divorced thru diagnosis

[Astralane]

Hi to all fellow sm/cm sufferers,
I was wondering if many of us have lost a long term partner due to their inability to cope with our illness?
I nursed my husband of six years through a brain injury which left permanent changes in personality, and nine years later.. he found a woman who could party all night and didn't need a cane to walk.
We had enjoyed a very active life together, but the changes that come with SM, ( excruciating pain, headaches, extreme fatigue ) left me unable to keep up with him.
My syrinx is T5 to T8 , have DDD, three herniated discs, C5/C6 , L5/S1 and L1/? , plus rheumatoid arthritis.
I am an intelligent woman of 48 ( he is 40) and I would like to bet there are a lot of us out there who are now alone because a partner didn't cope with our diagnosis.
The sad thing is that we have so much to give, especially empathy and love. I had to give up a career I loved as a nurse's aide because of pain and medication restrictions, and that was bad enough.
Are there others out there in this position?
Blessings to all, Astralane.
P.S not looking for sympathy, just wondering if this is common.

[Judi]

Hi,
I am sorry to hear of your situation. I know this has been pretty hard on my husband and he tries hard to understand the situation. It is more my issue than his, however. I get angry at my limitations, overdue something physical and then am in a lot of pain. After I do this, I recognize the stupidity of my behavior...
I know it is important for us to stay active in our communities, and be visible. I wish you pain free, happy days
Judi

[karenb]

Astralane,

I can definitely say "yes."

Early on, I lost a boyfriend of 5 years because he was embarassed by my cane. (Finding a lovely mail-order bride from Russia didn't hurt either...)

About 9 years later, as my then-fiance and I started realizing that there was more to my condition than just a bum leg, he started distancing himself. Once he found out my diagnosis, I never heard from him again, nor did he answer phone calls or letters...

These have been the most serious relationships I've had since having the first noticeable symptoms of SM...

Karen

[Astralane]

Thank you Judi and Karen.
I'm glad your husband is sticking by you, and Karen, I can really relate... the cane was the last straw for me.
I wish you both all the best, Astralane.

[karenb]

Astralane,

Remember this - there are two ways to look at your cane: either it is your best friend, helping you to navigate this world and continue to be an active part of life, or it is your enemy, making you look old and feeble.

Other people may make their own judgments, but the decision is ultimately up to you.

Karen

P.S. There actually came a point when my cane became so integrated into my body that a lot of people didn't even notice it!

[Astralane]

Dear Karen,
I actually decorated my cane with hearts and flowers, all in pink. For the days when I need to use it at least it looks cheerful.
Wishing you all the best.

[pmaxwell]

The idea of decorating a cane sounds like fun. We should have a contest.

[razzle]

what happen to the T shirt design contest they were going to have ?

[phyrehawke]

I'm so sorry to read about the relationship problems. I was lucky enough to find a good guy for this marriage who had been in a terrible semi accident. That was before I met him, and I wasn't specifically diagnosed with the SM yet but we knew I had some sort of severe chronic neuralgia. One of the things we used to bond was that we both understood chronic pain and how to give each other space for that, and not push one another when one of us said pain was an issue without having to be too elaborate about it. You just don't get that kind of understanding from the average person out there. But we still have relationship issues related to the pain. Like this past year has been a neurological nightmare for me, and I just couldn't go out much. Sometimes hubby is concerned about that and sometimes it comes out as resentment when he wants to go do stuff and he misses my company.
Hubby #1 was a casualty of the disorder, not so much the diagnosis. I only recently found out I have had my spinal cord pain reflex messed up for a long time...probably not too long after the accident that caused the syrinx, and I know it messed up our marriage from the beginning. But in the end it was his own wierd inclinations that made the marriage end and it had little to do with what was wrong with me.

I don't use a cane (used to every once in awhile), but I decorate my medical ID bracelet to make sure I wear it.
I don't know about designing a t-shirt, but ever since my neurosurgeon told me the story of the nymph Syrinx I've wanted to paint her hiding from that pesky Pan and getting turned into a reed. I always thought that might make a nice card or cup design for ASAP. I am an artist, but high pain problems are somewhat creative blocks for me. Hopefully we'll have that resolved soon!
Rozanne

[karenb]

Decorating canes sounds like a great idea - I've seen some really inventive ones during the last 15 years or so... I find that I prefer standard medical equipment for most uses... if only because it goes better with formal attire during concerts and stuff! (Besides, it detracts from my stilettos!!!)

