The "can do" is not worth the "OMG I did"
 

I remember a stubborn Russell insisting he had to paint the outside of his house a few years back... Trying to operate a snow blower is in the same category of not accepting your limitations.

Challenging yourself should be attempting small activities several times a day AND learning to adapt to your limitations.

It is very difficult for those of us that need to rely on others for help, but being a caregiver is often a thankless and difficult role as well. What is obvious to you, is maybe not obvious to them. The best way to handle these situations is to explain to your current and future caregivers what you consider top priority for them to help you with--as well as activities you might sometimes be able to manage, but when you're in a flare, that you'll need help with.

I had a friend that was very intuitive about when I needed help and she often noticed when my pain was starting to escalate before I did. I highly suspect this was because her mom was very ill and in severe pain most of her childhood. --That is not the norm and I'm glad that while my son is considerate, he never developed that particular skill set, which I think is an unfair burden.

Most people will either try to do everything for you or will wait to be asked for help. Frankly, many of us get annoyed when our loved ones try and take over all our responsibilities without asking...

Your daughter's bf is grown, so trying to be subtle or guilt him into doing something is just not a good idea IMO. It is EASIER to hire a stranger to help out because it's expected that you will tell them what you need. If that's not an option, than I would suggest next time you say something like, "I really appreciate that you're working on the floors. I know I said that was my first priority, but would you mind going and clearing the driveway now please?"

So while I can understand your frustrations, I think you have a responsibility to clearly express your needs.

I was sitting here this morning thinking about this very topic. I find that people cannot see what is wrong, so do not think we need help. I'm having the hardest time explaining how I feel and so people in my household treat me as if I'm faking it. Even my own mother doesn't get it!:( I do have a wonderful best friend who is an RN, and can understand and sympethize, but I find dwelling on it makes my anxiety worse. How does everyone deal with the doubters?

:hug:

IMHO to deal with doubters is don't. Don't give into the frustration of not being understood. Just find solice in being litened to.
We all love being understood when it comes to relating our struggles and shortcomings to others but I feel we do ourselves an unjustice expecting to be understood.
Best thing to do is just forget about it.
I'm not advocating to ignore problems. But using a simple way of not letting frustration get the best of us.
Remember the road runs both ways so lend an ear too... :grouphug:

I think your situation is pretty unique. Your family has expectations of your ability to adapt based upon your earlier disability.

So how to deal with the doubters? Sometimes showing them a copy of the McGill pain scale helps. http://www.rsdhope.org/mcgill-pain-i...in-ranked.html

There would be no expectation for us to function the first couple of days after having major surgery performed due to the pain, and yet many of us experience higher levels of pain than that on a daily basis.

From what I've read on NT and elsewhere, it is not uncommon to end up with a fairly small support base of close family and friends when dealing with RSD/CRPS long term. The longer a person has the disorder, the smaller their circle often seems to grow. Since a good chunk of us leave the workforce and often become more homebound, this all adds in.

Those you live with will have the most exposure to the realities of your illness which can be pretty hard to ignore if it's in your face, but some have symptoms that are more obvious.

Those that have the best shot at remission should be focused on their healthcare primarily and they should try not to be distracted by all the other complications that accompany this type of illness--but in order to do that, it might require the help of a mental health professional even early on.

For anyone that is faced with the long term realities of a severe case of RSD/CRPS--likelihood of inability to remain in the workforce, financial stress that may include needing to move to less expensive accommodations, smaller support system, physical and/or emotional isolation, depression, insomnia, grief over the loss of the ability to do the things you once loved, learning to adapt physically and emotionally, learning to accept one's limitations, etc.--finding a mental health care provider to work through all these issues is often necessary.

And as difficult as it is for us, it is also difficult for our loved ones. Their lives are impacted as well. Depending on their ability to cope, and perhaps their level of true attachment to us in the first place, often determines what happens with our relationships. Your significant other or parent or close friend might be willing to go through your journey with you regardless, but IMO we are responsible to do the hard work to get to a place of peace, and in turn make it easier on them as well.

I just want to reiterate how important it is to at least be active enough that you don't cause atrophy. Even if you spend the vast majority of your time in bed or on a couch, you must move as much as possible. If this can only be in warm water or with the aid of a walker or cane, so be it.

Those scary pics of the worst cases are a result of complications that usually start with atrophy.

And for those that may still have a chance of remission, your window for potential recovery is small. If you waste it, you might regret what could have been for a long time.

It DOES send mixed messages when you are able to perform activities that are more strenuous than need help with basic daily activities. Anyone dealing with WC, LTD, or SS will tell you that for a claim of disability to be treated seriously, there will be an expectation that you are incapable of performing strenuous activity.

Why not hire a local kid or service to do the job instead of investing in new machinery? Or ask your daughter if she's going to continue living with you?

My son is in Michigan on an internship and his landlord pays to keep his walkway clear. Considering his rent--I can't imagine the service is even remotely expensive.

I found a letter to your families, which a gentleman wrote and it perfectly explains how we feel and what happens to us when we have a flare up. And hopefully I'm able to post the link.

http://www.rsdhope.org/letter-to-fam...-patients.html

Maybe this will open some eyes.!! :eek:

I just have to say this group is AMAZING, STRONG, and INSPIRING!!!

:grouphug:

I did a search on the writer of that letter and see someone posted it in 2013, so hope it's ok to have put up the link to it. :)