonder they backed away from me. Why would you want to talk to someone who was likely to bring you down?

So I started to work on making a really serious effort to stop doing it, to talk about things that were more interesting to other people instead. Sometimes that’s a challenge with chronic depression, for sure. But it was an effort worth fighting and I was making some progress.

I regret that I lapsed back into talking about my problems and seeing things as so negative again. Some people brought out that negativity in me and I had to distance myself from them. I have to prioritize my health and do better.

It may always be a big fight for me, especially since I’ve had depression since kindergarten. But regardless of my challenges, I have more control over my mindset than that. I need to be around more positive people so it’s easier for me to be more positive, too.

I specifically have to resist the MS support groups because they are solely focused on the disease. I don’t want to become like the many people who use hashtags like #sickgirlsclub. I might even remove my illness from my bio on Instagram, just because I really don’t want my challenges to define me anymore. I don’t want to seem like I’m seeking attention for being sick. Getting attention for being sick doesn’t in any way lessen my actual suffering.

I did make real progress on my mindset before. It just took consistent effort. And that’s what I need to do again. I’m still better than I was before I started working on it, but I let myself get sidetracked into focusing on my problems again.

Because even if this disease sucks a lot, it is not the whole of who I am. I have so many other skills and accomplishments and interesting things about me and I don’t want them to be forgotten compared to my disease.

I don’t want my problems to be what people know about me. I want to be remembered for how much I triumphed even in the face of my challenges. I want my MS to be an afterthought. I just need to remember that achieving that will take constant effort and I can’t slip up again.

Now to decide what to do about a blog that has had a lot of MS-related content. I just don’t think I want to write about it as often anymore. Not writing about it won’t mean that I suddenly feel great or that the disease has become any less scary. Just that there’s so much more substance to me than my problems.

Being true to yourself

I finally essentially “came out of the closet” yesterday on Facebook to my former friends at the evangelical church I used to be involved with. I shared the truth about how liberal I am, which I kept hidden for the entire time I attended there. I suspected I would not be accepted for how liberal I was and judging by the unfriendings and messages I got as a result, I was right.

But in an unexpected sort of way, it ended up being just the thing I needed. It feels so freeing to finally be out there with who I really am, no longer hiding the aspects I thought people wouldn’t like.

I lost the friendships that weren’t based on who I really am or my real values, but I regained the approval of some friends I lost touch with when I started going to that church three years ago.

Facebook has good and bad aspects, for sure. But it always worked for me as a social connection before I joined that church. I had friends there who knew the real me and loved me so much anyway that they helped me move back down here. They were good friends I respected, who shared my interests in politics and modern literature and taking an intentional approach to how we live our lives.


They understandably backed off from me when I started being my fake self, hiding my reactions to current events, pretending to be less liberal than I really was. I understand why they backed away. But I thought they were gone forever. It may take time to get back to the way it was before and some relationships may never be the same. But it was so encouraging to see that when I embraced my real self, so many still had my back.

Interestingly, this parallels something else that’s been on my mind lately. I know someone has been checking my blog to see if I’ll write about her because we’ve had yet another recent argument. And the issue is parallel to being my real self on FB, because both are about finding the tribe that “gets you.”

I’ve come to the painful realization that I have grown apart from one of my oldest friends. As cheesy as I think the source is, this article lists signs that you’ve grown apart from your BFF, and we fit several of them.

Neither of us really “gets” each other. And that sucks.

I’ve already repeatedly apologized to her for the things I recently did to upset her. It’s her choice about whether to accept that or not; it’s out of my hands now. I’m not going to let myself get stuck in old patterns of beating myself up over how other people see me. I’m imperfect; I keep trying.

But I also realized that it’s just kind of sad when you cling too hard to something that is clearly over and has been for quite a while. Like when the family members of a hospitalized loved one want the doctors to keep doing CPR long after it’s obvious to everyone else that they’re already gone. And that’s what I’ve been doing.

I was very happy to attend her wedding a few months ago. We’ve had a couple of pleasant meetings in person. But for the most part, our friendship is just not a lot of fun anymore. I think she would probably agree. Our friendship is not the same as it was when we first met and I don’t think it ever can be.


The truth is that we don’t have a lot in common as people. We had a little more in common when we first met: we both had babies around the same age and were stay-at-home moms. We both liked to read pop-feminism books. We both liked pagan/New Age stuff like crystals and tarot.

I went one way and she went the other. I moved back to Michigan just a couple years after we met. By then, we had already had our first blowup of not speaking to each other and weren’t on speaking terms when I moved. I had never had that kind of tempestuous friendship with anyone else before and haven’t since.

I don’t think we ever actually had that much in common, though, even in the beginning. She liked going to movies, eating at specific places I didn’t like, getting makeovers at places like Saks Fifth Avenue, so we did all those things together. Those were not my favorite kinds of activities and I couldn’t really afford them, but I was just happy to have another mom friend.

