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Thursday, August 16, 2012

My Life with Multiple Sclerosis


My life with MS

     Life with Multiple Sclerosis (MS) is not fun nor is it easy.  Are there others out there worse off than me?  You betcha!  This is not a post to whine and complain, it is just to share with you some of the things I go through because of MS.
1.    Chronic pain.  Yes, I have pain EVERY single day.  My husband is always telling me I am the toughest person he knows.  I don’t believe it.  I am not tough; far from it.  I feel like all I do is complain or whine.   I have trouble sleeping because of the pain.  I have pain in my arms, legs and feet primarily.  I have pains that come and go; some that never go away; burning pain; stabbing pain; throbbing pain and dull pain. 
2.    Vitamins (and lots of them).  I currently take Fiber (sluggish bowels ever since I was diagnosed); 1700 IU of Vitamin D; 1130mg Calcium; 8500 IU Vitamin A; 1100 mg of Vitamin C; 35 IU of Vitamin E; 5 mg Vitamin B6; 255 mg Selenium; 1000 mg fish oil; 250 mg Chromium; and a multi-vitamin.  There are several other vitamins that are recommended but I can only buy so much at a time. 
3.    Foot Drop.  This is where you can’t really lift the front part of your foot.  When this happens to me (which occurs at least once a week), I just kind of swing my leg around.  Keeps me from falling as much. 
4.    Fatigue.  Unless you have MS, you just don’t get it.  I suffer from unimaginable fatigue.  It isn’t just I worked all day and I’m bushed.  I do nothing all day long and still need naps.  I get so tired I cry because I’m tired.  I am so tired that I can’t function a great deal of the time.  I am sure part of the reason is lack of sleep.  I toss and turn and wake up at least 10 times a night due to pain, etc. 
5.    Urinary, digestive and bowel problems.  Nuf said.
6.    Leg and arm pain.  There are times that I feel like a screw driver is stuck through my muscles of my right arm or my right leg.  It is usually sudden and can stay for 5 minutes or 5 days. 
7.    Feet pain.  For the past 2-3 weeks, it feels like I am walking on nails or that nails are pushed up through the bottom of my feet.   This pain is nearly constant.  On top of this, at least once a day, I get a sharp sudden pain in one of my feet like I just stepped on a sharp piece of glass and it is deep inside my toe.  This often happens when I am on the bed and only when I push on the area that is hurting will the pain let up.  Or I get a pain along my toe nails that feels like someone just shoved a toothpick under my nail.  Sounds fun, huh?
8.    Balance issues.  If you should see me out walking (which you won’t, I do not get out much anymore) half the time you would probably think I was drunk.  I am always walking into walls. 
9.    Depression.  I get so depressed at times it is scary.  I hate it.  I have a great husband and great kids.  I have no reason to be so sad but I can’t control the feelings. 
10. Cognitive issues.  This one probably bugs me the most.  I used to be the most organized person in the world.  I could remember pretty much everything and could multi-task like no other.  Now,….please!  I have memory issues.  I can’t drive alone anymore.  I will forget where I am going.  Get lost in my own town.  Get scared.  Not know where I am even at.  I get confused over the littlest things.  I hold a Bachelor’s degree and now I have trouble putting thoughts together, spelling, etc. 
11. Speech issues:  This is one of the more embarrassing.  I get to stuttering a lot now.  I will try to say something and I am like a broken record and get “stuck” on one word and repeat it 4-5 times.  I may try to say one word and I say a completely different word.  I may have trouble forming sentences correctly.  I try to say them but the words get rearranged by the time they come out of my mouth. 
12. Swallowing difficulties.  There are times I can’t swallow.  Lots of the times, I do not even have anything in my mouth.  It is just like my body has forgotten how to swallow.  When it happens I almost feel like I am choking or drowning.  It is scary.
One of my biggest complaints is people who say things like “Oh, I knew someone with MS and they didn’t’ have anything like that.  Are you sure you have it?”   Ugh!  MS is not the same for everyone.  Different people have different symptoms.  Do you know there are over 70 different symptoms with MS?  Click here or here to read more.
If you know someone who suffers from MS, be there for them.  Please do not say “well, get some rest and you’ll feel better” or “hope you feel better soon”.  It is not like a cold.  It is not going to go away.  There are good days and bad days but it is an incurable disease.  Be sympathetic.  Help out when you can by cooking a meal, doing some laundry or just listening to them.  Let them know they are not worthless; they are still the same person. 

Thanks for letting me share about this awful disease.

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28 comments:

  1. You sound like me -- I am going through MRI testing now for this.

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    Replies
    1. Diva, let me know what the results say.
      Melody

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  2. So sorry! I have RA and I know exactly where you're coming from. People just don't understand the stuggles with these autoimmune diseases and how they affect us EVERY day. I get the same thing "well everybody has arthritis" they think no big deal. People (friends and family) need to research these diseases so they can better understand what we go thru every single day of our lives. Like you I don't want sympathy, just a little understanding. Hang in there! Hope you have more good days than bad!

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    1. I am sorry to hear you have RA. These diseases sure aren't nice. Seems we have a lot in common. Hope you to hear from you again sometime.

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  3. Hi! I'm also a homeschooling mom (of 4) and have MS. I have been able to relieve, or completely get rid of my symptoms by diet alone. I have a facebook page where I post other people's testimonials, encouragement, recipes, and health tips if you're interested. (I'm not selling anything) Take care, and God bless. (o:

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  4. Oops-- here's my fb address: www.facebook.com/attackmultiplesclerosis. I know you're already taking some vitamins and doing some healthy eating-- I did that for awhile too, and it wasn't enough. Hope my page helps. (o:

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    1. Please, please tell me more about the diet change you use. I am willing to try about anything.

