May is MS awareness month

I have MS. I think life is pretty good, usually. Occasionally I have some wild and wooly symptoms, but for the most part my life is normal. I have been lucky enough that most symptoms resolve and mostly go away. Ive also had long enough now to get used to the idea of MS. I think I could continue to roll with things even if they get a bit more serious. Maybe. Who knows? It might never come to that.

I also have great family members, friends and a super hero spouse. It makes a big difference.

So, May is MS Awareness Month. I thought I’d post a link to it just for some general info. And I found this a while ago – it’s another blogger’s descriptions of symptoms that I’ve also enjoyed and how they feel.

Can You Imagine?

Have you ever had your leg fall asleep? Then you are familiar with that “pins and needles” feeling. It usually passes once circulation is restored to the leg. Now imagine having that “pins and needles” feeling in both legs constantly.

Have you ever had your picture taken and accidentally looked at the flashbulb as the flash went off? Then you are familiar with that “burned out” spot in your eyes. It usually clears up in a fairly short period of time. Now imagine having that burned out spot grow larger and larger until it covers your entire visual field. Then imagine that spot staying with you for months.

Have you ever stood up too quickly and felt dizzy, disoriented? Maybe the room spins? Then you are familiar with vertigo or lightheadedness. It usually passes within a few minutes. Now imagine having that vertigo all day and all night.

Have you ever over-exercised, maybe too much hard work in the garden or too many weekend-sports games, and felt shin splints or sore muscles the next day or two? Then you are familiar with the discomfort of really tight and sore muscles, or “spasticity.” It usually passes in a few days and is relieved with aspirin and BenGay. Now imagine having spasticity in your legs constantly regardless of your physical activity.

Have you ever pulled an “all-nighter,” maybe driving all night or staying up to watch a game that runs into triple overtime or to study for finals? Have you felt really tired the next day, a little weak and unable to think clearly and no amount of coffee with help you? Then you are familiar with fatigue. It usually passes after a day or two of catching up on sleep. Now imagine having that type of fatigue constantly.

Have you ever had a little too much to drink? Maybe had some parts of your body go numb? Maybe been a little dizzy? Maybe a little uncoordinated, tripping over things and not being able to hold you glass very well? Maybe your speech got slurred? Maybe you couldn’t see or think straight? It usually passes when you sober up. Now imagine being like that all the time, without the pleasure of a glass of wine.

If you can imagine all of these things, then you can imagine what it feels like to have just a few of the symptoms of MS. What I described are only some of the symptoms that I have experienced, and I have not experienced the worst that MS has to offer a victim. Can you imagine even worse symptoms.

Now, can you imagine a day when we won’t need to have this conversation? Can you imagine a day when there is cure for MS? Can you imagine a day when there is treatment to reverse the damage that MS has already done? I can. That’s what gives me hope.

And I can’t imagine a life without hope.

That pretty much sums it up.

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29 thoughts on “May is MS awareness month

  1. You sound like you have a “healthy attitude” and you obviously really need it if the symptoms described are only a few of the things someone who has MS deals with. Thanks so much for the enlightenment, and I wish you the best on your journey with this disease–I do not think those of us who are “well” can come close to understanding, but we can be compassionate,

  2. Thank you for your openness about MS and sharing information on the debilitating symptoms. I simply can’t imagine.

  3. subtlekate says:

    I am very sorry to read this, but I love your attitude. You are the 2nd blog recently to have this bright possitive attitude towards MS. I’m a neurologist and have seen many do wonderfully with the same point of view.

    • My attitude is due alot to the supports around me. My husband is the most pragmatic person I know and it’s rubbed off over the years. We have an “it is what it is” attitude for the most part and a “suck it up, buttercup” attitude for the rest of it. There is always someone else worse off out there somewhere.

  4. Thank you for sharing this story. In my younger years, I worked with folks with MS in a clinical setting but could never quite understand what the symptoms were like. This was eye opening.
    On to you… your attitude is quite uplifting. I love it when people refuse to develop a self defeating attitude in the face of difficulties. Your positive outlook is contagious!

  5. Thank you – I hope it is.

  6. Lynne Ayers says:

    I’m looking at MS from a different perspective. My daughter was diagnosed last year at age 30. We all are still working to come to terms with it, trying to understand what it means for her. She had stopped running when symptoms first began at age 29, not knowing what was wrong, but on her diagnosis she returned to running and runs/walks 3-4 kms daily. She speaks of the pins and needles, and what she calls her ‘toe drag’. Over the last weeks her other foot has begun to bother her. It scares me so much that I can’t fix this for her; I’m her mother and I should be able to fix it. But I can’t. She has worked hard to keep an even keel, up beat attitude but I know she is scared of the unknown, as I am.

