@Gemspirit wrote:
I was dx'd about 8 years ago after years of trying to get docs and my family to listen to me. I'm an RN with over 30 yrs. experience and just new something more than.....getting older, fibro, arthritis or a couple bad ortho injuries was at play.
At first they told me RR type...with optic neuritis and peripheral neuropathy. Then later was told PP type. That the fribromyalgia I was dx'd with many years earlier was probably the start of a more progressed MS. I also have Chrons which is autoimmune.
To the OP~My exercise of choice although I haven't been in months due to issues with the Crohns, is swimming. If you can find an indoor pool and better yet one with a therapy pool; it's a fantastic form of exercise. And believe me you can get quite a workout using the water weights and other exercises for swim therapy.
@ SIDSMOM~Thanks for the nutritional info. I will definitely look at the resources you gave! Right now my diet is vegetarian and mostly Greek yogurt, fruit, protein shakes and bars. Some fish if I'm able to. But with the meds they have me on, I'm never really hungry!
@Cator~I have always had a heat issue. It's quite embarrassing at times, depending on the people you're around and the occasion. People think they are being helpful by pointing it out to me...as if I'm not already sensitive to it!
I'm m glad to have found this thread. MS is such an isolating disease. Knowing there are others here to talk to means a lot to me. Im not one for support groups but do see a counselor from time to time. It's a constant battle. 💛
I disagree that it is an isolating disease. When I was first diagnosed, I listened to every know-it-all and attended a support group, curled up in a bundle and saw therapists, considered suicide.
Then I returned to my religion, quit all that whining, took charge of my life, prayed about my place in life, took at the methylprednisolone offered, sought the guidance through the MS society and NIH, started on beta intereron before it was even considered by insurance companies a treatment, got a second mortgage on my house to pay for it.
Subsequently, with God's help and the help of those who now wanted to help meonce I quit complaining and started looking forward, I was walking with a walker, which then extended to a cane, and now I walk unassisted in most situations.
Two years later, I started growing roses and came to grow about 500 which I tended with the help of my husband and a delightful gardener. I traveled extensively because I feared the day would come when all travel would be limited.
I became president of my local rose society, I wrote articles for ARS and the heritage rose foundation, joined an international OGR society of which I am still a member and though today I am unable to care for my roses due to the osteoporosis and spinal stenosis, I still am active.
I belong to several community civic and social groups, teach Sunday School and try to visit shut-ins, hospital and nursing home patients, do inspirational speaking, and I see how very fortunate I am to have MS which can be controlled (altho9ugh it cannot be cured), to have spinal stenosis which is heped by pushing shopping carts, to have treatment of drugs such as Reclast for osteoporosis and many various treatments for asthma although I still have many nights of difficulty breathing, and I am thankful because there are more people out there with far worse maladies. It could be that I die in my sleep of asthma or pulmonary edema, a heart attack, or I could have an MVA which would render me mindless and/or paralyzed, It could be that a footdrop could return tonight, that I might develop such disabling paralsysis that I might not be able to walk tomorrow, that my urine and fecal incontinence become disabling once again, that I have peripheral neuropathy to the point of needing toe or foot removal, but for today, I live with the residual of optic neuritis, the daily of asthma inhalers, some slight incontinence of both bowel and urine for which I use pads and Depends, the occasional need to use a cane and rare use of pain medicines but I am so blessed to say that my condition is not isolating. Praise God Almighty that I have seen what is really isolating, what is really disabling to the point of wheelchair and bedridden, that I am still able to write, to read and hear and to share the place I was 20-25 years ago to the place I am now and there is no comparison. Just because you have MS does not mean you have to check out of life, be thankful there is treatment for it now. There was a time when there was not and there was a time when doctors considered it a mental disease and did not even recognize it as medical. Give thanks, get up and give yourself a pat on the back for recognizing you still have a lot of living to do.
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