I have a bit of free time to collect my thoughts as I'm alone - which has been rare lately with lots of family visiting this entire summer. This may be long.
I recently had a serious conversation with my husband about the progression of my MS.
To back up a bit, I've been living with this for 30 years and in the beginning I was misdiagnosed. there were only 3 DMT's at the time of dx which were not very effective for me, and in hindsight, I'm thinking progression happened more quickly. I've been SP for 11-12 years. Today, I am still getting around for short distances with my rollator walker and w/c and 4 wheel scooter for longer.
SO, this all started when I've overheard my dh telling friends and family in social gathering or on the phone that I'm doing great! He speaks with enthusiasm telling all that I'm still gardening and babysitting and cooking every night, cleaning, etc. but she sometimes get tired.
I thought this was the "straw" and had to set him straight:
I am not doing GREAT (I'm doing just ok and please don't say I'm doing GREAT.)
Sure, I garden, but this is going to be my last year - it's become too much for me!
Sure, I cook, clean and babysit, but all of it is such a struggle!
I'm not tired! I'm mentally and physically fatigued!
Blah, blah, blah... I have explained this all to him umteenth times. He really is a good man, but clueless. I suppose it's because nobody really understand what we go though unless we have MS.
But, this time I got very emotional and started to cry. I think the lightbulb finally went on as he held me and also had tears. He has been more supportive, helpful and tenderhearted since. I had some talks with my adult kids as well. In the past, I haven't wanted to scare my kids and just soldier on, but I've decided it's time to get very real with all and speak my truth.
I just thought I'd share this experience with you all. Have you had to get seriouly real with your loved ones? How did it go?
Thanks for listening.
I recently had a serious conversation with my husband about the progression of my MS.
To back up a bit, I've been living with this for 30 years and in the beginning I was misdiagnosed. there were only 3 DMT's at the time of dx which were not very effective for me, and in hindsight, I'm thinking progression happened more quickly. I've been SP for 11-12 years. Today, I am still getting around for short distances with my rollator walker and w/c and 4 wheel scooter for longer.
SO, this all started when I've overheard my dh telling friends and family in social gathering or on the phone that I'm doing great! He speaks with enthusiasm telling all that I'm still gardening and babysitting and cooking every night, cleaning, etc. but she sometimes get tired.
I thought this was the "straw" and had to set him straight:
I am not doing GREAT (I'm doing just ok and please don't say I'm doing GREAT.)
Sure, I garden, but this is going to be my last year - it's become too much for me!
Sure, I cook, clean and babysit, but all of it is such a struggle!
I'm not tired! I'm mentally and physically fatigued!
Blah, blah, blah... I have explained this all to him umteenth times. He really is a good man, but clueless. I suppose it's because nobody really understand what we go though unless we have MS.
But, this time I got very emotional and started to cry. I think the lightbulb finally went on as he held me and also had tears. He has been more supportive, helpful and tenderhearted since. I had some talks with my adult kids as well. In the past, I haven't wanted to scare my kids and just soldier on, but I've decided it's time to get very real with all and speak my truth.
I just thought I'd share this experience with you all. Have you had to get seriouly real with your loved ones? How did it go?
Thanks for listening.
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