Yesterday my wife had finished taking her Nclex boards (to get officially licensed as an RN Nurse), so she had the day off after she was finished. When she got home, we ate and spent some time together.
I know this sounds corny, but we were watching some “Leave it to Beaver” episodes on Netflix (I LOVE Netflix by the way). That show is so old (it is in black and white), but I still think it was such a great show. In fact, I wish real life was so innocent and nice as it is portrayed in that series. For those of you who don’t know what I am talking about, it is about a small boy “Beaver” and all of his mischievous things he manages to do in each episode. I know, a bit geeky for a couple of 20 somethings to watch, but oh well.
Anyway, after we watched a couple of episodes, my wife suggested we visit the local park. I had previously been wishing I could get out to get some sun exposure anyway, and I was a little tired of staying indoors all day for the past few weeks, so I agreed to go.
So we got in the car, and off we went. I didn’t take a Zyrtec before I left, for a couple of reasons:
- I usually take the Zyrtec-D because it isn’t quite as powerful and doesn’t make me drowsy, but last time I took it I actually did get drowsy. It kind of ruined my whole entire day, as I was so sleepy I could barely focus.
- And most importantly, they haven’t been stopping the hives lately at all. So the way I look at it, I may as well not take them if I am going to feel like crap (sleepy) and still get hives.
Anyway, we finally got to the park and walked around for a while. It was cloudy when we left, so I was glad and thought I could get some outdoor exposure without getting baked at the same time.
Knowing my luck, the sun came out full force after a few minutes. I was fine for about 20 minutes while we watched the ducks play in the water, and I tried to stay in the shade as much as possible. I didn’t even get prickly.
Then we walked down to another area, and the sun was beating on me the whole way. As we stood there, I started to feel it coming on. I can always sense an attack, because my entire skin gets this sensation on it. I call it my “Spider-sense” like in Spider-man. It started as a couple of pricklies on the back of my neck. I told my wife, “Oh no, I am getting a little itchy.” I could feel the Cholinergic Urticaria trying to creep its way into my flesh.
I backed off into the shade to try to dodge the attack. It didn’t work. The sun was still shining and seemed to even intensify a bit, and the shade wasn’t helping. Then it got worse. The stinging feeling starting randomly popping up all over in random spots. It feels like I get pricked with a small needle, and then it itches really badly for a second afterward. This all happens really fast, and it moves from one area to the other.
This cycle continued, and it kept randomly popping up all over. I started to scratch, and scratch, and scratch. First my head, then my chest, then my back, then my forehead, and on and on.
I started to get really annoyed. My wife could see the frustration on my face, and she said, “Do you want to leave.”
“Yes,” I replied. “Let’s get the heck out of here right now. My hives are getting bad.”
So we had to walk all the way back to the car, and the hives were full force the whole entire walk, and were getting worse. I was scratching like crazy, and just kept saying, “I am so tired of this.”
There were people out too, and I tried to make it look as nonchalant and normal as I could, but I had to scratch. The pain and itching was almost unbearable, and it wasn’t letting up.
We finally made it to the car, and of course thanks to the greenhouse effect it was super hot. So I immediately blasted the A/C on full blast, and began to drive with one hand while frantically scratching myself all over with the other hand. I was going nuts scratching myself all over and trying to keep up with all of the “pins and needles.”
The hives were still stinging me everywhere, and at this point I just lost it. I let out a big scream saying, “Dang it..What in the HECK is wrong with me Why in the HECK do I have to feel this torture almost every day.” My wife jumped, as she didn’t expect a big loud outburst.
I then went on a screaming rant for the next 10 minutes about how much it sucks having hives, how I hate it, and how I am so tired of living like this. This is odd for me too, because I am usually really quite and calm acting. I was so upset I just felt like I was going crazy. Like I could cry and scream and pull my hair out or something.
My wife just sat there and listened. I hate how my hives have to not only affect my life, but also hers. She is always great about it, but it still stinks!
Eventually the hives faded once the A/C got going. Like always, I felt drained and depressed afterward.I looked down and had tons of little red dots (hives) on me again. I usually only get those when I have a bad attack, and this was a very bad attack. When I got home I could see how my entire chest was flushed bright red, but it had faded during the drive. I would hate to see what it looked like during the actual attack.
