As I’ve come to learn, many years later, the diagnosis of multiple sclerosis most often takes a twisty, windy path that leads to many dead ends. It’s not until you arrive to the day where a doctor actually says the words, “You appear to have multiple sclerosis” that you start putting together all of the pieces and sorting out what were probably some early clues.
I decided that the best path to take to describe my personal journey to official diagnosis is to share the clues as they were happening. In my own words, at the time, as captured in my journal. This way you get the unfiltered experience I went through and not my pasteurized recap where the benefit of hindsight means I can edit and change what really happened. In this case, what really happened is probably more interesting and telling than any spin I could put on it.
8.11.13 – Journal Entry
I walked with my friend Foody again today at Highland Park. We walk around the reservoir and talk and entertain each other. I usually really enjoy it – but these last few times, things were odd. And just like last time, lap three was when my legs started to feel like they weren’t mine. It’s so weird! Could it be that I’m this out of shape? Or is it something else – maybe related to the weird numbness in my feet? I’m gonna keep at it. I have to. I also have to try and do it more often and see if that helps.
I feel like I am haunted by the idea that I am someday going to turn into my father. Which sounds terrible – but it’s my biggest fear. I am a lazy person a lot of the time. I like to lay about. I like to…relax. I often calculate how to take the fewest steps in my day as opposed to trying to take more. I blame this on my shoes a lot of the time – but now it’s just become the way I do things. And that is not something I’m very proud of.
So like so many things about me that I’ve not been proud of in my life, I have to try to change it. I did it before. I had Matt, my one-time personal trainer, of course, but I have to try and remember how hard that was. How every time I walked into the gym I felt like I wasn’t going to be able to do it. Every time I stood at the end of the hallway of doom (as I started calling it) with weights in each hand preparing to do my walking lunges – the dread I felt in my heart knowing that my body wasn’t going to want to do what I was supposed to do. Or was it my mind that was convinced that I couldn’t do it? I ended up doing it. I usually give Matt most of the credit for that. But maybe I need to take some too. Maybe then I will convince myself to keep at this basic simple thing – this walking thing. Because just like then, I know in my heart I can do it. I have to do it. The option isn’t really an option – sitting around until my legs stop working just like my old Dad’s have done. I know it’s a long time until I get there but it scares the shit out of me – so it feels like it could happen tomorrow if I don’t get my shit together.
Hell. I have the shoes. Isn’t that half the battle? Isn’t that usually half the battle for me? Indeed.
This electronic journaling thing feels different than the old fashioned pen and notebook, but it also feels good. Different but good. It’s more…convenient maybe? Finally found an app that I like. And that seems to work for me. Finally have found the ability once more to get the things out of my head that need to get out – and not on Facebook. I think Facebook took the place of my confessional. And that’s not honest – it’s just not. It’s too easy to make my life look too…cool on Facebook. My thoughts can be extra witty – when I know other people are reading them. It’s like the audience immediately evokes the persona of what I think I’m supposed to be. I tell myself I’m being honest and I feel honest. But writing just for me…that’s when I’m really honest. It’s important to have that in my life. And it’s been too long without an outlet for what’s lurking around up there – in my brain.
8.14.13 – Journal Entry
I woke up this morning to 52 degrees. I am in heaven. It’s amazing how much the weather affects me. It can ruin a day or make a day. Today? It’s gorgeous. Clear. Cool. And made for me. That’s how it feels. Although it is hard to get out of bed when the windows are open and I’m covered in kitties and we’re all so damn happy. But there’s work to be done. So I must rally. But wow. So far at 7:31am I really love today. I just wanted to make sure it knew how I feel.
9.17.13 – Journal Entry
On a plane. It’s reminding me of the old days when I used to journal while traveling. Now I don’t carry a spiral bound notebook – just my iPad. We may not have flying cars just yet but there are some things that are different (and probably easier) here in the future.
In Atlanta for one day on business. No overnight – which makes me really happy. But a long day. Left my house at 5:30AM and won’t get home tonight until after 9:30PM. But it’s so much better than an overnight.
The mystery of my numb feet continues but based on some blood work my doctor did, I’ve been told now that I am what is called “pre-diabetic” – which means my blood glucose levels are too high and I need to be on a diabetic friendly diet in order to get them down. I’m not sure how I’ll manage this – but I have to try. I spent $140 on 4 small bags of groceries last night. Eating healthy, as it turns out, is not cheap. And it doesn’t really make me happy. But I really have no choice. Diabetes, as it turns out, runs in my mother’s family. It’s not really an option to blow this off and let myself get really sick with this disease. But changing my eating habits is a monumental task for me. I don’t enjoy healthy food – no matter how hard I try. And the preparation and planning it takes to eat healthy, fresh food is pretty significant.
Maybe I’m just lazy. So I have to buck up and give this a shot. Get used to a new way of feeding myself so I can feel better and BE better. Cheryl (my long-time therapist) is gonna absolutely love this. She’s only been trying to make me take on this challenge for years. She admits, it took her until she was 60 to start thinking about changing her eating habits for health reasons. I guess it’s better to start now and prevent anything really bad from happening. It’s odd to realize that I am in control of this.
Why a diagnosis seems to have made me able to make this effort when nothing ever has before (not even weight loss could motivate me!) is a mystery to me. But there you have it.
9.25.13 – Journal Entry
So, I’ve been doing ok on the low-sugar/no processed sugar diet. Although it doesn’t make me very pleasant. I guess you could say I’m probably in withdrawal. I don’t feel terrific the way all of the articles say I should or will. I wonder if that will ever happen. Eating just isn’t fun anymore. I find myself feeling hungry a lot of the time because I lose interest in what I’m eating before I’m full. I have to remember to pack some “approved” non-sugar snacks for the office tomorrow. So I don’t allow myself to get so hungry that I feel as crappy as I did when I got home tonight. It’s all so much effort.
Funny. As soon as I write that I have to stop and accept how ridiculous that is. People deal with challenges every day that make this effort seem like nothing. I mean. I can afford good food. I have access to it. I really need to stop indulging myself when it comes to my attitude. It’s never been my strength and it appears that I get worse the older I get. I tend to feel so damn sorry for myself. Why? Because I can no longer live on Oreos and skim milk? Jesus. I should be ashamed. And I truly am.
I want to be more…positive? Strong? Better at having a stiff upper lip and resolve? Yeah. Not my best self right now. Really have to work on that.
Oh yeah…my feet? They’re still numb. So there’s that.
12.31.13 – Journal Entry
New Year’s Eve. I feel like I should be writing some big ideas about what the past year meant to me or what I learned. I guess that’s kind of hard this year because it was a really tough one. My sister’s life pretty much fell apart. I know this didn’t happen to me, but it felt like it did. I guess that’s how my family works. What happens to one of us, happens to all of us. For me anyway. Going through the time with Alex and his treatment in Utah. That trip where we literally had to leave him crying in the wilderness. There were times I was afraid this would be the year we would lose him. I can’t even bear to think about that. How grateful I am that we’ve come this far. I’m not naive enough to think this is over or that we’re out of the woods. Alex will always need our help and will always struggle. We just have to stay together and help in any way we can. And I know we will. But what a year we’ve had. There were a lot of tears.
