My New Daily Day

Recently I read an article from another rheumatoid arthritis sufferer. She wrote about a day in the life of her and coping with her RA. I thought I would share here what daily life is for me - mother, full-time employee, wife, friend and daughter in Christ. I don't want sympathy, I just want to raise awareness for those who struggle with chronic pain and illness. I am learning to say "no" to invites, kids, friends, family, etc. I am learning to listen to my body rather than my emotions and mind. I am learning to let go of things I "used" to do, know I have a new normal. I am less active outside to the home. But, with that I am more active at home. Well, at least a new active. So here is a day in the life of the Rheumy fighter!

6:00 am - alarm goes off. I stretch and hit snooze. I begin my stretches in bed in order to "oil" up my joints.

6:25 am - Caleb lets me know they are ready to go. I get out of bed, put my slippers on, brush my teeth and head to the car. I take the boys to zero hour at the high school.

6:50 am - Sit in the driveway enjoying the warmth and quiet before I go inside.

7:00-7:30 am - prepare dinner for the night. Mostly crockpot meals, but some I do most of the prep work so all George has to do is put it all together when he gets home. Once done, I clean the kitchen.

7:30 - 8:00 am - back lunch, finish dinner and dishes, try to get bible study in.

8:00 - 8:30 am - Shower and get ready for work.

8:30 - 9:00 am - Drop Sophia off at school and drive to work. Some mornings this condensed if Sophia has strings at 8:00 or I have an early morning meeting.

9:00 am - 5:30 pm - Work day. This could be computer work, field construction oversight, meetings, inspections, etc. When my RA is somewhat under control I go for easy walk/jog at lunch. Lately, my lower back has flared, so I sit at my desk and read a book.

5:30 - 6:00 - Drive home

6:00-9:00 - Eat dinner, do dishes, help with homework, plan for the next day, drive kids to dance, pick up kids from schools, bible study, etc. It all depends on the evening!

9:00 - ? - This depends on the night. If I am exhausted and able I will go to bed. Some nights I am exhausted but my body doesn't want to go to sleep until 2 am. Many nights my husband and I have our shows we watch.

I honestly could not do this without my husband. Have 2 boys in high school including high school sports (neither have their licenses), 1 girl in middle school and 1 girl in elementary school, our life is crazy busy. We have dance, piano, play practice, sports, soccer, etc. The only night we normally have no activities is Friday night. This is reserved for pizza and movies.

Most days I want to stay in bed with a heat blanket on and keep the pain at bay. In reality, I push through the day and when I get home I take a pain pill and muscle relaxer. These help take the edge off. Some days when my flares are bad I can't pour a glass of milk. I push through knowing God will get me through each day. The other thing I have noticed I struggle with is "brain fog". I forgot things. A lot of things. Names of places or items. Conversations I had with my family. Work emails that came in. I am learning to make lists and to dos everywhere.

So, if I cancel on a get together, or it seems like we only ask people to come to our house, it is because I know my limits. It wears me down to be away from home. Some days my energy is only reserved just to get through work.

Hopefully this helps you have a better understanding of what it is like to live with chronic pain and chronic illness. I don't look sick, so it is hard to remember that I am.

I confess some days I want to give up. I want to never leave my house. But then I remember God is there for me each morning. His mercies are NEW every morning. He has me in his hands.

A time for everything

I knew today was going to be tough. I prepared mentally for it all week. Snacks to make for soccer, soccer game, team lunch, my daughters Nutcracker practice, our grandson's birthday party, getting kids to different locations, dinner, trick or treating them sleep over preparations for my daughter. I knew by evening I would be exhausted. I also knew that I would have Sunday to recuperate. So far I am surviving. Of course tonight is a night of fitfull sleep - hence 2am blogging. 

I have been really trying to focus more on my health, limits, and spending as much quality time with my children as possible. My children are my blessings God gave me to watch and protect. Everything I do and chose is for them. I chose to push my limits today so that each child had something special for them. I love being a mom. 