Needless to say, I was pretty down in the dumps yesterday, and even today as well. I often talk on the forum about trying to maintain a positive attitude, and to not let the hives get you down. I believe in this attitude wholeheartedly, but unfortunately, it is easier said than done. This is particularly true when one experiences a really intense and emotional reaction like I did yesterday.
I am positive most days, but when I have days like I had yesterday it really affects me mentally. I feel like I am being tortured for no reason. I have no idea what is causing it or if it will ever go away. I get extremely upset and bitter towards live. I begin to loath life, loath the hives, and everything else.
I feel like I have nothing to look forward to. I have no idea if it will ever go away, or if I will ever be able to have the health I once had just a mere 8 years ago. And regardless of what I try to tell myself, it has MAJORLY impacted my life (and mostly in a negative way).
I find myself stressing about silly things in fear of an attack. I find avoiding as many social events as I possibly can. Instead, I seek solitude and isolate myself in a way to avoid attacks. Between my stomach issues making me avoid going out to eat, and my hives making me avoid doing anything physical, I basically do nothing. Dollywood was the most fun I have had in a while, and the hives even managed to sting me during that.
The truth is, people can live with CU, and I believe in making the most of it that you can. After all, it isn’t like it is bad 100% of the time. It kind of comes and goes in intensity. But it is downright hard live with this at times. Sometimes people just have to break down, or at least I know I do. There are just some days when a positive attitude doesn’t cut it any longer. It is time to face reality. It is time to be bitter, and rant, and let out steam.
I honestly don’t know what in the heck is going on with my body, but I hate it. Why oh why do I (and we) have to keep living with this. Can’t we get a break? Can’t we all just have a break from this torture? Why me, why you? Why can’t doctors figure this thing out? Grrrr.
Furthermore, sometimes I get pretty depressed about life in general. As I have stated on the forum before, each outbreak reminds me of my life span. It reminds me that, “Hey, your body is not working right, and one day you will die because something else in your body will screw up. Have fun.” I wonder if I will suffer and even get worse until my life comes to an end by some other disease.
This gets me even more down, because I realize the fragile nature of life. We live to die. There is sadly a lot of suffering felt in most cases (except for those few lucky ones who die in their sleep). I don’t know how or when I will die, but I know that I am suffering right now. Sometimes I wish I didn’t have to suffer through this ever again.
Not that I am suicidal, because I am not at all. I just feel like life loses its luster when your health is stripped away (or damaged).
Update on My Diet & Stomach Issues
Well, I have been eating healthy again with no junk food or processed foods since Monday. So far my stomach still gets a bit bloated even when eating healthy foods, and my hives (as mentioned above) seem to still be rather intense.
As I mentioned in my last post, I am starting to wonder if perhaps I have some type of in chronic inflammatory bowel disease which could be responsible for everything (hives and stomach issues). Hopefully I can figure this stuff out and perhaps see a doctor within the next few months if something doesn’t get straightened out in my body.
I swear, it is times like these when I seriously start considering taking some more extreme medicines (like corticosteroids or steroids). But then again, there is no guarantee those will even work.
UPDATE AGAIN: I am now on a great diet which has resolved both my stomach issues and hives. I now feel it was mostly eating foods that I had an allergic response to (but didn’t realize it). I also exercise regularly when possible. Read the home page of the blog and more to find out the details.
Anyway, I just wanted to sort of rant and share my experience yesterday, and also update on the diet/stomach thing. I hope everyone’s hives goes away soon, and I hope they aren’t giving you grief right now.
donta says
This post really helped me…I’m 21 and have been dealing with CU for a year now. I’m slowly letting it beat me.. Its depressing, I feel like I did some terrible wrong I’m constantly being punished for. I can get bitter too.. Glad to see I’m not the only person who feels like this. It makes life so hard for me..
Ben says
Hello Donta,
Thanks for your comment. I completely agree, Cu can be so depressing and hard to live with at times. I get my moments where I just want to cry and life just is really miserable. Cu can get so bad that I sometimes feel like I can’t do anything. But then, I tend to ‘snap’ out of it, and I get a more positive outlook on life.
I don’t think there is anything wrong with getting down in the dumps sometimes–we have good reason to do so considering what we have to deal with on a daily basis! But I also think it is important to find within ourselves the strength and hope to move forward and live a happy life as much as possible. We can get down, but we have to pick ourselves back up and move on.
I honestly think we will beat CU one day, and I can’t wait until that day comes.
Thanks again!