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.
Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.
Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).
I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.
Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).
Tomorrow morning is my SSDI hearing. I’m super anxious about it. I feel a little nauseated just thinking about it. I’m afraid I’ll do or say the wrong thing. I’m afraid I’ll burst into tears and feel embarrassed. I’m afraid I’ll somehow misrepresent my reality. I’m afraid the judge will say no and ruin my foreseeable future.
I know the judge probably won’t even give a straight “yes” or “no” answer tomorrow, but that makes it even worse because then I have to wait who-knows-how-long in suspense and worry. I hope I’ll feel better when it is over, but knowing me, I’ll probably spend the next few months picking apart the experience and everything I think I did wrong until I get an answer.
I’m a paper doll
with third degree burns.
Dress me up,
make me pretty,
and please, simply ignore
all the raw, peeling flesh
falling onto the floor.
(Poetry by Maranda Russell, marandarussell.com)
I’m still struggling with bad neck pain. Yesterday it felt a little bit better, so I figured I would try to get out of the house for the first time in a while (other than ER visits). Unfortunately, once I got in the car, the vibrations from the car itself and the movement from driving kicked the pain back into high gear. I did at least make it to Wendy’s so my husband and I could get some dinner, but then it was straight back home because I was in too much pain to do anything else.
Honestly, after two weeks of these headaches and severe neck pain, I’m starting to worry this might be a long-term problem, just like my right shoulder blade and the arches of my feet. I’ve been incredibly depressed the last few days, partly because of the pain itself, partly because I can’t do much of anything, and lastly because I worry if my body continues to deteriorate at the rate it seems to be going, I may eventually become completely home-bound. I believe that all these chronic pain issues are mostly related to my Ehlers Danlos Syndrome, which sucks even more because there is no cure for connective tissue disorders 😦
I’m still struggling with migraines, but am starting to think that they might actually be cervicogenic headaches (caused by issues in the neck). The last few days, the left side of my neck has been visibly swollen and extremely tight, causing a great deal of pain. I can’t help but notice that the worse the neck pain is, the worse the headaches, nausea, dizziness, and fatigue become as well.
One person on Facebook who also suffers from Ehlers Danlos even suggested that perhaps the migraines may be due to a chiari malformation or craniocervical instability, which are both common issues associated with Ehlers Danlos Syndrome. I have wondered about the neck instability possibility, as I often feel like my head is excessively heavy, not supported well by my neck, and sometimes bobbles around almost like a bobblehead. Whenever I sit for long, I have to have a neck rest because my pain worsens quickly if I have to hold my head up without support.
Unfortunately, it looks like if instability is the issue, the answer might be this huge, horribly-uncomfortable-looking neck brace that looks like it would be sensory hell for me. Of course, I do know from a prior MRI that I also have degenerative disc disease throughout my cervical and thoracic spine, and at least a couple herniated cervical discs. Whatever the issue, I wish it would clear up soon! This is miserable and I feel like I am living on NSAIDS, muscle relaxers, and Lidocaine right now.
You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.
Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.
This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.
I kind of wish I had mentioned some of those things now. Maybe next time.
This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:
Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.
Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!
Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.
Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.