An odd thought but true. As much as we need to rely on our support system a chronic pain person has to also support their support system. It is easy to become self obsessed when you are living with a lifetime of pain. Understanding that those around you are affected by this is a key aspect in having a wonderful support system. As much as they will never understand the amount of pain you are living with you can never understand how much they miss the person you used to be. They are just as affected by your pain as you are. It is easy to get caught up in the roller coaster of your new normal. Your people are on this roller coaster with you, you just happen to be the one in the front seat.
I think accepting this concept can be hard for many with chronic pain because the unfortunate facts are we loose friends and family as a result of living with RSD. Our first year of diagnosis is hard because many disbelieve the amount of pain and the diagnosis. That first year is one of the hardest and many of us fall into a state of depression from the loss of our old life. Once we start fighting back we also need to thank those who stuck by us. Then when we become a little more stable in our new normals we have to understand what those around us have lost and help support them. This isn't always easy because we still live in a type of constant pain.
I have realized that while my husband is always so strong and supportive there are times where he simply misses his wife. Gabriel is a helpful kid, always willing to help out, but he is a kid. I have wonderful parents but it breaks their heart that they cannot give their daughter a strong hug. My sister shouldered my tears in those early years and swallowed back her own. I have a strong best friend who listens to all my weaknesses. My in-laws have been so supportive and understanding in learning not just about me but the way I prefer to deal with my RSD. I have also found a wonderful on-line support group of other RSD'ers and we support each other in knowledge that we are all in different phases of living with the same disease.
Showing thanks is not the same as supporting those in your life who help you fight this pain. Supporting them means knowing when you need to dial it back about your own pain and listen to them about their lives. I try to remember this but every know and then someone says something or does something that makes me realize that I need to step back and take them into consideration.
On Sunday I had one of those moments. We went to my parents church to witness my nephews First Holy Communion. It was a day that I needed to use my cane to walk but as a Mom I keep some toys in my purse and because of my back pain I carry a little pillow to place at my back when I sit. Gabe my wonderful helper carried the pillow into church for me so I could be better balanced. When church was over I asked him to carry my pillow again and he replied "No, I want to carry your cane." I looked at him and said "Mommy needs her cane to help her walk, you know that." He gave me a stubborn look and said "No you don't. You have two healthy legs. You don't need to use a cane to walk." I grabbed him and hugged him. I told him "Baby, Mommy wishes that were true too." Really, there is nothing to say. He isn't in denial. There are simply days where my pain is too much for him to emotionally handle. He wants what we all want. For me to go into remission. He is just lucky enough to be a kid who can actually say that wish outloud.
Supporting my support group means that at times I have to let their emotions take center stage. I have to give them this room since they are so wonderfully supportive of me. I will never be rid of this disease but at least I have a wonderful group of people who help me fight for each day.
Today is my first pain free day after a 10 day flair. I cannot wait till Gabriel gets home from school so I can show him that Mommy does not need her cane today! I already showed off my walking ability to Leo. They helped me get through this past flair now it is my turn to support them in their needs. That is how relationships work, right? Give and take? It can seem that when you are living with something like RSD you need to take more than you can give, but if you change the scope in how you can give back you will see that your relationships can be 50/50.
Wednesday, May 22, 2013
Wednesday, May 15, 2013
Over doing it ...
May 10 2013 was Gabriel's 10th birthday. Lucas also had his class Parent's Day the same day. That meant I had to push myself harder to give my boys a memorable day. I woke up 2 hours early to make cupcakes for Gabe to take to school. After the boys were out of the house it was time to decorate, shop for the special birthday dinner of homemade pizza's, clean up the kitchen, pick Gabe up from school early for a special Friendly's lunch, head out to Lucas' school for the Parent's Day activities, come home and make my homemade dough for the pizza's. I pushed myself and was rewarded with smiles all around. My parents had come early in the morning so Mom could celebrate with Gabe before she had to be at work and they gave me their extra hands. Leo helped. Leo picked his Mom up and on his way back to the house he picked up the Icecream Cake. Lorena came over to celebrate Gabe's birthday dinner. My Dad slept over and we had Gabriel's best friend come and spend the night.
Saturday morning I woke up and moved a little slower. My dad had a cup of hot dunkin donuts coffee waiting for me. Then I made the kids pancakes and bacon for breakfast before Gabe's Tae Kwon Do class. I was exhausted. We had leftover pizza and I believe I went to bed around 3:30 till 8pm, woke up for an hour or so and went back to sleep for the rest of the night.
