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Rheumatoid Arthritis

Addressing Fatigue and RA

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“Snap out of it.”

“You just need a good night’s sleep.”

“Maybe if you got out of bed, you’d feel better.”

If you have fatigue, chances are you’ve heard one of these or something similar. And if you suffer from fatigue, you know that they aren’t true at all.

Chronic fatigue is more than just being tired. It’s more than needing a cup of coffee or a quick power nap. Chronic fatigue can be debilitating and if you have Rheumatoid Arthritis, there’s a good chance that you deal with it on a regular basis. If you are fortunate enough to not suffer from chronic fatigue, a good way to understand how it feels is to think of the last time you had the flu or a serious illness. You probably remember resting, trying to watch a tv show or read a book and falling asleep a few minutes in. You awoke later to feel the same, still exhausted. The rest you had didn’t provide you with any energy at all.

Before I was diagnosed with Rheumatoid Arthritis a few years ago, I found myself falling asleep while getting my hair done. Sure, getting your hair done can be a bit boring, but definitely not enough to literally put you to sleep. I remember my initial reaction being one of fear. Not fear as to why I was falling asleep but fear that if I jerked awake while getting my hair cut, I could end up with quite a messy situation!

Fast forward a few years- my disease activity has gone up and down and much like the pain in my joints, my fatigue ebbs and flows as well. The difference is, I can medicate my pain- I can put an ice pack on it, take a pill, throw on a compression brace and I will ultimately (hopefully) get some relief. Fatigue on the other hand, isn’t that simple to overcome but here are some strategies that may help you:

Talk to your doctor.

  • This is important. Your doctor needs to know how much fatigue is impacting your life- just like your joint pain or stiffness.
  • Your doctor may also want to rule out any other medical causes for your fatigue so this should be your first to-do.
  • Be sure to explain how your fatigue is different from your feelings of being tired. When I first brought up my fatigue to my rheumatologist, she asked if I was getting enough sleep, if I possibly needed a sleep study. I had to really think about how to explain the difference I was feeling- it wasn’t something that would go away with a nap or 10 hours of sleep. It was a feeling of exhaustion from simply being awake.
  • Be sure to explain how the fatigue makes you feel. For me, it was scary. The fatigue would hit so strongly that I was afraid to drive at times. Make sure your doctor knows this.

Plan your day.

  • Fatigue is disruptive. It’s important to schedule a time to rest during the day. I know that when my daughter and I run errands on Saturday mornings, as much as I want to go to the gym in the afternoon and clean the house, I must lie down after lunch. I have to. Sometimes just knowing that my nap is coming, gives me that extra boost to get through the long Target line.

Communicate.

  • This is hard one, I know. People tend to understand and empathize with pain. If you’re in too much pain to do something, that’s ok, it’s not questioned. But if you say you’re too tired? That’s not always met with the same understanding.
  • Try your best to explain to your family, friends, and coworkers how your fatigue feels, how it impacts you and even how it impacts them. I had to have conversations with my husband like those I had with my doctor. I had to explain how dangerous the fatigue made me feel and how this wasn’t something I could nap away.
  • These conversations will vary with whom you’re speaking with. My kids see being tired as needing sleep and nothing else. Adults in my family have a bit more perspective since they can see my disease as a whole but they still have told me at times to drink a caffeinated drink or go to bed earlier.
  • It’s hard to concentrate or to be in a good mood if you’re struggling to stay awake. Explain that you are a better wife, son, employee, or friend when you get the rest that your body requires. Sometimes when people hear how something impacts them, they are more likely to address the problem.

Most importantly, try your best not to feel guilty (way easier said than done, right?!) and know that you are not alone. You didn’t choose this disease and I guarantee you would give it up in a heartbeat. There are plenty of other patients, just like you, battling with fatigue each day. Make sure you share your story and what has helped you in managing your fatigue. You can also visit Joint Decisions on Facebook to find more information and resources.

 

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

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2,016 Miles in 2016 Rheumatoid Arthritis

Looking Backward to Look Forward

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Sometimes you have to look back to look forward. Today is one of those days for me. I worked all day, no major pain, things seemed good. Went to the gym after work and everything seemed to stop. My feet hurt (they haven’t hurt in months), my body felt slow- every step felt like I walking in mud. I couldn’t get a rhythm going on the machine- I tried for 40 minutes to get a good workout in and I eventually threw the towel (into my gym bag of course haha) and went home.

Once home, I stopped to think. A little over 4 years ago, I couldn’t walk up the stairs to my bedroom as I had done immediately after coming in my front door tonight. I couldn’t stay awake to get my hair cut- the gym wouldn’t have even crossed my mind. I had to take time off of work because my Rheumatoid Arthritis was so out of control. I work full-time now and can’t recall the last time I took off due to my RA.

