I would like to preface this post by saying I speak on behalf of myself and myself ONLY. Everyone who has lived with CRPS, chronic pain or any disability has a different story and insights into their experience. So, my answers to these questions are not gospel or 100% factual, it is my perception of my own experience.
I've have been asked what seems like a million questions by so many people since my accident. Personally, I don't mind getting asked questions as I try to see it as an opportunity to educate. I understand that questions tend come from a place of curiosity, but I'm not going to deny that constant repetition of similar questions is certainly tiring. I'm also not sure if I'll get used to the random and somewhat invasive questions I can get from complete strangers. So, without further ado, these are the answers to some of the most common questions I get regarding my disability.
1. Can I touch you? What would happen if I touched you?
No, you may not touch me. I still feel bewildered when someone asks this. Why would you want to touch someone? People don't generally go around asking to touch others. It's a bit of an invasion of my privacy. Allodynia or hypersensitivity is another part of my condition, which means when my lower body is touched by something that is not meant to be painful, like hands or material, I feel a burning pain in said area.
2. Can you move your legs at all?
Yes. Paraplegia is not the only reason people end up in wheelchairs. My condition, Complex Regional Pain Syndrome, means that inappropriate pain signals being sent from my brain to my lower body, inhibiting the function of my legs. My legs have had decreased weakness since I began using a chair, which is why I can't walk. I have barely been able to move my right leg at all until recently.
3. What happened?
This is probably one of the most common questions that I get. It's somewhat irritating to answer because of mind-numbing repetition. I've even been asked this by complete strangers on more than one occasion. Long story short, in October 2015, I fell off a skateboard. About six weeks later, I was diagnosed with CRPS. I used crutches for about four months, until a rapid deterioration in the function of my legs early last year. I was admitted to hospital in March last year and lived there, enduring daily physiotherapy, until about July. I then lived at home, worked a bit, but experienced a major setback after falling out of my wheelchair in March this year. I was then readmitted to the hospital for about three weeks. Since then, I have been doing a mixture of working, physiotherapy and self-discovery. *takes a breath* And that is the very condensed of my very convoluted and complicated story.
4. Are you okay?
Yes, I am doing just fine. I am adjusting to my life and trying to move forward.
5. Is this forever?
I am lucky enough to say that, no, this is not forever. I will one day be able to walk again, but I do not know when that will be or what a future with walking will look like. Will I have pain? Dunno. Will it come back? I bloody hope not. This is not the case for all people with CRPS and other disabilities. The disability spectrum is so wide and many of us don't know what the future holds for us regarding our health.
6. Are you in pain all the time?
Yep, all the time. It's not always agonising and after nearly two years of living with it, I have found ways to accommodate my pain and fatigue. It tends to fluctuate based on factors such as my mental state, anxiety levels, fatigue, stress and level of exertion. If I've done a lot during the day, like therapy, my fatigue levels will be higher. This isn't like, I'm a bit tired fatigue. This fatigue is overwhelming, whole consuming, I'm too tired to move my arms fatigue. Unlike any level of tiredness that most able people experience. Sometimes, I have pain flares. This basically means that my pain levels shoot through the roof and I have to find ways to adapt it until it subsides. This might mean medication, meditation, yoga, going outside, distraction or writing. I don't know if or when my next flare will be, but I don't want to let pain control my life. I want to control my pain so I can have a life.
7. Do you get out much?
Yes. I try to live my life as normally as possible. This could mean going to the mall, coffee or drinks with friends or congregating at someone's house. My social life is relatively similar to before my accident. It just requires an ounce more planning than it would for your average able-bodied person.
8. Do you need any help?
Generally no. My upper-body still works fine. With a bit extra effort, I can cook, dress and complete life's other necessities. I've learnt my way around certain situations, like opening doors. I really appreciate it when people open doors for me, but if you're not close to the door, you don't need to sprint over to help. To me, it's more of a courtesy rather than a requirement. Sometimes, I open doors for other people and it's quite interesting to see their reactions. Like, oh, people in wheelchairs can open doors and aren't completely reliant on others.
People with disabilities can find it hard to talk about their disability. I would advise against asking strangers with disabilities these types of questions. But, I would encourage open dialogue with people who are comfortable talking about their disability. Living with a disability can be really hard and tiring. It certainly hasn't been easy for me and I've got a long road of recovery ahead. But it's not all doom and gloom. Ignorance is not bliss, educating yourself comes as a benefit to both you and people with disabilities. I am not my disability. I am not a disabled person, I am a person, who happens to use a wheelchair, but one day hopes to walk again.
Ask me anything you want in the comments, I won't be offended, I promise. If you are a person with a disability, tell me what questions you get asked the most. What annoys you about these questions?
- Miller
Comments
Post a Comment