Hope

Hope:  (vb)  1. to desire with expectation of fulfillment   2. too long for with expectation of obtainment   3. To expect with desire: trust

            (n)   1. Trust, Reliance   2. (a) A desire accompanied by expectation of or belief in fulfillment (b)someone or something on which hopes are centered  (c) something to hope for

Hope plays a big part in the life of a rsd/crps patient:  we hope that the doctors who treat us know about rsd/crps, we hope that a treatment will lower the pain, we hope that there will be a new treatment that will work, we hope that there is someone out there who knows what we are feeling and with whom we can talk to, we hope for warm sunny days, we hope to return to work… we hope for a cure.

There is nothing wrong with hope.  It is what keeps most of us going from day to day.  It is the reason we donate our time and money to certain causes.   Hope gives us the courage to go through painful procedures in order to control or eliminate the pain.  But, there can be a downside to hope too.  Hope can lead us down the garden path to faith healers, to herb and vitamin mixtures and quack treatments that no doctor in their right mind would encourage you to try.  False hope can lead us to ignore medical advice and wander into the realm of the ridiculous.  It can also cause us to volunteer for clinical trials or procedures which may not always be what is best for us at the present time e.g., the ketamine coma is one that specifically springs to mind.  It can keep us from facing cold, hard facts and prevent us from tying up personal ends: executing a durable power of attorney, creating a will, completing advanced directives etc…  In short, hope can cause us to not accept our situations until we are enveloped in a fog of denial.  

Hope can make us think that we can do more than we can.  A great example is what I did last week.  I had something scheduled every day; doctor’s visits, therapy appointments, a trip to Montgomery to participate in a rally to support a bill that is in the Alabama House, a dinner out with family and shopping.  I pushed myself so hard that I crashed on Friday afternoon and spent the next three days in bed.  I set myself up for failure because I hoped that I could act like a normal person and did not concede that I needed to rest because of the crps/rsd.  Nothing can make you feel worse than having to cancel out on an engagement that you have been looking forward to because you pushed yourself too hard.

 Hope is a good thing but it is important that we be realistic about where and with whom we place our hopes.  False hopes are a trap which once snapped is hard to escape from.  We have to learn to set manageable goals and ensure that we are not overdoing it.  Here are a couple of hints that I use to keep myself grounded:

• Discuss and create a treatment plan with your doctor and review it with him/her periodically.  

• Be realistic about what stage research is in and how it may be applicable to you.   

• Do not overextend yourself.

• Set small personal goals that are enjoyable and that you can achieve.   

• Review your life/career goals and rework to extend the timeline.

• Do not give up on your big dreams; acknowledge that they are dreams and work to make them manageable.

Hopes and dreams are an important part of living and something we all should have.   Life would be boring if we didn’t have them.   Those of us with rsd/crps just have to work a little harder and smarter to achieve them.