Living while waiting instead of waiting to live

Have you put your life on hold as you wait for a cure or relief? Are you hesitant to make plans because you aren’t sure of how you will be feeling physically? Not only have I done that very thing, but am currently fighting the urge to do it again.

Long ago when pain first consumed my body, I put my life on hold while I waited for a diagnosis. Instead of making plans I would lie in bed crying because I didn’t know what was causing my body to hurt so much. I was afraid of doing anything because I never knew what would cause my pain level to spike. This continued even after I received my diagnoses of Psoriasis, Fibromyalgia, and Psoriatic Arthritis. In the beginning my doctors insisted that they would be able to treat my symptoms with medications and that I would be able to function normally. Well, I waited and waited and waited. While I continued to make plans for my kids (always making sure I had a backup plan in case I couldn’t drive), I stopped making plans for myself.

Refusing to commit to everything and anything wasn’t all that I ceased to do, I also stopped doing or participating in activities that I enjoyed. If I did do something that caused an increase of pain, I would feel guilty for doing it and in a sense began to punish myself for it. If I spent my energy doing something I enjoyed I felt selfish, like I should have used that energy to tackle my ever growing list of household chores that I struggled with. You know the saying “Work hard, Play hard”? Well, I was having a hard time allowing myself any playtime when I was hardly working. This continued until I was able to accept that this pain was going to be a part of my life and that I needed to find a way to live with it. I would like to say that I discovered a balance of work and play, but the reality was that I spent more time flaring because I hadn’t made any alterations to how I lived. Instead I continued to live like I had before becoming ill which only increased my flares in both frequency and intensity. I would “live” for a few weeks, then would be confined to bed for 3-6 weeks.

At the same time I began developing ovarian cysts. After two surgeries, the latter being a hysterectomy, I promised myself that once I was past this hurdle I would make the adjustments needed to make life with my other conditions easier. I began using a wheelchair for outings that required hours of walking and using a walker for shorter excursions. After a few months my abdominal pain returned with a vengeance. Without having ovaries or a uterus to attach to and pull, the adhesions began adhering to and pulling on my bladder, rectum, and bowels. Once again I put my life on hold. I have no happy memories of the two years it took to find a surgeon to help me. My life consisted of emergency room and doctor visits. I told myself that I could have fun after I was better. Oh how I wish I could go back in time and slap younger me upside the head. What the heck was I waiting for????!!!!!!

I continued to struggle even after the three surgeries it took to correct my hysterectomy. I never learned to work with or around my chronic symptoms and pain. Instead I would fight my body and repeated the “live” for a few weeks and be bed bound for weeks cycle. It wasn’t until after 13 years of living with pain that I would finally take control over my life and stop allowing my conditions to dictate how I would live. For the past four years, I have been living!!! No, my house isn’t spotless. No, I have not been cured. No, I am not up and moving every day. But I do allow myself to have fun. If going out for coffee with a friend means that I won’t have the energy to load the dishwasher for several days, so be it. My emotional state is more important than how clean my house is. I don’t wait until I am feeling better to enjoy Disneyland with friends and family. Why? Because if I waited until I felt better it would never happen.

In the past few months I found myself falling into old habits and putting plans on hold. Thankfully I recognized this and was able to put a stop to it. I don’t know how I am going to feel the next day, week, or month. But I do know that if I wait for that mythical “better” day to arrive, I will have done nothing but existed. As I get older, I find myself more accepting that our time on earth is limited. I have a choice. Either I live the best I can with the pain that I am in or I stop living. So while I am still searching for relief, I will continue to make plans and enjoy doing the things that I love. I could be killed in a car accident next month, do I really want to spend my last days solely focused on finding a surgeon or do I want to live? I want to live! This means making plans. Worst case is that I will have to cancel them. I am making more adjustments and approaching tasks differently so that I can still do what I enjoy. I am making time for fun. I am still struggling with how much my energy level has been reduced and acknowledge that it will take time until I find a new rhythm. And that is okay!! What is important is that I am not allowing my conditions to be my main focus. Instead my focus is on going to Disneyland, enjoying time spent with friends and family, blogging, writing, along with designing a tool to assist the disabled at Disneyland and wheelchair accessories. I could put all that on hold and wait to be healed, but why??? So what if it takes me longer to accomplish what I have begun? So what if I can only work a few minutes a day? My projects serve as a distraction. They don’t reduce or take away my pain, but they do allow my brain to think about other things rather than be consumed from the anguish my physical pain causes.

The most important piece of advice that I have to share with all my chronically ill friends is this: Live! Don’t put off doing the things you love or have wanted to try. Find alternative ways to do them or adjust your goal. Example, I can’t visit Disneyland like I used to (on foot). But I can still go as long as I have someone to push me in a wheelchair. Anyways, my hope is that you are finding joy in life. There is nothing wrong in praying or hoping for a cure, just don’t forget to live while you wait. While this past year has been filled with a pain level I never thought I would have to endure, it is also full of many joyful memories.

Wishing you a day filled with many reasons to smile,

The Disabled Diva

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