For the longest time I had trouble saying "no" to people. Whether it was for coffee, to help someone, volunteer somewhere, or join something, I felt like I had to say yes. Now I say no when I need to. God has shown me it is ok to say no. Boundaries are crucial. I can't let others dictate my choices. I have always worried what others thought of me. I felt like I had to prove to others I was a loving wife, a patient mom, an understanding friend, etc. Over the last few years I have seen how damaging these thoughts have been to me mentally and physically. I am not here to be perfect. I am only here to be the woman God created me to be. This means I can say no to others. Including my kids. Just tonight we were going to take Phia and her friend to the movie. But my husband and I knew it was too much for our exhausted daughter. So we said no. I also knew it was going to be too much for me. 

Sometimes I need to say yes. This can be a tough one. Most people are genuinely helpers. So why is it so hard to accept help? For me I tried to hide my illness. Or I blow it off as "I'm doing well." When in fact I can't even wash dishes or fold laundry. So I am learning to ask and accept help. I have to remember that God calls people to serve so who am to question their offers to serve us?

Will you pray for me to learn to say no and yes when I should? Pray I quit worrying about letting people down. Or obsessing about if someone is mad at me or disappointed in my choices? Pray I seek Gods direction?

Thank you Jesus for being my rock, my shelter and my refuge. I confess I am scared and hurt by people's reactions to me in the choices I make. I confess I overdo it. I confess I need help. Thank you Jesus!

Fatigue and Brain Fog - They exist!

For the last year, my RA has progressively gotten worse. I have been on all the drugs possible. Most work for a couple of years, and then stop. So now I wait for the next new drug to hit the shelves – hopefully soon. This time it isn’t as much the joints that is giving me the problem, as it is the brain fog and fatigue. Everything I do wears me out. It’s like the video games where your player loses energy as you get shot at or punched at. I lose energy because I did the dishes, or I showered, or I walked downstairs to get the laundry (this is a killer for me). Every night I mentally prepare my body and brain for what needs to be done the next day. Before I get up every morning I have already, in my mind, packed my lunch, prepared dinner, planned my shower (hair washing day or not), and calculate if I can get the dishes put away. This is not a controlling attitude, this is the only way I can get myself ready to face the day. By the time I get in the car to drop my daughter off at school and drive 30 minutes to work, my energy bar is half way used up. Thankfully I have a 30 min commute. During that time I listen to books on tape. The rest boosts my energy up a little bit. Some days I get to park a few blocks away from work. Other days, I park in handicap parking near my office. Please don’t judge me on the days I park by the office (this is a whole other post). Some days I park farther away feeling great in the morning and realizing later that was a mistake. Or some days I park close to work, and by lunch I am up for a walk. A year ago I used to jog 2-3 miles during my lunch hour. This year, I don’t. I love my job. It is so fun and so rewarding. I hate that some days it is hard for me to work – not because of the job, but because my body isn’t cooperating. It is so frustrating. By the time work is over, I am typically down to about 25%. If I had a lot of activity I could be borrowing energy from the next day just to drive home. Then once I get home I typically have dishes to do, kids to round up for bed and general straightening of the house if I can. I love having a clean kitchen when I go to bed. Lately that doesn’t always happen. I am so blessed to have a husband that can cook dinner. Every week I plan our menu, but many times he has to cook the meals I planned. Whether it is schedule or RA, he does it for me. I love that guy. The hardest part of the fatigue for me is that it is invisible. You can look at me and I seem ok. The best way to describe fatigue is the exhaustion you feel when you have the flu.

