You know that feeling. You wake up in the morning with the energy that you can conquer the world. You have a mental list of things that you want to accomplish. You shower and dress. Suddenly your energy is depleated. You manage to get the kids breakfast and ready for school. You barely manage fixing your own breakfast. You have been out of bed for one hour and already you feel like you need a two hour break. You wonder if you will be able to accomplish anything on your mental to do list. Talking about that mental list, you even struggle to remember a few items that were on it or why they were important. The more you push through the worse you feel and the more you forget. It is 10 am and you wish you could crawl back into bed. It is the chronic pain version of the cliched saying "Eyes are bigger than your stomach" in regards to appetite.
If you have RSD this scenario probably sounds familiar. This describes many of my days. I had a great nights sleep. I have plans and appointments for the day. I WANT a clean house for when Lucas' therapist arrives or if we have family coming over. I WANT my kitchen clean and dishes put away to make my kitchen feel warm and welcoming. I WANT to make a healthy homemade meal for my family to enjoy at a clean and properly set dinning room table. I WANT to be able to keep bedroom doors open to show off immaculate beds. I WANT the laundry kept up to date with clothes and towels neatly folded and put away. I WANT to be able to do these things. RSD states that my wants are not resonable with what my current state of abilities are.
Sort of sucks doesn't it? Well, you learn how to adjust and lower expectations. You still feel embarresed when a relative stops by for a visit and discreatly washes your dishes and straightens out your dinning room table. You fully appreciate their help because it is not their responsibility to help out. As embarresing as it is there are days I still pray that an Angel will descend from heaven just to help clean up. Saturday's my husband will steamroll the house and quickly straighten it out and clean it up. I will watch silently, humbled that he can work his crazy hours and still find the energy to pick up the pieces I have to let fall because RSD has determined that I could not help clean at all.
About six years ago I had the surgery that ended my career. The surgeon and surgery were not at fault. Simply the numerous surgeries to manage the SCS had left me with chronic back pain. I had found my limit. I could not simply push past the combination of RSD and chronic back pain with the limitations they both force apon me. I stopped working and I stopped driving.
To an independent woman who fought RSD to gain these abilities this felt like a giant leap backwards. But, I had a family to think about. What good was I to them if I pushed my limits every day to work and drive only to then go home and be useless. Sure the money was nice when I was able to work. Driving myself meant I had a strong level of independence. We had a nice joint income. I drove myself to appointments and was able to take Gabe anywhere I wanted to go. When I was able to drive I would visit my sister for a week each summer.
Loosing those abilities was hard. It hits the pride sure but when you suddenly are needing to rely on others it is hard to adjust to. This is where a great support system comes into play again. Leo has always been great and thanks to his flexible hours at work he is often able to accomodate most of my needs. My best friend has been great and would drive for over an hour to come to my house just for a girls day. She also drove me once to Maryland for a long weekend (taking off of work) so I could see my sister after her own back surgery. She has always been great and supportive but even she has her limits, we don't live in the same state so it's not like she can easily jump in her car and be here for me. My parents are the same. They have tried hard to be able to drive to me, rearrange schedules if Leo cannot take me to a doctors appointment, and drive to my house on Sunday's for church. My mother has often taken off of work for a week when I needed surgery to help pick up the slack around the house and take care of my needs. Being 30 years old and relying on your parents help is very humbling. Having a friend who gives more than she receives but is always there for you because she loves you is a blessing. I am blessed to have a great support system.
Still it would be nice to have that Fairy Godmother who could swoop down, wave a wand, abracadabra you have a clean and tidy house. I often think about getting a cleaning service to come in once a week but it would definitly streatch our dollar considering I have a fixed income from Social Security. I love our country, USA is a great place to live but other countries actually give house cleaning services when you are on a disabled status. Makes sense to me, if you are disabled from work how the heck are you supposed to keep up with the housework - sounds to me like a man set up our SSD program because the old fashioned man doesn't think keeping house is the same as a real job. Joke! Do not be offended!!!
With all of that being said. How does an experianced person with RSD manage those days when they simply do not have the energy to accomplish what needs to be done that day? No, we don't push past it and do it all anyway. No, we don't call someone from our support system and beg them to come over and clean our house. We let it slide, let it build up another day and pray that the energy comes back enough for one task at a time. An experienced RSD'er knows that you cannot use energy that simply is not there because you are then asking for a flair. So, you take the energy as it comes and take a it one task at a time. Sometimes it is a small task like folding the blankets on the couch or putting the papers on the table into a neat pile. Other times we will use a sudden burst of energy to plow through the sink stacked high with dishes. Eventually it will all get done and if not then we know our family and friends will understand, they won't judge our imperfect home. That is the only way to manage the lack of energy living with RSD brings to our daily lives.
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