Friday, June 26, 2015

Afraid to Hope (Trial and Error in Treatment Plans)

Have you ever felt afraid to hope for something?  Something you wanted so desperately that you were afraid to actually start anticipating it in case it didn't?  Remember when you were first diagnosed and everything seemed fresh and new?  All kinds of new ideas poured in from all sides and you were ready to try just about anything now that you had a word for your symptoms and you weren't alone or crazy.  It was a great day!  But after three different diets, endless different types of medications, hot packs, ice packs, different sleep routines, sleep aids, changing around of schedules, trying different specialists, and even several ventures into the homeopathic realm, you just weren't as chipper every time someone came up with a "new miracle cure" for your chronic condition... To be honest, you weren't even up to discussing new ideas for it some days.  If you've ever hit this rut a few months or even a year or so after your diagnosis (or even multiple times since your original diagnosis as different treatments work for a while and then get less effective) then you will understand why tonight I am edgy.

Tomorrow a new medical device arrives in the mail that I am eager to try on the one hand, and terrified to put any hope in on the other.  I have been in some really difficult pain the past few weeks, and this new shot in the dark could just be that, another futile attempt at finding a lasting solution.  But it could also provide so much pain relief without nearly so many over-the-counter pain killers.   So, I am hopeful, but I am also afraid.  I am afraid to have this hope.  Afraid I will be let down and in being let down, that I will feel guilty for even hoping to begin with.  That can be a hazard when dealing with a chronic condition such as fibro or RA or lupus.  It's easy to feel as though your body has betrayed you when something doesn't work.  It's easy to get discouraged when a treatment doesn't help you as much as it helped the 10 other people who suggested it.  It's hard to walk that fine line between perpetual skepticism and gullibility without living on a roller coaster of emotional ups and downs.  Working through all of this with my husband has given me a few thoughts to share on trying to work through these types of emotions and decisions without becoming a victim of your body.

1. Don't attempt any new trial-and-error treatments unless you are emotionally prepared to deal with whatever the outcome will be (effective or complete failure).  This might sound odd, but it can actually be better to just stay with what you can predict than to risk making things worse if you are not ready to deal with that possibility.  Take an account of yourself before proceeding with anything new.

2. Always consult with your spouse or anybody you live with (or any caretakers) before changing your treatment plan.  It can be easy with a chronic condition to fall into tunnel vision and think that your condition only affects you, but it's important to realize that your health actually affects a great deal of other people, most directly your immediate family and those you live with as well as those who may not live with you but take care of you on a daily basis.  Before making any drastic changes or decisions about your treatment regimen, it is a good idea to check with those who live with you.  Not only should they get input on the decision, but they may be able to give you feedback on aspects of your condition that you aren't aware of.

3. Don't try more than one or two new things at the same time.  There are a lot of options out there when it comes to trying new treatments.  It is usually best to only change one or two things at a time in order to be able to tell if any improvement or digression is from what you changed.  If you completely change everything overnight, it can be very hard to tell what's helping and what's not made a difference at all.  Change things slowly.

4. Don't be afraid to hope for improvement.  This one strikes a chord with me personally the most.  I have found that being several years into my diagnosis now, I am very often hesitant to try anything new that I read about online or hear about through other people.  One reason is that fear I mentioned earlier, but I also find that sometimes I just feel bombarded with solutions and suggestions from people who don't have my condition who want to be helpful.  While I appreciate their sentiments, it sometimes has the effect of making me feel that they see my condition as being my own fault.

The nature of fibro is to get better for a short time and then unexpectedly get flareups from time to time.  Over time the condition typically progresses to more and more severe symptoms.  With this knowledge, I often struggle with losing hope that things will ever be better.  It's easy to feel they will just get worse, but I have to fight the idea that it's ok to just give in to those feelings.  Occasionally, it's a good idea to take a chance and try something new.  So, this is me, trying something new.  Tomorrow, it should arrive in the mail.  I've ordered a Quell unit from, and I'm hopeful that it will be effective in improving my quality of life without more drugs.  Whatever new treatment options you are given the chance to try, don't be afraid to hope for some improvement as technology and medical sciences advance.  But, beyond that, remember that our ultimate hope is not in medicine or even in pain relief.  Our ultimate hope lies in Jesus, and no amount of pain can take that away.  Because of Him, I can walk through that fear and hope anyway.  If it works, that would be great.  If it doesn't, I'll still be ok. 

grace and peace to everyone out there in pain <3

No comments:

Post a Comment