So, have you ever walked into a room and wondered what it is you were there for? Most people have. It’s frustrating. So you walk out to try to “reenact” the event by walking back in. Sometimes it comes to you, sometimes not until hours later. For many rheumatoid arthritis sufferers, this is a common occurrence. We call it brain fog. I know there are people out there who don’t believe it exists, or that we are over exaggerating. We are not. It is real. It does exist. Part of my RA, as I mentioned above, is brain fog. It has progressively gotten worse. For a while I could hide it from others. In the last couple of months it has impacted every aspect of my life. For whatever reason I am not forming short term memories on many occasions. My children or my husband will tell me something and I have no recollection of the conversation. None at all. At work I struggle remembering simple words while I type or converse with co-workers. One day I couldn’t remember the name clip board. I kept saying “You know that holder that has a clip and it holds papers. Like a board with a clip?” It took me 5 minutes to remember what it is called. It scares me to think I could get worse. My Grandma Mabel had Alzheimer’s for over 15 years. She did great for most of those years, but it got really bad in the end. I am afraid I am already getting it, or this is irreversible. I try to keep lists everywhere I go, but if I don’t write it down right away I lose the memory. Most of the time never returning. I can’t imagine how frustrating it is for my kids and my husband. He is such a trooper being patient with me.

Through all of this I wonder if I will ever get better. I have hopeful days and I have down days. Overall, I know I can trust that God knows each day and what it will offer. I trust He is my ultimate Healer. He has gotten me this far in my journey, I know He won’t stop know. As I read scripture, pray and study His word, I am reminded of His love, mercy, and grace He gives me. He really is all I need. I lean on Him. Abide in Him. Trust in Him.

My hope in writing is to educate those who don’t know what RA is or what it can do to a person. I also hope to show those suffering from RA or other chronic illnesses that you are not alone. That we all are in this together. I have had this disease for over 20 years. Only in the last few years (one perk of technology) have I been able to reach out to others and join groups. It has helped me tremendously no feel so alone in the fight. So today I confess I hate brain fog and low energy, but I know that God is bigger than that and someday I will be released from all the pain, loss, and problems from my RA.

Ugh - Am I really alone in this?

For the last couple of months I could feel that my energy and life outlook was changing. I didn't want to admit it, but the pain was getting worse. I couldn't run like I used to, I was getting more and more tired, I began snapping at my family and my depression was getting worse. After living with this stupid disease for 20 years I am just sick of it. I am sick of "looking normal" but feeling like I was run over by a semi-truck. I am tired of explaining what it means when I have a flare. I am tired of taking medicine for the disease and medicine for the medicines' side effects. I am scared of where I will be in another 20 years. A wheel chair most days anymore sounds like a dream. I have lost the joy of jogging and walking. It just isn't worth the pain anymore. I tired of feeling like just packing my lunch for work is like climbing Mt. Everest.

I want normal for my life. I want to not have to tell my daughter that she can't sit on my lap because it is too painful. I want to come home and have the energy to engage with my family. I want to come home and not freak out on my kids because the dishes weren't done. I want my children to live a "normal" life without having to do more than their age requires. Having a mother with an autoimmune disease makes them grow-up quicker than they should. I have to ask my 9 year to open jars because I can't. I am tired of feeling lazy or like a bad mom because I "just can't do this".

There is just so much wrong in my life right now, yet there is so much that is right! I have a home, a car, a job. I have an amazing husband, awesome kids, adorable grandkids. I have a great group of friends. Most importantly I have a God who looks past my complaints and comforts me where I am. Living with a chronic disease/illness sucks. On this earth, it never ends. I am glad to know that when I go home to my true home there won't be rheumatoid arthritis, or diabetes, or Lupus, or heart failure or HIV or any other disease. We will be healed and full of love and joy. Today, I pray, for a glimpse of that joy and peace in my life. A moment of pain free living - even if just for a moment.

When you see someone get out of a car with a handicap sticker - don't judge them. When you see someone with a service dog, respect them. We don't always know what is going on with other people. All we know is we all have our own struggles and we need to be compassionate to all! When you don't see my name on a volunteer list or even see me at all, understand that I just can't at that time. I want to volunteer for EVERYTHING, but I have learned over the years that my body cannot do as much volunteer work. It is so hard being humble and asking for help! I want to do all of it on my own. I don't like feeling helpless in life. I don't want my kids to remember their childhood as mom never doing anything. So, give grace to me. Give grace to others like me. We may look like we are all together, but most likely we aren't.