Contrast that with the joy and excitement of what happened to Lani this year and her success with Simple Sugars. It’s been insane to see and an amazing thing to watch the business woman our little girl has become. She is a presence and a force to be reckoned with. I love to see her handle the challenges and overcome them. I hope this year she finds time to enjoy the success a little more.
I guess I hope my sister has a few breaks coming this year. She’s certainly had her share this year. I hope she gets out of her marriage gracefully and without too much bloodshed. I hope she can find her way back to what her new normal will be – and I believe in my heart that she will be a better, happier person as a result of all of her struggles.
For me? I’m not sure what I wish for me. I have learned not to plan my life. I know plans don’t work. I have learned that what will be will be. And usually I’ve found a way to deal with it…I have some new challenges facing me with my new situation at work. I hope I find a way to work through them and create a better situation for myself and for the people on my team. I hope I can find a way to make our new ownership a positive thing for all of us. I hope I cannot let it get the best of me. I hope I cannot allow it to get me down. I wish for a year with more travels and seeing things I haven’t seen. I wish for real relationships with my true friends. I wish for time invested in things that matter. Maybe I wish for love? Maybe I don’t. I’m not sure about that. I am sure that I won’t close myself off. I will try to be open to all that a new year brings my way. That’s the best I can hope for.
7.22.2014 – Journal Entry
I keep wishing for time – more like energy or focus – to write. Things have been bothering me.
I just feel crappy. Tired. Run down. I feel like I’m gaining weight around my middle since changing my smoothie recipe. I feel like I can’t get enough sleep. And I’m bloated like I’m overfull all of the time. It’s hard to say whether I’ve actually gained weight or if I just feel bloated. I think I have – put on some weight. But the rest of the weirdness has me feeling concerned. Like there’s something more going on.
Tomorrow I’m going back to my old smoothie recipes and seeing if that helps. I changed to a more heavy protein recipe after my last blood sugar test to try cutting back on carbs more. But it wasn’t really the fruit in the smoothies but the cookies and chocolate I’d started eating fairly regularly before my last blood tests that screwed me up, if I’m honest. I’ve given those up again – and I’m going back to the kale. I felt better on those recipes than on the heavy protein recipes I’ve been doing since my last doctor appointment. I can’t deny that basic fact.
I’m still taking all of the supplements. Religiously. But they don’t seem to be helping with anything. My face has finally cleared up but that’s due to the antibiotics I’m taking – not the supplements or the dairy I gave up. It gets me down. Sometimes I think I felt better when I was living on Oreos and skim milk. My skin was certainly better. I was heavier – I think and I had high blood sugar. But I felt better. I think.
I’m tired of trying to unravel the mystery of my health and my hormones. I’m sick of trying to figure out why I feel so…off. Maybe I just need to stop thinking about it so much. Maybe trying to “hack my health care” like Dr. Sarah Gottfried says I should just takes too damn much energy. And I don’t have a lot of that to spare.
Tomorrow I’m going back on fruit and kale. Back to what worked the first time I tried to get healthier. Maybe I’ll cut back on the supplements too. Who knows? I’m just kind of tired of trying to figure it all out. I just want to BE OK. I want to stop trying to be ok. I want to just be ok. Not feel tired on a full night of sleep. Not feel full on an empty stomach. Not feel out of breath from a short walk to my office. Not have a face full of acne. None of it.
Maybe if I stop trying so hard it will just happen. At least I won’t be so sick of obsessing over it. That has to feel better, right?
8.24.14 – Journal Entry
After a particularly trying couple of weeks and some rather alarmingly obsessive thought patterns, a visit to Cheryl led to my going back on Prozac. I’ve been off of it completely for about 6 months.
I wonder why I do this to myself over and over again? It’s been fairly consistently proven that my brain needs a little help. I have a hard time staying clear – seeing my way through my obsessions and thoughts to a place where I feel OK and able to handle the stress of daily life. When it overwhelms me, without the drug, I can’t think my way out of it. Everything is too…much. With the drug, I think my way out of most things relatively easily. I guess it bothers me that I need a chemical to allow my brain to work properly. I think it would annoy me just as much if I needed a drug to control my blood pressure or my blood sugar – the thing is, I can control those things in other ways. My serotonin levels? That’s trickier. Too many variables. Too many systems involved. It becomes somewhat of a maze. I was lured in by Dr. Sarah Gottfried and her assertion that drugs shouldn’t be necessary in a hormonally balanced system.
The thing is, I’ve taken a mountain of supplements (I am still taking them every day) and I’m not yet balanced. I’m doing my best (most of the time) to eat right. I try very hard to get enough sleep. And yet, I am clearly not hormonally balanced. It’s somewhat of a moving target.
The thing is, when I’m medicated, I feel like writing less. It’s like I have less to say. Or maybe the need to write comes from the need to expel my confusion and obsession and when I’m not feeling as confused or obsessed, there’s less to write about. At times I wish I had the discipline I used to have when I was filling books and books with my thoughts and insights. Other times, I think how grateful I am that I am not so full of sadness, angst and fear that I absolutely need to get it out physically – on paper. So I could work my way through it? Probably. But the getting it out was really the first goal. Back then there were days, weeks, months even when I felt like what was swirling around inside of me would consume me and I wouldn’t be able to get through another day. I always did – but getting it out is part of how I did.
I’m coming to the time of the year when I’m done with the current season. We’ve had an unusually cool summer – I mean, I had central air installed earlier this summer and I’ve had very little cause to use it. Until this last couple of weeks. The heat and humidity aren’t bad at all but compared to what it has been all summer, I can barely stand it. It makes me feel like my body doesn’t want to work. Like slogging through quick sand.
I’m over summer. I’m ready for the leaves to change and for the air to feel clean and crisp again. I’m tired of feeling heavy and slow. I’m ready to feel cool and light. The very air itself makes me want to lay down. The upside, of course, is that I did get that central air installed so today I am hiding inside waiting for October to arrive, pretending I can’t see the sun shining outside. I can see it, though, and it haunts me! I’m such a predictable creature. I always tire of whatever is happening at any given time a good month or two early. I’m ready for fall in August. Then after winter comes and goes, I’ll be ready for summer in March. I suppose you could say I’m never satisfied with what’s happening right now. I guess I should work on that.
But until I do figure to out, man. I wish it would rain.
11.5.14 – Journal Entry
I haven’t written in a while. I guess you could say I’ve been preoccupied. It started when I decided to walk to my Saturday afternoon massage a week or so ago and stepped off the curb in front of my house. Only to fall on my ass, twisting my ankle in the process to the point where I couldn’t get up.
