30 Day invisible illness challenge: Day 19

Day Nineteen: 

It was really hard to give up... 

Well allow me to list off the things I miss.

I really miss wearing (and looking good in) blue jeans.

My specialist diagnosed me with a co-morbid condition called abdominal allodynia. My doctor is doing a lot of research in chronic pelvic pain, and he’s discovered that women with chronic pelvic disorders often develop sensitivities on their abdomen. My endometriosis has advanced to the point where my body’s perception of pain has changed. Because of my allodynia, my nerves are constantly firing- my specialist calls this the “sparkler effect.” Because my nerves are always firing and my muscles are always contracting, I have a lot of pain and sensitivity on my tummy. I find that jeans are almost impossible to wear, because they’re too tight around my waist and can cause major discomfort. Yoga pants and sweatpants are literally my favourite things because I am relatively comfortable while wearing them. Since my specialist injected botox into my abdomen and lady parts, I’ve found that I can actually wear some looser jeans and this is awesome! Problem is, the botox will wear off and having it injected was so painful that I really, really don’t want to go through it again. However my specialist believes that the allodynia can and will reverse in a couple years, as long as my endometriosis is under control. Allodynia is a form of fibromyalgia, and while my doctors are still unsure whether I have fibromyalgia or not, I can certainly conclude that there are days where I feel like I do. If I want to wear blue jeans, I am SOL and this is a bit sad to me.

 I really miss having energy

This sounds a bit silly, but it’s true. While I do have my good days, and while I can still walk around and get things done, I find that I feel tremendously tired most of the time. I’ve learned that my fatigue is caused by a number of different things. First of all, endometriosis contributes considerably to my fatigue. It’s been shown that some endometriosis patients experience grinding fatigue comparable to the fatigue that comes with advanced stages of cancer. Let that one sink in a little bit. I’ve also learned that my medication can cause malaise, tiredness, and brain fog. I’m also extremely fatigued because I cannot stop bleeding. My doctor is actually running tests to determine whether or not I have a blood disorder. He has had me on nearly every treatment available to stop my bleeding, but it won’t stop. Because of this, the disease is spreading in my pelvis, I’m anemic, and my energy levels have crashed. Iron deficiency and not very much blood means I’m exhausted and pale, and I have these delightful raccoon-like bags under my eyes. A short walk leaves me shaky, sweaty, pale, and utterly exhausted.  My 8-hour Sunday shift at the shop leaves me feeling drained. When people suggest I work out or join a gym I want to grab them by the shoulders and give them a shake (but that would probably tire me out too much).

 I miss not having drugs in my body

This is a sensitive topic for me. I love science, and I believe in pharmaceuticals (they work!). My current issue is the number of drugs that I’m on. I have been on so many aggressive hormone treatments back-to-back, and I take narcotic pain killers every day. On Thursday my specialist prescribed a medication to stop my heavy bleeding. I would tell you the name of the drug, but I cannot read his atrocious writing on the prescription. I’m not too awfully bothered by drugs, I know that some people are on plenty more and really I don’t have much to complain about, but these drugs (especially tramacet and botox) are expensive at the pharmacy (I’m uninsured). It feels weird to know that I’m dependant on these drugs. The pain killers don’t bother me much—I usually lay off of them every so often because I feel utterly defeated and too worthless to even take painkillers. I also don’t take them when I’m having a good day and my pain is below a 6. Knowing that I have so many different chemicals and hormones in my body is borderline disturbing.

 I miss feeling amazing

I have chronic pain, which means I experience pain every day. It’s at the point where even my aches and pains have aches and pains. I’m 22 but I feel like I’m 92. I feel icky and gross and sore on a daily basis from the disease itself, the medication I’m on, and the co-morbid conditions that developed because of my disease. Even though I have days where I feel good, I haven’t felt amazing in a very, very long time. Even when I’m pain free for a day, I feel tired or nauseous or something. Very rarely do I have a day where I feel normal. And I miss that. I miss just waking up and feeling good. I hardly know what that’s like anymore! I want that back, more than anything. I want to wake up and just feel energetic and euphoric and amazing. No pain. No drugs. No fatigue. I just want to feel amazing.