My Dreams for the Future Do Not Include Disability

I have a huge goal and I know that many people will think that I am in denial about my illnesses but I’m not – I’m optimistic. Maybe a little too optimistic about this particular goal? I really have a dream and a big goal to be able to get off of disability. I have been working hard for the past 8 months trying to live a healthier lifestyle and it has paid off in many ways.

I have lost a lot of weight, I have more energy, and I have been able to increase my work hours. A year ago at this time, I was only able to work 4 – 5 hours a week. I had gotten to the point where I had to cut back from my original 12 hours to just the one day I was feeling so poorly. Now I have built myself back up that I have been able to start working 15 – 20 hours a week.  A lot of those hours I am working at a sedentary position at my current job but it is still hours worked that I couldn’t have even done a year ago. 

I know that I am sick, my body tells me everyday that I am sick.  But I have to have a goal to work toward to keep me going.  Just getting up everyday and going through life without nothing to look forward to does not work for me, even sick.  I always feel like I am stuck in this really hard situation because I’m not sick enough time to not work at all or have any kind of life at all, but if I do too much or work too much, I end up really sick.  It’s a no-win situation for me really.  My body has one agenda and my mind and heart have a whole other agenda. 

I feel that I have finally gotten to the place with my ME/CFS & Fibromyalgia where I have found a pretty good balance.  I think this is why, along with my healthier lifestyle, I have been slowly able to improve my stamina.  I also don’t push myself at home like I used to so I make sure I get plenty of rest instead of always cleaning or always doing some sort of home improvement project. 

My employer has been great working with me, as they will increase or decrease my hours as necessary.  I am thankful for their understanding and it has made the whole process of trying to improve my health a lot easier.  I know that disability is something that has been necessary in my life because of my limitations and I am forever grateful that I was able to receive it.  At the time I went on disability, I was a lot sicker and couldn’t work at all.  My health was at a place where a lot of people worried whether I was even going to live.  Thank God I am not in that place at this time and I don’t ever want to go back there again.  But I have to be aware that it could happen again and it is always in the back of my mind. 

I don’t like to play the “what if” game in life but knowing what I have been through so many times with CFS & Fibromyalgia, the “what ifs” of these illnesses is what makes them so frustrating. 

Having the limitations of disability feels like both a help and a hindrance to someone like me.  Knowing that I can only earn so much while on disability keeps me from overdoing it and probably in fact keeps me from having a complete body shutdown again, but it also makes me feel trapped and out of control with my own financial situation, dreams and goals in life.  It’s always hanging over my head like this big cloud and it follows me wherever I go.  I know if I weren’t on disability, whenever I do have good weeks I would probably work myself like crazy and then end up flaring really bad and would have to take a leave of absence to recover.  That is not how I want to live either. 

So I guess I still haven’t figured out the answer yet but I still want to make it my goal to be able to get off disability sometime in the future.  I know that at this time it is not a possibility but I have to hope for the future.  It’s what keeps me going and it is what keeps me wanting to continue to do better.  I want my son to see that hard work pays off in all forms, even when it comes to your health.  It is a lot of hard work to try and live a healthier lifestyle and I don’t always feel like doing the things that it requires.  But when I think about where I was just 8 months ago, I realize the rewards of all of my efforts and I want to continue investing  in myself for me and for my family. 

What will the future hold?  I can’t say but I have to hope for the best.  It’s what keeps me crawling out of bed each day despite the pain and fatigue.

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  1. I can’t help but wonder if you’re setting up for disappointment. Perhaps start with little steps for goals? Several times in the past 15 years I was doing so well I thought about near full time work again. But eventually the flares came along and squashed those ideas. I do what I can and cherish the times when I feel much better. I’ve also found that when I feel good, if I overdo (which is nothing more than normal for regular people) the flares come back even worse. So I enjoy the good times and avoid thinking I’m “normal” again. The flares always come back and I’m always prepared to hunker down and wait them out. Many times in the past several years I’ve been thankful that I didn’t try to go back to full time work.

  2. I understand the need to have a goal, a reason to get out of bed. I think you understand that the possibility of a relapse or crash is very realy and that you are taking a slow.

    I hope that you are able to achieve your goal.

    Please be cautiously optomistic, though. This illness has a mind of its own. I think you not pushing at home and doing a seditary job is a good idea.

    Keeping my fingers crossed for you.

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