"Super Mom" or "Super Rachel" was how I viewed myself as well as many other friends and people in my circle of life. I always had it together. I played the role of overachieving mom, wife, daycare and preschool owner, PTA volunteer and teacher helper, Softball and Basketball Mom (never missed a game), made sure my kids tried every sport and activity available, threw over the top birthday parties for my kids, volunteered at church and was a Women's Ministry leader and event planner, attended Bible Studies faithfully, JBQ (Junior Bible Quiz) Coach for all 3 of my kids for 6 years, planned monthly "friend" get-togethers, traveled with my kids and did family activities, professional shopper (this one was at the top of the list), avid baker, hiked in the mountains, rode my bike everywhere, walked about 2-3 miles a day and later in life started a business, Gluten Free Mama and wrote two cookbooks. Not only did I perform all of these tasks, some would say I went "OVERBOARD" with most of them, and not even skipping a beat. Hence, how I got my nickname, Super Rachel or Super Mom. Somehow, I was able to perform all of those tasks and still be 100% mom and keep my house somewhat clean, orderly and have dinner on the table every night.
Those days have are long gone and now a thing of the past. Thanks to Trigeminal Neuralgia and MS, I am lucky to just make it through a day. MS has made me so fatigued that getting out of bed and showering takes up most of my strength for the day. Fatigue is so different than being tired. When you are tired you still can do things. When you are fatigued, you have not strength for simple things, you feel like your body has a huge 2 ton weight attached to you and you have to push through the fatigue with every amount of energy you have just to do simple tasks. Then you suffer the consequences of those simple tasks and have to sleep for 2-3 hours to recover. Half of my body has numbness making it difficult to walk. My right leg has become so week that it drags, slides or sometimes I cannot even get my mind to make it move. It has gotten to the point to do any activities outside my home, I really need to be in a wheelchair. My bedroom is on the second floor. Sometimes I will look up to the top of the stairs and think that it is impossible to make it to the top. My compassionate kids and husband will see my angst and discouragement in my eyes as I look to the top of the stairs that they will come behind me and help me walk to the top of the stairs without being asked. I dream of the day I can have a master bedroom on the main floor and a bathroom next to it. When I go places with the kids like shopping or to the grocery store, I will be doing totally fine. I can walk through about one store or to the back of one store. Then my leg will start dragging and my strength will deteriorate and from that point I either need to hold onto my kids' or husbands arm or sit in a wheelchair. It is silly and discouraging. I would love to just spend the day shopping with my girls and be able to walk the entire time or not have my neuralgia triggered.
The Trigeminal Neuralgia is far worse than the MS and it has virtually robbed me of my life as I knew it. The pain is so extreme that sometimes I just would rather die. Don't confuse that with being suicidal, suicidal I am not. The extreme pain extends from behind my ear and branches off into the three nerves that are in the face, the forehead, through the middle of the face towards my nose, and the lower nerve that reaches across my jaw and into my teeth. Often it will start with electric shocks that vibrate through the nerves and then after that subsides it is just pain. My type of Neuralgia rarely gives me breaks in the pain or triggers. Some people will have months of breaks between attacks, I do not. The swelling, agitation of the nerve and pain around the ear makes it very difficult for me to sit up straight for more than an hour or so, so I have to sit in a reclined position to avoid severe pain. This has caused me to only to be able to work from home and from bed or the couch. I don't eat much because it hurts to chew and usually sets off the pain. I have to choose soft foods or liquid foods that don't require pressure when chewing. I cannot bend over to pick things up or to get things off of a lower shelf. If I do, I can black out, trigger the nerve, and I have a strange reaction where I lose control of the right side of my body. It might be a combination of the MS and the Neuralgia, but I won't be able to communicate, yet I can hear, and my face will droop and my eye won't open. Sometimes when my nerve is going off, I will drool. Embarrassing huh! Noise triggers the nerve too. Noise is so incredibly painful for me that it has caused me to not be able to go to church, decreases how long I stay at the kids games or music events, and I avoid practically anything that will be loud. I often will wear earplugs as well as ear muffs just to get by in certain "normal" daily activities. I have to travel for work and the pressure from the air in the plane and the altitude changes is so painful that I hold my husbands hands until they hurt him and cry into his sweatshirt so no one will hear me. Most days the pain is so extreme that I just have to have pressure on my ear and lay down and sleep. Sometimes when we go out, the nerve will start hurting and the pain will be so bad I can't hold my head up. I choose not to drive unless it is within 5 minutes from home, because I don't ever want to get caught in a situation where I can't make it home.
The days of being "Super Rachel" or "Super Mom" are long gone.
I can't clean anymore. Mopping and vacuuming are big no no's. I can't scrub the tub. I can clean the toilet and the sinks, but can't sweep up the floor. I can do laundry, but shouldn't because bending over and putting things in and out of the machine is not good for me and walking up and downstairs to the basement is tough, let alone carrying a load of laundry. Folding the clothes literally makes me exhausted. I can't stand up long enough to do the dishes. I either get dizzy, have no strength. I can't do the grocery shopping anymore, it completely wears me out and that is if I can't make it through the entire store without an attack. I can't stand laying on the couch or in bed and seeing and thinking of all the projects around the house that I can't do because physically I can't do them.
