Anonymous husband - My Experience living / use to / with a Spouse with MS
Thank you for this opportunity to share my 19 years of experience with a lovely wife living with MS. This is my story, sometimes sad sometimes less sad, but this is what my life is all about.
When my (ex) wife was diagnosed with MS 19 years ago, our children were still young so we managed our daily lives around Mom. As she tried to get around ‘on her own refusing to ask for help’ she fell with resultant open wounds and blood streaming from her face, “not to make life difficult for us”, fractured shoulder/ broken teeth/ 12 stitches in her face, not to mention all the bruises on her lovely body. One evening in Cape Town, won’t mention the hospital, people accused me of domestic violence and that I must have hit her out of frustration/anger. I was locked up.
We tried everything available, every little ray of hope on the internet, but all in vain. We tried bee sting therapy; amalgam; vitamins; and tens of other ‘things’; thousands of rand; the cost did not matter because I did it for my wife. We were uncertain; had no idea how to handle this disease; lack of knowhow; it was terrible. It had a severely negative effect on our married life. Complications; different stages of MS; to a point where she became totally wheelchair bound. Sex --- (what’s that) the good Lord knows that this situation was becoming impossible; when you cannot expect sex from your wife no more. Life revolved only around Mom and her MS. Family life changed in a terrible way - no more holidays, no more camping, no more week-ends away. Life revolves around Mom and she cannot do that no more.
As a husband you become a “loner” everywhere you go on business trips /functions / conferences you are all alone, always the 3rd person when you’re with friends. When everybody is enjoying themselves you either became stone drunk, or go to bed early, just to get away from the loneliness that goes with it. You lose focus, surrounded by beautiful places but nobody to share it with. You start imagining others are having fantastic times together. You imagine you are the only person in the world whose focus must be totally on your wife and her condition. Everybody sympathises with her; praise her for being able to do so much for herself and so on, but nobody sees me doing so much for her and myself and losing out on the husband deal. It is great that she is supported, but nothing for me.
The sad part of this whole story is “Nobody ever asks”, my friend (husband or children) are you OK? How do you cope with this on a daily basis? How can we help you? Do you need counselling; do you need to see a specialist / therapist to help you cope with this situation. Nobody.
This is my wish
Please, please, get the family members of such a person some help, we presume they are OK, but they suffer in silence. As a husband you must be “strong” not to show any sign/s of not coping with the situation, the financial situation, the questions of what will happen in the future how would you provide for everything, by September of every year your medical aid is exhausted, where will the money come from should your spouse need urgent medical attention. The questions are never-ending. I’ve got divorced after 31 years, because I’ve lost the fight against MS. I cannot carry on; the tears are running all over my keyboard, this is my story.