Two strangers stopped to help me. One, a tiny woman driving a car down my street. Turned out she was moving into a house down the block. I knew she would never be able to support my weight. She was so small. She looked like she might weigh 90 pounds soaking wet. Luckily, there were two guys in a moving truck driving behind her down the street. One of them jumped out and carried me to my front porch. Yeah. He had to lift me up and carry me. I looked at him and said, “Um, I weigh more than you think I do. I’m not sure this is a good idea.” And he looked at me and said, “Lady, I’ve been carrying couches all day. I think I can handle you.” Well. Ok then.
My ankle swelled up to the size of a large nectarine. I haven’t been able to walk or get around so well since then.
Then things got crazy at work. New business RFP. Crazy clients cutting budgets and making me insane. My sudden realization that my fall off the no cookies wagon has led to a distinct increase in my size. Which led to worries about my problematic blood sugar. Which just made everything worse. On top of the fact that I’m running out of options for comfortable shoes to hobble around in – all of which are decidedly unattractive. Leading to my general malaise and feeling of overwhelming frumpiness…leading to a harsh realization. I need to stop this spiral.
Cheryl taught me about the amygdala in my last session. The center of negative thinking. The place where evil grows. Brain evil, that is.
So I’m trying to stay in the midbrain. That’s where positivity lives. Kind of. That’s where one can be most present in the moment. Where one can overcome the amygdala merely by (wait for it) thinking positive thoughts. Staying present. Not spiraling out of control. So there you have it.
I’m attempting to accentuate the positive. I’m feeling my ankle getting a little better every day (and by extension my shoe choice gets slightly less hideous with each passing day which does wonders for my mood). I’m getting bag on track with the healthier eating. I’m trying to look at the bright side at work. I’m doing my best. My positive best.
The amygdala is hard to battle. I’m dedicated. But it’s a formidable foe. And now I’m laying my tired body down to sleep. Tomorrow shall be another positive day.
Take that, amygdala!
11.23.14 -Journal Entry
The beginning of my first long winter break. This time I’m off until December 3 – which feels like a nice long time to be off. I’m thinking of things I might do.
I bought tickets to see A Streetcar Named Desire, a production from my friend Eileen’s boyfriend’s theater company. The reviews were amazing. I bought two tickets and have no idea who I’m taking with me but I bought the tickets so there you have it. I may go to help out at the scrub shack a day or two. They’re super busy for the holidays and with all of their new wholesale customers. I know they would love the help. Then I was also thinking about going to the Carnegie Museum of Art. I haven’t been there in forever. Maybe since I dated John, way back when. And then again, I may end up doing a lot of nothing! But a long break leaves enough time for doing nothing too. So hopefully I’ll act on some of my grander plans.
I also haven’t read anything in a super long time. I have at least two books on the shelf that I haven’t started. I think I need to give myself a break from so much technology. Too much social media. Too many games. Too much iPhone obsessing. I think the longer breaks of the winter give me a good chance to step away from the technology at least a little bit. I know better than to think I could give it up entirely, but limiting the screen time I can definitely do and I need to. It becomes a weirdly habitual obsession for me. I don’t know if it’s because it makes me feel less alone or more connected to the world. Or if it’s just habit. I just know it becomes a mind number and I don’t like my mind being numb.
I’m experiencing numbness in my fingers and toes again, on another note of things I don’t enjoy being numb. It worries me because there has been no reason found for why it happens. It could be related to my blood sugar – which has been trending a tad high at around 116 instead of below 100 which is better for my health. I’m not sure I believe that a slightly elevated blood sugar should make my fingertips and toes numb. But there doesn’t seem to be any other good reason for it. So instead of stressing out over other more terrible things that could be causing it (things like MS? Yeah. I googled that.) Another reason to step away from the technology. And the truth is, I have put on some weight. I can tell by the way my clothes fit that my slacking on the healthy eating has had an impact. It’s so hard for me. I struggle with staying on the smoothie wagon but that’s the only way I’ve ever been able to get my blood sugar (and my weight) down. When I was religious about it after my first pre-diabetes test result, I achieved great results. I dropped pounds. I dropped my A1C and blood glucose levels too. The thing is, I continue to have an intense love of sugar. Cookies and sweets to be specific. And milk chocolate. And gelato. Lately I’ve been on a gelato kick.
I haven’t loved my clothes getting snug either. It wasn’t my intention to focus on losing weight, but when it came off as a result of the blood sugar diet it didn’t suck. Not having to stress about getting dressed because things just fit. All of the coats fit better. It was just nice. Now I’m in the snug place again and I’m not loving it. I’m fighting the desire to learn to accept myself at my chubbier weight. I mean, this has been a lifelong battle against hating myself when I don’t feel like I’m “thin” enough. And feeling OK when I am – which is kind of sad. But the truth is it’s not about the way I look anymore. I mean, in my brain it’s always about the way I look. When the clothes are snug, my mood plummets and I start hating myself. But the truth is what I should be more worried about when the clothes get snug is not how much I hate myself but the affect it is having on my health. It’s about the blood sugar. Not about the self-loathing. But the self-loathing is always the front and center thing that takes over my thoughts. When my thoughts should be about my health. And my numb fingers and toes. I try to talk myself into accepting my chubbier self and finally ending the cycle of self-loathing that has plagued me my entire life. But then a little voice inside my head says, “But your blood sugar…it’s been high. Do you want to have diabetes?!?” And I remember that chubbier me is not healthy me. So there’s that.
I guess at the end of the day it’s about how my brain deals – not whether or not I should get back on healthy eating because I want to stop hating myself because hating myself isn’t the issue. Diabetes is the issue. Being healthy and growing old in a good way is the issue. I have to find a way to believe that I look fine chubby or not. Nobody ever really seems to notice when I bulk up. My life generally remains the same. My fashion choices might require more consideration, but other than that, I look pretty much the same. But the time in my life has come when it needs to NOT be about that anymore. It needs to be about living a long, healthy, productive life. That sometimes gets lost in my messed up brain. Probably because I really don’t enjoy eating healthy. I don’t enjoy eating anything but milk chocolate and cookies, if I’m honest. And the occasional filet for dinner on a weekend. But eating healthy doesn’t make me happy. It never has.
Then again, neither does not being healthy, though. Or numb fingers and toes. So there you have it. And that’s why I’m sitting here drinking my kale, pomegranate and blackberry smoothie.
Being healthy ain’t easy.
12.30.14 Journal Entry
I’m finally giving in and turning to the journal.
I saw Cheryl today. I talked to her and it made me realize some things. I think maybe I’m lonely. How ludicrous is that? But I feel like I need a friend. And I’m not feeling like I have many. I mean, I know I have friends. But I’m not feeling all that close to any of them right now. I feel alone. Which I usually enjoy – but lately it’s been feeling oddly unpleasant in a way I’m not used to.