In the Michigan years after that, I developed a new core of interests: discussing politics and books, learning how to make stuff (from soap to bread to sewing sleeping bags for my kids’ stuffed animals), finding cheap or free ways to have fun.

I had a very specific way I wanted to raise my children, which she thought was harsh because she was more indulgent. I wanted to raise respectful, responsible kids and to create our home as a peaceful sanctuary from the world (which is how it still functions and my kids are indeed respectful and responsible, so I’m happy about that.) I had very specific plans and designed my life accordingly.

Her interests couldn’t be more different from mine. She loves horror (which I intensely hate), Halloween, shopping, movies, nostalgia for her childhood and the 80s, celebrities. She would rather buy stuff than learn to make it, rather go shopping than sit at home. She is more free-spirited than I am, not much of a planner trying to achieve a specific outcome with her choices.

And that’s okay. It’s not a value judgment. We are just almost comically different. If you believe in astrology (which I don’t think I do), her sign and mine are even completely opposite each other on the zodiac.

I have other friends with whom I don’t share common interests, but we talk infrequently enough that we just have fun catch-up sessions every few months. Or we send brief messages when something reminds us of each other.

Trying to talk several times a week to someone with whom you have nothing in common is really hard. I wonder why we are afraid to let go of something that isn’t working.

There’s nothing wrong with what she likes. But there’s nothing wrong with what I like either. We don’t have shared hobbies or similar perspectives on life, which doesn’t give us much to discuss. The truth is that we don’t have much holding us together besides history.

Our friendship after I moved back to Michigan was still tumultuous, as it always has been. We’d be friends for a period of months or years, then get in a fight and stop talking for months or years.

We would miss each other and then start the cycle all over again without addressing or fixing the causes of the previous fight. I think those unresolved issues haunted us and still do.

I think in many of those times, we were probably at a point where the friendship was at its natural end because our values were too different, but we tried to keep it going anyway.

Most of our communications over the years have involved us talking about the problems in our lives. During the many long periods when we weren’t talking, I learned how to deal with most of my problems without discussing them in such detail or for as long. But focusing on your misery is such an easy habit to fall back into and that’s where I am again.

Ironically, as my life has gotten harder than ever in the past year with my illness, I want to complain less. And I want to listen to others’ complaints less. Not because I don’t care, but because my reserves are so limited. I need fewer crises in my life. I don’t want to make it such a regular part of my life to dwell on what makes me unhappy.

When I do that, it actually makes me feel sicker. That’s the absolute worst thing for my health. Despite my illness, most of the time I’m actually pretty happy.

It’s hard to admit that you’ve grown apart from someone you still love, that you’ll always care about. They become someone you once knew, that you still think of fondly in a past-tense sort of way.

You might catch up every few months to see how they’re doing, like you would with any other old friend from the past. You don’t want to lose touch completely, you just can’t sustain frequent contact.

After a long friendship that’s had regular problems, eventually you might look at this person and ask yourself, “if I met them today, would they still become my best friend?” You might find that you would say no. And they probably would answer the same about you.

That doesn’t mean that they’re bad or that you’re bad, just that it’s really no longer working and you’re too afraid to let go. Honesty with yourself is indeed brutal sometimes and it takes courage to face it.

You can’t try to keep a past relationship alive out of nostalgia alone. There’s no need for an ugly breakup because nobody’s mad, nobody’s fighting, just sad to let things fade into the background.

But you also know that it can’t really be any other way. The more you try to force a friendship that isn’t there anymore, it just prolongs the hurt.

Wanting what we can’t have

I had a little (or not-so-little) meltdown last night. It wandered all over the place, starting with my jealousy of others and the unfairness of others having an easier life to finally facing my disease square in the face and being so incredibly angry that there’s no way out.

I get it, life isn’t fair. And my life has actually turned out pretty well, even in spite of my illness. All of my petty tantrums about the things I have to give up, things I think I deserve, don’t really mean anything in the long run. I need to stop thinking that I deserve or am entitled to anything; that’s not how life works.

I’m just feeling sorry for myself, which I have no right to do when there are people in my town who don’t even have money for food. Even if my usual shopping-for-leisure budget is only about $20 a week and I have to give that up for the foreseeable future, not being able to shop for fun isn’t the worst thing. It’s probably more a sign that I have to check my values and priorities and find better ways to spend my time.

I got a further reality check when I saw that the founder of one of my MS support groups on Facebook died suddenly tonight. She was only five years older than me, taking the same new drug they wanted to put me on that wipes out your immune system. Her last message was three days ago, saying she had caught her husband’s cold. But there was nothing to indicate the end was near.

