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Ataxia Support Network

I'm not doing so good


#1

Mentally I feel drained. I’m trying to be positive for the people around me but its exhausting…anyway recently I have been mulling over the thought if this condition I have is just in my head( I have SCA7) . That maybe I’m just disabled because I think i am? Please if anyone wants to weigh in feel free.


#2

Dolo, I know it is hard, I’ve been diagnosed with sca2 in November 2017. Now my bro is showing the signs as well…much less than me…my whole balance is gone…
Look at it this way, there are people with incurable cancers, counting days they have left…Shyte happens. Just take it on your chin and count yourself lucky to be here…they would swap with you, if they COULD…


#3

From experience, I know just how easy it is for individuals to stand on the outside and making judgements, but being the person with the condition, with an invisible disability, is a battle everyday. It is something that those on the outside will never fully comprehend until they are on the opposite side. When I was a child it was simply labelled hypochondria " we can’t SEE anything wrong…" In basic terms back then their tests weren’t so refined, so my condition was dismissed. So I ignored symptoms.
Now, years later they know the reality of it all, can do their tests and prove it. I now get asked why I didn’t do anything about it earlier if I knew. I tried but I was discredited and back then nobody ever questioned a dr, they knew it all (or so it was thought). I now, look at it this way “Others want to judge, fine, you do so. But on one condition: You come a spend a day, one single day, in my shoes. Then judge because until you have to manage like this, you have no idea”. Nobody, and I mean NOBODY would want to be in our position by choice.

Merl from Moderator Support


#4

Thank you so much for replying. I put mysepf through every kind of test just so i can have some proof to show the world that yes there is something wrong with me. That just because what I have is technically a brain disease its still real. It’s just hard sometimes. I hated that word “hypochondriac” growing up. It was so easy for everyone to dismiss my problems. It’s no wonder that now im having such trouble grasping the fact that i have a disease.


#5

Thank you so much for replying and sharing. It’s just I know and see( as best I can) that there are people a lot worse off than me. It’s easy to downgrade what I have and have others judge. I’m so tired of having to show proof. Who would lie about this? I am also worried about my siblings showing symptoms. Unlike me they actually have a life.


#7

Who is insisting on proof? Are they worth it? No one would choose ataxia and the symptoms are very real and life-affecting no matter what anyone would like to believe.


#8

The one friend I do have has asked for proof. His doubts are making me doubt.


#9

I too had issues “…having such trouble grasping the fact that i have a disease…”
My mother is VERY Catholic. Guilt and Catholicism go hand in hand and I don’t need to be adding to her guilt, but in saying that I do have some (hidden) animosity about their reliance on the dr’s when in hindsight it was pretty damn obvious there were issues going all the way back. I now live in different country to my whole family so they (nor I) don’t have to deal with any of that. My condition is also brain related and I can just hear all the snide comments, so it’s just easier not to go there. I too have been queried ad nauseam but as I’ve had a few neurosurgeries I just remove my hat and they can see, which usually shuts people up. I am my own worst critic, there is no judgement ANYBODY can make that is as harsh as I am on self. IMO I don’t need to prove anything to anyone. I have to manage this for me, not them.

Merl from Moderator Support


#10

:smirk: My exact ‘condition’ is still in question. Overall, I’ve become more disabled over the last 20yrs. Not one member of my family has ever sat down with me and shown any interest… I suspect they’ve now just become used to me being lethargic, apathetic and coping with ‘non-sensical’ symptoms. When I had Cancer, there was an unspoken acknowledgement. Someone took me for chemo etc but no-one actually took the time to let me talk about it. Talking is good therapy. Otherwise thoughts can go round in a vicious circle. Overthinking is being self destructive, take it from one who knows :smirk: xB


