FMS Community Newsletter #109

Everyone who has ever attended a social function one day, and found themselves in flare the next, raise your hand! I guess by now you old-timers realize that you are not alone in this - the rest of you will figure it out soon. I have a pet name for this disturbing event, I call it “Feed the soul and let the body pay the tab.” There are just certain things I want to do, things I know I will pay for the following day, but I do them anyway. Now, I believe in my heart that I do everything that I can, to be as healthy as I can. (In the interest of full disclosure, I am still having trouble kicking the smoking habit – but) I try to eat properly, stretch, take walks, go to bed at the same time and get up at the same time. I take my recommended medications faithfully and constantly search for new and better treatments. This sounds good in theory, but it falls apart as soon as someone throws a schedule change into the mix. For years, I would attend family picnics, Fourth of July fairs and more, just knowing how bad I was going to feel the next day would ruin the event. I would be so preoccupied over the pain and fatigue I would be facing the next day I couldn’t enjoy the moment. Then, to add insult to injury I would spend the next day crying, angry, in pain and beating myself up for being sick. Eventually I decided to stop attending these functions so I could live pain free. That was the day my soul began to shrivel up - I was no longer a human, having human experiences, I was nothing more than a sick body that I was babysitting. After a few years of this life style, I got angry and began some soul searching, to see what I could do to rectify this pattern. After thinking long and hard it came to me – I couldn’t! There was nothing I could do to stop the day after effect, instead I had to learn how to pay the piper the next day – and I had to learn how to do it without beating myself up or feeling sorry for myself. Thus was born the “Feed the soul and let the body pay the tab” theory. There are just certain things we as humans need to do, and one of the most important items is enjoyment. It feeds our soul, refreshes us mind and body. Another important component of being human is the ability to forgive, that includes forgiving ourselves. We did not ask for this, we are not fakers or slackers, the fatigue and pain after a major outlay of energy is very real. So why should we beat ourselves up over something we have no control over? Why should we let it stop us from enjoying life from time to time? We shouldn’t! Now, I am not a doctor or researcher, heck I’m not even a therapist our councilor. I’m just an average human who has lived with FM and CMP for over forty years - a human who took a long time to learn how to be good to myself from time to time. I am sharing my experience, and tips in the hope that it may reach a few people who are tired of being reclusive. As I mentioned earlier, the first step is learning to forgive yourself for the day after flare, it is not your fault. The second step was learning how to give myself permission to pamper myself the next day, guilt free. The following is a short overview of what I have done to insure that I can feed my soul - then rest as my body pays the tab. •When I worked outside of the home, I always put in for a day off after a major event. If I was unable to take the day off, I took other steps to make my day livable. Planning ahead, I would have my favorite comfort foods ready for a packed lunch. When I could afford it, I kept a stash of disposable hand warmers handy so I could apply heat to my affected areas throughout the day. I usually found these in the aisles reserved for hunters. You squeeze them to release the heat and they would last for six or eight hours. After work, I had to learn how to get rid of the guilt, and educate my family on what the day would be like. It wasn’t an easy road - they were spoiled and wanted a home cooked dinner every night. However, they realized that they enjoyed attending a party or interacting with family more than they craved a home cooked meal. I also learned to let go of things that had previously made me feel good, such as having just the right blouse clean for work because it look good with a certain jacket. As soon as I learned not to stay up late to launder and iron that blouse, life got easier. I wore things to work that I thought would draw attention, but nobody ever seemed to notice as long as I was clean and doing my job. I feel for everyone who has to work outside of the home as maintaining a social life is extremely difficult with FM. • Once I no longer had to work outside of the home, I adopted new measures that allowed me to feed my soul. Once I knew that I was going to be down after expending energy to attend a social function, I found ways to make the day after bearable. 1) Forgiveness: This is not your fault and you have to feed your soul as well as your body from time to time. Go, have fun but do not beat yourself up, or feel sorry for yourself the day after. This too shall pass. 2) Plan Ahead: If possible, clear your calendar for the entire day after a social function. If you find you cannot avoid a social obligation, make it clear to those involved that you may only be able to put in a short appearance. Clear the way for your departure ahead of time. 3) Educate your Family: They may fight you at first, especially if you are the primary care provider. In the end, they will learn that life will be better if you are at their side at weddings and graduations as they learn to adapt to your day after needs. 4) Be Prepared: Stock up, as money allows, for the day after. Buy books, magazines, movies or music and put them away without using them. This gives you something to look forward too when you are laying on the couch recovering. Did I mention the forgiveness thing? Cling to the day before, enjoy it and be glad you participated. Again, this too shall pass and you will be back up in no time. 5) Feed the Tummy: Keep some of your favorite finger foods on hand, so you can eat without a lot of fuss. Microwave meals, raw veggies, peanuts, anything that you enjoy as long as you feed the kitty, insuring that you will recover faster without having to get up to cook something. 6) Guilt: Did I mention that you have to let go of the guilt? I did! I can’t stress this enough. Get out and feed your soul when you can. Yes, the body will pay the tab but if you don’t try, what will the ultimate cost be? Once you commit the body to this debt, you have to give it time to come up with the funds. So let go of the guilt, make your house a haven and revel in the fact that you looked life in the face and grabbed a handful. You will be back up later to tackle life again. Jane Kohler fmscommunity.org