That really hit me hard, is still hitting me hard. That could have been me if I took that medication. Could still be me even without the medication.

It’s not a lack of positive thinking to say that I’m not actually sure I’ll get better from this particular relapse. This is the longest I’ve ever been sick. Steroids haven’t helped me in a couple years. Even when they gave them to me in the hospital last year, they didn’t make me significantly better. There is no treatment; I just have to wait and see if it goes away on its own.

I’m mad at the fact that other people don’t have to face these concerns. I’m mad that most people my age have decades of being able to work ahead of them, the opportunity to achieve future goals and travel once all their kids are grown. My mother-in-law has been telling me for years that things would get easier (especially financially) once the kids we’re grown. But that’s not actually going to be the case. I feel like that’s all been taken from me.

I wanted to see this concert in October, in part to fight against the progressive onset of my illness. I felt like it was a big F-you to my illness, to do so while I was still physically able. I’m barely able to do it physically as it is, and apparently not at all financially. So maybe those days are already over. I spent so long in denial and it took so many years to get diagnosed that I thought I’d get better. It really snuck up on me that I may not.

I don’t want to feel so sorry for myself that it becomes a self-fulfilling prophecy of doom. At the same time, I never went through this stage of the grieving process and I think that might have been a mistake. I think I needed to face this to come to terms with it — but I can also see why I was avoiding it.

One thing is sure: I am turning more to faith. And faith is helping me learn the value of suffering, which is something pretty foreign in modern American culture. It’s also helping me keep a perspective that just being alive is something you can’t take for granted. It’s not really about how much money you have to spend or how much you have in relation to others. Unfortunately, I haven’t yet found a way for faith to give me hope, though, and that’s what I really need.

In reality, this is probably a PMS-fueled bit of depression, in which it feels like nothing will ever be good again. After all, I’ve been pretty sick for three solid months with no end in sight. Not only did I recently face the fact that I can’t work full-time anymore, but I also lost all my freelance clients. Even without PMS coloring my perspective, this is a really scary time.

Will it ever be good again? Will I ever have spending money again? Most likely yes on both counts. Worst case scenario, if I don’t get any regular work back, I’ll have spending money again when I get disability, even if that’s three years away.

Will my current round of illness ever stop, letting me go back to how I used to feel? Possibly. As I said before, I’ve never been this sick for this long, so I don’t know what’s next.

Even if I’m embracing the spiritual value of suffering, that doesn’t mean I’ve yet learned how to suffer gracefully or stoically. Maybe I’m supposed to learn that and it’s just not going to be fun.

I wanted to see the world. I wanted to make it back home to see my parents again at some point — I certainly didn’t think it would be more than four years without seeing them. We worked everything out when I was hospitalized last year and I miss them. But I’m definitely no longer well enough for a two-day car trip and I can’t afford plane tickets. Hell, I wanted to take the kids to San Antonio (just six hours away by car) this summer and even that never ended up happening.

I think this is the transition time where everything changes. I have to focus on what’s really important, to be grateful for what I do have and for how comparatively well I am, especially in contrast to the people with MS who are in wheelchairs. Yes, I hurt a lot and I’m moving more slowly, but I’m still mobile. I haven’t lost that much function. I can still do nearly everything by myself that I could before, it’s just harder.

I just have to stop mourning what I didn’t get to do, the things I didn’t get to have. I have to get better at sucking it up.

I did what I could while I could, even if I now regret not doing more. Now I have to figure out what I can still do. I have to create a new definition of happiness and success that has nothing to do with what I buy, how much I can travel, how much I advance in my career. What’s next?

The internet world has changed

I thought maybe my next big venture would be to become a blogger as my full-time pursuit. After all, I’ve been compiling tips on Pinterest for more than a year about the best ways to do it.

But after further research into the way internet content is changing, I think it will just have to be a hobby, something I do for enjoyment. Maybe I can build online communities of people to talk to about chronic illness, Catholicism, frugal living, social justice. I’ve long felt like I didn’t fit in with any specific group, particularly in terms of Catholicism. I care a lot about the social justice aspect and in some ways I’m more conservative than the average non-Catholic person but I’m generally way too liberal for most Catholics.

If I can’t find a place to belong, maybe I’ll have to create it. Even if it feels like I’m talking to myself at first (or forever.)

But I’ve realized in reading more that the new frontier of making a career out of your life has largely moved on to visual mediums. Just writing isn’t enough. I’m now self-conscious about my paragraphs being too long and that I don’t include enough pictures.

Everything now is more oriented toward Instagram and YouTube. Fewer words, more pictures. From thirsty dads who’d rather try to get endorsements as a fitness trainer/processed sweets endorser (every bit as incongruous and confusing as it sounds) than get a job, to the countless beautiful young girls who want to be the next big YouTube star so famous for how they do their makeup that they get their own makeup lines, everything now is Self-As-Brand.

