I am not afraid to die –
but I am not yet
unafraid of living.
I’m not sure I have ever written truer words than the 3-line poem above. This little gem came to me while taking a bath last night, so I repeated it to myself like a mantra until I got out of the tub and could write it down.
It is true that I am not afraid of death. I am a bit afraid of the actual feeling of dying, mostly because of the instinctual anxiety I fear it would bring. However, I am not afraid of being dead. In fact, I rather look forward to it. If there is something after death, it will be awesome to explore and find out what else is out there. If there is nothing after death, it will just be like the times I have passed out or been put out for surgery…simply a loss of consciousness which often sounds like a relief in itself. No more worrying. No more pain. No more anxiety or depression.
However, living is scary. Knowing I may have years and years of dealing with anxiety and depression ahead of me. Knowing that I will likely suffer from chronic pain and chronic illness until I die. Knowing that my degenerative conditions will likely worsen with time. Fearing that my husband may get sick or die and I will be alone. Fearing financial ruin. Fearing homelessness. Fearing potentially abusive situations. Fearing the entire planet going to shit (a justifiable fear from my point of view). Fearing that I may end up committing suicide if life becomes unbearable (not the ending I would desire for my life).
It’s been a rough week physically. I had a CFS/ME flare-up, which feels a lot like mono if you’ve ever had that, or the worse flu you can imagine. During these flare-ups, I run a fever, my body aches horribly, I feel too exhausted to move, too exhausted to breathe, and if I sit up or stand up long, I feel faint. Trying to do the simplest tasks is overwhelming and can make me feel like passing out, even just putting up my dishes or trying to take care of my personal hygiene.
Yesterday I was finally feeling well enough to get out and since the weather was warm, my husband and I went for a picnic at a local park. We got subs and then after eating, walked the short distance to the lake edge. As you can see, it was pretty darn muddy:
I’m glad we went, because I needed the mental distraction, but now I am really sore and exhausted from even that short bit of activity. Trudging through the mud really wore me out because the mud sticking to my shoes made my feet feel like they gained 10 pounds, and I almost slipped and fell a couple times. It probably wasn’t the brightest idea to go, but mentally I needed to feel alive again, even if just for a little while.
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
I’ve been feeling rather sad and isolated the last few days. I think a lot of it comes from the stress of dealing with chronic illness and chronic pain. Anyone who has chronic illness is probably familiar with spoon theory, an illustrative way to describe why you have to choose carefully how to use your energy to do things when you have very limited physical ability.
In other words, sometimes you have to choose whether you would like to go out and socialize for a short period of time, spend that energy getting some much-needed housework done, work on a hobby or personal interest, or even simply take a shower…because you just don’t have the energy and the physical ability to do them all within the same day like a healthy person could.
Most of the time I end up choosing to spend my “energy” and limited abilities to either spend time with my husband, work on my art/writing/blogging, or take care of personal hygiene or light housework. Prioritizing these things leaves no extra energy or time to socialize on a wider scale or do much outside of the house, other than maybe occasionally going out for dinner or doing a little necessary shopping. Even the thought of going to a movie is often too exhausting to contemplate.
All of this makes me sad, especially when I remember how I used to enjoy so many other things I can’t do any longer. I used to love hiking, playing tennis, roller skating, bowling, dancing, working, swimming, being a foster parent, and going out to various activities with people I know or share interests with. I’ve pretty much lost all of that for good. And that is depressing.
Our water heater sprung a big leak, so today I’ve been stuck at home waiting for it to get fixed. The hallway carpet was soaked through before we noticed the leak, so trying to dry that up has been a hassle as well. I really hope it doesn’t cause mold to grow where I can’t get to it 😦 That is the last thing my overly sensitive allergies need.
They had to drain the water heater before trying to fix it, so no hot water until it gets fixed and fills up again. It is funny how most days I put off taking a shower until late in the day, but when I can’t take a shower, it is ALL I want to do lol. I feel dirty, grimy, and disgusting, even though I know that is mostly in my head, since I took a bath yesterday.