#11

That’s interesting Beryl and I believe very common. Family don’t acknowledge or take the medical fraternity’s opinion, which often has a heavy bias but then when a diagnosis is made there is still no acknowledgment. I know in my case acknowledgement of my reality would have meant acknowledging how wrong they initially were. I had a visit from a family member who had the BIGGEST opinion of them all and I tore them a new one and it was said “…well, don’t blame me, blame the dr’s…”. There was no responsibility taken whatsoever and yet their opinion was the loudest and most influential at the time. I think the old adage of ‘it’s easier to point out faults in others than to look at ones own faults’ is very fitting. “He has a problem” rather than “Is my judgement fair?”
I could not agree more with your statement regarding talking about things. Getting the conversation out of me was paramount. If I didn’t have the answers then, repeating the same questions over and over simply leads to a meltdown. Very destructive.
Merl from Moderator Support


#12

There is no reason to doubt. Your symptoms are very real no matter what anyone else thinks. We did not choose the symptoms, we got a lousy deal. After all,who would choose to fall down, choke, drop everything, see funny,talk funny and be incontinent. I think that denying our problems is just a way for other people to believe they will never face those problems. The problem is with the “friend”. You have enough to deal with.


#13

I have had those same thoughts, “is this in my head?” “Maybe I am lazy…or depressed…” Drove myself crazy! Then I took an online neuroscience class and in the lecture on the cerebellum the instructor explained that the cerebellum is an enigma, we don’t fully understand… But, he said, we have reports that although people with cerebellar disease/injury seem okay externally, they feel that things are harder. There is a profound change in their relationship with the environment and it affects all aspects of community living. He also said, “The cerebellum’s function SEEMS to be of “agility” both of physical agility and of mental agility.” And there was more, but this part helped me.
It helped me to be kinder to and more patient with myself. I have a disease that most the time people don’t notice, but I do feel like every aspect of my life has been affected. I can be kind and compassionate to myself and surround myself with people who accept me, the way I am. I mean, even neuroscientist are still baffled by the cerebellum!


#14

Remember the old advice when making a speech in front of a large audience? A lot of people are very “nervous” in advance and feel that they cannot do it. So the advice is given [tongue-in-cheek] that you should “see” the audience naked so as to make you feel more at ease.

Point being as to us is that many folks also have invisible problems although they appear normal. Albeit physical or mental, all you need to do is speak to others and you’ll see what I mean. I belong to a gym and either hear or see my surroundings.

I keep this in mind and it has helped me greatly to accept my problems.


#15

Interesting. Thanks for sharing if i am being really honest I have noticed my thinking and rationalizing slowing a bit. It’s scary because this isn’t my bread and butter but i like my brain ( more or less). Outside of that one friend that moved away to join the military now i have no one. It feels like I will die alone. Socially this disease opened one door and closed another…anyway thanks again


#16

I agree that this illness is felt within but if we keep our feelings only internalized then we can explode. I would like to think that you have more than one friend that you could talk to. It’s not a good idea to personally continuously vent to your friends because that gets old fast. If you just be yourself with anyone, then they can just accept you as you are.

On the other hand, if you feel that you have no one to vent to, it might be a good idea to seek out a mental health professional to speak to. If it’s a monetary thing, I do believe there are free clinics that you can search out. Plus it will keep your mind from dwelling on your physical being. Of course, you can always come here because we DO understand.


#17

Unfortunately this disease is all i think about. I’m in a constant state of sadness. If I had this when I was a kid I would be able to deal with it better by now. But I was diagnosed just a couple years ago. And from then until now I have lost pretty much every friend i ever had. I did it to myself not wanting anyone to pity me I shut everyone out. Now I’m lonely but given the chance I would probably do it again. I can’t tell you how much I hate people feeling sorry for me.


#18

My first question would be is how old are you. I developed this illness when I was 21 and just starting my adult life. I am now almost 72. I’ve learned a lot over the years and the absolute worst thing one can do is to dwell on their problems. If you look you will find my introductory post. Read it please. In fact, read my other posts. I give some thoughts that I learned over the years.


#19

Ok I will and I was diagnosed with SCA7 at 21/22 but now I am turning 27.


#20

PLEASE! You have a long life in front of you. No one wanted this thing but it is what it is. As Nike used to say, “Just do it.” It’s very important to partake in what life offers you as best as you can. “Hiding out” is not the answer. Most folks out there will be more than willing to help you and make sacrifices.


#21

Seems like just because I’m younger I’m not allowed to feel bad. I can’t just do it thats the point.