I’ve had all of this time off. I haven’t seen many actual humans lately. I know they’re out there. They’ve just not been available to me for whatever reason. Like now. I feel like I need a friend but I’m not sure who or what would help me. I’m passive aggressive that way I guess. Uncomfortable asking for what I need. Wishing that the people around me would somehow just know. But they don’t. And here I am.
I’ve been struggling lately. I feel off. My body isn’t acting like I want it to. I feel sore and achy all over. When I sit for too long I hurt, when I stand for too long I hurt. I try to stretch and move more but it doesn’t help all that much. I lack motivation for trying to exercise or move more – the truth is I lack motivation for anything at all.
Cheryl told me to maybe take less Prozac (I’ve been taking 20mg and I could just take 10) so I might try that. But this feels bigger than that. I feel something is off and I’m not sure what it is. I feel…low. Lazy. Bored but unable to concentrate. I haven’t been able to read or get into writing. I’m kind of just killing time. That’s a shitty thing to do, kill time. Time is so precious. And here I am wasting it.
I made an appointment to see an acupuncturist on Friday. My massage therapist suggested it. I’m ready to try anything to help with this crazy weird pain and stiffness I’ve been having. Maybe if I felt better physically I would feel more like myself. I thought it started with my fall, but I think it started before that. Maybe the fall just made it worse since even walking hurts. I probably should have gone to PT, but as you might suspect, I had zero motivation for that either. Something’s got to give. I’m not sure if it’s all connected or if my lack of feeling physically strong is affecting my mood. Or if it’s hormonal. Or something else entirely. That’s what is so maddening and irritating about the way I’ve been feeling.
I need to get out of my head. It’s a difficult place to be lately. Worry about the job and the future of that. Worry about these odd physical experiences I’ve been having. Worry about life. And knowing I need to make an effort to reach out to people I care about, those I call my few friends, but having very little energy for doing so. It’s a conundrum. I’m sitting here fighting back tears. I haven’t felt that way in a long time. Loneliness and me haven’t spent much time together lately. And I don’t like the way it feels.
Cheryl said today that this feels like a goal. To get me better. To get me feeling better. More like myself and less like the tired old lady I’ve been feeling like lately.
Maybe it’s some kind of strange mid-life crisis. Hormones. Who the hell knows but I have to figure it out. The truth is, I know I have to work through this alone. Alone is all you have really. I mean, friends and family are always important but you have to be able to live in your own skin, alone and calmly without constant support or company and be happy. I truly believe that. I believe I believed I had conquered this whole thing, if I’m honest about it. That’s why being here…in this head space, feels so overwhelmingly wrong.
Getting back to work will probably help. Or it could also make the whole thing a lot worse! I have to think that leaving the house in clothes that aren’t yoga pants and a thermal shirt (my time off uniform) will help in and of itself. Maybe talking to Sandy will help me. Maybe getting some physical help with these aches and pains will help. Maybe the writing about it is helping a little bit too.
Why is life so hard? It feels really hard right now. I’m sure tomorrow will be better. Today isn’t really doing it for me.
1.1.15 – Journal Entry
Here we go again…A brand new year. It always seems like such pressure. Time to change it up and make what’s wrong right or something. Time to re-evaluate and make changes to make myself a better person. I’m daunted by that. Cheryl said yesterday that this year my goal will be to get myself well. To feel better physically so that i can feel better mentally too. I feel weak. And I feel old. I need to feel like myself again. I need to look at every day as an opportunity to do things I love. To learn new things. To see things I haven’t seen before. I need to stop thinking of this kind of thing like it’s all too much work. I need to find my inner drive…energy for life. Energy for being…more myself. And less of this achy old lady I’ve been feeling like lately.
4.18.15 – Journal Entry
Today was porch cleaning day. And errands in the sun with the top down day. It was sunny all day and warm. I love driving around with the top down in the spring. It’s a nice way to get some sun without getting too hot – and we all know how much I love to drive and sing. It was a practically perfect day.
I’m mildly exhausted because I ran all over the place then had some heavy shit to carry into my house (three boxes of kitty litter, water) but the good news? I’m starting to feel stronger again. I have more energy for sure but the wobbly feeling I always have when walking and climbing steps seems to be going away. I’m not sure if it’s my trigger point therapist or the magnesium I’ve been taking or both – but it feels great not to feel so weak and shaky.
I am still thinking about going back to the gym. I think I would really enjoy lifting again. Strength training would probably also help my ankle get even better. And make me feel generally stronger and more…able, perhaps?
My tiredness right now feels good. Like a healthy tiredness instead of an old-person tiredness. I’m sure that makes no sense at all but it’s exactly how I feel. I’m looking forward to a night on the couch with kitties and my dvr. I honestly can’t think of anything better right now.
Thanks sunny day. I appreciate the whole experience of today. Sometimes even a rain lover such as myself needs a little extra vitamin D.
5.10.15 – Journal Entry
It’s Mother’s Day today and I’ll be heading to my brother’s for a cookout and celebration for the moms. Until then, I’m enjoying the relative comfort and happiness of my cool home – since we’re having a pre-summer hot weather spell that as you might expect, I am not enjoying very much. It’s too much too soon! Spring, one of my favorite times of the year, feels like is lasts for all of about 15 minutes anymore. I miss it. I miss the open windows. Hopefully I’ll be able to open them again sometime soon. Maybe even next week.
Things have been hectic but all in all pretty good. We lost a piece of business last week – the South Beach Diet business that was pretty much a terrible account anyway. But now my scramble begins to replace it. I have some things in the hopper that should help but closing deals in advertising is never an easy thing. It always takes SO long. I suppose because there is always so much money on the line and people are just not that quick to sign on the dotted line. I am thinking positively. I know some of the projects will land. But I have to keep the heat on these things so we don’t get to the point where corporate asks me to lay people off.
On the upside, I booked a trip to Italy for October! I’m going on a tour with other women, booked through a company called A Better Way to Italy – and I am beside myself with excitement. I love the idea of going alone – but not alone. I love the idea of meeting other women. Frankly I love the idea of exploring all the wonderful things Italy will offer without all of the baggage of what people think of me. Or even what I think of myself!
I’ve been feeling so shitty, physically, that it sometimes feels like I’m putting things off. Putting off living my life. I’ve always wanted to go to Italy – so now I’m going to go.
I want to experience Tuscany on my own through my own eyes and with my own lens. I am thrilled by this idea and simply cannot wait to talk to the women who host these tours – those two ladies who sold their possessions and moved under the Tuscan sun to experience a whole new way of life that they had dreamed of. A life with little stuff. But rich with experience.
Now most people who know me would howl at the idea that I would ever dream of living a life without my abundance of stuff. And on the surface, there are lots of reasons to see it that way. But when you look beneath the stuff, and when you really know me, you realize that I would leave this stuff behind if I felt like I could. What keeps me here isn’t the stuff but the people. While my mother lives, it would be pretty hard for me to leave here. I think my stuff is my way of comforting myself – my way of making the fact that I cannot leave this place because I love my people too much, and I love my cats too much – so I try to make THIS place the place where I can be happy.
