I remember this well. I spent the majority of my childhood UNDIAGNOSED. The pain and fatigue where things I felt I didn’t even have the right to complain about because, well, I had No Label to Defend it. And it took until the age of 16 to get even somewhat of a label: Joint Hypermobility Syndrome with Soft Tissue pain. That ‘soft tissue pain’ was a nod the specialist gave to the fact I was presenting with fibromyalgia symptoms, but too young, so clearly on my way to developing it. And so it would be at 20 I was diagnosed with Fibromyalgia. And shortly thereafter Migraine with Aura, which soon became Chronic migraine. And, hell, then the diagnosis just Pile on there. And you’re like Enough already. Jeez. I’m not collecting them. I’m not looking for a full house. There is no prize for Most Illnesses. We can stop now.
Anyway, when I was younger it sort of had these elements:
- Embarrassment- because I was chronically ill but had no label to put to it so I felt like it was me and it was embarrassing to talk about it.
- Like a hypochondriac- Was I just Complaining? Maybe it was normal? Or something? How could I know? Sure felt bad… but how bad was bad?
- Like I had no right to complain- without a label to assign to it I would brush it off as ‘just tired’ or ‘oh I have insomnia’ or ‘I don’t like sports’ or ‘I think I might have caught a cold or something’… or any number of things to brush off the crapola I felt as something normal.
- Isolated- Obviously you feel isolated by it. You have no idea what IT is. And you have no one to talk to about it. And this, by the way, was pre-Facebook days… so no support groups even. I mean, even by the time I got diagnosed the internet was a sparse thing. Not as robust as it is now. And you cannot do all the things your peers do which makes you more isolated and a little sad really. You tell yourself you don’t want to… but you do. Even introverts want to have some fun.
- Frustrated- Like I would never get answers and tests would never figure it out.
But once again: Undiagnosed Vestibular disorder
Being undiagnosed is limbo. You have tests and more tests. And specialists and more specialists. And more tests. But when you are already chronically ill you do not get the tangle of feelings you get the first time around. Because been there done that. And because you Got Labels. It is just more… frustrating.
My MRI showed a lot of Lesions… MS? Maybe. Maybe not. Presents that way brain-wise. It doesn’t physically so much other than existing overlapping symptoms. So… Limbo until I indicate one way or the other that I have it or I do not. And I do not like that at all. Just wait. And eventually, we will know. And yeah if you do that means delaying treatment by quite some time and that sucks… but these things take time. Yes, these things take time.
My vestibular test, the VNG, also abnormal. In a peculiar way so I have to do it again. What does that mean? Could be the test messed up. Or it could be something they can’t actually even explain. Wouldn’t that just be fun? No. Not at all. More tests. More limbo. More confusion.
And if the vestibular test is fine and it isn’t MS… maybe vestibular migraine? Although, it doesn’t present like my vestibular migraine. And I got it On my vestibular migraine preventative that actually worked. So that is odd.
So then what? Yes, these things take time. Sigh.
I do not like it when I am in undiagnosed limbo
I have spent more than two years now dealing with these vestibular symptoms. And I am not fond of it. At all. And I am certainly not fond of my new very restrictive limitations. Or the fact I cannot be an avid reader anymore. Or that my cognitive dysfunction like brain fog is now like Super Brain fog or completely Zoned Out. Or I can’t walk far or stand long. That I fall into things all the time. And that is with the medication I have which isn’t exactly for long-term use. Without the medication… I am pretty useless.
So I do not like the limitations. And I am losing patience.
And without a diagnosis, you can’t Make a Plan of action.
You can’t get treatment or therapy or find alternative things to do. You have no idea what you are even looking at let alone what could Help it. You just have to get through. Tolerate it. Endure it.
You have no idea if this is one of those conditions that Has treatment options or one of those ones that really doesn’t. And coping with the fact if there are little to no treatment options.
Without a diagnosis, I do not know if this is temporary or forever sort of condition
I don’t know if I just have to get through for a certain amount of time and then these vestibular issues will go away.
Or if I am stuck like this and I have to ensure I cope and deal with that fact- which will be difficult. Hard to do when you have no idea if that is true or not- and one doesn’t want to assume because that is pessimistic really. Not every condition is chronic. (clearly, I have had this issue over 2 years and that would classify it as ‘chronic’ but still, some vertigo conditions do not last LONG and can poof out literally at any time… not like decades chronic chronic chronic if you know what I mean.)
Therefore, it is hard to cope with the emotional reactions and results of an actual diagnosis or prepare for that
You’re just it getting by mode. Not really adapting and coping mode. And there is always some sort of emotional fallout from a diagnosis that sucks… not so much if this is temporary (that would be more a happy jig sort of situation). But you cannot prepare for it because you literally have no clue what the hell is actually going on… at all. Even in the realm of what is going on. Like for me, I don’t know if it is my ear, my brain, both, something else with a symptom of vestibular issues… who even knows? The possibilities are too much to fathom… and therefore too much to pre-cope with. I can’t go well it is Likely A or B and then wrap my head around both of those possibilities. It could be damn near anything. And duration could be anything. And severity could be worse or get better over time. And that Unknown means I am in limbo for coping with it. I simply am enduring the effects of it. I am moderately suppressing the symptoms with a temporary medication. I am coping as best I can with the limitations.
Yes, I have adapted. I am using a cane. I am trying to get used to the limitations… like being unable to do much in a day or do anything for too long a duration. And knowing I need WAY more rest than one would ever think humanly possible, which makes my fibromyalgia worse (it does not like that much immobility). I struggle to do basic things I like to do for small gaps in the day, and rest, and then another short burst, and rest. (This post has taken me not only all day in short bursts but I started it on another day of short bursts… so a lot of time goes into something that my ‘normal’ chronically ill self wouldn’t have taken that much time at (with pacing fatigue and pain, which I was getting skilled at… as long as I was not working anyway). Pacing doesn’t work so well when you are super fatigued from minute activities. And super dizzy. And cannot focus for moderate durations… only short durations. So I do a little every day so I do not go nuts… but it is So little I feel like I am on pause. Like I never really do anything but rest and sleep.
I think anyone would rather like that to be a temporary state of affairs. And if it is not a temporary state of affairs it will take some emotional coping and more adapting. I will have to figure some things out. Like understanding it is inconceivable for me to work in the future. And that low activity paced through the most functional time of day… is just what I get. I would like to know if that is what I am dealing with… or not. I think anyone would.
It is frustrating
It seems like a waste of time and life. And you get frustrated with the very slow progress of it all. But it is progress… tests are being done. Things are being looked at. Eventually, speculations will be made and things eliminated… and one hopes… a diagnosis eventually. And then we know what we are dealing with and what options there are and how to cope and adjust to it. Until then… limbo.
You have to cope with the symptoms as they are. And hope the tests yield results as quickly as they can. That is the best that can be done. Deal with the situation you Have and hope the situation improves in the future.