How you can help...


It's Monday morning, I've been going and  doing more than I have in months, and I tell myself I need a day to recover - that I'm going to do only one little thing at a time today - but I can't seem to apply that thought to my actions. 

I've been awake for hours, but it takes that long - especially today - for my morning meds to kick in. I scoop out the cat box, collect and sort the dirty laundry, begin a load of towels and sheets, and open a few windows.  

Several one-little-things in a row and I should stop to rest, but I open the dishwasher, unload the clean dishes and carry the ten large china plates from Sunday's gathering with family to the buffet, rearrange the bottom shelf to make room for the plates, and I'm short of breath and stopping to rest is no longer an option. 


Restorative sleep eludes me, and I wake before dawn with pain and fatigue before I get out of bed. My morning routine rarely changes, and this morning is no exception. I head straight for my meds in the organizer on the kitchen counter.

My husband has already opened the lid to that morning's meds in the organizer, poured something for me to drink and opened a cereal bar for me to eat with the prednisone, because if my hands are too swollen and painful, I can't open even the easy-to-open organizer without great difficulty.

After taking my morning meds, I get as comfortable as possible in a lounge chair. I never used to sit with the footrest up - now I seldom sit with it down. A heating pad to wrap around burning joints is within reach - sometimes draped over the arm of the chair making it even easier to get to - plugged in and ready to turn on. My laptop is also nearby - on a stand next to the chair where it sometimes remains if my wrists are too painful and no one is around to lift it into my lap.

This morning, my hands, feet, back and shoulders burn. Tomorrow it could be my knees and elbows, too. It's a mystery what each morning will bring, but I'm always in pain - some days it's more tolerable than others. Today is not one of those days.

I sometimes push myself to do what I suspect will bring mornings like this with more pain and fatigue, but I choose to do them anyway - because RA may hinder me, but it doesn't define me. It's one of the reasons I seldom write about my life with RA. I'm a wife, mother, grandmother and friend. I'm a writer and photographer. I don't want to waste this life I've been given,

It's not how I want to be known. I tend to be stoic and minimize pain. I don't like the attention, pity, or sympathy my talking about pain generates {which is why the comments on this post will be turned off if I can figure out how to do it}, but I trust that God can use my life with RA to encourage others who live with this disability. 

I can validate their pain and fatigue, because I know it, too, and I can share the ways I've learned to cope so that RA doesn't define me. For those who love someone with RA or other similar autoimmune diseases, I can share how family and friends have made my life better through their love and care for me.


I began this post earlier in the week in the hope of having it ready for a Rheum Helps Blog Carnival at RA Warrior, but I obviously didn't finish it in time. In a comment to Kelly {RA Warrior} I mentioned that my mother had RA for sixty years and I'm an RN, but it wasn't until I had RA, too, that I realized how awful a disease this can be. Either my mother was as stoic as I can be {a good possibility} or her disease was not as severe as mine {another likely possibility - considering that RA had not affected most of her joints or her lungs} or she learned to not talk about it because most people without RA are as clueless as I was - thinking that RA is a joint disease like osteoarthritis, instead of the systemic autoimmune disease that it is.

So, if I'd had this post ready for the carnival, I would have suggested that the biggest help to me is a husband who understands my pain, fatigue and limited reserves and without me asking, does big and little things - like cleaning the kitchen and opening the lid to my meds - that make my life easier. 

If you have a family member or friend with RA, one of the best things you can do is be educated so you can know how to help, too. Click on the link below {or the one above to the carnival for gift ideas} and read the great resources Kelly has made available.