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What is (or was) your biggest fear upon diagnosis?
Hi there,
We all have so many varied experiences, thought it would be good to ask what was your biggest fear when you heard you had MS? Or, one of the infamous mimics? And, I don't want to exclude our limbolanders -- you are a huge part of our family here. This is for you too! I hope this helps you too. If even small, there had to be something you were scared of. If you feel comfortable, spill it! It's a good way for us all to get to know one another a little more.
My fear was that the Drs were wrong. As far as I was concerned, I definitely had a stroke. I wasn't afraid to have MS, just didn't believe they were right. Heck, I knew nothing about MS. And, I was smack in the middle of my 1st attack. I was definitely scared (though I'd never have admitted it to anyone then) each day waking up to what I lost most, which was the ability to think and react all at the same time - it was chewing, driving, looking, reaching, writing, listening and responding to people, etc. Whole nother meaning to walking and chewing gum at the same time, haha
Seriously though, what got you going?
-Shell
We all have so many varied experiences, thought it would be good to ask what was your biggest fear when you heard you had MS? Or, one of the infamous mimics? And, I don't want to exclude our limbolanders -- you are a huge part of our family here. This is for you too! I hope this helps you too. If even small, there had to be something you were scared of. If you feel comfortable, spill it! It's a good way for us all to get to know one another a little more.
My fear was that the Drs were wrong. As far as I was concerned, I definitely had a stroke. I wasn't afraid to have MS, just didn't believe they were right. Heck, I knew nothing about MS. And, I was smack in the middle of my 1st attack. I was definitely scared (though I'd never have admitted it to anyone then) each day waking up to what I lost most, which was the ability to think and react all at the same time - it was chewing, driving, looking, reaching, writing, listening and responding to people, etc. Whole nother meaning to walking and chewing gum at the same time, haha
Seriously though, what got you going?
-Shell
I would have to say my biggest fear is death from the MS affecting my breathing, where I develop pneumonia and can't cough. I want to live to be old and see my kids have kids etc.
My walking and balance was the first real symptom that started last year. Its never gotten better. Not necessarily worse either..I worry that since I already have these issues and cannot work anymore due to balance, how is it going to be in 5 yrs?
Of course, I constantly think about the possibility of being in a wheelchair and putting extra stress on my family. My dad has had MS for almost 30 yrs. He is in a chair and can only walk a few steps at a time.
The list goes on for me. Some days I feel ok with things and try to accept what is, and other days I feel trapped in this body and that its just one big nightmare I am waiting to wake up from.
Kristi
My walking and balance was the first real symptom that started last year. Its never gotten better. Not necessarily worse either..I worry that since I already have these issues and cannot work anymore due to balance, how is it going to be in 5 yrs?
Of course, I constantly think about the possibility of being in a wheelchair and putting extra stress on my family. My dad has had MS for almost 30 yrs. He is in a chair and can only walk a few steps at a time.
The list goes on for me. Some days I feel ok with things and try to accept what is, and other days I feel trapped in this body and that its just one big nightmare I am waiting to wake up from.
Kristi
Aside from my fears which I have stated on here ( that "they" are wrong and I'm dying of something sordid), my second biggest fear is "how will I do this on my own"?
Like Shell, I was- still am half the time- convinced I'm having a stroke or something. You'd think I'd know better after 3 years of the same thing.
My BIGGEST one though is losing the ability to swallow. I told the kids, if that happens, shove some mega-drugs down my feeding tube and let me go,. I have no desire to end up being tube-fed.
I come from a long line of paranoid worriers. My father was an obsessive worrier. I hate that I cannot calm down, and feel so overwhelmed. As Quix says, that fear and worry in itself can manifest in neurological symptoms. I know this to be true for myself because so many times when a relapse was starting and I thought I was having a stroke, I'd call an ambulance in my terror, and the symptoms would subside just a bit when I was safely in the ambulance, which made me realise that SOME of the problem was anxiety brought on by fear when a relapse starts. of course not all of it, but the haad spinning thing mostly.
I saw my GP today and asked about the vasculitis (my latest horror). He wasn't sure but said my neuro is one of the best in the entire region so have some faith.
Oh, I get afraid that I will collapse when out in public. the longer I am out shopping, and sometimes it happens after maybe 5 minutes, the more unsteady I become, the more disorientated I feel, my balance becomes atrocious, and I think I will collapse. I worry then that they will cart me off in an ambulance and shove vile drugs into my veins and I'll have a bad reaction (which I have done with so many drugs, hence my fear - yes another one - of drugs) and it'll all be awful.
I worry that my son, who is 13, and lives only with me, will come home and find his mother dead on the floor, from whatever disease I think the neuro has misdiagnosed this week.
I worry that I really WILL have a stroke, and that when the hospital sees me, they'll say, oh it's just her MS, and ignore the stroke.
I am ranting. Good thread, let it all out!
And yes, I too noticed the 'fear" theme happening lately. I contributed to the horror of it all.
