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. 

Will this weather end?

How many if you struggle with the weather and how it affects your overall body? My joints are struggling with all this snow, rain, cold and gloom. Then because of the pain and soreness my mood gets gloomy. It takes all of me to be motivated in life. I know have to get things done, but I am afraid to overdo it and face the consequences. 

Paul teaches us to remember "I can do all things in Christ who gives me strength." Philippians 4:13. I have to trust this is true. I pray unceasingly for strength. Arthritis is the silent disease. You can't look at me as see the pain. And I don't like walking around telling everyone of my disease. But I can tell God about my struggles. Through this prayer and relationship I receive peace, strength and comfort. He is my comforter. So today I confess I struggle with this weather, but I hold tight to the strength Christ gives me!

Surviving

Some days this is all it takes to get through - surviving. Last night was a rough night. I fell asleep for about 30 minutes and then woke to pain. My joints were on fire!!! I eventually tossed and turned enough my body wore out and fell asleep. All day long I still feel like I got run over by a train. Days like this make it hard to want to do anything other than curl up on the couch. But, given that I work, I am a mom, a wife, etc. I can't give up. Just typing this is killing my fingers. I have to believe there is going to be rest and comfort at some time in my life. I am going on year 20 of this disease and yet I know I will probably have 50 more! God knows my sufferings and He knows how long I have. So for today I will thank him for another day here - pain and all. When I think of the pain, I have to remember there is always someone worse off. I have a job, food, friends, a place to live, a car, a family, etc. I started this blog to keep track of my days - good and bad - as well as to reach out to others who suffer from RA or other chronic pain. This life given to me is not easy, but I have to be thankful it is the life God chose. So, today I confess I am jealous of "healthy" people. I do wish I could run without pain, open the jelly jar for my daughter and sleep a full night. With that confession I know that tomorrow is another day full of surprises and God's love. I pray for rest tonight and a new outlook on wanting something else.