When Multiple Sclerosis enters your marriage a practical guide is always appreciated. There is just too much terrain to cover all on your own.Finding reliable and trustworthy information is a necessity. As corny as it sounds, LOVE really can keep you together!
My husband and I have discovered that our love for one another is stronger than the disease we must fight every day. True it pulls at our relationship, but we pull right back and the constant tugging has strengthened our marriage muscles enough to withstand the constant onslaught of this disease
We will be celebrating our 30th anniversary this year (2009) and we've battled MS together for 16 of those 30 years.
Unfortunately about 1 out of every 4 marriages of people with MS end in divorce. Visiting any MS support forum proves just how accurate this number is. For some couples, MS is the straw that breaks the marriage's back.
That being said, it is still possible to learn to stand up to the stresses and strains by recognizing the underline source causing the feelings and working the problems.Don't just give up on your situation. As anyone married with one mate having MS can tell you, the problems are many.
YOUR MATE-THE PRIMARY CAREGIVER
If your mate has not physically or emotionally deserted you, please go out of your way to let them know you appreciate their being by your side. If you are newly diagnosed, don't forget your mate will need time to adjust to your changing life just like you do. Cut them some slack in the beginning. Seems to me it takes a good year or so to experience the majority of what MS will bring your way. Every time something new arrives, you both have to learn to accept and adjust to it. If your mate isn't especially helpful or understanding, it is probably because they just don't know enough about the disease and are feeling frustration. Knowledge about the disease may be all that is needed. Provide some good informational sites like the National MS Society and a good support forum for them to check out, especially the caregivers section. They will learn a lot and see this disease can be managed as a team effort.
Your mate has taken on the vast majority of your physical and emotional needs. You would hopefully do the same for them if the shoe was on the other foot, but that doesn't ease the enormous responsibility they have freely decided to shoulder.
Be patient, be understanding and allow them to develop their own ways of accomplishing tasks. If you aren't able to physically care for chores don't cramp their style or criticize them for not doing it your way. They don't need the negativity.
Nothing seems to bring out control "issues" more than inflexibility. If you find yourself rigid and unyielding as to the way you want things done around the house, try to back off and remember nothing is going to happen if your mate doesn't clean exactly the way you want it cleaned. Or if they don't cook just like you. After all you didn't marry yourself, you married an individual with his or her own likes and dislikes. Give them a chance to develop their own routines and you will be delightfully surprised and less stressed to boot.
SAYING PLEASE AND THANK YOU
Please don't forget to use these 3 little words daily and often. They should always be expressed as common courtesies even when there is no one suffering with MS, but even more so when someone does actually suffer from the disease. Think of all that is done for you by your husband, children, or other friends and family. Do you reserve the thank-yous only for those outside your immediate family? Your caregivers need to hear these words the most. You can express a lot with a kiss on the cheek and a pat on the hand and the words, thank you. Please don't forget to say them.
EXPECT SEVERE FINANCIAL HARDSHIPS
If you know a storm is coming you might be able to prepare to withstand it better. Financially speaking, the biggest cause of declaring bankruptcy is due to medical expenses. MS is not an inexpensive disease to treat. The injectables available (also referred to as the ABC drugs) can easily cost 800-1000 dollars per month. The MRI's needed, perhaps a hospital stay, seeing a specialist as opposed to a primary doctor. It can all add up very quickly.
If you have a big deductible with your insurance coverage, it is not hard to understand how you can become stressed out trying to figure out how to pay for it all. Add onto that a loss of income if both partners were working and the stress intensifies.
In my personal position, my husband is our primary wage owner and my primary care giver. Right now he is unemployed but we are fortunate that he works for a union that covers me very well. We have low deductibles and if I order generics, I have no deductibles at all. We also don't pay out of pocket for MRI's or other tests. I realize though, that this is hardly the case for other couples managing MS. Open and frank discussion about the costs can at least put some words to the feelings. Order generics if they work OK for you. Let your doctors know you pay high deductibles for the tests they order so that they can be conscious of your expenses.
Some drug companies will lessen the price of their drugs or sometimes provide them for free if you qualify. It is worth checking out. Usually you contact the drug company directly. Sometimes on their websites they will have a tab available for those who cannot afford the price of their drugs.
ENCOURAGE YOUR MATE TO RELAX
I admit it is hard to stay at home and be sick or weak when your mate is headed out for some relaxation. However it is also selfish to guilt or intimidate your mate in to staying with you just because your misery loves their company.
