Autoimmune: This Is My Story

Lessons Learned

The week I went down to six steroids, there was a relapse of my symptoms. My mother rang the consultant's secretary to ask if she could tweak my medication and keep me on a higher dosage for a little longer. I was called in for another blood test. The week I went down to five steroids, the symptoms continued to worsen again. I was anxiously waiting to hear back about the blood test. 

The liver function test came back normal, but I was still getting all the symptoms I had listed before. Headaches. Fatigue. The horrid belching and acidic fluid rising through me. Joint pain. Stomach pain. I was also getting very wheezy most days and finding it difficult to breathe. This would often lead to me having panic attacks. It was unbearable. I just wanted my life back. I was angry at what this disease had taken from me, and how it was dragging me down to a pit of despair. I felt like I was slowly being sucked into this black hole of emptiness. It was slowly consuming me. And eventually, it was like I was fed up of trying to fight it. I let go and I allowed myself to just disappear in a downward spiral. All I wanted to do, was roll over and die. 

I continued to shut myself off from the world. Nobody I knew understood what I was feeling, not really. And I didn't want to burden them by even trying to explain what effect this illness was having on me. I kept avoiding school and kept sleeping for several hours into each day. I closed myself off in my bedroom and continued to write, even though, on occasion, I just wanted to pull the plug on doing that too. I also wanted to pull out of my drama group. I was rapidly losing interest in it, and everything else. I felt like I was burdening my parents, my friends, my siblings, even my guidance counselor with the whole situation and I started thinking that they'd all be better off without me. The only thing that stopped me from acting on those thoughts was the pain I would cause my friends and my family, if I were to go through with it. That, coupled with how much grief I recognised among my peer group as a result of the suicide a couple of months before, even girls who weren't really friends with her. I couldn't be the cause of that to those girls all over again. 

When I was called back in, my consultant told me of the LFT being normal. I told her of my symptoms returning. What she focused primarily on were the headaches and the tiredness. My Mam also told her of me constantly shutting myself away and my unsocial behavior. My consultant then asked me "do you cry a lot?" 

I paused and nodded painfully, and I don't know why, but my eyes just starting streaming tears. My consultant said that she'd continue me on the steroids and would start me on the immunosuppressants, hopefully next I'd see her, if I was feeling better. It was later on that I confessed to my mother that I had been having thoughts of taking my own life, and they there were getting worse. We went to my GP that afternoon to start me on some anti-depressive medication. 

I started taking walks daily to clear my head. I listened to music a lot more to help me feel a bit happier. I continued to talk to my mother about how I was feeling, just to let everything that I had allowed to build up for such a long time out. I kept taking the anti-depressants. And, at this stage, because of the constant state of anxiety I was finding myself in, my mother and I ended up having a sit down with my deputy principal to discuss my decision to write this year of school off completely and repeat my final year next year. Hopefully, be then, I'll have been on the immunosuppressants and on my way to remission. Well, for a time anyway. This is an illness I'll have for the remainder of my life. I guess, I'm still learning how to come to terms with it and how to manage day to day. But, I'm going to figure it out somehow. I've got a life ahead of me, and I'm going to live it, somehow. 

It may take some time and I may end up having to repeat this school year to get to the college course I really want. But, I've realized now that putting myself under all this stress and pressure to achieve, when my body needs rest, is not going to work out in the long term. 

From what I've heard from talking to people who suffer from people with autoimmune diseases, I will have good days and I will have bad days. I will have periods where my symptoms flare up and in those periods, I'll need to nurture myself. But, on the days when I feel great, I'll have to put everything I can into those days. From suffering with this illness, I've learned that I need to start taking things more slowly. I need to take one step at a time. And that is exactly what I'm going to try to do. 

I'm also taking steps talking to people. I'm still feeling down again, but I think it's just brought on by my poor physical state at the moment. People are still back biting about me. But, I refuse to allow it to bother me anymore. I don't have the energy to invest in explaining myself to others and trying to make them understand what I, and so many other people, are going through on a daily basis as a result of such illnesses. What I'm trying to do now, is manage all the anger and emotional pain I'm enduring as a result, and channeling it to fight this disease; to fight my way back to where I used to be, as much as humanely possible.