I wanted to give a quick update on my health situation since so many of you commented on yesterday’s post about coughing up blood. Thank you to all of you who sent your thoughts and prayers. I did end up going to Urgent Care, where they did a chest x-ray and came to the conclusion it was bronchitis. So I’m on antibiotics yet again (the third time in the last few months).
I’m a little freaked out today. I’ve had a chronic cough for years, which we have always contributed to sinusitis and my chronic sinus infections. But today for the first time, I actually coughed up blood. I’m not sure if I should go to Urgent Care or if it is really that big of a deal. I may have to contact my doctor to see what she thinks. My chest hurts too, which concerns me even a little bit more. So needless to say, I’m not up for writing a long post today.
Not feeling very good today. A lot of it has to do with physical stuff. My back has been really messed up for a few days now. I’m not sure if it is the degenerative disc disease or the slipped disc causing the awful pain in my neck and back, but it is starting to take a toll on my mental health too. I find that even when you are doing fairly well mentally, that if you are in chronic pain, it is almost impossible to keep your mood high.
I did hear back from our health insurance that they approved my epidural shots for my slipped disc, but I have to pay hundreds up front for the deductible, so I’m not sure when I’ll be able to afford that. I’m also quite nervous about getting the shots anyhow. Having a needle stuck into my spine is scary.
The past couple months I have been all over the place emotionally and mentally. I plan to go over all this with my psychiatrist when I see him later this month, but felt I would share here some of what I’ve been going through.
It is kind of weird because I have had several bouts of certain types of emotions/feelings that were overwhelming and lasted at least a few days to a week. For around a week last month, I had a real issue with rage. Not just anger, but pure rage. I hate it when I have these rages, because I normally end up taking it out on myself or my things because I don’t want to inflict it on anyone else but have to get it out somehow. Sometimes during these rages I destroy personal things that I later regret. I don’t cut or do anything physical that leaves real scars, but I do sometimes pinch myself or dig my nails into my skin as hard as I can, just to get the anger out and because acute physical pain can be a way to distract yourself from intense emotional pain.
A few weeks after the rage phase, I went through an odd type of paranoia. I just kept having nightmares every night, one after another. All of the nightmares were either about home intruders or something scary chasing me. The first night it started I had a full night of nightmares about home intruders. I became so paranoid I had to get up and double check all the locks in the house and make sure every door was closed and locked between the outside doors and my room. I was tempted to sleep with a knife nearby (which I actually have done in the past when I was afraid of something like this), but instead, I settled on sleeping with my phone next to me. I have never been a victim of a home invasion and currently live in a safe neighborhood, so this paranoia seems odd to me.
This past week I have actually had a positive upturn, where I have felt fairly happy and almost a little hopeful. These extremes of emotion I have felt recently do make me wonder if maybe the bipolar diagnosis is correct. I have never really understood why I had these rages and paranoia episodes, but if I am truly bipolar, that probably would explain it (although my PTSD could easily be a culprit as well I suppose). It is tempting once these episodes are over to make excuses for them or to try to convince myself they weren’t as bad as they really were, but that is being dishonest with myself and won’t help me learn to deal with these problems in a healthy way.
Yesterday I was supposed to go to therapy, but I was feeling really sick and ended up calling off. Whenever I have to do that, I always end up feeling bad, like it is my fault that I have these health problems and often have to cancel appointments or activities.
Honestly, nowadays I don’t even schedule much of anything outside of medical appointments because I would rather not plan anything than have to feel like I’m letting myself or others down if I’m too sick, depressed, or anxious to go. It really isn’t a fun way to live, and it frustrates me. I often feel like I’ve almost given up on living a normal life and that saddens me.
On the plus side, I am fortunate to have a supportive husband and still have a place to live and food to eat even though I am too sick to work a regular job. I really don’t know how people like me make it without support, especially since it can often take years to get any help from disability. If I had tons of money, I would spend it helping out those who are in similar predicaments, whether they struggle with autism, mental illness, physical illness, or a combination of all of the above like me.
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
I’m not going to call it a resolution, but I do have a goal for the coming year that I hope to work on, and somewhat it was inspired by my last visit with my psychiatrist. You see, I spend far too much time worrying about what would happen if my husband were to pass away. I have very good reasons for worrying about it (fear of homelessness being top), but it has almost overtaken my brain in many ways, probably partly due to OCD and partly just because it is my deepest fear.
Due to this fear, I feel like I have not even been enjoying the time I do have with my husband. I live in such fear of something happening to him and being left alone, that I almost live as if he is already gone sometimes, and that needs to stop. From now on, to the best of my ability, when those horrifying thoughts intrude of something happening to him, I will try my best to redirect my thoughts to thankfulness for having him in my life and for the good things we share right now. I know that won’t stop the fear from coming and it will probably be something I always struggle with, but if consciously choosing to appreciate him now means that we grow closer and both of us feel better, why in the world wouldn’t I try to do that?
– Art by Maranda Russell