Hello,
My name is Katrina and I am looking for someone or support group for spouses and family that are living with someone whom lives with pain. My husband was diagnosed with Chiara Malformation back in 2000.
My husband and I have been together for 19 years, and I have known and understood that my husband has headaches, he has gone for 2 decompression surgeries ( at least 16 years ago), I know that he has this disease, but reality has set in, within the last couple of months as he has "admitted to having the disease". I hope someone may understand, for 19 years we knew, but reality has hit us hard, well myself hard. Lots of changes coming in the next year....
How am I suppose to help my husband from this day forward, I know that he needs to be in a calm surrounding, have no commitments, be able to do what he needs when he needs, but how can we be married then? I will never leave my husband, he is my best friend, my soulmate, my confident, my rock. He has also been told that he will have to have his neck fused as well, as he was not tested for EDS before the first surgery and we believe what is happening is that the scar tissue is taking over his spinal column and making it smaller, it is know at 8mm round, also disc degenerative disorder, arthritis and bulging disc's .
I guess, I am hoping that someone may be able to suggest a good counsellor in Edmonton, I am thinking a regular counsellor would not understand what it is like to live with someone that lives in pain, so I am thinking that I should find a support group?
If anyone has any advice for me, I would truly appreciate it. I love my husband to the moon and back, I want to make life as easy as possible for him, but at the same time, I do not live in pain, we do want to spend the rest of our lives together, and I understand that I have to make sacrifices, and that I have to compromise, I understand all of that in my head, My heart though ..... wants to know what it is like to live a "normal" life. I do not mean to offend anyone with that statement.
I hope everyone has a fantastic day and a very relaxing Thanksgiving weekend