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 fast....in reading about a survey in an article published in THE RHEUMATOLOGIST and posted on RAGuy's website
http://www.rheumatoidarthritisguy.com/2011/07/the-rheumatologist-for-arthritis-patients-good-support-can-be-hard-to-find/ 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….
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?