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Wednesday, July 6, 2011

Bridge over troubled waters....

      Just how much support do each of us need to cope with RA?  Seems like a simple enough question, no?  Well, not so reading about a survey in an article published in THE RHEUMATOLOGIST and posted on RAGuy's website I realized several things.

The survey found that:
  • 67.4% of respondents said other members of the household are sometimes or never aware of their arthritis.
  • 64.4% of respondents said others in the household never or only occasionally take an interest in their daily issues with arthritis. This can take the form of asking questions to learn more or be more aware, reading about what it’s like to have arthritis, or generally making a person’s life easier.
  • The majority of respondents (58.4%) said they feel the most pain from arthritis when cleaning and doing household chores.   

       First off, we are all very different in how much support we want and need.  Add to that the fact that this is not a constant but rather a continually changing dynamic, not unlike RA itself, and it really becomes a challenge to figure out!
    I know, for instance, that when I am in pain, I would love a bit more assistance and even some inquiries about how I am doing, what is my day like pain wise, how can they help?  Being able to vent to someone is a priceless tool for when I am not doing so great or just need a shoulder to lean on, so to speak.    This offers such relief and is very useful, not to mention practical, in going through the day to day tasks that need to be accomplished.
     I think we really need to be sensitive to the dilemma that our support team members face in trying to be there for us.  They are not always sure what we need and I know I am very guilty of not being clear on this.   I would not want to be the one trying to decide what to offer me in the way of support and assistance.  Not an easy place to be since it changes like the weather!
     I totally related to the statistic about household chores.  I have found doing everyday jobs to be the most difficult set of tasks to manage and still be functioning and productive, which I really want to maintain!  The fact is that some days are better than others and I can do more. On those days cleaning closets, changing beds, etc. is doable - other times, no way!
     As I write this, I am having major shoulder issues and while it was just my left shoulder yesterday now the other one has joined the party thanks, in part, to overdoing some chores yesterday..or is that the reason?
    That is one of the really annoying (a much stronger word remains unwritten here but, trust me, is flying around in my head) aspects of RA.  I really despise the whole unpredictability piece of RA - how over and over it rears its ugly head trying to sabotage the management of the disease that we work so hard to achieve.  
I mean how much do our day to day actions influence the pain and inflammation?  10%, 20%, 80%?  No one really knows the answer to that.  I sure don't.  This is not an easy question.  To factor how much support we need and then toss that expectation to our support team seems quite the conundrum.     Which brings me to the epiphany that this article generated in me.  As difficult as it may be, it makes complete sense to take the time to sit down with your support team (family, friends, etc.) and share with them what you DO need, if you can articulate it in some way.  It is really crucial that you share the fact the what you tell them now may, no will, change and checking in will be a part of the process. Because to NOT do this breeds anxiety, stress, more pain, disappointment, frustration, and a host of other bad emotions that only serves to make the situation worse and to curtail positive management of RA.
     I know that way back (remember I have had RA for 15 years) I did have the "general" chat where I, sort of, shared what I felt at that time I could and could not continue to do.  But, times and the disease progression have changed all that and so have my abilities and so I really need to do that "check in" again…I will if you will….


deb aka murphthesurf said...

Very insightful post! And I will if you will too :-) I tend to be a recluse when it comes to pain. Turn off the lights, close the door and duck under the covers...leave me the you know what alone...please. I deal best this way. I don't want the hoover craft nearby asking me anything during bad flares because I might just bite their heads off. So alone is best for me. Now about that household stuff...hire out. That is what I really think all ra patients should have covered by insurance...a housekeeper. And why not. I mean these meds cost upwards of $4K per month (injectables alone). What would another $150 for a cleaning person to come in every so often add to that..minimal. And look at the savings...probably put off joint replacement for years and years because we wouldn't be stressing our joints so much. Makes perfect sense to me. Oh well...I can dream. Anyway...great post!!

Wren said...

Hi Nan!
Thanks for the kind comment on my latest post. I've got to tell you that I completely agree with your take on how telling others how we feel and what sort of support we need is vital. After 24 years of RA, I've learned this well. That said, it's not easy--precisely because this disease is so blamed changeable. The kind of help I need today--like vaccuuming or folding laundry--is help I likely won't need tomorrow. In fact, tomorrow, I may need someone else to do the grocery shopping, since my RA feet are killing me. It's no wonder that our friends and families get frustrated with us and shy away from asking how they can help. Add to that the fact that we rarely "look" sick or disabled, and the conundrum becomes clear.

In the end, as you said, the only thing to do is communicate. It can't be said enough.

Hope this finds you feeling decent and smiling. It's always great to meet new friends!

Elizabeth said...

Hi Nan -
Really good post. I will if you will, too! So that will make 3 of us - maybe!
My husband is my Rock of Gibraltar when it comes to being my "helper-guy" and chef. He's a bit of an empath, and can tell how I feel without me telling him. I take coffee in to him in the mornings (almost no matter how I feel) and he looks at me and then tells me what kind of day I'm having and which joints are bad - sometimes even I don't know some of the stuff he tells me until he tells me - because I'm concerned about something else entirely! But there are times I have to tell him what, exactly, I need help with. He isn't interested, necessarily, in the whys-and-wherefores, but he does want me to just tell him what needs doing at a particular time.
The other day he looked over at me and said, "Well, shall I go to the Body Store and get us new bodies today?" WAHAHAHAHA! That's our signal that we'll be eating soup and crackers that day, and only leaving our recliners to go to the bathroom. (he has osteo plus a badly injured back)
Today I was able to drive to the drugstore, leave another sack of gold on the counter and bring home a precious little bag of drugs and syringes for us. (I do that for my service dog, too - she's getting allergy shots every 5 days!)
Yes, life with RA is interesting, to say the least. The "groan" kids and the grandkidlets are as helpful as their busy lives permit. The time will come, however, when one or both of us will need to go live with one of them - with respite weekends at one of the other's. We are NOT looking forward to that, but we will manage. God has been very good to us, and continues to support us in our needs.

RA Guy said...

Thanks for this great post. The reading that I've done on this topic is right in line with the words and thoughts that you write. Yes, we do need to be able to constantly communicate and be clear about the help we need, especially with a condition with RA that changes so much from moment to moment. At the same time, there are times when I feel like other should know what I need...but then I step back and tell myself that it's unfair for me to assume as much, and if/when I need help I need to let it be known.

On the topic of household chores, I absolutely don't like doing them (who does?), but since me RA has worsened, there's something nice about being able to pitch in every now and them when I'm feeling a little better. Sometimes, walking around the house at the end of the afternoon and closing the curtain feels like the biggest accomplishment ever, and it makes me happy when I am able to do so. Who would have thought, RA would even teach me how to appreciate doing housework!