how do you stop being afraid?

[hlm286]

I'm 25 years old and was just diagnosed last year. I'm married and have a 2 year old and 3 week old little girls. When I was diagnosed last year, I was only having lehrmitte's sign and suddenly over a weekend, I went completely numb from my neck down, couldn't walk, couldn't even move my toes, couldn't go to the bathroom (I had a catheter) and was hospitalized for 4 days on steroids. When I left the hospital, I need physio and gradually regained the feeling and strength in my body. I then got pregnant and was symptom free throughout my pregnancy. My little girl is 3 weeks old and I find myself in almost constant fear of having another attack. I felt protected I guess during pregnancy because they say pregnancy helps and now that I'm not, I find myself obsessing over every sensation in my body, wondering if it's an attack coming on. How fast and hard it came on last year traumatized me and scared me so much that I'm so scared it will happen again. I just keep thinking about my daughters and my husband and how I want to be there for them and be mobile and active and fun with them. Sometimes I just start balling because I'm so afraid of how my life might turn out. I try to eat healthy, I try not to eat a lot of dairy or gluten, I'm starting an exercise regimen, I take vitamins, I just need to get a handle on the mental aspect. How do I stop living in fear of MS and the future? I know worrying is bad for you and stress makes things worse, I just don't know how to stop worrying about it. I worry so much about the affects disability would have on my children and husband and I worry about my children getting it. I guess I'm so afraid of disability as well because I don't really know anyone with MS that has had it for years and lived a full mobile life. I just really need advice on how to stop living in fear because it's really making me depressed and having an impact on my life and family now because I'm worrying all the time, stressed out, get angry easily and am just wasting time in this poor mental state. I feel like I need counselling to help me cope but I thought maybe advice or insight from you guys would help.
Thank you so much.

[jimmylegs]

hlm, i found that it really helped me to take control and learn as much as i could. i am also stressing out like crazy lately, but i don't have two kids to worry about on top of everything else.

based on what you've said, a number of red flags are waving for me nutrition wise. if you want we can have a discussion, openly or by pm, about what you're taking, how you're eating, and what you might be able to do for yourself nutritionally.

[hlm286]

Thanks jimmylegs,
I've talked to you a bit before about nutrition. When I got diagnosed, I bought the Swank book and read it a bit and started cutting out sat. fats. I now eat very little sat. fats, probably less than 15gms a day usually. I then looked into the BBD and started cutting out wheat and dairy and limiting legumes. (I eat more wheat than dairy, very little of both tho, most days i dont eat any dairy) but I do eat a lot of rice products that are gluten free only because i like carb foods and they're like an indulgence if I can't have wheat. However I know the BBD says to limit rice as well.)

The vitamins I take are;
1 prenatal multivitamin (I'm breastfeeding)
50mg zinc (after talking to you about postpartum relapses)
2000iu vit D
an omega 3/6/9 capsule
and 1 or 2 calcium/magnesium pills (333mgcal, 167mg mag) (and i drink almond milk for calcium)

What are your thoughts? I appreciate any advice.

[L]

I'm 25 years old and was just diagnosed last year. I'm married and have a 2 year old and 3 week old little girls. When I was diagnosed last year, I was only having lehrmitte's sign and suddenly over a weekend, I went completely numb from my neck down, couldn't walk, couldn't even move my toes, couldn't go to the bathroom (I had a catheter) and was hospitalized for 4 days on steroids. When I left the hospital, I need physio and gradually regained the feeling and strength in my body. I then got pregnant and was symptom free throughout my pregnancy. My little girl is 3 weeks old and I find myself in almost constant fear of having another attack. I felt protected I guess during pregnancy because they say pregnancy helps and now that I'm not, I find myself obsessing over every sensation in my body, wondering if it's an attack coming on. How fast and hard it came on last year traumatized me and scared me so much that I'm so scared it will happen again. I just keep thinking about my daughters and my husband and how I want to be there for them and be mobile and active and fun with them. Sometimes I just start balling because I'm so afraid of how my life might turn out. I try to eat healthy, I try not to eat a lot of dairy or gluten, I'm starting an exercise regimen, I take vitamins, I just need to get a handle on the mental aspect. How do I stop living in fear of MS and the future? I know worrying is bad for you and stress makes things worse, I just don't know how to stop worrying about it. I worry so much about the affects disability would have on my children and husband and I worry about my children getting it. I guess I'm so afraid of disability as well because I don't really know anyone with MS that has had it for years and lived a full mobile life. I just really need advice on how to stop living in fear because it's really making me depressed and having an impact on my life and family now because I'm worrying all the time, stressed out, get angry easily and am just wasting time in this poor mental state. I feel like I need counselling to help me cope but I thought maybe advice or insight from you guys would help.
Thank you so much.

For me it was time that stopped me worrying about MS. After a few months I realised that I was just getting on with things.

Make sure your vitamin D is D3, and, next winter, I'll start talking 15,000iU daily. This may be too much. I've researched the pros and cons and I'm happy with this amount.

Perhaps looking at the CCSVI sub forum may make you a little more hopeful.

It sounds as though counselling would be beneficial for you. But then I'm of the opinion that counselling would be good for most people, regardless of MS. If you are worrying, stressed and angry and believe yourself to be in a poor state then I'd definitely recommend it.