Karen

[Flyer112]

Happy Easter everyone!!! I have been diagnosed with syringomyelia 8 years ago and it def DOES affect relationships. It's an idiosyncratic condition in Manys eyes and hard for them to understand because sometimes outwardly to them we "look fine" but little do they realize how excruciatingly painful SM can be ....I ended up divorced and had a very unsympathetic ex wife.... I however have found an an amazing all natural product to help me cope with the pain. It's made from the fruit of the prickly pear cactus and it's called "Nopalea". I would highly recommend this juice to ANYONE suffering with SM. it's an anti oxident and really gets me thru the day with very minimal pain!!! Please contact me at ebony112345@gmail.com for more information on it!!! God bless us all and keep your spirits up!!! Don't focus on your problems or you'll only get more of what you don't want....Danny L...

[phyrehawke]

Wow...One of the weeks I did better with my pain I made albondigas soup...with *nopales*! They are easy to get here in SD! I'm pretty sure the reason they are so helpful is that gelatin-like stuff they make such large quanties of once you cut them open. I've done a LOT of homework on that amino acid/neurotransmitter lately. It is one of the ONLY natural brakes for NMDA, which is the chemical that often causes us so much spinal cord pain in SM. NMDA is the stuff they use ketamine and methadone to calm down when it starts making the pain super severe because the level gets really high. Normal narcotics just don't work on that kind of pain very well because they chemically aren't designed specifically for it, and I think that's what a lot of spouses (and general doctors) just don't understand, as things get worse and one thing after another fails.

Anyway...the glycine principle extends to all foods that make it. Our bodies are supposed to make glycine, but I have a theory that our bodies either don't, or can't make enough of it, or it's getting blocked somehow (and sometimes by the meds we take, like topamax might block it at some stage). When we made more whole food from scratch and didn't waste anything, our diets were much much higher in it. It helps to relax muscles and it's a little sedating. It can help you sleep. It works like brakes in the nervous system and slows things down. It's a protein amino acid that behaves like a gelatin, so you find it in things like pudding and jello (yes, it's why they serve a lot of Jello in hospitals for dessert, to calm you down lol), and egg whites. When you slow roast/boil whole chicken, turkey, or meats from scratch it's the gelly goo that congeals along the edge that isn't fat. It's also in tuna, sunflower seeds, pumpkin seeds, soybeans, peanuts/PB (but you have to consume way too many calories of peanuts/PB to get enough of it to make a difference). It's also the goo that holds lunchmeats together. Bacon and sausage are high in it. I hadn't been getting hardly any in my diet because I'm allergic to sodium phosphates, which are used as a preservative in almost all lunchmeats, bacon, sausage, and in jello and puddings to keep them from clumping.
We couldn't figure out why I was on all these pain meds and they weren't working very well at all. And I have wicked insomnia (due to apnea)...that alone was cause for arguements with the spouse. Try explaining how you can take this much CNS depressant medication and not sleep more than 3-4 hrs/night! lol At least some of it was because I was almost entirely missing this amino acid, and for some reason I don't seem to make nearly enough of it. I was losing a lot of weight really fast, and by loading down on homemade foods high in glycine I managed to stop that. Now my pain level is down quite a bit, and I'm getting a little more sleep...sleep study is next week and we'll find out more then.

Another thing...hubby's friend forwarded a youtube link about how coconut oil is showing improvements in alzheimer's and ALS. ALS was one of the first things the neurosurgeon ruled out when I came to him in 2005, and after I had more symptom progression after yet another accident I swear I wanted to go get it ruled out AGAIN. I'd heard good things about coconut oil before, and I don't see how it could hurt anything to try it for awhile. So I started mixing 1Tbsp of coconut oil into my warm milk, with a little sugar every morning. That seems to be making a difference in my pain level. I had a major improvement in the brain fog when they got a lot of my pain under control with new meds, but the coconut oil really seems to sharpen me up quite a bit so I'm thinking a lot more clearly after years of chronic pain brain fog. It's very nice to have my brain back, lol.
Rozanne/phyre

