My story goes as follows: I was very sick. I couldn't bathe myself, feed myself and I did a combat crawl to the bathroom (until I got a wheelchair). I couldn't watch any TV, read, listen to music, or use a computer.
However, I am now able to read some, albeit fiction. I am obviously able to use a computer now. I bathe myself, feed myself and can get out of the house close to once a week. To me there is much to be celebrated in that. I do not think further improvement is hopeless at all. Reading other's sad stories all of the time can bring a person down.
So what I did to make sure I was not focused all of the time on my illness is I started a scrap book of "me."
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(warning: lengthy)
As many of you with this illness know, sometimes it is really hard to maintain a sense of self-worth when you are so limited in what you can "DO." So I thought I would first assemble old photos, mementos, etc. of things I have done in the past. This will help me to know that in good health I am capable. It is only the debilitating illness that prevents me from accomplishing things.
But I don't want it to stop there. Yes, this illness has taken so much away and prevents me from doing many things that I would like to be doing but life hasn't ended. As a result of this illness, I have learned what really matters in life. Each ounce of energy that I have is so precious so I don't want to spend it on insignificant things.
For these reasons, the things that I add to the scrapbook post-illness are of a different nature but in some ways, are more meaningful, given all of the obstacles that I, like so many of you, have had to overcome to achieve them. They are simple things. Perhaps a card I sent to someone has helped them through a rough patch. I painted a tee shirt for my husband with a fishing theme on it for Christmas. It took me several months to paint what would normally have taken me a day or two. The gift pleased my husband and he knew how much it cost me so it meant even more. These are conquests that help me see the value to my life.
The other kinds of things I plan on putting in my scrapbook are accomplishments of a different kind. I try whenever I can to write down: all of the times that I have heard the, "it's all in your head" or felt the searing look of doubt in someone's eyes, and the "well couldn't you at least cook hot dogs for diner, they're not that hard," moments. :Retro mad:
The times when I wanted to yell at someone who thought my illness was not real but
I DIDN'T, the doctors who said I didn't fit into a box so my illness must be due to stress, but
I DIDN'T scream, "YOU QUACK!" :innocent1: And when my clueless mother-in-law (yes, I love her but we don't only just love "smart" people,do we?
) suggested that I could try to make hot dogs because they are simple...I refrained from saying, "First of all, hot dogs are the last thing I would eat if I were able to cook, and second of all, IF I COULD COOK I WOULD, BECAUSE UNLIKE YOU, I LOVE TO COOK. So if I am not, THERE IS A GOOD REASON!" Those have been some of the toughest feats in my life (aside from dealing with the debilitating illness itself).
There are other things that still happen post-illness that are worthy of adding to the scrapbook. A special gift, kindness displayed from a friend, anyone's support or encouragement, a medical professional with a clue (yes, quite rare but they exist) who has provided some kind of relief. If we stop and think about it there are more things that bring value to our life than one would realize. We just have to look harder for them because they are most often found in the simple everyday things that most people take for granted.
This may not be for everyone but I know it has helped me. THERE IS ALWAYS HOPE! :victory:
