A common misconception about arthritis is that the condition is just some sore joints that can be controlled by simply popping some ibuprofen tablets and suggested supplements. This couldn't be further from the truth. Arthritis is so much more than just some aching joints.
I have lived with the pain of arthritis since I was eighteen and my joints don't just ache- they throb and then some. Pain knows no boundaries and it comes in many forms- sharp or shooting, grinding or grating, and burning. Pain doesn't discriminate. Arthritis can affect all joints in the body and it's impossible predict which joints will be attacked. Joint pain usually occurs simultaneously (on both sides of the body).
For me arthritis effects more than just a few joints. At present I have troublesome pain in my hands, wrists, toes, ankles, knees, rib cage, shoulder blades, my spine and sometimes elbows. On bad days the pain of arthritis can feel overwhelming. Sometimes all I can do is sit and sob and wish that my hands would just stop hurting for one minute. Some days it hurts to walk and there are times when the pain has altered my ability to do household tasks. Often I feel more than just achy- I feel extremely fatigued too.
My painful and sometimes stiff joints (I'm blessed to not have swollen joints at this point) are a result of rheumatoid arthritis; an autoimmune disease. For some reason, my immune system has gone haywire and is attacking itself, my joints the target. Basically, my immune system has set up camp in ShitVille. I'm not just dealing with arthritis, I am defying disease.
My pain is not something that is fixed with an over the counter pain killer. I take various drug cocktails (aka a crap load of anti-inflammatory and immunosuppressent drugs) and still receive no 100% relief. Although my medications come with copious amounts of side effects, I am thankful that they slow down the progression of the disease and aid in preventing joint damage.
Especially during this last week I have experienced how debilitating this disease can be. Last Wednesday (12th) was World Arthritis Day and I failed to produce a post for the occasion because pain flared ten fold. I've had to take double the amount of pain killers and have been waking up most nights with pain coursing through my chest. I haven't been able to blog and I have struggled to do the simplest of tasks- just doing a load of washing and making my bed sends pain searing down my spine and raging through my ribs.
Regular readers will know that I have been struggling with arthritis in my back for the last six months. It was just last year that I questioned when/if my arthritis would get worse, and little did I know the hell I'd go through to get that answer. I can handle joint pain in many joints- but arthritis in my back just takes things to a whole new level. It's a whole other world of pain that I can barely describe. It's like my ribs are being crushed by a corset. Some days the pain is so profound, I wonder how one of my ribs could not be broken. I have never felt pain like this in my life.
The effects of arthritis include much more than just the pain aspect. Pain can limit leisure activities, physical and social aspects which can strain relationships and lead to depression. I've had to alter my life drastically due to pain and fatigue, and I've experienced a roller coaster ride of emotions. I often feel scared, frustrated, sad and sometimes angry. Arthritis is the reason for my current state of doom and gloom. Some days the pain poisons my personality and positivity.
There is no denying that I have been quite dismal lately; my recent posts prove this. This blog is all about living creatively and positively "in spite of" and I certainly don't want to drag everyone else into the pit of despair with me. I try my best to blog with balance but having said that, I like to keep it real and honest here at Chronically Creative- and right now I am struggling. Really struggling.
Often I feel like I have to hide how I am feeling- so much energy and effort goes into acting the part of "I'm fine" because most young people don't understand how difficult it is to be on disability, hurt from head to toe and look a hundred percent healthy. This blog is a great outlet I can come to and be completely honest about how I am really feeling. I can take out my emotional trash and feel better for it.
I can't always be positive and happy, I don't want to "sugar coat" chronic illness. I take pride in writing honestly. Along with chronic illness, comes unfortunately big black times when I severely struggle. Writing a blog about life with chronic illnesses means not just sharing the good, positive, happy and joyful times- often it means sharing the bad and often ugly. I'm not sharing my story for your pity, I'm doing it to help others who are also suffering. I blog for the countless people who need comfort in knowing that they are not alone in their suffering and struggles; that they are not alone in feeling overwhelmed and overcome by their circumstances.
I am not enjoying life- I hate it. My support network sucks. Invisible illness is so isolating. Sure, I have great friends and my family are extremely supportive but during these tough six months it hasn't been enough. I feel like I've been abandoned, expected to cope and deal with this on my own. I hardly see the friends I do have because they are all busy living life- like they should be, but I can't help but feel left out and left behind.
My church doesn't have much support for people like me, I know they try their best but sometimes I just get so sad- I don't even have a good christian friend who I can call when I am finding it tough because I struggle to attend enough to even form friendships. I don't even enjoy church anymore and this causes me to sink into the depths of depression even further.
Where did I go wrong?
I'm depressed because of pain and fatigue, I'm depressed because I'm unable to work. I'm depressed because I don't want to wake up tomorrow in pain, I'm depressed because I don't want to take drugs that suppress my immune system- I don't want to have to stick myself with a needle. I'm depressed due medication side effects- my skin is an absolute mess and I'm putting on weight. I'm depressed because there is no simple quick fix for this pain. I'm depressed because this isn't what I want for my life- I don't want to deal with this another day, but I have to, I have no choice. I feel demoralised and I'm depressed because most days are spent alone. God feels so distant.
Heck, I even come home from my weekly work-out with an exercise physiologist drained and depressed, not just from exertion but conversation too. Having to tell someone that I don't have any plans for the weekend, sucks. Having to acknowledge that I didn't do much during the week because managing the pain some days was all I could "do" makes me feel pathetic. I know these are stupid insecurities I need to ignore, but it's really hard to admit that your life is less than. I feel so ashamed. What can I say? Slapping on some hooker red nail polish is an enthralling conversation. After some sessions, I get straight in my car and sulk. It's not my trainers fault, it's just that chronic illness makes me feel like a loser sometimes.
Think arthritis is just some achy joints? Think again.
I'm not writing this for your pity or sympathy- that's the last thing I want. But I am writing this for awareness- arthritis, although a common ailment, surprisingly still has many misconceptions. I've lost count of how many times I've heard "Have you tried fish oil?", or "Here, I found this supplement you can try" and "You're too young to have arthritis!". The latter one really gets under my skin.
Arthritis is not something that you can just get over and it require immense strength to live life well "in spite of". I like to think that I'm a better person because of this experience. Arthritis has taught me to be a more positive person- I am constantly learning new things about myself. I don't take anything for granted anymore, I'm learning to be more assertive and I am stronger because of it.
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