RArainbow

A resource blog for young women living with Arthritis


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Waking up and Juvenile Arthritis

[Image credit: Charlotte Bradley - Someecards.com]
[Image credit: Charlotte Bradley – Someecards.com]

Hi everyone ;). When I first saw the Ecard above, it made me laugh. Sadly, I could relate to it all too well. Can you relate to it too? If you have autoimmune arthritis, you’ll probably be familiar with the experience of waking up only to realize that your joints are filled with stabbing pains and you can barely move :(. When I was younger, I would experience severe morning stiffness in all my joints. There were terrible days when my joints were simply locked and I was trapped and unable to get off the bed. Can you guys relate to this? Nowadays my condition has calmed significantly with treatment, but morning stiffness and pain are still part of life for me. I often wake up feeling groggy and unrested and it takes some time for my body to get going. Over the years I have developed some techniques to help me out in the morning which I want to share today. If you are battling painful mornings, hang in there friends. Please feel free to share your own techniques and coping mechanisms with me as well, so we can all learn together.

1. Set your alarm early
If you wake up with severe pain in the morning, give yourself some time to relax. When I open my eyes in the morning, it’s difficult/painful to just jump off the bed as my body is often shrouded in pain. Personally, it takes me a half hour to an hour to physically get off the bed.  I know that this is common for many autoimmune arthritis patients :(. But don’t fret, we can get through it. Because it takes time for my joints to “thaw” and loosen up, I always set my alarm a little bit earlier than necessary. This way my body has enough time to relax and my joints get some time to loosen up. e.g. If you know you need to get off the bed by 7am, set your alarm for 6.30am so you can lay in your bed and allow your body to loosen up before attempting to move.

2. Splints, braces and supports
In my last post I mentioned the value of splinting and supporting joints to reduce the discomfort of stiffness in the morning. My joints (like many RA patients) have a tendency to stiffen during periods of inactivity. Sometimes just speaking on the phone for a half hour causes my wrists, fingers and elbows to “freeze” in that position. Have you ever tried to “unlock” or unstretch a “frozen” joint? Talk about OUCH! 😦 Splints and braces have proven extremely helpful in reducing my stiffness in the morning, as they keep my joints secured in a comfortable position.

3. Heat
Heat is often used by arthritis patients to relax stiff joints. This article from ArthritisToday.org gives some pointers on using heat to combat stiffness. I have found that heat helps loosen my joints tremendously. I sometimes use heat packs at night and find that they are actually still warm by morning, which is useful to my joints. However, if you need more heat, have someone from your family bring you a heated pack as soon as you wake up. If you live in a cold area, consider an electric blanket to help warm you up.

4. Hot bath/shower
If you have work or school, it’s a bit difficult to find time in the morning for a hot bath. I have found that a hot shower works just as well in helping to loosen my stiff joints.

5. Do light stretching/exercise/yoga when you wake up
I know that you guys are going to groan for this one (do exercise while stiff and in pain?! Yeah right!), but I’ve found that doing a little stretching while in bed or during the morning period helps my joints to loosen up. Take your time and work on the areas which are problematic. Consult with your physiotherapist for exercises which are appropriate to your specific situation before attempting. You may find these Hand-stretching Exercises from WebMD.com and Bed Exercises from ArthritisSelfManagement.com useful.

I have also found that doing regular exercise/swimming helps with my stiffness overall, so don’t forget to get as much movement as you can, whenever you can, however you can. Trust me, I know that is easier said than done ;). Check out Sneaky ways to exercise with Juvenile Arthritis for some ideas.