Maybe one of the worst things is that we are no longer in control of our own destinies?
I'll shut up now. Thanks for starting this....
Jemm
Like Shell, I was- still am half the time- convinced I'm having a stroke or something. You'd think I'd know better after 3 years of the same thing.
My BIGGEST one though is losing the ability to swallow. I told the kids, if that happens, shove some mega-drugs down my feeding tube and let me go,. I have no desire to end up being tube-fed.
I come from a long line of paranoid worriers. My father was an obsessive worrier. I hate that I cannot calm down, and feel so overwhelmed. As Quix says, that fear and worry in itself can manifest in neurological symptoms. I know this to be true for myself because so many times when a relapse was starting and I thought I was having a stroke, I'd call an ambulance in my terror, and the symptoms would subside just a bit when I was safely in the ambulance, which made me realise that SOME of the problem was anxiety brought on by fear when a relapse starts. of course not all of it, but the haad spinning thing mostly.
I saw my GP today and asked about the vasculitis (my latest horror). He wasn't sure but said my neuro is one of the best in the entire region so have some faith.
Oh, I get afraid that I will collapse when out in public. the longer I am out shopping, and sometimes it happens after maybe 5 minutes, the more unsteady I become, the more disorientated I feel, my balance becomes atrocious, and I think I will collapse. I worry then that they will cart me off in an ambulance and shove vile drugs into my veins and I'll have a bad reaction (which I have done with so many drugs, hence my fear - yes another one - of drugs) and it'll all be awful.
I worry that my son, who is 13, and lives only with me, will come home and find his mother dead on the floor, from whatever disease I think the neuro has misdiagnosed this week.
I worry that I really WILL have a stroke, and that when the hospital sees me, they'll say, oh it's just her MS, and ignore the stroke.
I am ranting. Good thread, let it all out!
And yes, I too noticed the 'fear" theme happening lately. I contributed to the horror of it all.
Maybe one of the worst things is that we are no longer in control of our own destinies?
I'll shut up now. Thanks for starting this....
Jemm
Jemm-
You took the words out of my mouth. The swallowing thing, just basically existing with a breathing or feeding tube is a huge fear for me.
I have wanted to express my fears recently. I read a tabloid talking about Annette Funiccelo (actress from the Mickey Mouse Club) that she had died from complications to her MS.
This news settled in my brain and I couldn't let the anxiety go. It weighed on me for days.
Anyway- thanks for this thread!
Kristi
You took the words out of my mouth. The swallowing thing, just basically existing with a breathing or feeding tube is a huge fear for me.
I have wanted to express my fears recently. I read a tabloid talking about Annette Funiccelo (actress from the Mickey Mouse Club) that she had died from complications to her MS.
This news settled in my brain and I couldn't let the anxiety go. It weighed on me for days.
Anyway- thanks for this thread!
Kristi
Ok so I am a Limbolander sort of dx with RSD by a general medical consultant but the neuro has poo poo'd this but can't say what it is. But my first thought after seeing my GP about my Symptoms he asked me if I thought I had a Brain Tumor this hadn't crossed my mind until he meantioned it and when he refferred to the neuro, it was obvious the neuro was concerned about something. (I have had 2 cousins that have had brain tumors)
Fears
1. Could my family survive financial with out me working or even dying. And was the business I run in a state for some one to just take over or if it had to shut would that drain my family finances After much worry I had a plan of action in my mind. ( the kids have nearly finished there education, we could easily down size the house etc...) Some time later I found an insurance policy my DH pays for through work, a large sum is paid if either of us kick the bucket! And there's a pretty neat sum if I am Dx with MS. So I should never have worried in the first place. Incidently I had pre signed cheques for the business, should I not have been able to do so.
Having been told NO tumor but there is a lesion and MS was meationed for first time lots of tests ordered.
2. My DH not being able to look after me. He has little patience, can't stand watching children eat. We even laughed together over the fact I would starve! He often makes, dare I say it, rude comments about people with "sympathy crutches" in his defense his line work deals with people claiming benefit they are not intitled to, he also has a sister who has never worked a day in her adult life because she's not well - NOT. I pointed out this was his punishment for all those rude comments he's made!
He's doing ok at being the carer at the moment but I can feed myself still!
2. Incontence, wheelchair, loss of independence.
When dx with RSD all the above are still there but as I don't fit the norm for RSD and my neuro says it's not RSD :-
3.They have missed something. (I have abosultely no faith in the hospital, this is because my father was having brething difficultes, he was sent there for an x-ray they reported to his GP that it was fine, 4 weeks later he was at the same hopital for a routine outpatients appointment nothing to do with the breathing. A senior nurse noticed how he was struggling to breath kept him in hospital re did the X-ray along with other tests. he had a tumor so big they could not tell if it was in his liver or lung to start with. infact it was both. They gave him 6 months to live. On this occassion they were right.) so no faith.
The neuro still keeping a check to see what happens so thats good. When I see him next I'm pushing for a 3t MRI at a different hospital.