But the truth is, if I could, I’d leave it all behind in a minute. Well. Maybe not a minute. But I’d go.
Some may look at this and say that I shouldn’t let my love of my mom and my family hold me back. This is my life. My chance to make it what I want it to be. But it’s just not that easy for me. My mother? To be honest, it’s her that makes me want to be here. I would miss her too much. I know I could stay in touch with my siblings and the kids – but for my mom…Family stays. Family sticks around. Family doesn’t leave. Even if leaving would make you happy! This is what keeps me here and keeps me accumulating stuff and building a nest HERE.
It’s not the stuff.
9.4.15 – Journal Entry
I took my first Pilates class today at a studio a couple of blocks from my house. I was kind of horrified by how hard it was for me to do the most basic of things. I’m slightly sore. And I’m going back tomorrow at 8AM to do it again.
Yes. You read that right. Eight in the morning on a weekend. I am probably also not in my right head. Maybe it runs in the family. But I want to try to feel better and Pilates feels like a good way to get better balance, more flexibility and better coordination in this body that feels like it’s breaking without any good reason why.
Yes. The rheumatologist didn’t find anything wrong with me either. So while I continue to feel like shit, there seems to be no good medical reason for it. I’m happy not to be sick. And I’m frustrated that there’s nothing obviously medical causing me to feel all of this stiffness and pain. Hence the Pilates. Of course, like most everything that I tend to like, Pilates isn’t cheap. So, there’s that.
10.3.15 – Journal Entry
I started to take one-on-one pilates classes recently, too. They are helping me feel better for sure. It’s more than a little intimidating and as you would expect, I am starting very slow. VERY slow. But my instructor Cheryl is so patient with me and super encouraging so she helps me not to be too hard on myself. And I am super hard on myself, but I am also really encouraged by the progress I’ve made at the same time.
Every time I go I get a little better. My balance has already improved a whole lot. I mean, compared to where I started that’s probably not saying much but every little bit helps. So I’m going to keep going and see what I can do. It reminds me a lot of what it was like when I first started working out with my old trainer Matt. I remember feeling so intimidated! Everything he asked me to do I balked and hesitated. Then I eventually got better and learned that I could do more than I thought I could do. This is a lot like that.
But I’m ten years older now and my whole body hurts just standing and sitting so it’s kind of like a whole new world of hard. I know if I stick to it things will keep getting better and better. So I’m going twice before I leave for Italy – and I’ll continue going when I get back. It’s important to me that I get more mobility back. I’m not doing this to be fit or to be thinner or to lose weight…I’m doing this to feel better and feel more capable, I guess you could say.
I have an easy week this next week before I leave. I work Monday and Tuesday and then I have hair day on Wednesday, Pilates and nails on Thursday…and then I leave on Friday evening! Then it’s off I go. Off I go on a grand adventure!
10.11.15 – Journal Entries – Florence, Italy
I woke up to church bells this morning and took a little, very little, stroll around the neighborhood.
After the continuous rain last night it was nice to walk in the cool morning air and sunshine. There is a leather open air market just around the corner from our hotel that was really nice to walk through. I didn’t buy anything mainly because I could have bought everything. I’m the person who loves it all! But needs nothing. I do think there will be some Italian leather goods in my future, however. I just don’t think I will be able to resist it all.
I slept quite well last night which surprised me. First of all, I never sleep in a strange bed very well. Second, no bed can compare to the overwhelming perfection of the puffy. And finally, my internal clock is all screwed up after sleeping for four hours or so on the plane and then the time change here. So I’d say night one is an unexpected success.
Our hotel is lovely. Very quaint. Very Italian. Not a chain – which is nice. Today we’re walking Florence! I hope I chose my shoes wisely.
…Later that afternoon
So now I’m freaked out. Here I am in the most beautiful place I’ve ever been. And I just had to stop walking because of my legs giving out. I literally had to get help to sit down. And now I’m not quite sure how I’m going to get down from here later. I have about an hour to wait for the rest of my tour group. I told them to go on ahead because I just wasn’t sure what to do.
So here I sit. Looking out over Florence. Wondering if I have some fucking disease that is going to render me crippled. That may seem like an extreme to jump to but then again not being able to walk is kind of an extreme thing. Fuck fuck fuck.
…Later that evening
Well I made it back to the hotel. On shaky legs, but I made it. I’m now currently laying with “legs up the wall” to test the whole “cures all” thing that people are always telling me.
I’m not a happy camper. I’m a really fucking pissed off camper to be straight up honest. This was not what I had planned for my Italian adventure. Not even close. I guess from here on out I try to keep up but also perhaps try to listen to my body signals more and stop before the breaking point. I’m not sure what else to do. I mean, I’m here now. I have to make a go of this somehow.
I refuse to miss out. I just do.
10.12.15 – Journal Entry – Florence, Italy
Today wasn’t as traumatic as yesterday. But it was still a bit much.
We walked all morning and got a history lesson while we went along. Our guide, Alexandra, was awesome. But shortly after we got started I knew it was going to be hard for me.
I stagger like I’m drunk. The best way I can describe this is feeling like my legs won’t follow the direction my brain is sending them. I’m doing my best to enjoy my time here in this amazing place. But I’m preoccupied with how shitty I feel physically. I wanted this trip to be transformative. To be about a zest for life. And it’s becoming more about a struggle to keep up. A constant fear of my body failing me. And wishing I could throw myself into a different body so I could just enjoy this trip more. I’m seeing amazing things! I just feel like I can barely keep up. And when we have free time – like now – I need to lay down and recuperate from the struggle of the morning. So I’m not doing as much shopping or enjoying of this town as I would have wanted.
It’s making me incredibly sad, I can’t lie. All I keep thinking is “what am I going to tell people when I get home?” And I’m mad at myself for even thinking about that. Why do I care? Because I’ll be forced to admit that this situation with my mysterious health problems got in between me and my ability to experience this gorgeous place in the best possible way. Which just makes me angry and bitter.
The ladies have been great. Very sensitive to my issues. But none of them have anything near as weird to deal with and they’re all a lot older than me. That seems to make me mad too. I’m just incredibly frustrated. And I’m not sure what to do about it. Or if anything CAN be done about it.
So there you have it.
10.16.15 – Journal Entry – Florence & Cortona, Italy
So I guess this is where I admit that I skipped Cinque Terre. I just knew I wouldn’t be able to handle it physically. And based on what the ladies said who did attend, made the right choice. But that doesn’t make me like it.
I’m more than a little pissed off that I can’t do things I really want to do. I like to pretend that I could if I wanted to – but it was proven to me on this trip that I can’t. I can’t keep up. And it’s not about being out of shape. Or I should say it’s not JUST about being out of shape. My legs are just not working properly and there has to be a way to get to the bottom of it.
