pilatesgal
Member
- Joined
- Jun 12, 2017
- Messages
- 22
- Reason
- Learn about ALS
- Country
- US
- State
- ny
- City
- vestal
Hi, I have not posted in some time because I felt like some were thinking I was a hypochondriac and I've actually thought I handled the past year of my life quite gracefully.
On 12/4/17 I was dx'd with ALS. Like all, I have been bouncing between all kinds of emotions. I am not back to ask questions, not at this time anyway. But, something that keeps resonating with me is the statement in the "read before posting column" that I kept clinging to through the dx process. My "wifi" signals are still to this date, not completely interrupted. I am not "failing" at anything yet. My als has been a slow, insidious, torture. Weakness and atrophy are primarily what I still experience. I wake everyday and lie in bed and wiggle my toes and my fingers and then slowly arise to see if any joint action is failing. By the grace of God that day has not yet arrived. Often my thoughts come back to this forum, and I think about the "wifi failure imagery" and how some are led to believe that we must be a hypochondriac if we fear als and we don't have failure. As I learn more about this dreadful disease and experience it in my own body it has become clear to me that as vast and varied as this disease progresses it also presents in the same manner. Though I experienced compassionate communication from most, there was this feeling that I was being judged as neurotically pursuing a dx. I read countless threads where others were being responded to in the same manner. Even as I type this I pray I am not sounding judgmental of anyone. Lord knows this can be much to bare for all. But, truth is a guiding force in my life and I felt compelled to share my truth. ALS can show up as insidious weakness without failure. At least it has for me. And I think it's important and compassionate to relay to others that in the mist of their trials and fears, not everyone is a hypochondriac. My prayers are with everyone reading this post. Jennifer
On 12/4/17 I was dx'd with ALS. Like all, I have been bouncing between all kinds of emotions. I am not back to ask questions, not at this time anyway. But, something that keeps resonating with me is the statement in the "read before posting column" that I kept clinging to through the dx process. My "wifi" signals are still to this date, not completely interrupted. I am not "failing" at anything yet. My als has been a slow, insidious, torture. Weakness and atrophy are primarily what I still experience. I wake everyday and lie in bed and wiggle my toes and my fingers and then slowly arise to see if any joint action is failing. By the grace of God that day has not yet arrived. Often my thoughts come back to this forum, and I think about the "wifi failure imagery" and how some are led to believe that we must be a hypochondriac if we fear als and we don't have failure. As I learn more about this dreadful disease and experience it in my own body it has become clear to me that as vast and varied as this disease progresses it also presents in the same manner. Though I experienced compassionate communication from most, there was this feeling that I was being judged as neurotically pursuing a dx. I read countless threads where others were being responded to in the same manner. Even as I type this I pray I am not sounding judgmental of anyone. Lord knows this can be much to bare for all. But, truth is a guiding force in my life and I felt compelled to share my truth. ALS can show up as insidious weakness without failure. At least it has for me. And I think it's important and compassionate to relay to others that in the mist of their trials and fears, not everyone is a hypochondriac. My prayers are with everyone reading this post. Jennifer