If your mate is also your caregiver, encourage him to get out and relax. They need it, and they need to be guilt free. You'll see a happier more relaxed person return to you and you can learn to enjoy hearing about the time spent leisurely relaxing. It is your way to demonstrate your love to them, so embrace it unselfishly and not begrudgingly.
INTIMATE TIMES TOGETHER
This private and sensitive subject needs to be discussed between the two of you. MS causes many problems and if not discussed damages your relationship. The MS Society deals with these matters as well as support groups and online support forums. Take advantage of these and ask questions unique to your situation. Do what you can to keep this part of your life as intact as possible. Understand that even if it changes, we as loving human-beings are adaptable and can change right along with it.
Discover what true intimacy means as well. It can bring you closer together than you ever imagined. Feeling free to express loving thoughts to one another is a very intimate thing. Just relaxing together knowing your both committed to your marriage is an intimate and satisfying realization. Handling money stresses and aggravations can bind you in a way that disease-free couples never experience.
Seize what you can and try not to dwell on what you can no longer do. Become a new couple in your own eyes. That is what ended up happening for us. We had been married just a little shy of 15 years when MS struck. We were comfortable with each other, had our family routine down and were enjoying our lives. Then BAM! in walks MS and we had to redefine what our lives together would be. We did it though and so can anyone facing a chronic disease or situation.
Another MSer.. on October 22, 2011:
After 27yrs. last week I found out it's over,uhhh because I can't mountain climb, that's the best one I've heard yet. Never, ever denied him his time out for physical things or union meetings, the opposite I would ask to hear every detail! Someone told me it wasn't only a mountain he was climbing but there was someone climbing it with him! I confronted him on that he denied, denied and denied some more, out of the 27yrs I had never seen him so irrate, any way I asked him straight up if he wanted a divorce, he said absolutely not. Next morning I noticed all our cars were gone, then I notice he only deposits $200 in our checking account for all the bills and food, usually it's $400 twice a month plus my disability check, I pay all the bills. We live in an area where you can't walk, plus he knows I can't even make it to the mailbox a the end of the driveway some days. When I ask him why he is doing this, he says for asking such a dumb question! It has only been 5 years since I stoped working, last year our son left for Grad school. I have never, ever seen him so mean, ever. He even bought another cell phone one of those trac phones, so yes, I am out of here, I am trying to hold off until the begining of March as that is my only grand child's birthday then I will be headed for Chicago to live with my sister who after speaking with him told me get the hell out of there he is abusing you, he told my sister I can't do anything! I swear this is not the same man I married 27yrs ago, mabye my MS has caused this since I can't run around anymore or he has just snapped, either way,,,I'm out....he would never read anything about MS or it's symptoms so mabye he just thought I was lazy, although I worked for 22yrs out the 27 and took care of the home and kids??? Guess you just never know for sure.
Darline Kilpatrick (author) from Delaware on August 05, 2010:
Wow Tony, that is amazing! I am so happy for your brother! I don't understand why the medical community has so many problems accepting that this procedure is helpful, even if it doesn't necessarily address why the problem with the arteries develops.
Your brother's experience can be added to the many others I have read about on Facebook's CCSVI page.
Thanks so much for sharing it with me. Be careful on those ladders! (smile)
Tony on August 05, 2010:
Just an update: I said I'd get back to you about my brother-in-law and his CCSVI procedure.
He managed to have the procedure brought forward and went over to Poland on 21st July 2010.
Within this short length of time his sight has been restored to what it use to be, he can take a long shower without having to stop because of the heat and most of all, what we have all noticed, he is full of energy.
You will probably recognise the symptoms I refer to with out going into to much detail.
Ho! He also said (and he hates going to the dentist) he would rather have it done again, than go to the dentist (no pain whatsoever $6)
I’ll keep you informed of his progress, will put up a hub when I get some time, seem to have no time to do anything lately,
(Painting the outside of my sons house, ever started something you shouldn't have), such is life.
Pass the news on if you can.
Darline Kilpatrick (author) from Delaware on November 15, 2009:
ethel, it is hard for those of us who are married to accept the fact that up to half of the marriages where one mate has MS and the other doesn't, ends in divorce. As you stated, it is tricky. Thank you for the comment.
Ethel Smith from Kingston-Upon-Hull on November 15, 2009:
What a tricky subject. You expressed your message well in this hub.It will be very hepful to people in such a situation.