Even weight loss bloggers try to make most of their living from hosting Dietbets and getting fans to crowdsource the money for surgery to remove excess skin. The chronic illness bloggers make money from shilling essential oils, shakes or supplements. Everybody is positioning themselves not for honest content, but for what will get the most views, the most likes. Because more likes and views equals more lucrative endorsements. No one is truly unbiased in this new frontier.

I don’t know how to do any of that. I can’t advertise products I don’t believe in, just for the money.

I was never particularly well-suited to participating in the self-as-brand concept. Now I have found that I am simply left behind in many ways. I don’t want to live under a microscope. With my own kids who are adults or nearly adults themselves, I can’t be in the ever-popular “mommy blogger” category either. (And I desperately don’t want to be a grandma blogger any time soon, if such a genre even exists.)

I think I’m too prone to depression to keep a journal every day that people want to read. I have too many major interests to narrow it down to just one blog. But when you have several different blogs by topic (like I do now) it just scatters your audience.

And I’m just not a visual thinker to do it all on Instagram. You have to be mostly single-minded in what you post to find a community online, especially on Instagram, and I am too scattered.

Something kinda terrifying happened when I recently pursued my dream of a full-time writing job and had to quit in less than two months because of my health: all my other freelance work dried up, too. I had nothing to return to.

I’ve reached out to my most long-term and reliable contacts, and none of them have work for me. In most cases, circumstances having nothing to do with me mean that they may never have work for me again. We’re talking one was a reliable and fairly lucrative client I worked with for like 13 years…*poof*

I know not everyone shares the same view in God as the reason, but regardless of cause, all these doors are slamming shut, all at once. No matter how I try to return to old clients or find new ones, nothing is coming through. Since we need income, that’s inconvenient to say the least. And terrifying.

Since freelancing isn’t looking like it will be my full-time career anymore, maybe I should just use my domain name (my real first and last name) and web hosting to post all my real thoughts there on all my random topics. Let the chips fall where they may. See if anyone wants to read.

It’s really a question of whether I have the courage to be linked to my real opinions, but at least I no longer have to worry that doing so will affect my ability to get work…because I have none anymore.

But what if I’m supposed to go in some other direction? Or what if I’m supposed to continue freelancing, just for a totally new roster of clients, once I’ve recovered from the effects of my current relapse?

Of course, there’s also the terrifying possibility that I’m not ever going to recover from this relapse. I’ve tried to tiptoe around the subject, even with my husband, and honestly I believed that my functioning would fully return to normal by October or November. But what if it doesn’t? I’ve been sick much longer and more consistently this year than at any time before.

I feel like I’m in limbo in many ways. Creating a brand based on my persona isn’t going to happen. I’m not that self-promoting, for one thing (which is why I never did it when I was younger and was the mother of young children and had more of a following.) And for another thing, creating yourself as a brand looks like a hell of a lot of work.

If I had the energy and health to really invest in something, it wouldn’t be trying to make more money from my “brand.” I’d honestly rather try to help other people than get more for myself. But the truth is that right now I’m not well enough to even do that much.

More I find that I just want to be as happy as I can be. To keep writing (even just for fun). To love my family. To pursue my little hobbies.

I truly get a sense some days that life itself feels tenuous. I don’t know that I have 40 more years left. Maybe that’s just the discouragement of being sick for so long without relief. But I don’t know what I’m going to do with the years I do have left, however many I have, especially if I can’t ever work full-time again.

I have to give myself permission and acceptance to just be.

Finding the real me again

I’m really happy again lately, and I think it’s because I am finally getting back being to the real me again.

The real me apparently is happiest when I bake for my family, make bath products, and spend time in fabric stores. I’ve found that with coupons, fabric shopping is a pretty cheap addiction.

On the other hand, I’m on track to lose both my “VIB” status at Sephora again for not spending $500 there this year. I’m also not likely to reach the same threshold at Ulta either.

I like making bath products. I like things that smell nice and creating them myself. I like cute stuff, the kind of stuff my late grandmother (who was really kind of a snarky bitch, sad as it is to say) used to criticize me for as being immature.

I like making bread and cakes and muffins from scratch.

I’m not the most natural, makeup-free girl out there. After all, if I love making bath products, there’s a big part of me that loves pampering myself. But at the same time, I’m probably just going to let my hair grow long again (maybe coloring it with my husband’s help if I can’t get over the grays.)

He doesn’t care if I paint my nails or wear sexy lingerie or follow makeup trends. He likes me for me. And fortunately or unfortunately, the real me values comfort above pretty much all else (especially with the progression of my MS.)

Somehow in pursuing disability, I’m rediscovering the unique combination of interests that makes me who I am. And feeling like I’m good at things really does feel good.