I guess I’ll start that quest again when I get home. More doctors. More tests that are likely to not prove anything at all. It’s incredibly frustrating to feel like your body is failing you and to have no idea in the world why. It’s also incredibly frustrating to not be able to do all the things I want to do here in Italy. I mean, I’m in Italy for chrissakes! But I guess I can only do my best. I don’t want a repeat of what happened on rose garden hill (as I’ve come to call it). That scared the shit out of me, I can’t deny that.
I skipped Cinque Terre but now I’m in Cortona. And guess what? MORE HILLS. This entire damn region of Italy is basically one giant, steep hill. I wish I could do more. I wish I was better.
The accommodations here in Cortona are gorgeous. My room is large and gorgeously appointed. I have a bath tub! I may just soak in a bath later and try to get a more positive attitude about the day to come tomorrow. I will do my best. That’s all I can do. And while I’m doing that, I will continue to soak up as much Tuscan goodness as I can. This place is…magical. Like pages from a storybook.
10.17.15 – Journal Entry – Cortona, Italy
I had another not that great day with my legs today. I’m not sure why, because I had a pretty good night of sleep last night and rested thoroughly. But I could tell when I walked down the steps to breakfast this morning that something wasn’t quite right. Both legs felt like lead – very heavy and stiff.
I did manage to walk up the hill into the town to spend some time with the girls and see the sights of Cortona. We had a tour of a gallery where I purchased a cool piece of multi-media three dimensional artwork. But it was a lot of standing around listening to Yvonne, the gallery owner, talk about the history of the building etc. He was very engaging and charming, but I felt my legs wobble the entire time I was inside the gallery and was wishing for a chair. It seems that long periods of standing are not good for whatever it is that is ailing me.
Thank heavens for Jeannette. She is one of my travel companions who also has to rest a lot more than the others as a result of a recent broken ankle. While all of my travel companions have been super supportive and helpful to me during various times when I’ve needed either physical (or emotional) support, having Jeanette with me in the “I need to rest” camp has been super helpful. It helps me to not feel like such a freak, pain in the ass.
As usual, I’ve been super hard on myself about this whole thing. I’m letting myself take it easy when I need to – yet I’m not allowing myself to let myself off the hook for doing so. I mean, part of me wants to deny that there’s anything wrong with me at all and simply berate myself for a body that just isn’t as good or hearty as it should be at my age. The thing is, there is quite a bit of evidence to the contrary. The things that are happening to me on this trip – whether it’s something terrible like MS or something kind of awful like stenosis or back problems or whatever – it’s just not normal. Something is happening. Even if my primary care doctor and the rheumatologist failed to diagnose it. I guess I’ll keep up with the chiropractor while I get myself an appointment with my therapist Cheryl’s MS specialist. Then if that leads to naught, perhaps an osteopathic specialist? A neurologist? I’m not quite sure what makes the most sense. I guess I can get advice from my regular doctor and go from there.
As is typical for me on any trip of any kind anywhere (even a paradise like Tuscany), I am more than ready to be home. I have one more day in Florence when we get back, then I begin my journey home at the ass crack of dawn on Monday morning. Like literally, I will need to leave the hotel well before the sun comes up around 5AM Monday morning. But I look forward to that wake up call because then I’ll be that much closer to my bed, my kitties and my beloved home. But I will be full of the memories of this amazing, if rather exhausting, trip.
The women on this trip are truly wonderful. We have no less than three widows, including myself one of whom just lost her husband a year ago suddenly after a snorkeling trip in Mexico. Denise seems to be working through her grief in her own way – much like we all do. She is a lot older than I was when it happened to me (she is 60, so she was 59 when she lost her husband Doug). But the thing is? It’s just as bad no matter how it happens. There’s no “worse” way to become a widow. Whether you’re young or old. Married for 30 years or less than 3 like me – it hits you like a Mac truck either way. Denise is a prenatal nurse who works with a ministry that supports women who choose to (or are forced to) give birth to babies that don’t survive. She is what is called a hospice ob nurse. I can’t even imagine such a thing.
It made me wonder…did the sudden loss of her husband lead her to some strange attachment to death, which made her comforted by the constant presence of death and sadness in her everyday life? But no. She had been working with this ministry for 6 years before she lost Doug. She said she became a Christian at 30 after meeting her husband. She seems to be very passionate about her faith but in a quiet, non-obnoxious way that some newfound Christians tend to be. She is an extremely appealing person, very sweet and concerned but at the same time rather aloof and a bit detached. She’s been very supportive of me with my health concerns on this trip as well as with a few of the other woman who are struggling in their own ways. She is quietly funny. And very very pretty. When she told me she was 60 years old and had grandchildren, I was flabbergasted to say the least. She also seems fiercely independent like me – but she was much more comfortable in the partnership/couple unit than I ever was. I guess she is an example of how you can be one and the other. To be honest, I’ve not run across very many examples of that in my lifetime.
Jeanette, one of the other woman travelers is also an interesting perspective when it comes to partnership with her husband. She was talking about how she wanted to travel alone this time to make sure she could! She said, after being with her husband for so long, she gets to the point where she feels like her brain just stops thinking for itself and merely follows his lead. She called it something specific – a military term her husband shared with her…something like “dumb following.” Where you get in line and take the lead of the person in charge (or the person who has the strongest opinion or personality – what have you) and find yourself following them from here to there quite content to be led. I can relate to that in many ways – the 20-something me was always looking to be led. And even as fiercely independent as I am now, being led feels like a luxury that I wish I had more often. Maybe it’s because in my work, I am most often the leader, very seldom the follower. It gets exhausting after a time to feel every decision weigh on your own shoulders. It makes being led look very appealing! And at the same time? I know it wouldn’t appeal to me for very long.
Another woman on this trip I’ve felt an instant connection to is my new friend Cathy. She is very tall with long blond hair and pretty blue eyes. She is always worrying that she doesn’t have the right outfit on even though she is very tall and thin and so much prettier than the average bird. The other thing she keeps stressing about is that her ankles have swollen up so much that they make her look like a monster (sound familiar?). She is divorced. Also older than me at 53 but she looks a whole lot younger than that. She is as sweet as sweet gets. Always looking out for me, asking me if she can help me, making sure I have what I need and am taken care of. She recently sold her house and rented a condo on the beach. She called it her “midlife crisis” move. The water made her feel calm and she loves the beach and the views of the ocean from her new “home.” She also hasn’t dated in a very long time. She jokes that she seems to find only sociopaths and jerks…and I guess I kind of related to that part too! She has a grown son who recently got married. And works at home mostly as an IT consultant.
