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How do these odd chronic diseases affect your relationships with your spouse/partner/family/co-workers?
My wife often says she wishes there was a support group for her to help deal with the changing symptoms, moods, pain etc that chronic disease (like my SPS) forces us to live with. Any thoughts or coping mechanisms out there? Should we start a message group for them to share and support each other (and us)?
Dear DrJim,
I am so sorry that you are both going through this difficult experience.
There are two very good patient resource groups that might prove quite helpful :
The Well SpouseAssociation --www.wellspouse.org
(800) 838-0879;
The Family Caregiver Alliance --www.caregiver.org
(415) 434-3388;
I think that between these two organization, your wife will find some guidance and support.
Best of luck to you both!
Sincerely,
Stefanie Putkowski, RN
NORD
Hi DrJim,
In my lifetime, I have had the unique experience of being a caretaker of a terminal child, then I get SPS...both sides of the fence.
With my child, my employer provided home care so I could continue working. That time away gave me an emotional and mental break, in touch with others, and made me a better caretaker for my child and mother to my oldest child during that difficult time. I developed a special friendship with another mother of a special needs child. We helped each other a lot...mutual understanding.
It would be good for your wife to have some me time by herself or with friends: gym, craft class, church, movie and shopping? Support from other spouses dealing with her issues would be good.
It would be good for the two of you to do some very honest, very difficult, talking about your mutual needs and feelings - the impact SPS has had for both of you. It happens to many, both sides of the coin, SPS becomes the identity, life, and focus.
Concerning friends, those who were 'acquaintances' usually slide away. That's okay. True friends, [Which could be a NORD community!] are very rare. If lucky to have one, cherish the relationship. You both will be able to adapt. If able, make new friends.
Many [caretakers & diagnosed] get caught up in the physical symptoms of a diagnosis. Sometimes medication can have a negative impact, i.e., aggression, depression, apathy on one's personality. Emotions and relationships get overlooked to rise up as major issues later. SPS is a difficult disorder to live, let alone explain. How to get others to understand? [My mom still fusses over 'my bad back' after countless explanations my back is fine; SPS is neurological.]
I have a failed relationship. I lost me as he became selfish, controlling, and complacent. It was a slow disintegration. The lessons I learned I took with me in my new marriage.
A great topic, too deep to cover in one post. ;) A good read I came upon in "More" magazine that anyone in a relationship with a disabled/chronically-ill partner or spouse can relate and hopefully benefit:
http://www.more.com/2024/7563-how-a-marriage-survives-when
Sending good thoughts. ;)
I see someone recommended the Well Spouse Group, I belonged to it when my husband was ill with incurable heart disease when he was 37. He died when he was 47, but that group saved me. I was replying to recommend them to you for your spouse. Encourage her to go, as it helps. I was even on a 20 20 program that highlighted the group years ago.
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