Friday, May 1, 2009

I Paid For This?

As most of you know hubby has Multiple Sclerosis. He was diagnosed in 1990ish at the age of 19 years old. When we were married hubby had relapsing-remitting ms. The best way to describe this is like stairs. RRMS is characterized by clearly defined attacks followed by complete or partial recovery. This is the most common form of MS. Recently hubby was diagnosed with secondary-progressive . This is when the disease becomes progressive after an initial relapsing-remitting phase. Generally people with relapsing-remitting MS develop secondary progressive MS. In this type of MS, the disease will progress with or without relapses. When attacks do occur, the recovery is usually not complete; so disability then accumulates over time. So, hubby has been on a downward slope to getting worse.
Hubby falls multiple times in day, cannot walk for more than three minutes, has more energy in the morning, and zero energy in the evening, needs supervision for showering, and cannot make meals.
I have to 'Steve' proof my house, I cannot take Steve for a walk, do anything that requires exertion in the morning - never in the evening!, make sure I am home when hubby needs to take a shower, and premake meals for the family.
The last Friday hubby had a doctor appointment. I forgot about it until almost the last moment. I needed the day off, so I lost one days pay (which sucked because I had to take the other day off to take my youngest boy to the doctor). With only one income in the family it is hard to take a day off, but hubby cannot do these things on his own.
the appointment appeared to do well. At the end of the appointment the doc ended with this comment "your MS has progressed so much that there is nothing more we can do to help you".
My life is so hard and I try so hard to be strong for hubby but this was too much to handle. I see the fear and hurt in his eyes. I NEED to be strong. How can I do this?

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