It’s been nearly 2 years since I was last on this website. Since then things have gone down hill concerning my wife Joanne’s MS, both for herself and me. I will give you all a synopsis of events.
My wife Joanne was diagnosed with RRMS in November 2004, shortly after diagnosis she suffered a total body shutdown and things went downhill fairly swiftly. She was eventually put on the beta interferon drug “Rebif” This worked for her initially and things began to settle down. 18 months ago Joanne was told her condition had progressed to Secondary Progressive MS, they took her off the “Rebif” because they said they couldn’t definitively say that it was still helping her as her symptoms had now progressed. Joanne has suffered from Optic Neurosis in both eyes, has had a spastic tongue that just flops out on it’s own accord, had difficulty swallowing so now eats mainly soft foods. She has virtually no short term memory functions, has spastic shuffle and has just recently developed spastic arm and leg movements that are now about to confine her to an Electric Wheelchair. She has extreme swelling of her fingers and more inportantly her legs, she suffers from extreme fatigue and we have also just found out that she may be suffering from Sleep Apnia.
I gave up working to become Joanne’s full time Carer in August 2005.
I am now 45 years old and I am defined as simply Joanne’s Carer, I have no friends anymore, noone to turn too, and too top this found out 6 months ago I have Type 2 Diabetes.
I see no light at the end of my tunnel, thoughts tend to drift to things they should not… I used to have an outlet of playing golf twice weekly but now she has asked I stop even that. She see’s I am loosing that sparkle I once had.
We married in June 2008 and on that Special Day we were 2 people looking forward to sharing our lives together, now we share nothing, no tender moments, nothing. We occupy the same house but that’s as far as our joint lives go. Tonight I asked Joanne what our future holds in her eyes, to which she replied “You Caring for Me”
It would seem I am destined to be just a “Carer”, to care for someone I Truely Love Very Deeply, but that is just that, I am destined to have no life of my own.
I find myself resenting her for this but deep down I know she did not wish for this Illness.
Sometimes the life of a Carer is a very lonely road to travel.