Needing help after giving it all out

As a physician, I have worked my whole life to make other people’s quality of life somewhat better. My goal has always been on prevention, education, empathic support for all the patients that have crossed my path during the last 24 yrs.
I have been diagnosed since 2005 and right now it is becoming very difficult for me to keep up with my practice , due to chronic pain, leg weakness, speech difficulties and severe fatigue.
I have always been very active, crafty, and feisty, and more than needed I push myself to do some big chores just in case I loose my entire mobility and can no longer do those things I so much love.
I do have the same problems every one else so often describes of not being fully understood by those you expect the most support from. My husband is not in the medical field, and even though I provide him with all the updated information about this illness, questioning why some days you can do some things and somehow not so in others, hurts just like the worst of my physical pains.
Pain is very subjective and difficult to explain, but just because it cant be seen it does not mean is not there. It is overwhelming to constantly try to push away thoughts of pain, frustration, sadness.
Symptoms are understood the day your MRI comes out or the day you come home with a terrible bone scan, compressed spinal cord, multiple infiltrations or nerve blocks, but after a few days its all forgotten once they see you up and about again.
I truly hate it when someone suggests not to think about the pain or even do something to take my mind off it. Would you sing, paint, laugh, or just enjoy yourself if someone was crushing both your feet? Do you happily sing, laugh or distract yourself when your bladder is ready to explode? No! there is nothing else you could think about until you get rid of that terrible urge. Well, same goes for chronic pain or fatigue. Sometimes it is difficult to take it off your mind! And even if it goes away for a little while and you seem to be having a wonderful moment, you know it is all comming back very soon and sometimes with a vengance!
See! Now I’m the one who needs help, both physically and emotionally. Some days, I’m so drained, I just get tired of being expected to come out of this just because I am a doctor, and doctors are not supposed to get sick!
Hope through this and all other means, we are able to create awareness and provide more insight unto all the emotional struggles than run parallel to the physical struggles of MS.
We dont need Much Sympathy, but Much Support!

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Comments

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  • 1d0pu26 Jill Mcentire
    4 years ago

    I feel the same about support needed from friends and family members as well. Needed from the communuties we live as well! I was diagnosed in 1983 with leftside blindness. Optic neuritis was the dx. After a miscarriage, I had a lumbar puncture then the dx. I graduated from university then worked. Could not go to graduate school in my field, so I have worked in other areas. I wanted to become a Speech Language Pathologist. I later became pregnant again and homeschooled my daughter due to her own anxieties and she is in her twenties now. I to took Avonex for 17years. Now husband has retired and I had to buy medical coverage. Thankfully my husband pays for that, but the coverage is sorely lacking in the Neurological care. Not at all what I had in the past. Even though I have days that I sometimes when I speak in ways that sound like word salad, I can get my point accross. After thirty years of dealing with life with ms and other life problems, I am glad that I still have the want to keep going!

  • Laura Kolaczkowski
    4 years ago

    One of my first online MS friends is a pediatrician who stopped seeing patients when she had a moment of indecision in treating a critically ill infant – she was wise and recognized the problem that no one else could see since she was the one expected to always be well and there for her patients. I think those of you in the medical field who have MS – there seems to be a lot of nurses, too – have an additional burden because you are healers and aren’t seen as vulnerable to disease. Thank you for sharing your story here – I know there are many medical providers who will relate to what you have written. And I love Much Support! best, Laura

  • Laura Kolaczkowski
    4 years ago

    I remembered after I posted this that I wrote about my friend and others such as you in an article last year – http://multiplesclerosis.net/living-with-ms/ms-indentity-theft/

  • Gordy
    4 years ago

    A voice from the medical profession is good to hear ( although it is sad to hear of another sufferer)- my own GP completely missed my MS symptoms,and it was only my own urge to visit an osteopath (worried about my spine after two years of using a walking stick)that led to a neurologist referral and final diagnosis. I heartily agree with you on the lack of knowledge ; partly I feel, because the symptoms are different for everyone – when I broke the news to immediate family, the response was that old mrs ‘so and so’ (substitute name of vague relative) had MS for 30 years and was generally ok. When you’re in deep pain on a daily basis this is no real comfort !
    Lack of knowledge is the problem – and the fact that symptoms and severity differ so much. I have PPMS, and just explaining the four basic variations is often a challenge!
    Anyway, your post is spot on, and eloquently expresses the frustrations of a sufferer. I hope that you rise above this horribly limiting condition, and thank you!

  • Sharon B
    4 years ago

    Thank you so very much for this article. It is so spot on and it helps to know others have the same issues and reactions from family and friends. “But you look so good” or “you don’t seem to be affected by your MS” are two phases I hear and I don’t know how to tell people that they have no idea and if they saw the prescription meds and supplements I take they would be blown away.

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