Tuesday, March 31, 2015

Breaking the silence about pain

I have many family members and friends, but the truth is that there is just a fairly small circle of people that I started letting in on my secret a few months ago. Unless of course you have seen me often in person, in which case you know what has been happening at least a little bit. You and I both knew that something wasn't right.

It started back around 2011 actually, when I think back. I had over the years started being able to do a little less energy-wise even back at my graphic design job in 2006. It just seemed like I was always warn out at the end, especially considered increasing stress from a supervisor that was steering me away from what I was good at into taking care of all of the departmental leftovers that nobody wanted. So when I quit that job and went back to school I experienced a certain amount of upswing. By 2011, I was finishing my thesis to wrap up grad school, had that deadline followed by having to help clear out my grandmother's house to sell it, and two weeks later move ourselves.

By the end of 2011 my health crashed. I spent a few months fighting off illness. But even throughout 2012 and well into 2013, I couldn't possibly think of getting gainful full-time employment. I had a friend who gave me some work, but even the part-time work was exhausting me.

I started progressively dragging. I had gained much more weight than I had liked over time. I was increasingly sluggish and my attempts to increase my physical activity seemed to always end in disaster after a couple of weeks. I would have shoulder pain, knee pain, and/or ankle pain. The benefits a person should see from increased physical activity would never fully materialize.

At the same time we were facing a possible move to another part of the state, so I couldn't get a job full-time and juggle house hunting. So, in the mind of my family, I was sort of employed by them as personal house hunter.  That took several trips, multiple rounds of disappointment, but ultimately it turned out for the best. We didn't need to move up north after all, which was good because we were having a hell of a time trying to find a place that was both affordable and worth moving that far.

By the time 2014 rolled around, something changed. I started trying more fervently to lose some weight and possibly get my health back so that I could start trying to work at least part-time.  Instead, while eating better made me feel psychologically better and was benefiting other members of my family, the improved food life was not changing the fact that I had started developing swollen finger joints, and all of the roving pain I experienced when trying to exercise was just getting worse. And I started feeling tired. And more tired. And even more fatigued. And then I had a cold that thoroughly kicked me, we moved to another house, and my pain was so bad that I could hardly move. I had a gorgeous upstairs bedroom that I had to creep slowly up the stairs to every night. I would wake up every couple of hours, and have an incredibly hard time just making it to my bathroom. I finally needed a cane just to get there because both knees hurt, but my right knee was really bad. Hobbling there was the only option.

Again, I tried changing my diet, finding that there were some foods that certainly made my situation worse. I had gotten acupuncture which helped my knees get more functionality back.  But nothing solved my fatigue, my swollen joints. my incredibly pain-filled hands, or the way that I could just never find a normal. Never find a day without pain anymore.

So I finally went to the doctor. Being out of work meant that I really didn't have financial means unless I put even more financial burden on my family. But after a verbal consultation with my family doctor, he recommended I go ahead and file paperwork and get on state funded healthcare. So I did.

So after all these months and a full blood panel I now have medication and answers. I have Rheumatoid Arthritis and Hypothyroidism. While I am now about the same as I have been for weeks, I am not doing any worse. I am on medications that should start helping in a few weeks.

Everyone in my family knows now what my official diagnosis is. My illness has a name. I can admit now that I need more assistance opening everything, have someone else cut things for me because I can't operate a knife without hurting my hands. I can get special tools to assist me because I know this isn't some transient moment, but something I'm likely going to be dealing with for the rest of my life. I don't have to feel guilty because I can't hang out with friends because my pain is too bad, or I'm too tired and need a nap.

I don't even have any objections from my family because I want to cut my hair really short and make it easier to actually wash and dry, and not have to have my shoulder, wrist, and hand scream at me while I try to get my hair dry and styled. Everyone really understands that I have to do these things for me whether anyone else thinks a short hair style will actually be flattering on me. I have to do what's best. To adapt. To learn how to tackle these new issues.

I have also learned that opening up about your needs can garner new friends and allies. People who you didn't know where also suffering in silence can relate to your problems.

Maybe all of us need to open up a little more often and tell the truth about our pain. Not for pity, or to garner attention to ourselves, or to ask for crazy home remedies, but to bolster each other. To understand that many of us are suffering with chronic illness in silence unnecessarily.

Sometimes we just need to know that others understand without judgment or pity.