When I found this site a couple of years back, I had been struggling to learn about MS. As I've mentioned previously, I was diagnosed at age 70 when I self referred to a neurologist at a teaching hospital. In the several years that followed, no doctor took the time to explain what this diagnosis would mean for me, so I began to read on the internet (and believe me, there's a lot of scary misinformation out there). I didn't know anyone else with a diagnosis of MS, but several of my acquaintances would tell me that it didn't look like I had MS, or tell me of people they knew who had MS but were affected in life constraining ways, etc. The result was that I didn't understand at all that I could look normal (whatever that means), yet have a disease that affects me every single day in unpredictable ways, for the most part invisibly. Because I still lack a supportive medical care team to help me understand MS as it affects/afflicts me, and have heard some of these same people say such things as what do you expect, at your age, my confidence has been eroded, leaving me with deeply negative and hopeless feelings about myself.
You have changed all that. By sharing your ups and downs, your relapses and recoveries, your humiliations and your insights...in short, your knowledge of your selves (in all their diversity) and our common disease...you have become my teachers. I am very grateful for your honesty, your openness, your willingness to share. Thank you.
Written by
goatgal
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You're a bit part of what makes this forum work. Thank you for sharing openly about your struggles and victories, always with humility and humor. I so appreciate your positive attitude.
I'm also glad you stuck with the group. It takes time to build relationships, especially online relationships, so getting involved and staying involved makes it easier to take the pulse of a group and understand its members. We grow in compassion for one another and come to love one another like family.
Yes, goatgal, it is hard when you hear people portray you in a negative way like that. My own neurologist started out like that....he has now changed his mind, I think. I was explaining what my last relapse was like to a doc and the first question that doc (not my neurologist) asked was had I been drinking? I was so nonplussed I bet my face looked like the psychologist's when I was telling her of my background.
Just because we are older than dirt (you are not quite that old, yet!)...does not mean you don't have many more years of gardening ahead of you!. Age is a number, it is not a quality of life standard. Ignorance is an intellectual standard and open to interpretation. I will be 80 in October and I don't feel 80. However it is you are supposed to feel at that age I don't know. A particular age is not a standard for anything either as far as I know.
I remember my Aunt Sal, blind with macular degeneration and terribly painful shoulder joint, and worst of all,living alone, telling me she was 90 and saying, "While I may be older than dirt, I'm not compost yet!". I admired her so much!! Stubborn with grit!
Your aunt sounds like my grandmother. She was in her 90s still claiming to be 19. She said that retirement is for old people and she's not old yet. People were pestering her to retire. She was forced to retire when she started showing symptoms of dementia. She was working as a nurse.
Thank you for yours! I hate that the medical model is focused on placing people into boxes and dismissing those who don’t fit anywhere, but I do understand that sometimes there are no treatments to offer. I could be in your shoes and experiencing your difficulties at 70. I’m thankful you have been here to let us know about what MS has been for you. It’s one thing to get a drug or some rehab, but quite another to gleam the wisdom from standing on the shoulders of the ones who have struggled before you.
🙏🙏🙏 There’s no how to book on this MS life, but your chapter is every bit as important as the ones we are writing too. 🥰
Thanks for sharing your story. Too often so called "experienced" doctors plug us into convenient boxes so they don't have to actually work to figure out what's wrong with us. I haven't had your issue with the age yet but have gotten it a lot because I come with "girl parts".
Thanks for your openness goatgal . Most doctors don’t know what to do with us older feisty patients in general let alone when it comes to things like autoimmune diseases. It doesn’t help that clinical trials cap the upper age limit at 55 generally. Forums like this help fill that knowledge gap for me because of what people are willing to share.
Other people, without this disease, have NO idea what it's like. I don't look like I have anything wrong either but believe me, I do! I learned early on not to listen to most people.
Thank you for sharing your story, goatgal , and also for your years of contributing to our My MSAA Community so far, helping to make it work as greaterexp put it.
Thank you for sharing your story, goatgal 'ms' presents itself in so many ways. Wouldn't it be convenient if everyone who had 'ms' were displaying the exact same symptoms, at the same time, every time? The members in this forum discounts that each and every day. You are an inspiration to me, always.
I truely appreciate your honesty and willingness to be open about your feelings too. I really loved your post awhile back but I can't remember the topic of conversation. I know that YOU made an impact with me and your words helped me. I struggle with life and MS really changed how I live it. I'm trying to make a difference in helping others in anyway I'm able to. Blessings becky
Could not have said it better myself. Thank you, goat girl.
Had an interesting conversation with a CS rep. I explained I I was requesting some changes on my account and the reason why (my MS is creating some very difficult to pay bills). She says, "You have MS?" She then said she had a young man friend who has recently been dx'd with it and he feels just slammed. I recommended that he might like HealthUnlocked as the people on here are universally pleasant, their comments are absolutuely dead-on and very honest, straight forward and what they have been discussing is very helpful. She wanted to know if only older people commented, I said no and that many of them have kids. I did say it is difficult to balance a normal life with MS but with the new drugs, DMTs, and a loving partner or other support it is possible. [I justify that statement because I am pretty normal except when I am relapsing or having a problem with a drug!] I hope we hear from him. I know we will make him welcome.
with everyone's laughs and great help on this site makes it something wonderful to read every time i get on here ...we all like to laugh and smiles that help us so much ....love and happiness is some of the best medicine that there is ...have a wonderful fun day in what ever you decide to do for yourself....
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