    • The unknown future is the worst part about it. It took a while, but I’ve mostly learned not to worry about what you can’t control. Take each new thing as it comes and hope for the best. Most of the time for me, it resolves. I’ve not had mobility issues, so have been lucky in that regard. I’ve also had about 16 years to get used to the things that happen. Now that I am in my 40’s, the symptoms are getting stronger and coming closer together, but life still manages to go on. I spent the first couple of years reading lots about the disease, I joined a support group and even attended a conference about it. And then I just accepted it and resumed life as normal. It works for me. Most of the time I can forget about it altogether and I often get so used to the symptoms that it takes me a few days to notice when they finally leave.

      It sounds like you are both working hard at it and with your support she will do well.

  7. Jennifer says:

    Thank you for sharing this. I felt I walked in someone else’s shoes for a minute. It was a real wake up call.

  8. Being strong willed and having an “I’m not giving up!!” can go a long way when faced with an illness. Also a strong support system is key to any battle. I’m happy to hear your family and friends support you. I have Rheumatoid Arthritis. Basically invisible to most everyone who knows me. I hide it well. Friends forget I have it. “But you don’t look sick.” My Love and family is very supportive. I thank God for them everyday. I hope you continue doing well. God bless you for sharing this post. Thank you =)

  9. Thank you for sharing! I have a dear friend that suffers from MS and is not as lucky as you are currently with her symptoms. She is a young mother of two and struggles daily. You are lucky to have a great support system, it is so very important in battling any illness or disease. Here’s hoping you continue come out victorious with your battle with MS!

  10. I also admire your attitude and am glad you have a loving, supportive family.

  11. introvertedblogger says:

    I too have MS. I’m one of the 1/20 who do. The love and support of my family is the best medicine I know of.

    • Are the stats really that high? I work in healthcare and we do have a lot of clients with MS, but didn’t know there could be that many of us ou there. Wow.

      • introvertedblogger says:

        I heard that just this morning on the radio. Horrifying isn’t it. Must be our modern lifestyle.

  12. I have MS also and can identify with many of your symptoms…not all though. I’ve had it for 20 years and after I went on disablity and retired, the stress factor was removed and it did not progress badly. . I can walk and for that I am grateful…not for long or very far…but I can walk. I am very thankful that as you, I have not had the worst that M.S. has to offer….

    I guess that I was confused that it was May that was MS awareness month..So much was going on for MS in our part of the provnce, I mistakenly was thinking it was April…so much for my ‘little gray cells’ …at least I can blame it on the MS…lol I did a blog in April on MS.

    • It might be different months in different places-I think the States has April too as their month. Either way, every month is MS month for us, eh?

    • Renee' says:

      what do you wanna be writing?

      • Years ago I thought someday I might write on what it was like growing up..in a stressful lifestyle..but more than that my mother..who with raising 10 children basically alone ..as my father was in name only…he shouldn’t have been a father at all…and wasn’t present in my life at all…also I would have included my own struggles with depression and other difficulties in my own life

        I realized I would never be able to write a book because my memory was not good enough to remember everything..but since I thought about ‘blogging’ I could fulfill the desire to write as thoughts or memories or past writings came to me. And so last November I finally did it….Thanks for asking….Diane

  13. Somer says:

    I really appreciate you sharing your battle with M.S. It’s hard to wait and hope for a cure. I have found success with battling my autoimmune disease by going completely plant based. I don’t know if it would help you or not, but it might be worth a shot.

    Here is my conversion story.
    http://goodcleanfood.wordpress.com/2012/02/19/sick-of-being-sick/
    I used to take up to 16 prescription pills a day and now take none. My quality of life has improved immensely.

  14. […] AsLightly Crunchy pointed out, May is MS Awareness Month. I perhaps should have known this but I and my family are still new to this. Our daughter/sister/niece/cousin/fiance was diagnosed a year ago. I wrote an essay, which I might share at some point, titled “A Helper, A Dreamer and a Radiant Beamer”. It is about my three daughters and Jamie is the Radiant Beamer, and Jamie has MS. We don’t know where this road will take us and unknowns make us fearful and we push them aside. […]

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