I deeply depressed that I cannot cook or bake anymore, which happens to be my passion. If I have any energy, I put it into work or spending time with my kids so creating new recipes are rare and few between. By the end of the day, I either have no strength to make dinner or my neuralgia is so bad that I can't stand up and work through the pain. I force myself to make dinner at least once a week. Family dinners are very important to me.
I am no longer involved in school activities, no longer a JBQ coach, no longer involved in Women's Ministries at church nor attend Bible study and rarely make it through an entire service at Sunday Morning church. I was the glue that kept our group of friends connected, now I rarely see them and often wonder if they resent me for not being available anymore. I no longer can throw tea parties, over the top birthday parties for my kids, or even just invite couples over to play card games.
I am sad that I can't go to all my kids events, be their coach, be the obnoxious mom that is always cheering my kids on at the games, go hiking with my family, or have spontaneous family trips here and there. I feel guilty that I can't clean my house and do household projects and make dinner or have home-baked snacks when the kids get home from school. I am brokenhearted that my involvement in church is little to none anymore. I miss my friends like crazy. I am sad that my kids have to push their mom in a wheelchair when we go places. I am brokenhearted that my kids have to explain to their friends why I don't look normal anymore or have the wrong words come out when I speak or have to walk with a cane or sit in a wheelchair. I am not "Super Rachel or Super Mom" anymore. I MISS ME!!
On the Bright Side...
My husband likes to cook so he makes sure we have dinner on the table most nights. I am so thankful for him. I have taught my girls simple meals like Dutch Babies, Egg Sandwiches, and Spaghetti so sometimes they pitch in and help. Sometimes, I will prepare the meal at lunch time and just throw it in the oven at dinnertime.
I insist that no matter what I remain a GOOD MOTHER. I insist that my kids stay very active in their activities, and I insist they get good grades in school. I make that a priority. They should not have to change their life because of my illness. I embrace the moments that I can go to their games, plays, vocal lessons and piano lessons. I am thankful for the little moments. Helping them put together their "Who am I books at school." Ordering corsages or boutineers for their prom dates. Hanging out around a puzzle and hearing them talk about their day. Helping them with their homework. Watching our shows on TV. American Idol, America's Next Top Model and Psych are family favorites. Snuggling up with my baby(now 8) and playing on the computer or watching tv. Helping them reach their goals like going to DC for the 8th grade trip, inspiring them to stay involved in sports, teaching my step son about shivelry, listening to the kids talk about their day, open up about their struggles with their teachers or kids at school, or watching the kids be goofy and being goofy with them. Although, I can't make it to everything I force myself to be available all the time, either through texting, picture texts, phone calls, and being available at home. I have several trade shows that I am doing this year for my business. I am taking one or two of my children with me to each one to have one on one time with them, an opportunity to just bond individually. My physical body may be broken but my relationship with my children is NOT.
I am thankful for my husband, Rob, who makes sure we have dinner each night, plays taxi driver for the kids and their events, takes on the big role of keeping the household from falling apart, keeps my business afloat, loves me whether I am feeling good or feeling miserable, loves my kids as if they were his own and spends quality time with all the kids. I am thankful that he enjoys spending time with me, even if all I can do is sit on a bar stool next to him while he is making dinner or be in the same room with him while he works and just support him.
Grocery shopping completely wears me out. So Gracie my nearly 16 year old daughter now does all the shopping. That has made a big difference. I feel bad that she has to take on this responsibility, but it is a good life skill to learn before she leaves home. I have turned it into a teaching and bonding experience. I have been teaching her to look for sales and compare prices. We will text back and forth and I help her make decisions. She feels like she is helping and has a since of freedom and trust from me and is learning to be independent. Gracie is also my personal driver. She takes me anywhere I need to go. She takes me shopping a lot. She loves to shop and so do I and so do Cassie and Lexie.
I am thankful for my support system. My friends are always there to support me and encourage me. The Carlyle In-laws have always been a beacon of support. They never miss one of my kids events and would drop everything to help me if I needed it. My new Edington In-laws have been extremely supportive and have really dove into being involved with all our our kids. Today Grandpa Dave took my girls to the Lady Griz championship game and grandma Rita put on a romantic dinner for Josiah and his friends for their prom dates.
Thankfully, God has blessed me with an amazing team at work that fills in all the holes and keeps my business thriving. That includes my accountant, designer, local businesses, MCDC, MMEC, G-free Foodie and all my gluten free friends that encourage me and support me.
I didn't choose to be sick. I didn't choose to not be able to walk normal or not at all. I miss the old Rachel more than you will ever know. I want so badly just to be normal. But this is my life now. I do CHOOSE to be a good mom, I do choose to be a good wife and I choose to not give up on life. I choose to have Joy.
With all that said, it doesn't mean that everyday is not a struggle. I have to fight through all of these things everyday. It is a daily choice.