Wednesday, June 2, 2010

False Hope

A comment from my previous post has me doing some self-reflecting. I think it's very possible that I've been hoping against everything else that something else is going on other than CFIDS. The Lupus thought process fed that sense of false hope and I really began to think that something else could be going on.

It makes me sad that I feel this way, I apologize to all those that are trying to get this more recognized and accepted for hoping something else was going on. Could it be the disbelief, the lack of support, the lack of good medical options that caused me to want something else? Probably a combination of all.

So now I must come back to acceptance. I have CFIDS (CFS/ME) and it's time to learn how to manage it - AGAIN. There is no time for false hope, there is only time to find away to make my life as full as possible and to help my body stay as healthy as possible.

When my husband says I can't see the positive - I disagree. I think it's just my form of acceptance. I do believe that every day doesn't have to feel as badly as today, I do believe that it's possible for me to improve. However, I don't believe I will ever have a drink again, I don't believe I will ever carelessly not listen to my body signals, I do believe I will always have to watch my energy levels. Is that really negative?

I see my doc again next week. We are going to look at supplements and alternative therapies - since I obviously am so med sensitive. This is a route I am more comfortable with, and I believe this route will teach me how to LISTEN to my body more.


  1. No, I don'tthink you are being negative .... I went through the same thing. I was trying to be realistic and make plans based on what I had learnt about CFS. For me is was things like officially resigning from my job and applying for disability support pension. Everyone around me saw this as me being negative initially because they had not done the reseach and they did not understand what CFS is all about ... they all really thought it would pass and I'd be back to normal in a month or two! Once a month or two or three has passed they all finally started seeing things my way and realised that I was actually being really positive and was trying to accept my new limitations and adapt as quickly as possible. They were just in denial and did not understand the situation ... so try not to get mad with people (which is what I did), just give them time to accept what is happening to you! People who love you don't want to believe that you have something life changing ...

  2. Thanks for sharing - and for giving me the perspective of those around you - it truly is helpful.