Fears
1. Could my family survive financial with out me working or even dying. And was the business I run in a state for some one to just take over or if it had to shut would that drain my family finances After much worry I had a plan of action in my mind. ( the kids have nearly finished there education, we could easily down size the house etc...) Some time later I found an insurance policy my DH pays for through work, a large sum is paid if either of us kick the bucket! And there's a pretty neat sum if I am Dx with MS. So I should never have worried in the first place. Incidently I had pre signed cheques for the business, should I not have been able to do so.
Having been told NO tumor but there is a lesion and MS was meationed for first time lots of tests ordered.
2. My DH not being able to look after me. He has little patience, can't stand watching children eat. We even laughed together over the fact I would starve! He often makes, dare I say it, rude comments about people with "sympathy crutches" in his defense his line work deals with people claiming benefit they are not intitled to, he also has a sister who has never worked a day in her adult life because she's not well - NOT. I pointed out this was his punishment for all those rude comments he's made!
He's doing ok at being the carer at the moment but I can feed myself still!
2. Incontence, wheelchair, loss of independence.
When dx with RSD all the above are still there but as I don't fit the norm for RSD and my neuro says it's not RSD :-
3.They have missed something. (I have abosultely no faith in the hospital, this is because my father was having brething difficultes, he was sent there for an x-ray they reported to his GP that it was fine, 4 weeks later he was at the same hopital for a routine outpatients appointment nothing to do with the breathing. A senior nurse noticed how he was struggling to breath kept him in hospital re did the X-ray along with other tests. he had a tumor so big they could not tell if it was in his liver or lung to start with. infact it was both. They gave him 6 months to live. On this occassion they were right.) so no faith.
The neuro still keeping a check to see what happens so thats good. When I see him next I'm pushing for a 3t MRI at a different hospital.
I am rather like Dennis. I can't say I have any big fears about MS.
Maybe it's because I'm one of the oldest here, but I've seen and lived a lot of life, and hope I've gotten wiser in the process. I've learned that the vast majority of what gets worried about never happens. I've learned that there are far worse things than physical disability, having lived through some myself.
The biggest thing I've learned is that worry and fear only serve to corrupt today. I don't want to ruin what might be a pleasant and useful time by projecting a lot of fears about the unknown. What is going to happen will happen. Why have that experience twice---once by our fear of it, and once by the reality?
A thousand years or so ago, when I was in eigth or ninth grade, we read Julius Caesar. Old Shakespeare had it right: 'The valiant never taste of death but once.'
ess
Maybe it's because I'm one of the oldest here, but I've seen and lived a lot of life, and hope I've gotten wiser in the process. I've learned that the vast majority of what gets worried about never happens. I've learned that there are far worse things than physical disability, having lived through some myself.
The biggest thing I've learned is that worry and fear only serve to corrupt today. I don't want to ruin what might be a pleasant and useful time by projecting a lot of fears about the unknown. What is going to happen will happen. Why have that experience twice---once by our fear of it, and once by the reality?
A thousand years or so ago, when I was in eigth or ninth grade, we read Julius Caesar. Old Shakespeare had it right: 'The valiant never taste of death but once.'
ess
I think mine is all of the above:
I am the main breadwinner in the house earning 4 times the salary my DH does - bless him for all his hard work!
So workwise it was losing my job and having to live on benefits, then not losing my job and having to keep working when it is so obviously making me worse.
Like Lulu I came very late to a career after being married to a pyscho for a number of years (no not an exaggeration and actual dx- ask me sometime about it) I married my wonderful better half and he packed me back of to finish my education. So I have only been contributing to retirement for some 14 years.
I get scared of losing my independence more than anything else and needing my DH to turn into a total carer instead of a lover.
Most of all I fear this bitterness I still feel will follow me all my life and I will never stay cheerful whilst facing all this as others seem to.
I know you are right ess but it is sooooo hard, when my days are filled with sitting in an office doing stuff that I used to love and now resent as it seems so trivail and it takes the little energy I do have to enjoy life. Work/life balance with half a cake eh?
Pat
I am the main breadwinner in the house earning 4 times the salary my DH does - bless him for all his hard work!
So workwise it was losing my job and having to live on benefits, then not losing my job and having to keep working when it is so obviously making me worse.
Like Lulu I came very late to a career after being married to a pyscho for a number of years (no not an exaggeration and actual dx- ask me sometime about it) I married my wonderful better half and he packed me back of to finish my education. So I have only been contributing to retirement for some 14 years.
I get scared of losing my independence more than anything else and needing my DH to turn into a total carer instead of a lover.
Most of all I fear this bitterness I still feel will follow me all my life and I will never stay cheerful whilst facing all this as others seem to.
I know you are right ess but it is sooooo hard, when my days are filled with sitting in an office doing stuff that I used to love and now resent as it seems so trivail and it takes the little energy I do have to enjoy life. Work/life balance with half a cake eh?
Pat
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