Sunday was a beautiful Mother's Day. Lucas woke me up at 6:30am but he let me lay in bed while he watched cartoons next to me. When Leo came home from work that morning he had Gabe deliver my roses. He then went back out to Dunkin Donuts to get breakfast. I was then treated to a hot bath before we had to begin another day of racing around. First up was brunch at 11am with Leo's family at this beautiful resteraunt on Lake Hopatcong called Pavinci's. We had a great time with the family, good food, and Lucas loved looking at all the boats pulled up at the docks. Lucas had insisted on many walks outside to look at the boats. From there we took a 'scenic route' (wrong way) to my parents house but could not resist a stop for ice cream at Cliff's in Ledgewood. When we finally made it to my parents house I enjoyed the few minutes of sitting on the couch doing nothing! After about a half hour we called up the Olive Garden (Mom's choice) to see how long the wait was. Too long for us so we began debating where else to go. Then Leo offered up a choice we all knew my Mom would jump at, Iberia Resteraunt in Newark NJ. They serve an awesome Rodizio and Sangria! It is a long drive but this is a meal you splurge on only once a year so it was worth it to make my Mom happy on Mothers Day! When we finally came home on Sunday Leo sent me straight to bed. I needed it. While at Iberia my pain began to flair. I know I pushed myself beyond my personal limits. I also wanted to feel good about how I looked so I wore heels for the day. During the day I had the normal "MOM" moment's and ran for Lucas' (despite my heels) when he announced he had to go potty at brunch and again when we were leaving my parents house and a beloved toy was left inside the upstairs bathroom. I walked a lot on Sunday wearing those heels. I looked good and I liked how I looked. Still, those heels were a bad idea considering the chao's of the day.
Then yesterday May 14 2013 was Leo's birthday. Nothing special planned this year (thank goodness considering my leg) because Gabriel has his NJASK testing this week. Instead I had Lucas stay home so we could spend some extra time with Leo. We went with him to get his hair cut and Lucas sat in the chair for a pretend haircut. We then went to the store so Leo could pick out his birthday presents, NY Rangers hat and flag. We took him out to lunch and on our way home we picked Gabe up early from school. We had about an hour at home to rest before heading out again to Leo's Mom's for his birthday dinner. It was a pleseantly quiet birthday, just the way Leo likes it with the exception that we usually go to the Zoo for his birthday.
So I am paying the price. Was it worth it? In my opinion, "Heck yeah!" You only have so many special moments in life and I will always have RSD so I cannot wrap myself in a bubble and protect myself at all times. I will protect myself when I make the decision that the pain is not worth the price of admission.
Now however I am still resting because I have Gabriel's Birthday Party this weekend. I also have my nephews First Holy Communion the following morning. I need to be able to walk a lot on Saturday and I will not be able to use the following day for rest and recovery. That means this week I am doing the minimal housework to get us by and relying heavly on Leo's help with the kids. Leo will come home in the morning to put Lucas on the bus and tries to be here when Lucas gets off the bus. He helps me with the groceries and keeping up with the daily living room mess the boys make. He is also helping with Lucas at night time so I can be in bed resting. He does all of this for me while still working both of his jobs. God Bless him!
This is one example of life with RSD. I hate that the flair happend during my Mother's Day dinner with my Mom. I knew I was pushing myself but I can never predict exactly when or why a flair will start. My Mom was upset because well, she is a Mom and doesn't want her daughter to live her life like this. I reminded her how busy I have been lately and that I did wear heels knowing I would have to chase after Lucas. I know my stress level plays into it, while I did have a great weekend celebrating Gabe's Birthday, Mother's Day and then Leo's Birthday I also received that letter regarding my recharger for my SCS. I have also been dealing with stress regarding Gabriel's school issues. The warmer weather of last week helped me feel good enough to push myself all week with cleaning the house. Everything adds up and equals a flair.
Does that mean I shouldn't push myself? I should never wear heels even if I am feeling good at that moment? If I wrapped myself in a bubble could I avoid the pain? None of these questions have a perfect answer because I also have to consider what type of life I want to live. I just have to ask myself before I do anything "Is this worth a flair?" If I am able to become pain free by Saturday then push myself to make sure Gabe has a great time at his party, be present for my nephews First Holy Communion and then backslide into a flair, then I will answer "Yes, it was worth it."