I had to cancel my therapy appointment for today due to this annoying new development in home ownership, but that is ok, I really wasn’t feeling much like talking today anyhow. I don’t know if it is the stuff going on with the water heater, the rainy, bleak day outside, or just my ever-changing mood, but I’m feeling rather apathetic and blah today.
I want my hot water back!!! Waaahhhhhhh!!!!
Hi everyone! I wanted to write a short post just to say that I might be MIA this weekend (and maybe longer, who knows?) because I am having wisdom teeth surgery tomorrow. The teeth are impacted and oddly placed, so unfortunately, it isn’t expected to be a simple tooth-pulling operation (which definitely shows in how much I have to pay for it lol). Thank goodness they put you out for it!
I’m sure I will be fine, but as those of you with chronic illness/pain know, nothing is ever easy when you have autoimmune issues and inflammatory conditions that crop up every time your body is put under any kind of stress. I am hoping it won’t lead to a major flareup of my fibromyalgia or CFS, but I am preparing for the worst just in case.
I hope you guys will keep me in your thoughts and prayers (if you do that kind of thing). I could definitely use some positive energy sent my way!
Sometimes I worry that I come across as too negative or focused only on the bad on this blog. It is really a fine line to walk, because as someone who is chronically ill, constantly feeling sick, and dealing with several mental health issues, it can often feel like the negative in my life does far outweigh the positive. Most of the things I used to love to do (hike, play tennis, roller skate, go dancing, etc.) are now virtually impossible for me. I haven’t been able to work in a couple years and even when I did, I was constantly in trouble for missing work due to health issues. I used to find a great deal of meaning in being a foster parent, but there is no way I could handle that anymore either. I feel like I’ve lost SO MUCH that it is hard to cope. I’ve always struggled with anxiety and depression, but since becoming sicker and sicker physically, the levels of those mental issues have skyrocketed.
I want to be honest on this blog above all else. Even when it hurts and even when it is ugly and dark. However, I don’t want to give the impression that there are never good moments in my life. There are times my husband makes me laugh uncontrollably. There are days when I do feel well enough to go out to eat or browse through a bookstore. Sometimes I get to watch a tv show I’m addicted to and excited to see. I still get to paint and play with art materials. My crazy cats continue to be crazy and adorable. It isn’t all bad, and I am grateful for the good times, but most days are a struggle and I don’t want to lie about that either.
* Art by Maranda Russell
Having CFS/ME really sucks sometimes. On Tuesday I went to my traction physical therapy appointment for my bulging disc in my neck and they asked me to do a few minutes of really easy, simple exercises that should have been a breeze. Instead, here I am, 35 years old, looking fairly healthy and fit, and yet, I had to constantly take breaks from even these few little stretching and postural exercises. It makes me feel like I’m really living in an 80-year-old body.
It is embarrassing as well, because I fear the judgment of those who see how little I am actually able to do. I worry they will just judge me as lazy or think I am just being difficult, which is entirely the opposite of my personality. I’m the kind of person who goes out of their way NOT to cause trouble or slow things down. I often wish other people really understood how crippling chronic fatigue syndrome can be. For instance, all my adult life I ALWAYS took a shower every single day and washed my hair. Now, I’m lucky if I can find the energy to wash my hair every other day, even though my OCD traits are going crazy at the change in my lifelong routine. Even typing these blog posts requires frequent breaks.
Sorry if this post seems a bit whiny, it just sometimes hits home over little simple things, how much my life is affected by my new physical limitations, and it is hard to accept.
* Art by Maranda Russell
Hello everyone! So today I’m sharing a book review vlog video I made yesterday. For anyone who has Chronic Fatigue Syndrome, Fibromyalgia, or similar chronic illness, or who has a special interest in those subjects, this book might be something you would want to check out! If you have already read the book, let me know your thoughts!