Unless you have gone through what we are going through, try to refrain from "advice". We know all about the new diets, the no gluten, no dairy, no meat, no sugar, low carb, etc. diets. We have all googled things like "Rheumatoid Arthritis anti-inflamatory" or "vitamins to help with chronic pain" or other things. I know you are trying to be helpful, but it just reminds us of our pain. Instead offer meals, or help cleaning, or watching the kids or the best - prayer. We always need prayer. Pray for good days, for extra sleep, for us to be less reactive or for some peace and quiet. Honestly, don't tell us you know someone who knows someone who has RA. Obviously you know someone - me!

Thank you for reading my post today. If you are someone or knows someone who struggles with chronic or acute pain - remind them they are not alone!

Exhaustion is a problem

I didn't stay up all night or get bad sleep, I just have a complicated disease. Sometimes it is hard to explain what fatigue and exhaustion is. You can look at me and just see an overweight thirty something. But really deep down I am a thirty something living like a 70 something. My joints hurt, my eyes burn, and I could sleep for hours at any given time. Today is especially hard. Not sure if it is from running the day before, the weather, being busy till bed time or just part of the rheumatoid in my system. I am not seeking sympathy, I just want people to see there are people in the world who have this. You can't see it or feel it, but it exists. 

I work full time which doesn't help. I am thankful to be blessed with a job that us flexible with me to take days off to "catch up". The hardest part is that only sleep can cure the hardest exhaustion. That is me today. I am praying the lunch nap will help. 

I also seek God's healing and blessings on my. Also on my daily who suffers from my inability to participate in a lot of the things the kids are involved in. God has blessed me with my children and now I want to bless them with my love and energy. 

Lord, I confess I am exhausted. I pray for miraculous strength!

Keeping the joints oiled

Not sure how many of you are on RA drugs, but I know that between the RA and drugs, the exhaustion gets hard and overwhelming. I try to drink water to help lower this before and after my MTX injections, but I am not good at remembering. Yesterday and today was especially difficult. Especially when Honey Bear asked me to stay home and sleep in with her (she would miss school). I was so tempted! People don't always understand how hard it is to get up some mornings. Instead I pushed through to get out of bed and take Little Miss to the bus. 

I made it to work convincing myself I did not need to go running today. "I am just to tired." That's what I thought. I prayed all morning for energy. Finally around 1115 I got up and dressed for running. I admit I really really didn't want to go. Having pushed myself to run, I am so thankful I did! In fact I beat my usual pace! 

Of course I am now paying for it in my joints, but I do have energy again. I have to keep telling myself to get up and keep moving. I know that if I sit or lay down for too long my joints will "gel" up. It is especially worse in my heel joint. 

I encourage you to get up and get moving. Don't let your joints gel, instead keep them moving! I do confess I don't do this all the time, but I know when I haven't!!!

Walking, running and paying for it

Lately I have been training again for 5K races. I love doing them as they are doable for my joints. I hope I can do a 10K some day but I am not sure about my body. I have been working hard to lose weight and get healthy. I admit I feel great as long as I am moving, but the minute I stop I pay for it. I walked about 2 miles today and now my heel and ankle are out if commission. Is it worth it? Somedays. 

Isn't that what life is about? Taking chances to see what the outcome will be? I feel guilty some days when I can barely function. I can't even do dishes without my feet hurting some days. People forget what RA is. They can't look at me and know I have it. Sometimes I think about buying a shirt that announces that I have RA. Then maybe I won't get as many judgmental looks when I have to use the driving cart or my handicap sticker. 

I used to be angry about this life. Why couldn't I be skinny and pain free? Thankfully God had shown me that this is part of a bigger plan. He knows my pain. He knows my struggles. He comforts me when I need it. Thank you Jesus for showing me love. 

 

For those of you who struggle with chronic pain - know that God heard and feels your pain. Lean on Him for comfort and support. He is always waiting.