Saturday morning I woke up and moved a little slower. My dad had a cup of hot dunkin donuts coffee waiting for me. Then I made the kids pancakes and bacon for breakfast before Gabe's Tae Kwon Do class. I was exhausted. We had leftover pizza and I believe I went to bed around 3:30 till 8pm, woke up for an hour or so and went back to sleep for the rest of the night.
Sunday was a beautiful Mother's Day. Lucas woke me up at 6:30am but he let me lay in bed while he watched cartoons next to me. When Leo came home from work that morning he had Gabe deliver my roses. He then went back out to Dunkin Donuts to get breakfast. I was then treated to a hot bath before we had to begin another day of racing around. First up was brunch at 11am with Leo's family at this beautiful resteraunt on Lake Hopatcong called Pavinci's. We had a great time with the family, good food, and Lucas loved looking at all the boats pulled up at the docks. Lucas had insisted on many walks outside to look at the boats. From there we took a 'scenic route' (wrong way) to my parents house but could not resist a stop for ice cream at Cliff's in Ledgewood. When we finally made it to my parents house I enjoyed the few minutes of sitting on the couch doing nothing! After about a half hour we called up the Olive Garden (Mom's choice) to see how long the wait was. Too long for us so we began debating where else to go. Then Leo offered up a choice we all knew my Mom would jump at, Iberia Resteraunt in Newark NJ. They serve an awesome Rodizio and Sangria! It is a long drive but this is a meal you splurge on only once a year so it was worth it to make my Mom happy on Mothers Day! When we finally came home on Sunday Leo sent me straight to bed. I needed it. While at Iberia my pain began to flair. I know I pushed myself beyond my personal limits. I also wanted to feel good about how I looked so I wore heels for the day. During the day I had the normal "MOM" moment's and ran for Lucas' (despite my heels) when he announced he had to go potty at brunch and again when we were leaving my parents house and a beloved toy was left inside the upstairs bathroom. I walked a lot on Sunday wearing those heels. I looked good and I liked how I looked. Still, those heels were a bad idea considering the chao's of the day.
Then yesterday May 14 2013 was Leo's birthday. Nothing special planned this year (thank goodness considering my leg) because Gabriel has his NJASK testing this week. Instead I had Lucas stay home so we could spend some extra time with Leo. We went with him to get his hair cut and Lucas sat in the chair for a pretend haircut. We then went to the store so Leo could pick out his birthday presents, NY Rangers hat and flag. We took him out to lunch and on our way home we picked Gabe up early from school. We had about an hour at home to rest before heading out again to Leo's Mom's for his birthday dinner. It was a pleseantly quiet birthday, just the way Leo likes it with the exception that we usually go to the Zoo for his birthday.
So I am paying the price. Was it worth it? In my opinion, "Heck yeah!" You only have so many special moments in life and I will always have RSD so I cannot wrap myself in a bubble and protect myself at all times. I will protect myself when I make the decision that the pain is not worth the price of admission.
Now however I am still resting because I have Gabriel's Birthday Party this weekend. I also have my nephews First Holy Communion the following morning. I need to be able to walk a lot on Saturday and I will not be able to use the following day for rest and recovery. That means this week I am doing the minimal housework to get us by and relying heavly on Leo's help with the kids. Leo will come home in the morning to put Lucas on the bus and tries to be here when Lucas gets off the bus. He helps me with the groceries and keeping up with the daily living room mess the boys make. He is also helping with Lucas at night time so I can be in bed resting. He does all of this for me while still working both of his jobs. God Bless him!
This is one example of life with RSD. I hate that the flair happend during my Mother's Day dinner with my Mom. I knew I was pushing myself but I can never predict exactly when or why a flair will start. My Mom was upset because well, she is a Mom and doesn't want her daughter to live her life like this. I reminded her how busy I have been lately and that I did wear heels knowing I would have to chase after Lucas. I know my stress level plays into it, while I did have a great weekend celebrating Gabe's Birthday, Mother's Day and then Leo's Birthday I also received that letter regarding my recharger for my SCS. I have also been dealing with stress regarding Gabriel's school issues. The warmer weather of last week helped me feel good enough to push myself all week with cleaning the house. Everything adds up and equals a flair.
Does that mean I shouldn't push myself? I should never wear heels even if I am feeling good at that moment? If I wrapped myself in a bubble could I avoid the pain? None of these questions have a perfect answer because I also have to consider what type of life I want to live. I just have to ask myself before I do anything "Is this worth a flair?" If I am able to become pain free by Saturday then push myself to make sure Gabe has a great time at his party, be present for my nephews First Holy Communion and then backslide into a flair, then I will answer "Yes, it was worth it."
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