6. Brighten that painful mood with music, a television show or a good book
As I mentioned in my last post, living with chronic pain can make us feel quite sad and frustrated at times. While the average healthy person wakes up feeling refreshed, autoimmune arthritis patients often wake up feeling tired and in pain, no matter how much sleep we’ve gotten. As such, we have to find ways to keep ourselves motivated and HAPPY, even in the midst of a tough and painful situation. While relaxing in bed, put on a few of your favourite tunes to help brighten your mood and energize you for the day. If you prefer, stream a short video, play a game or catch up on a little reading before you get off the bed. Take this time to laugh and be entertained and allow that positive mood to carry you into the day, even with pesky arthritis pain. 😉

Okay guys. I know that mornings can be extremely tough. Many of us wake up feeling like we’ve been beaten or physically crushed during the night :(. If you’re newly diagnosed, I know that it’s a very scary and frustrating experience. Hang in there. Feel free to share your experiences with morning stiffness or ways which have helped you through the morning pain. Thanks!

All the best,
Ms. Rainbow

Further reading:

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The healing power of music

As many of you know, when you have a chronic disease it’s a long road of highs and lows. There are times when Juvenile Rheumatoid Arthritis kept me glued to the bed as I was in too much pain to move. When I went off on my own to college, my knees decided that it was a good time to swell. I had to painfully hobble to classes that first semester, blinking back tears while wondering if I could actually make it. During these times music was there to keep me company, to comfort me, to energize me, to encourage me, to cheer me along and to keep me going. If music didn’t exist, my tough times would have been a lot tougher.

I encourage you to keep music close to you, especially during your low points with this disease. It helps distract you from the pain. Also, listening to your favourite musicians can be very comforting during your weak moments. If you have to go somewhere on your own, take your music with you in case you flare and need some encouragement to get through it.

It doesn’t matter what’s popular or what’s not popular. Listen to whatever music makes you happy.

I’ll leave you all with a song that I played over and over right after I had my ankle surgery. During that long and sleepless night in the cold hospital room, this song comforted me and gave me something to focus on apart from the pain. And I’m so thankful for that. It’s called “Angels” and it was originally sung by Robbie Williams, but I’m sharing the Jessica Simpson version ‘cause I love her powerful voice.

Do you have a favourite song that gets your through the pain associated with Rheumatoid Arthritis? Feel free to share it in the comments. 🙂

All the best,

Ms. Rainbow


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Finding love in a hopeless place

Hello everyone! This is my first post. I’m currently 28 years old and I’ve had J(RA) for the past 21 years. You can read more about my story in the About me section.

I want to start my blog by sharing this song with you:

It was originally sung by Rihanna, but this version was re-sung by Kenyan singer Alisha Popat, with violin by Lindsey Stirling. It’s a really beautiful song and the video touches me. Sometimes when I can’t sleep at night because my body is too painful, I listen to this song and it makes me feel relaxed and hopeful.

I never paid too much attention to the lyrics, but as I was in lying in bed one night I started thinking about the words as they apply to living with a chronic illness like (Juvenile) Rheumatoid Arthritis. During a bad flare we feel terrible and we wonder when the pain will ever end. If we don’t have the luxury of resting, we wonder how we’re going to get through it and how we’re going to move our bodies when they have shut down on us. And it can feel like a hopeless (and lonely) situation. I sometimes read blogs by newly diagnosed Rheumatoid Arthritis patients where they describe how hopeless they feel as their bodies start to turn against them. We start to worry about our futures, about our deteriorating joints and how we’ll manage as we age. It’s indeed scary and honestly if I stop to think about it I do feel scared. But you know what? I’ve realized that with time, we form a routine and get used to managing the illness. We become experts at being able to roll with the unexpected and we soon realize we’ll be okay, no matter what happens.

“Finding love” doesn’t have to mean romantic love. I think of it as loving life and finding a way to love life in the midst of a difficult situation. I try not to worry about matters which can’t be helped and I just try to enjoy my life and whatever comes my way. When you have a chronic illness the future is unpredictable as each day can bring unexpected changes. So give yourself a break every now and again and try to find something that will add some happiness to your life.

I wish you lots of luck in finding your love ;),

Ms. Rainbow