CRPS Awareness Day 17: Attending Events In Pain
By Samantha Anderson
When was the last time you went to an event? A wedding, a reunion, a birthday party, a holiday- they all count. It can be incredibly stressful to prepare for these events, especially when you cannot predict how your CRPS pain is going to be. But, every day, we continue to push to make it to the things that are important to us and those we love. I thought it was only appropriate to write this blog, as I am attending a wedding tonight after injuring an area of my body that is greatly affected by CRPS earlier this week. With that being said, congratulations to my cousin Andrea. This is inspired by your wedding!
Preparation. It can be the most important part of everyday life. If we go to the grocery store, we prepare by having lists and coupons ready. If we go to the doctor, we have records and logs of issues to report to them. How can we prepare for a major event? This starts off within the month of event. While we must continue to live our day to day life, it is important to try to conserve energy and stamina for the big event. This does not mean everything has to stop, but try to make life easier on yourself. Rest up as much as possible, prepare meals in advance so you do not have to do as much every day, ask for help from family and friends. This is something I would recommend anyway, but especially during times of special events. If you are experiencing pain, continue about with the plan put in place that helps you manage your CRPS. Whether that includes physical therapy, acupuncture, meditation, medication, or anything else, you will want to keep doing that. (PS. If it is an event you need to bring a gift for, remember that registries are now online and you can get items shipped right to your door OR to the door of the person/people receiving the gift). This prevents the last-minute rush that so many of us resort too.
Dress to impress (no one). Okay, to some degree, dress codes need to be followed. Weddings are a bit more formal than a birthday party. However, there are ways to dress comfortably and appropriately all in one. With the wedding I am going to tonight, I will be wearing a long sleeve shirt and a tea length skirt. The skirt has a silky layer by the skin, so it will cause minimal irritation to my legs. This skirt also covers the swelling in my knee and discoloration of my legs, especially after getting injured early in the week. The elastic on this skirt (and the flowy bottom) help hide the swelling I currently have in my abdominal region as a result of cysts. But that’s another health story. The arms of my shirt are soft and work in case there is an air conditioner that is cranked too high, minimizing my pain. I also tend to bring multiple pairs of shoes with me, as things can change from moment to moment. I may wear my Toms, or I may wear a pair of flats that work with my foot. It depends on the swelling. Generally, I wear LuLaRoe items to events. I have found soft shirts, dresses, skirts, and leggings that work with my CRPS. Some days, I need tight garments around my CRPS affected limbs, making leggings a perfect fit. Other days, I need loose fitting clothing. It’s day to day. I always try to have a few ideas of what to wear in case my body is not cooperating. This can go under being prepared, as you will not have to experience last minute panic trying to find something to wear. Men, I’m sorry. I’m not nearly as in tune with men’s fashion as I should be. But Target seems to have some soft men’s clothing, based on what I’ve experience while switching my husband’s laundry over.
Be strategic. You know your CRPS and overall pain triggers (loud noise, a lot of vibration, sunlight, etc.). You should tell whoever is planning the event about your needs. For a wedding, you may want to be away from the speakers of the DJ, but also not under a vent. Tell the bride/groom/mother of one of them and see if they can talk to the venue to discuss the best place for you to sit. Do this for other events, too. If you do not say anything, no one will know how to make you more comfortable. If you do say something and they cannot accommodate all of your requests, at least you mentioned it and gave it a shot. You have to do what is the best for your health. Also, brings things that will help make you comfortable. If you need a pillow or blanket to protect yourself or to minimize your pain, bring them with you! We tell all of our conference attendees to make sure that they bring anything that could help their comfort levels, especially staying in one crowded room for a long period of time. I have seen some fantastic ideas. You have to take care of you.
Have a good time. This sounds like a silly instruction. However, after talking to so many of you (and living with this myself), I know that we can often feel guilty for going out and having a good time. We get anxious, thinking people will think we are magically cured just because we are smiling and laughing. We worry that our employers or people from social security will find out and will then take everything away, even though we have worked so hard. However, by having a good time, I am not saying to go run and jump on a trampoline and make sure to hit all of your affected limbs. I am merely suggesting that you enjoy the moments. Occasions of celebration are meant to be fun. We are allowed to enjoy life, even though we are in pain. As a matter of fact, that’s more of a reason to enjoy life. Say this to yourself (or out loud): “I am a CRPS warrior. I live in pain, but that does not define me. I define me. Today, I am going to embrace fun and not feel guilty.” That felt good, didn’t it?