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  5. Hi Fellow MSer,
    You really need a walker. It will improve your balance and it will allow you to be more active.
    Take care

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    1. Patty, I have a walker and a wheelchair. I should use them more than I do but I don't.
      Thanks for stopping by!
      Melody

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  6. I am sorry to hear about what you have to go through every day. I suffer from chronic lower back pain so I can imagine what it's like for you. Does chiropractic help? It did me good but the problem is I have to keep going back for treatments and each visit is costly.

    Have a nice day!

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    1. Veronica, I have not tried chiropractic yet. Money is tight and we are just trying to get by right now. I am glad it helped you. I have fused disks in my back and (thank God, I have not had any episodes in awhile). Back pain is awful.
      Thank you,
      Melody

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  7. I happened to stop by from an Alexa Hop, and I am glad I did. I'm up at 2:40 AM with some of those same, awful symptoms. Muscle spasms and neurapathy, especially. I don't have MS, but I have lupus and fibromyalgia - and it is wreaking havoc on my nervous system. I used to be a graceful little gymnast, and a brainiac, too. Now I'm clumsy and the words that come out of my mouth aren't the ones that are in my brain. *sigh*

    I'm so sorry that you live this way, too. I hope you have a nice, stress free Friday, and a wonderful weekend.

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    1. I am still up too. I am sorry you are having the same issues. These diseases have a lot of the same issues and I dislike them all. :-)
      Hope you feel better soon too.
      Thanks for stopping by.
      Hugs,
      Melody

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  8. I am following back from Hey Blondie. So sorry to hear of your constant pain and multiple issues. Praying for relief.

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    1. Blondie, thank you for following me back and for the prayers. They both are really appreciated.
      Melody

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  9. I'm so sorry you go through so much, but so very glad I found your blog. I was diagnosed in Nov 2011 and have had so many of these symptoms. Some I didn't even realize were related till reading your blog. I'm sorry we have to go through things like this but its helpful realizing I'm not alone. Especially since my Drs make me feel like I'm crazy. Thank you

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    1. Glad you stopped by. We all have to stick together and support one another. If you ever need to talk, I am here for you! You are not crazy.

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  10. I have found great relief through changing my diet and adding in acupuncture, massage and oxygen therapy.

    On my phone....sorry for such a short response.

    Are you on any disease modifying drugs?

    I was on Copaxone for almost a decade and switched to Rebif last summer....tough med to take but really good

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    1. Michele, for the oxygen therapy, are you using Food grade hydrogen peroxide? I have not tried it yet, nor acupuncture. I am not on any drugs right now, just trying diet and vitamins. I appreciate any suggestions or tips you can share.
      Thank you,
      Melody

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  11. Just begining my journey with the MS monster. I have had alot of the symptoms you described and it is so frustrating to have people to tell me to rest, take some Aleve, when the meds kick in it will be better. I also feel alone and frustrated and quite frankly scared to death, what will happen, when will I feel better, what will become of me and worst of all will anyone around me ever fully understand what a day in the life is really like. Thanks for posting this, at least right now I don't feel as alone. Take care and bless you for the time you take for people like me

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    1. "K", Please know that there are a lot of people like you and I and the MS family is a supportive one. If you ever need to talk, I am here for you. You have the same fears and concerns that I do.
      Melody

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  12. Bless your heart my friend...thank you for letting us into your life and sharing what MS is like for you. I have joint issues that won't get any better, and some days are better than others, and those are the days I can get a lot done, but then there are those days when the pain is constant and it takes me down...no matter how tough I think I am. That pain gets on my nerves after a while, but it is a reminder of how much I need God's strength every day of my life, and it makes me so grateful for the "good days". My girls are 16 and 13 and they are such dolls to rub my back, neck, and shoulders when they cramp. For a moment in time, the pain is relieved... for a little while at least. I LOVE those moments in time:) Until someone walks a mile in your moccasins, they can never understand what a day in your life is like, but those of us who do, we stand with you, and hope to be an encouragement to your heart. God bless you real good:)
    Tammy

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    1. Tammy, I am so glad God has blessed you with caring and loving daughters. We seem to have so much in common. I am glad you found my blog!

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  13. Such a difficult thing to go through - my heart goes out to you. Have you researched about low dose naltrexone before? I used it for awhile because of my thyroid issues and I was in a Yahoo group that discusses it and SO many people taking it for MS said it helped to control their symptoms immensely. It may be worth talking to your doctor about! www.lowdosenaltrexone.org
    Hope that you get to feeling better very soon and don't give up!

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    1. April, thank you for stopping by and for your comments. I will look into naltrexone and talk it over with my doctor. Thanks again!

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  14. Wow...a lot of the symptoms you are listing, I currently experience. Actually I have been experiencing these symptoms for years. I was tested in 2000 for MS but the doctors said something about only a few nodules? Instead they said I had RLS. Plus I also have PKD.

    In thoughts and prayers.

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  15. So sorry for your pain and frustration! Please check out terrywahls.com. She is a doctor who eliminated many of her ms symptoms with changes in her diet. Also please check out the hallelujah diet. Many ms sufferers (including myself) have seen unbelievable results using dietary changes. If you haven't already eliminated gluten from your diet --please consider doing so! It will help many symptoms. I try to follow a vegetable heavy paleo diet with lots of raw veggies and fruits; green smoothies and juicing with a juicer. Best wishes to you!!!

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  16. Thanks for sharing .....helps me understand more fully what living with MS is like.....Sounds like a lot......Thankfully you know the Lord.......And with Him all things are possible........

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