Monday the 13th is the kick off of Rheumatoid Arthritis awareness week. It’s an annual campaign created by the NRAS to help raise awareness of the condition and eliminate misconceptions by educating and informing the community about what RA truly is.
This is why we are focusing our content for the next 2 weeks on rheumatoid arthritis.
In honor of RA week, we wanted to share Eileen Davidson’s story. On ‘a day in the life‘ of living with rheumatoid arthritis. We’ll dive into what it feels like, as well as how it affects her mornings, afternoons and evenings.
What It Feels Like To Have RA:
The best description I’ve come up with is that living with RA is like running a marathon while you have the flu and are also experiencing an existential crisis.
The main symptoms that most people feel with RA include:
- Brain fog
- Joint pain (with or without swelling)
- loss of appetite
- Fever
- Weak immune system. With RA, you can be put on a various medications and this can impair your immune system and lead to infections.
Eileen shares how she treats these symptoms and in her own words ”treating RA requires pretty complicated medications and the side effects that go with them.” With the main goal of these medications being to quiet down your immune system so it doesn’t attack the joints.
The medication she takes can help with the symptoms but they themselves can cause issues for Eileen that impact on her daily life. Here’s her story…
Rise & Shine with RA
Unfortunately, living with rheumatoid arthritis means that you will most likely wake up stiff and achy in the morning. Having too deep a sleep without movement can increase your pain and stiffness. ”Even though our fatigue makes us beg for more sleep, no matter how much sleep we get, we do not wake up feeling refreshed.”
Eileen talks about having a difficult time sleeping past 5-6 am without being woken up by pain or stiffness. Each day she feels like a ball of nerves, anxious about whether or not she can physically handle the tasks she needs to do. ”Depression nags away at me with distant mournful memories of what I once could handle.”
She writes about how she is constantly aware and anxious about how those around her will react and respond to her limitations and the help she needs because she is living with an invisible illness.
I usually spend the first few hours of the day sipping coffee, reading, writing, and trying to shake off the flu-like feeling RA gives me. It never really goes away, but it does “loosen” a little as the day goes on. I’ve oddly gotten used to it.
No Afternoon Delights with RA
It can be hard to cement down a routine when it comes to rheumatoid arthritis. Everyone is different and each person needs to find the right mix of exercise, rest and a healthy diet to help reduce the levels of pain and inflammation.
For Eileen, not having the routine down causes great levels of anxiety especially when she has a lot to get done on a particular day. ”If I am not active enough during the day, I may either pay for it — or benefit from it. How much exercise do I need? How much rest do I need? Too much of each can have a major negative impact on my day or a few days later.”
Balance is the key here when it comes to living with rheumatoid arthritis but don’t lose heart, it can take some time to find you right balance of rest and exercise.
Breaking up exercise with moments of rest in between has helped me better handle working out and my overall daily routine.
The Evening Dash with RA
For Eileen, she is very tired come nightfall especially with the compromised immune system ”it’s almost as if my body starts to shut down after realizing that we made it through another day: ”I’m done now, thanks!”
The more intense a flare up is the earlier she needs to go to bed. If Eileen has an infection, an action-packed day or is feeling stressed, it only adds to how tired she feels and how much earlier she needs to go to sleep. ”I basically have the same bedtime as my young child.”
The Take Away
Sadly, rheumatoid arthritis is an unpredictable disease and it takes a lot of planning and balancing to stay on top of things and get where you would like to be. We need to learn to listen to our bodies, and cut ourselves a break. ”I’m a big fan of writing lists to manage my day-to-day life, while accepting that sometimes no matter how prepared I feel each day, sometime rest wins. I cannot beat myself up over what I can’t accomplish.”
This is my new normal. As much as I can mourn my old life I have to keep moving forward and accept what it means to manage daily life with autoimmune arthritis. I want to live, not just survive.
For more information about rheumatoid arthritis, please click on the links below:
- Why an early diagnosis of rheumatoid arthritis is important
- 5 home remedies to help ease arthritis pain
- Activities that can help ease arthritis pain
- 5 foods to avoid to help keep arthritis inflammation at bay
- How stress affects arthritis
- Easing arthritis pain with a good nights sleep
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