Do you ever feel people only focus on the things you can't do instead of the things you can do? This is what I am struggling with at the moment and one of the things that frustrates me the most.
They only see the things I do not take part in. The worst part of it is, they think I choose to not be involved simply because I can't be bothered. That I'm leaving the work up to everyone else. A huge degree of intense laziness.
If they only knew!
If they only knew how difficult it is for me to do the things I can do! To healthy folk, the things I can do are nothing. Things they do every day without thinking but for me, they are monumental!
If only they knew how far I have come from the early days of these illnesses. Back then, I was mostly bedridden. When not bedridden then most definitely house-bound. I could not take care of my family -- no cooking, no laundry....nothing. I couldn't even take care of myself. I was so brain-fogged I did not know my own phone number. I spent days and sometimes months, in bed because I did not have the energy to do anything else.
I've fought long and hard to get where I am today. Research was slow because I could only absorb so much. Retaining that info was even worse. Implementing it, even slower. Sometimes that particular thing did not work so it was back to the drawing board. More research. More retaining. More implementing. Sometimes I'd hit the jackpot and find something that worked which enabled me to move forward, even though it was only a baby step at best. The next time, I'd not be so fortunate and would again have to return to the drawing board. Intertwined in there were crashes, many crashes. Periods of total exhaustion and more bed rest. Yes, one step forward, three or ten backward.
If they only knew!
I worked hard and diligently to improve myself. There was no outside help. (A meal, or some other sort of practical help would have been so very welcome, but none were forthcoming). Some of that moving forward came in the form of actual improvement while other improvement came in learning ways to extend the limited energy I had. It's a a long, up-hill battle and I continue to fight every single day to maintain the recovery I have gained and the health that I have. A lot of my current level of daily abilities entails me knowing my limitations and staying well within them.
Working with, and keeping within these strict confines, enables me to do so much more than I once could. It has allowed me to improve a lot. Venturing outside of these confines, would land me back to where I once was, very quickly. I've had to learn this the hard way but know it beyond a shadow of a doubt. Even working within these confines and limitations, but I am now able to have some level of normal life or at least some appearance of normal life. This appearance of normal life is all that many see, unfortunately. They don't see all the tweaking and planning I've had to do in order to go out for the afternoon. No, they only see the fact I'm out. Tunnel vision at its best.
With all this planning and careful implementation, I'm now able to look after my family. It's on a limited basis, but it's better than it once was. I am able to contribute to our family's income through a small business I have. I've learned to work this in and around the confines of my limitations. I can have a basic level social life. These events alone though stretch me to my maximum outer limits. I can't do anything more and unfortunately, this is what people focus on. They only see the extras I can't do instead of the things I can do.
If they only knew how far I have come they may just realize how hard I work to keep the
Balance...despite the chaos!
They only see the things I do not take part in. The worst part of it is, they think I choose to not be involved simply because I can't be bothered. That I'm leaving the work up to everyone else. A huge degree of intense laziness.
If they only knew!
If they only knew how difficult it is for me to do the things I can do! To healthy folk, the things I can do are nothing. Things they do every day without thinking but for me, they are monumental!
If only they knew how far I have come from the early days of these illnesses. Back then, I was mostly bedridden. When not bedridden then most definitely house-bound. I could not take care of my family -- no cooking, no laundry....nothing. I couldn't even take care of myself. I was so brain-fogged I did not know my own phone number. I spent days and sometimes months, in bed because I did not have the energy to do anything else.
I've fought long and hard to get where I am today. Research was slow because I could only absorb so much. Retaining that info was even worse. Implementing it, even slower. Sometimes that particular thing did not work so it was back to the drawing board. More research. More retaining. More implementing. Sometimes I'd hit the jackpot and find something that worked which enabled me to move forward, even though it was only a baby step at best. The next time, I'd not be so fortunate and would again have to return to the drawing board. Intertwined in there were crashes, many crashes. Periods of total exhaustion and more bed rest. Yes, one step forward, three or ten backward.
If they only knew!
I worked hard and diligently to improve myself. There was no outside help. (A meal, or some other sort of practical help would have been so very welcome, but none were forthcoming). Some of that moving forward came in the form of actual improvement while other improvement came in learning ways to extend the limited energy I had. It's a a long, up-hill battle and I continue to fight every single day to maintain the recovery I have gained and the health that I have. A lot of my current level of daily abilities entails me knowing my limitations and staying well within them.
Working with, and keeping within these strict confines, enables me to do so much more than I once could. It has allowed me to improve a lot. Venturing outside of these confines, would land me back to where I once was, very quickly. I've had to learn this the hard way but know it beyond a shadow of a doubt. Even working within these confines and limitations, but I am now able to have some level of normal life or at least some appearance of normal life. This appearance of normal life is all that many see, unfortunately. They don't see all the tweaking and planning I've had to do in order to go out for the afternoon. No, they only see the fact I'm out. Tunnel vision at its best.
With all this planning and careful implementation, I'm now able to look after my family. It's on a limited basis, but it's better than it once was. I am able to contribute to our family's income through a small business I have. I've learned to work this in and around the confines of my limitations. I can have a basic level social life. These events alone though stretch me to my maximum outer limits. I can't do anything more and unfortunately, this is what people focus on. They only see the extras I can't do instead of the things I can do.
If they only knew how far I have come they may just realize how hard I work to keep the
Balance...despite the chaos!
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