Cathy can’t stop moving and always needs to be going. She says she feels like she will miss something if she stops or stays inside. She needs to be out among people! Maybe because she so often is at home working alone. To be honest, because of my limitations on this trip I’ve had to miss out on more than my fair share of group activities. Tours that were too strenuous for my legs to handle. Or sightseeing expeditions that I had to bag out on because I just felt too worn out. Today, after a brief hike up the hill to town and not feeling all that swell once I got there, I chose to come back down and take it easy this afternoon. I guess I felt like I was missing out? But I also love the time alone. I felt the same way in Florence the day I decided not to take the journey to Cinque Terre. I felt sad to miss out – but I was also content to be in my room sleeping. Maybe it’s the depressive side of me? When I just want to do nothing and go nowhere and sleep even when I’m in a fantastic place where there’s something new and exciting around every corner.
In times like those I wonder…Maybe this depression thing will be my partner for the rest of my life. Maybe being content to do nothing and be alone is a reflection on my fear of not being able to keep up. Or my insecurity in strange places. Could it be that? Or do I just really enjoy my solitude? Is a languid slow life the kind of life I crave? I just texted with my mom and told her that, not surprisingly, I am more than ready to come home. And she said, she feels the same way! She wants me home too.
She said to me the other night, “Why must you keep running around like this all over the place? Why don’t you just stay home?” And I’ve been thinking about that ever since. Sometimes, a lot of the time really, my urge is to do just that. My urge is to stay inside, where I risk nothing and fear nothing, and just read my books and cuddle with my kitties and revel in my solitude. I make myself get out…go to work, go out to social events with friends, or take trips far, far away from home and far outside of my comfort zone…I make myself do these things sometimes whether I really want to or not. Maybe I do that because I’m afraid not to.
What happens when you stop forcing yourself outside of your comfort zone? Outside of the quiet and familiar? Well. Maybe a big part of me is afraid that when you stop doing those things, you run the risk of just stopping altogether. Just. Coming. To. A. Stop.
Maybe that, above all, is what I fear the most. And why I’m here now.
10.18.16 – Journal Entry – Florence, Italy
So the end of the visit to Cortona was better. I made it easily up the hill for one of the best dinners I’ve ever eaten last night. Hung out with the girls after dinner and had my first limoncello. Now I’m back in Florence for one more night before I leave for home super early tomorrow morning. My flight is at 7am so I have to leave here by 5am. Yeah. That’s gonna be super fun. Ugh.
Denise and Maureen are still in town so we’re going over to the Westin where Denise is staying and having drinks at their terrace bar on the roof. It’s supposed to be awesome. One last long walk around Florence then early to bed for me. This has truly been the trip of a lifetime. It had its challenges – for sure. But I am leaving here happy and proud of the fact that I took care of myself and I tried. I also saw some of the most amazing places I’ve ever seen while on this trip. And met some pretty great people. Some of them I’m sure will remain friends once I am home and back to my real life.
I can see myself coming back here again someday. Maybe for a longer visit? The Italian countryside is truly heaven. I felt happy there.
So one more night out – and then the long journey home begins. I’m glad I made this trip. I think I am better for it.
10.22.16 – Journal Entry
I have an appointment with a neurologist on November 3. I guess the thing that scares me more than finding out I have some terrible condition that’s causing these leg problems is finding out that I don’t. And then back to square one.
All I can think about is my father. He doesn’t walk much. He spends most of his life in a chair. When we chide him about it he says “I can’t.” He claims he hurts. We all give him grief and say it hurts because you don’t do it. Move more. Feel better, we tell him. But what if we were (are) wrong? What if it really does hurt? What if we have the same thing? The same mystery pain that causes problems with walking, moving, doing normal stuff. This haunts me more than just a little. What if the neurologist tells me I’m fine. Then what? Because I’m not fine. And maybe? Maybe my dad wasn’t fine either.
But I guess I have to take the step to find out. Then go from there. And try not to obsess about it. Because you know I’m obsessing about it. It’s pretty much all I can think about. I’m afraid I guess. I’m afraid of not being able to do simple things. Or keep up on my next trip – or take a next trip. I don’t want to be superwoman. I just want to be normal.
10.29.16 – Journal Entry
So because the universe hates me, my cat Ivan’s been peeing on the couch since I came home from Italy. The vet says he’s ok. I bought three of those Feliaway diffusers to help him feel calm. But the behavior has continued. To say it’s making me crazy would be an understatement. Anyone who knows me knows how paranoid I am about my house smelling like cat. I honestly can’t bear the thought. And yet here I am.
Oh. And here I also am on another plane heading to Atlanta for a damn party of all things. I mean. For real. To say this is a bad time for me to be traveling is also an understatement. I’m all about the understatements today, it seems.
I’m counting down to when we arrive and I get to remove my damn compression stockings that are cutting off the circulation in my calves. It’s gonna be a long day.
11.8.15 – Journal Entry
So, the battle of the cat pee on the couch seems to have been won for the short term. I only have one pillow that I’m struggling to get the stink out of. It is currently drying atop the cabinet in the dining room after being doused one more time with this stuff called No More Marking from a company called Nature’s Miracle. If this doesn’t work, I guess I’ll toss it back in the washing machine. And then toss it in again. Whatever it takes to save my precious leopard print upholstery.
It’s Sunday morning. I have the Sunday Morning Show on in the background although it is bordering on Sunday afternoon. Alex came over last night and helped me hang some new sheers in the living room so it looks warmer and darker in here. Which at this time of year is something that appeals to me for some reason – no matter how bright the sun is shining outside. I’m committed to sticking to my seasonal goal of switching out all of my home colors and textures for fall – no matter how much harder that is now that I’m not 100% able to do all of it myself. I’m still struggling with this weird leg/back problem. I visited a neurologist last week who order three MRI scans of various parts of my body, including my brain, to finally see what, if anything, is actually causing all of these weird symptoms. I wake up multiple times throughout the night because my hips hurt. Or my legs hurt. I switch positions and close my eyes again in hopes of getting the sleep I so desperately love and need. I suspect it’s why I feel tired all of the time. I’m sleeping but I’m not sleeping well because everything hurts. It feels better once I unfold myself and get out of bed…but once I’m up, I feel better for the time being. The when I’m up for too long, my knees start to ache and my legs sometimes shake. I feel an overall weakness I can’t really get used to. I have a list of chores and things I want to do, but I’m not all that confident that I can do them. I have to tell you, it sucks. I keep trying to convince myself that if I ignore this and pretend that it’s not actually happening it will go away. But it doesn’t. And then I feel worse.
