Here are 10 ways I managed this crisis – because even though it has been the worst couple of months of my life; my pain constrained me, but didn’t cripple me; which to be quite frank with you surprised me and my closest friends. These tips are geared for Painies, but I think that Non Painies might also find these tips helpful. So here goes.
1. Pace Yourself: Recognize a frantic pace cannot continue. In any crisis, break it down. Make a list of what needs to be done, prioritize and work the list. Putting the situation into small manageable tasks, helps reduce stress which will lead to harsher pain. Focus on one thing at a time, let things go if they are too overwhelming for you and get back to them later. Take breaks and reassess as needed.
2. Set Boundaries: Don’t be afraid to say no. It is ok to admit you can’t do something, simply because you are a Painie and it is not possible. It might feel cutthroat but it is essential. I had to be very forceful about keeping the house limited in the number of people. Too many people staying there or around – was too much for my system. Many didn’t understand that. They thought I was being difficult, but I really wasn’t trying to be, I just knew too much noise or activity (as you Painies can only know) would set off my Central Nervous System and I can’t get it back under control for days. I didn’t have that luxury.
3. Ask for Help: Delegate some tasks, use other resources, talk with friends, vent out your concerns or emotions with someone you trust. Don’t feel guilty for having people help you, you need it and people like to help – I really think they do.state I had 2 friends that helped me so much you can’t imagine. One drove me to the hospital (2.5 hours away), leaving her groceries literally at the checkout. She stayed at my house for 3 weekends in a row to care for our dog. My other friend got my kids ready for school every morning, ran interference for me, fed me etc. They both went above and beyond the call of duty and I am forever grateful for their support. I could not have possibly done that without them. It was amazing. This is also to say, we as a family, could not have survived if we had not asked for and received help from many sources. The kindnesses from so many were amazing.
4. Rest: Go to bed early, take quiet hours, turn off the phone. Let some peace be around you while there is a hurricane outside. It will keep your energy level up and your pain levels down.
5. Eat or Eat Well: I tend not to eat during stressful periods. I had to force feed myself small amounts of food and drink water. If you tend to eat too much when stressed – try to snack on veggies or healthy things. I know this sounds trite, but chemicals, sugar and preservatives can make pain levels rise. Bad food also hurts your digestive system and you can’t get the crap (literally) out of your system. This will build up and hurt you more – so don’t do it. Easier said than done, I know, but trust me it is true. Besides – people bring food in a crisis – eat it.
6. Manage Your Medication(s)/Treatment(s):Meet with your Dr. (this is what I did) and discuss your current situation and work together as a team to manage your pain through the ordeal. It is important your physician know what the scoop is. I was very lucky that it seems my system is so much better than 2 years ago that meds weren’t an issue. However, I know that as pain levels rise and demands on you increase – Painies tend to “suck it up” take more meds and ride it out. Be careful as there are limits to what you are going to get and repercussions in the aftermath. However, don’t not take your meds because you are scared of that. Work with your Doctor to find the best plan for you.
7. Have Patience: Many people still don’t get what it is like to be me. I never show what the aftermath is – I hibernate. If I have a bad pain day – I will withdraw rather than be with people. This has an effect, because as pain is invisible and I don’t show it, it is confusing. Thought I was being a “B” or exaggerating or being selfish. Some people felt I wasn’t being supportive of my Husband, Father in Law etc. because of the boundaries I had to set to keep me together. Even though, I found not being understood very painful and have been deeply hurt by some things said about me, I have to remember they just don’t get it. I hope they never do. I can’t take it personally, even though it is hard and I still feel the sting. I have to try to let it go, some people don’t have sympathy in this regard. It isn’t their fault, they just have never experienced chronic invisible illness. Holding on to the hurt can cause you more pain – both physically and emotionally – so try to let it go. Also, people handle things differently, there are the Copers and the Non-Copers and you must have empathy for their feelings; even though it might not be helpful to you or understandable, it is how they deal. So just take a deep breath and move on.
8. Find Your Inner Strength: Every night I would walk down to the lake with the dog and breathe deeply……and cry. I would talk to my Mother In Law and ask her to guide me to where and what I was supposed to do. I would dig deep to find the person I was before the pain and follow the changes in me during the pain. I recognize that just by living like this we are strong, stronger than most. If we can deal with agony, burning pain, electric pain, throbbing pain, piercing pain, nagging pain and all round discomfort every day……we are strong. We are built to handle these things and we can help others through it by leading the way; or at least walking beside them. It is ok to feel the sadness, anger, frustration, anguish and fatigue. It is part of the process.
9. Don’t be Embarrassed About Requiring Special Things:The memorials were outside in a tent, with folding wooden chairs – we know what those do to us. I had to have a big white wicker chair with a big blue cushion put in the front row. I also had to have my hot water bottle (my blankie as it were). I am sure some people were like “Huh?, Why is the Daughter In Law in some massive chair – while everyone else is in a folding chair” Don’t bother explaining, use whatever tools you need to cope with the situation. I mean it could be worse; you could be giving a Eulogy with your fly down or your skirt tucked into your tights – that would be much worse.
10. Find The Good In The Situation: Even though you feel like the world is falling apart, good things come from bad situations. In my case, we were able to raise over $10k for the local food bank. One restaurant GAVE us the food for the first family memorial. Rifts in the family, fell away and there was reunion and forgiveness. There were so many generous people who offered shelter from the storm, food and shoulders to cry on. Bonds between some of us got stronger. Her death had no pain, suffering or lingering. She died on a sunny day, with friends, in the arms of her husband. She stayed long enough for her children to get a chance to say goodbye. I mean, if you are going to go, isn’t that a pretty good way to do it? Finding the positive will help you cope with the sadness and loss.
Not one of us gets out of this alive, we know that. I know I cannot bring her back. I know I will miss her every day. I am grateful her death had no pain, suffering or lingering. As Painies we understand what that means. We live on the cusp of suffering and darkness all the time and loss, stress and sadness are things that affect us differently. However, though we suffer every day we still have to live our lives and get on with it. I think these strategies helped me and are applicable to any type of crisis. I hope they help you; because sadly these things happen and your pain isn’t going to let you go.
My Great Grandmother always said “Just do your best, that is all I can ask” and she was right.