I have been pushing myself nonstop. I go to the gym the day after injecting methotrexate despite my body’s protests. I get so pale that my husband has to come check on me mid workout. I cry some days driving to the gym from work because my pain is so great.

When I was diagnosed with Rheumatoid Arthritis, I tried to find the reason. I need to understand things. I need to have answers. Five years ago, I was running myself to death- working crazy hours, including overnights and weekends, plus trying to care for two young children. I ignored the times my body tried to tell me something was wrong- I ignored the aches in my feet and the deep ache in my elbow until my body stopped. My elbow stopped bending, my feet stopped allowing me to walk up or down stairs. My body had had enough and forced me to listen.

Tonight my body gave me a reminder to stop. So tonight I’m going to listen. I’m going to celebrate what I’ve done this year in my journey to walk, dance, crawl my way to 2,016 miles in 2016. I’m a bit behind but I know I’ll catch up. I’ve moved over 400 miles since the beginning of this year despite knee and hip problems. And as I sit here, on the couch, resting, I’m damn proud of myself.

2,016 miles in 2016! (1)

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Rheumatoid Arthritis

Fatigue

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Today is Day Two of RABlog Week! In case you aren’t following along, here is today’s writing prompt:

Managing RA fatigue – We all know that fatigue is a big part of many of our lives. How do you manage that fatigue? Perhaps you like a warm cup of tea or a hot bath. We all have our coping strategies. Describe anything you do to help with fatigue.

TiredMeme

In all honesty, I don’t manage fatigue, it manages me. And I hate that. I can handle pain. I can grit my teeth, I can cry, I can pop a pill and I usually get some sort of resolution (might not be 100% or last forever but something happens).

I feel helpless when it comes to fatigue. It hits me like a wrecking ball. Knocks me off my game. In a second it can make me feel like I’m walking through a foot of mud..everything I do is slow and deliberate. Fatigue makes me feel like the most simplest of tasks will literally kill me from exhaustion. There are times that getting up to brush my teeth seems like I’m preparing to run a marathon (I’ve never run a marathon and have no intention of doing so).

I have tried ridiculous amounts of caffeine, exercise, positive thoughts, food..you name it. I often worry if the fatigue will continue at this rate or possibly get worse. I have never considered cutting back hours at work due to pain or stiffness but I have thought about it in regards to fatigue. At only 35 years old, it scares me to think about cutting back at work not just for financial reasons but for my well-being. I have been eagerly anticipating this RA Blog Week topic as I am excited to read what others have to say about fatigue and how they manage it. If you have any ideas, I’d love to hear them.

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Rheumatoid Arthritis Type 1 Diabetes

Get used to it

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It’s hard to pinpoint when I got used to being a diabetic. I’ve had this disease for 27 years now and I’ve accepted it as part of who I am. Does it bother me if my pump looks funny in my clothes? Sometimes. Do I enjoy high or low blood sugars? Nope, not one bit. But I’m used to it. I’m used to the fact that eating a box of raisins today may not change my blood sugar but tomorrow it will. I’m used to the unpredictability of Type 1 Diabetes and I’ve accepted it. 

What I am not used to is my Rheumatoid Arthritis, but I think I’m getting there. When I was diagnosed three years ago, I was a mess. Fast forward 6-9 months later, thanks to Humira and methotrexate, I was basically in remission (or how I imagine it to be). I very quickly got used to less pain, more energy, and feeling more like myself. 

Fast forward a few months from there..I got sick and taken off of my miracle meds. I’ve been fighting since. But this time, I know my sense of remission will be different. My doctor, and various imaging and tests, has confirmed that I have permanent damage to my elbow, knee, hands, and feet. This was confirmed prior to spending nine months on Orencia with things getting worse. Permanent. Permanent damage. Permanent stiffness. Permanent pain. 

Up until this week, I viewed a lot of things as bandaids. I would often say “once my biologic works, I won’t need these compression gloves/knee braces/elbow supports”. “Once my biologic works, I won’t have trouble sleeping or need pain meds anymore.”

The goal of my RA medications is to stop or at least slow down the progression of my disease..to reduce inflammation. They simply won’t change what’s already happened to my bones and joints. I’ve known this for awhile now but it never really sank in until yesterday. I caught myself telling my doctor that “as soon as my Enbrel started working, I’d be able to run, sleep well, and wouldn’t need any more pain medications”. As much as I would love for this to be true, I have to start being honest with myself and look for ways to improve my quality of life amongst the pain and fatigue. 

To start, I’m vowing to realize that exercising for a few minutes is better than nothing. Just because I can’t go for a long time like I used to, is no reason to stop trying. I am not going to put myself down and/or think about when the day will finally come that I feel great enough to exercise for hours. I’m going to do what I can, as often as I can, and leave it at that. I just have to get used to it

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