This week has been one of shittiest weeks I've had in a long time. (I'm not going to sugar coat) This post is meant to be therapeutic for me. I feel the incredible urge to try to find some positive when I feel myself slipping into a negative space. If I can educate or inform anyone via this post..then it makes my pain worth it.
I have lived with this monster called RSD since November of 2011. Since then, there has not been one day that I have not had some level of pain. At the beginning, I thought I was going to lose my mind from it. It was new and scary and I had not developed the coping skills to manage it. In the three years since, I have learned to try to adapt, accept, cry when I need to, yell when I need to, and most of all.. allow myself to understand the importance of knowing that even though I may be in serious pain in this moment..the next moment offers hope that it will be less pain. It keeps me going and helps me not feel the foreverness of being in pain.
I'm not feeling strong today..or yesterday. The cold has been crippling for me. I have not been out of my house more than a couple times a week since the winter set in and it's making me feel like a prisoner. One step into the cold air and I am overtaken by a pain so immense that it feels like I'm being hit with a sledgehammer. Layering clothes has not helped, in fact..it's a double edged sword. I long for summer where I don't have fabric touching my leg causing it to feel like I am being electrocuted. Yet, if I don't layer socks..my foot and ankle get so cold that I can't walk without feeling like they are going to explode. Simple activities like walking upstairs to use the restroom feel like a chore..and I will literally put it off till I can't anymore. Standing at the stove to cook a meal for my family is nearly impossible and I am forced to use a stool while I cook.
More than anything, I just miss the normalcy of everyday life as I knew it. I miss going for hikes with my husband. I miss being playful in a physical way. I miss walking through a store and am always so embarrassed to use a wheelchair, but the alternative is severe pain and swelling for hours. I miss so much because I have to plan, adapt, and sometimes just say it's not a possibility without consequences.
Why am I telling you this? It's humbling and embarrassing for me. But, I feel it needs to be said.
Chronic pain is silent. Those who suffer from it are often misunderstood because you can't always see it. A staggering 86% of people who live with it suffer from depression. Latest scientific studies show that the suicide rate of those who suffer from chronic pain is now 30%. That means three out of ten people will end their lives to end the cycle of pain.
Although I am not suicidal..I can definitely say I understand getting stuck in the scary feeling that you will feel intense pain every single day of your life. Fortunately, I've learned to view pain as less and more. Some days I will have less, and that..keeps me from giving up. I hold onto that knowledge and I can say keep going. For some, that is not enough. Pain can be so blinding, it can steal one's ability to see past it.
There is no single part of a persons life that isn't affected by living with chronic pain. It can ruin friendships, marriages, and all manner of interpersonal relationships. It can leave people in poverty due to the inability to work. It causes other health problems due to the stress it causes emotionally and physically. In short, chronic pain has tendrils that can worm their way inside every part of your life.
How can you and I help others who suffer from some form of chronic pain? It's so important that we all educate ourselves on this topic. You could be the person that someone reaches out to, and knowing what to do or not do could mean they will reach out again..possibly at a time where they are considering ending their life.
1. Listen- sometimes we just need to cry and have what appears to be a meltdown. Someone may sound hopeless and sad..just listen. Just hold them. Let them say all the dark things that they hold in their minds.
2. Know when to act and when not to act- if a person is actively suicidal, please do not ignore that. If a person is just needing to release, understand that there is not really anything you need to do besides just be there for them. Don't feel helpless that you can't fix the situation. Don't offer a million suggestions and home remedies. A person who truly suffers from chronic pain has probably tried everything they can to get away from the pain. It only serves to frustrate them more having to explain it all to you.
3. Understand that a person may not vocalize that they are in pain. Look for silent cues like wincing, stopping, scowling, grimacing, holding a body part, breathing deeply or gasping, teeth clenching or grinding. If you see this happening, give them a moment and gently ask if you can help. If they say no, stay with them until they can move on.
4. Understand that they may have physical limitations. Just because you may not see a cast or an outward sign that they are in pain does not mean it's not there. If you see a person using a wheelchair, don't assume that because you can't see what's wrong..that they are lazy. Same goes for handicapped parking. Know that there will be things that are hard for them to do or that may cause their pain to worsen. So if they decline, do not take it personally. Do not tell them they just need to push through it.
5. Understand if a person who is in pain seems touchy or moody. They are trying their best to manage their own feelings. They may be feeling anxious and sad, it is not your fault. Sometimes patience is hard in these situations. If you find yourself losing patience, then take a break. Don't take it out on them...allow for apologies when they can. This does not give the person the right to walk all over your feelings, please, tell them that you are hurt..but know that nine times out of ten, their bad mood has nothing at all to do with you.
6. Educate yourself on the cause of your loved one's chronic pain. Ask them what triggers worse pain for them. Ask them what helps it. Ask them what you can do to help and what not to do. If there is a disease that is causing the pain, research it.
7. Know your own limitations. If you can't help or understand, do not get involved and create frustration for the both of you.
8. Find ways to adapt your plans so that you can involve your loved one in a way that makes it possible for them. One of the hardest things is to watch your family or friends carry on and leave you behind. Although it's not always possible every time, please..try your best to do this frequently.
9. Understand that there may be periods of time when your loved one may feel the need to isolate or withdraw. It's not out of hurt or anger towards you. Sometimes, it's important for us to sleep more, get out of our own heads and reality by doing something mindless like video games. Honestly, sometimes we withdraw because we feel we are hindering others from doing what they really want to do..and we don't want to be a millstone.
Thanks for reading this if you've made it this far. You've made my crappy couple of days worth it because I now know you are armed with some information that can help someone.
Tomorrow is a new day and it holds the possibility of less pain. To that, I say..I am thankful.
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