[jimmylegs]

hi hlm, i thought we had chatted some before. that list looks pretty good by and large! is your omega 3/6/9 a fish oil, and does it list DHA and EPA?

for the rest, it looks to me like you would do well to add a high dose b-complex. you could try taking a b100-complex with meals and at bedtime for 1 week, then drop back to 1 per day with meals.

also, i personally take a natural ratio natural food source vitamin E pill which i may or may not have recommended to you. as a fat soluble vitamin, you might be having absorption issues through following a low fat diet. you can find a good quality supplement with 4 tocopherols and 4 tocotrienols (don't buy cheap isolated alpha-tocopherol it can do more harm than good) OR, go buy some raw sunflower seeds and raw almonds and eat some of those each day. a quarter cup of those each day provides in the neighbourhood of 200 calories and most of your vit e needs. i did a little math to see if you could shave off some calories by eating spinach instead. the answer was no! yes it's lower in calories per serving but you'd have to eat so much more .. the nuts are the most nutrient dense for vit e.

FYI i eat wheat, dairy, legumes, eggs, all kinds of bad things, but in moderation and properly balanced with anti-inflammatory foods. very stressed, but physically fine and i'm more stressed about employment than disease, overall.

hope some of that helps gotta go check my soup it's smelling like i need to go turn the heat down..

jimmylegs

[gymbuff]

Hi hlm286, sorry to hear that you are experiencing such mental anguish. I think it is very difficult to just 'stop worrying' it is something that you grow into. It takes time, lots of time. I tend not to worry anymore and haven't worried for years but I couldn't tell when I stopped worrying. I was diagnosed over 20 years ago and I saw my eldest girl get married last week. I walked her up the aisle in the church without stumbling and didn't use my walking stick. Think positive. It won't cure MS but it helps getting through the days and the nights. keep doing the right things with diet and exercise but keep a positive frame of mind. Worry will only accelerate the slippery slide.

Keep your chin up & smile

[Bubba]

For me it was time that stopped me worrying about MS. After a few months I realised that I was just getting on with things.

Excellent words of wisdom! I didnt understand it then (in the begining) but now I do. I am not a big counseling fan as few people actually know about the uncertianty of MS. However, I did cheat in the begining, I took celexa everday, and xanax for "breakthrough" periods. After a week, I had calmed down completely and was able to focus on my future. TIME. was the key though. Check with your doctor and get some celexa; its a wonder drug for me. I went from not sleeping and thinking about MS 24/7 to only a few times a day. Even when I have to cath myself, ect... It doesnt devastate me anymore with the thought of MS.

[silverbirch]

For me recently DX 2009 with no prior symptoms of MS headaches 1/2 a month to an attack that left my right side paralised then it returned 98%

Taken all the vit mindfull of my diet but eating rubbish as well I lost 3 stone with the shock of MS and went back on cigerates. Now today is my first day of cigerates. I tried to fight too many battles at first now Im picking them.

Got rid of my business after 12 years stopped my degree.

Looking up and learning about CCSVI and looking at 9gabbycats she's a tonic in her self.

Looking at threads in this forum took a massive edge off I doubt that I will ever be the same person but a more understanding if anything.

I do have a wounderfull husband and two teenagers 19/17 I know they are not babies but little chrildren little problems big chrildren big problems .
I try not to meet problems half way now...........

[hlm286]

Thank you all for your responses. I know it will take time. I just keep telling myself to take things one day at a time, appreciate every moment and live life to the fullest so I don't have any regrets. It's just hard sometimes...

Please keep the comments coming. I appreciate everyone's advice!

[L]

Thank you all for your responses. I know it will take time. I just keep telling myself to take things one day at a time, appreciate every moment and live life to the fullest so I don't have any regrets. It's just hard sometimes...

Please keep the comments coming. I appreciate everyone's advice!

Get tested for CCSVI! That's my advice.

[smokey]

I stopped being (so) afraid once I had discovered CCSVI. It is not a miracle cure, but it gave such hope. Hope is so important. It is also really beneficial to develop a group of others to communicate with. Not that I don't continue to feel afraid now and again, but far less so, and far less often.

[Wonderfulworld]

It's a good question Hlm, not sure I can pinpoint when that awful dread fear stopped. Maybe after about 4 years when I had got a better understanding of managing myself and adjusting to the reality that I could not do everything I'd done before. I think my acceptance - which, if I'm honest, only really happened 10 years after diagnosis (it's now 12), was the key to the fear being less.

I think up until then I'd feared admitting my limitations, feared other people's rejection, and I'd definitely feared holding up my hand and saying 'I can't do X because of MS'. MS is a truly terrifying illness on occasion for me, but I think if you still feel awash with panic for a while, then maybe it would help to take some anti-depressants for a while. I did about a year after diagnosis and it gave my head a break from the worry that was churning around and around. Sometimes with me depression just manifests itself as extreme anxiety, and I always try to rationalise why I'm anxious, but really it is depression.

My Dad always says depression is anger gone wrong. Why wouldn't we be angry with something as uncontrollable as MS.
All that said, 12 years on from diagnosis at 25 and I climbed a small mountain today with my 2 year old and I feel good. If I'd been able to see myself back when I was diagnosed at 25, I would have worried less.
Hang in there.
x