[Beverley]

Well I guess I am now a statistic of divorce too... My Husband has decided after 19 1/2 years of marriage that we got married for the wrong reasons...
He is in Love with one of my best friends from childhood and has left me with no money, bills behind and moved in with her. Wonderful.
To make matters worse the Lawyer I consulted has told me that since we were married for so long he is entitled to half of everything including
my retirement. So I could end up without a place to live... He just got a job back in October after being out of work for 3-4 years, had spent every
dime that I have in the bank but yet he is still entitled. I would not be able to live on my retirement let alone half of it. And to top it off a
few weeks ago he had my Son empty out his account to fix a 4-wheeler.

I will find out at the end of the month if I need more surgery that I cannot afford even though I have insurance. But now I have to pay a lawyer
for a divorce to he can play house with someone else... Some times I wonder just why I have to have this to add to my misery. I just doesn't seem fair.

[Dcuster]

Count me in on the divorce statistic. 2 yrs ago. 25 yr marriage, however with that said I have to say it was the best thing I ever did. My X was so abusive he thought he could help me out faster on the disability I guess. Anyways, I gave him everthing and just took my closes lol. I gave him 2 choices, he could sign the papers the next day and have everything or he could be a total SOB and I would take half of everything right down to 2 wheel's from the riding law mower lol. He signed the papers the next day. We were divorced 3 wks later he did not even show up.

Everything we had was paid for car's & house etc. but I found out it really did not matter it was just stuff.

Now for the happy ending, I found someone 1 month later who lived in my same town who totally understands me and understands about my pain since he suffers with gout. He takes really good care of me and we have been living together now for 2 yrs and getting married Nov. 23rd this year. He is the sweetest, kindest guy I have ever meet. He got me to stop smoking from day 1 and we now walk 2 to 4 miles every day. He started me out slow and worked me up to the 4 sometimes 6 miles a day and it has done wonders for my legs.

I have SM only that I know of, really have never seen an expert. I have a syrinx at my T10-T12 levels that was the whole width of my cord 1.1 cm wide. I did have a shunt but still have the same pain I had from the beginning. My legs get tired really easy and then sets in the fatigue.

Just remember there is someone out there for everyone, don't give up and they will show up when you need them the most. What I try to do with my new Fiance is try not to dwell on the illness as much as I did when I first found out. Now I just go day to day and tell him if it is a heating pad day etc and he understands.

[reedy]

....ever since my neurosurgeon told me the story of the nymph Syrinx I've wanted to paint her hiding from that pesky Pan and getting turned into a reed. ....

hi Roz! That's the first reference to Syrinx the nymph I've seen on this forum! It is how I selected my username - and the photo is some funky reeds (I'm a freshwater biologist by profession, so it seemed appropriate). Around the time I first started posting (when I got my diagnosis) I was in a corner of a museum where I saw an image of Pan and Syrinx, not unlike this: http://www.google.co.uk/imgres?imgurl=http://www.nationalgallery.org.uk/upload/img/balen-pan-pursuing-syrinx-NG659-fm.jpg&imgrefurl=http://www.nationalgallery.org.uk/paintings/hendrick-van-balen-the-elder-and-follower-of-jan-brueghel-the-elder-pan-pursuing-syrinx&h=371&w=290&sz=54&tbnid=XrF2LbrXmukJoM:&tbnh=104&tbnw=81&zoom=1&usg=__rhN80075mWGvIwDlYpL-v23RaFU=&docid=juDGKTluvbPNFM&sa=X&ei=RhvFT7PyG4Gu8APsjp3xCg&ved=0CHoQ9QEwBA&dur=3934

Sorry for the bit of a diversion on a really serious topic. When I was first in a paralysis ward (12 years ago) the nurses told me and my partner that a third of the people who come in end up having their relationships break up. So it is common, though that doesn't make it any easier.

Although we (still!) aren't married, my partner has stuck it out throughout this whole saga. He refers to it as 'us getting sick' (not just me). Its a tragedy that we share. I'll tell you though, at the time I don't think I would have assumed he'd stick around. I was just very lucky in my choice of a partner. (And I put up with some challenges on his side too, but they pale in significance to what this disease has brought on our lives).