I saw Cheryl last week finally and I sat in her office and cried. She uttered the words I couldn’t…I’m so scared. I’m afraid of everything. I’m afraid of something being terribly wrong. I’m afraid of something NOT being wrong and there being no physical reason for these symptoms I’m experiencing. I am afraid that I will feel like this for the rest of my life and I don’t want to even think about that. I always joke that I want to live to be 120. I want to be old and crotchety and walking the world, however, slowly, just to be a part of things still, somehow. Feeling like this, I hesitate to think what I’ll feel like at 78 if this is what I feel like at 48. And that depresses the hell out of me. Then I get afraid just thinking about the fact that I live alone! I have nobody to take care of me. I only have me. I am already putting off taking a shower because getting in and out of the shower is hard – because of that stupid giant tub I have, it takes a big leg lift to get in and out and of course, it’s wet, so it’s slippery. I hate doing it because I can actually see myself falling and hurting myself even more. Naked no less. Who wants to be stuck naked and in pain on their own bathroom floor? It’s not easy to admit this. How afraid I am. I bury it deep down, below the surface so I can joke about this and get through each day. I know there are people out there suffering a whole lot worse than me and I tell myself to suck it up. Stop being such a chicken shit. As you can imagine, feeling badly then beating yourself up for feeling badly is a pretty ironic one two punch that has the effect of making you feel even worse. I’ve been taking a higher dose of Prozac this last week in attempt to help myself control the cycle of negative and obsessive thinking. That’s how my depression presents itself…I’m not able to stop thinking about the things that scare me the most. It’s troubling. The drug helps. Most of the time.
I’m watching a segment on the Sunday Morning Show about stone carvers. It’s overwhelming to me to think about a task so daunting. To carve each letter of a message, a name or a dedication into actual stone. By hand. Watching the craftsman doing it gives me anxiety. What if you make a mistake? How long it would take to finish something so basic as a list of names or a short poem! Hard work has always daunted me. Physical work, things that take focus and physical dexterity – those are the things that stress me out the most. I’ve never been one to take on that which I perceived as very difficult. It took over a month to etch 2,000 plus words on stone – and when there was a mistake made, they had to grind it out and start over. I mean, just think about that! But the upside is, these men have created work that will survive them. It will survive man, through war and peace, as he said, to remain in place. A piece of him is there – through it all. So therein lies the reason why such tedious, hard work is a worthwhile exercise to him. I admire that kind of perseverance. It impresses me and makes me wish I had more of that inside of me.
So my list of things to do today starts with the simple…taking a shower. Then I’m going to drag some winter coats to the dry cleaner to get the smell of moth balls out of them. Maybe making a run to Target to buy water for the week. I’m super excited because my mom is making dinner tonight. I love when it’s dinner night at Meem’s.
I’m going to focus on that.
11.10.15 – Journal Entry
I’m struggling. I just don’t feel ok. I feel confused. Lost. Unfocused. Distracted. Sad. Nervous. Afraid. I feel like this skin isn’t the right skin to be in right now. I don’t even know how to describe it better than that. I want to sleep. But sleeping hurts. I want to buy something to fix it. But the things I’m buying just stress me out. Because I’m spending so. Much. Money. I know I need to stop. But I don’t feel like I can right now.
I’m not myself. Every morning I get dressed and it doesn’t feel right. I don’t even want to put on makeup. I feel raw and I guess I want to (need to?) look that way too. It’s very strange. I feel anxious. And I feel tired.
I feel sad. Empty and overflowing at the very same time. How did this happen? I thought this depression thing was under control. I thought I had this. I guess I kind of forgot about it. That I could feel this way. That I feel this way. That it’s always kind of there. Around the corner. Even when I think it’s gone.
Am I that person? That sad, scared person? I feel like her. I feel like myself is lost. Somewhere. Or maybe this is myself and I’ve just been ignoring her.
I guess I have to believe I’ll get better again. Once I learn what’s happening. If anything is happening. And if nothing is happening, then I have to figure out how or why this is happening. These physical manifestations of pain. Maybe it’s all the depression. Or maybe it’s not. It’s really hard to know from smack in the middle of it.
All I know is…I have to try. Tomorrow I need to get to work early. I need to kick into gear. Try to focus. Try to get out of the house not feeling like crap. If that doesn’t work, I have to get out of the house anyway. Shit. I have to work to pay for the crazy amounts of shit I’ve been buying lately!
Isn’t that the bitch of it all.
11.13.15 – Journal Entry
I called off sick today. Haven’t left the house to do much more than take out the trash. And while I was lounging about trying not to focus on how I feel, there were terror attacks on the city of Paris. More than 100 dead. It boggles the mind. Shooters in four locations. Silently killing people. Saying nothing. It’s horrifying.
I keep thinking…maybe if I just act like nothing’s wrong, I’ll just be ok. Get up and walk! Force wellness. Don’t let whatever is happening happen. Then I remember. That’s kind of what I did in Italy. When I ended up sitting alone on a hillside until my legs would work properly again. I honestly don’t know what to do.
Go back to Pilates probably. Which I also haven’t done. Something is preventing me from wanting to get back to it. I just feel so…discouraged. Sad. Depressed. Something.
And there you have it. Terror in the world. Sadness in my heart.
11.24.15 – Journal Entry
Happy anniversary to me and Chuck. I still can’t not think of it on this day. How crazy different my life would have been had Chuck lived.
How many things would be entirely not the same. It’s a bit mind boggling. Sad? Maybe. Scary? Definitely. Life is so…hard to grasp. Just when you think you’ve figured some shit out – there it goes. Giving you a smack upside the head to make sure you truly understand that you understand nothing. It’s changing all the time. And laughing at you while you pretend to have breakthroughs about the meaning of it all.
There you have it. Now I’m going to bed.
12.1.15 – Journal Entry
Dr. Smolar called today with results from my MRI. He said he sees lesions on my brain and cervical spine. He thinks it’s likely that I have MS. But I have to have a spinal tap first to confirm the diagnosis.
I’m trying not to freak out. I’m trying not to be in denial. I’m trying not to cry and be dramatic. I’m failing at pretty much all of those things on the inside. But handling them fairly well on the outside.
I’m afraid and relieved at the same time. I’m relieved because now I know I’m not losing my mind. I do feel shitty and there is a real reason why. I’m afraid because…what if this just means I always feel shitty now? Like for always? What if I can’t walk some day…
What if. A lot of things. I just have to stop going there right now and get some sleep. It’s late and my spotted brain is tired. There will be plenty of time for panicking.
12.5.15 – Journal Entry
I’ve been trying to get my head around this situation. And I have to tell you. It’s not easy. I can’t grasp the idea that I have a chronic illness. Let alone the idea that it could be really bad. Like really, really bad.
I tried not to google. I really did. But the thing is? It’s almost impossible. And everything I’m reading tells me that the answer won’t be good. Lesions on the brain and spine. Plus my symptoms. Numbness. Weakness. Trouble walking. Balance and coordination issues. For all of those reasons I am scared to death that this may be the primary progressive form of this disease and I have a pit growing in my stomach that is hard to control.
I don’t want to let it take over. I want my brain to convince my body that I can be fine. That this can be controlled. Medication will be possible. Treatment can be developed and carried out. I can live with this disease in a fairly good way. My brain is trying to convince my mind and my body that this is possible. And likely. And what will, indeed, happen.
But my brain is failing to accomplish that. My brain is telling me this is going to be bad. Real bad. And the spinal tap on Wednesday will only prove that to be true.
Please God. Let my brain be wrong. I’m afraid.