I'm sure most everyone reading either is or has been in limbo. So I'm sure my complaints are mundane and common place but I don't really have any one to talk to about this in real life.
I don't know when it became a normal thing to me to have my arms get heavy and tired brushing my hair, but it seems like a long time. My hands are weak after attempting as well. My mother looked at me like I had 10 heads when I said it. A sign that my normal is not normal.
The falling over seemed pretty cut and dry. People could see something was wrong, even though I still feel like maybe I'm making it up once it fades. But, the falling has returned on and off, confirming that I was not making it up.
The blurry vision comes and goes as well. I also feel like I am making that up. But when I had to ask a coworker to read a piece of paper for me because every pair of reading glasses I had did nothing, I was close to tears from frustration.
Taking my daughter for a walk in the stroller shouldn't turn into needing to use the stroller as a walker, but it does. So does taking a trip to the store, I need to have the cart because even though it starts off fine, I typically need it for balance and strength, even on a short trip.
Sometimes it all gets worse at night, and I can't play with my daughter. My limbs and my head become very heavy, and I have to just sit and let my head fall to the side. Sometimes it feels like my eyes are rolling into the back of my head of their own volition, but I can't tell if that is because I am fighting sleep. Words are harder to use at these times. Sometimes it feels like my mouth is constantly about to speak jibberish but it doesn't, but my tongue feels strange.
The tremor in my hands, especially the right, seems to have stuck. At first it's seemed to just do that when I was falling over, but now my right hand trembles every day. I really hope that my coworkers don't think I'm on drugs or something. Because that is what it looks like whenever I do anything with that hand lately.
Brain lesions have been there for at least 6 years, always blamed on migraines. Two specific lesions have become larger within the year, which probably had not happened so rapidly before. No lesions on the spinal cord at all. Evoked potentials were good. All blood work is always normal. Thyroid, lupus, rheumatoid factor, cbc, lipids and Lyme are always checked. I'm always told it's all good.
On October 6th, I go back to the neurologist. I don't know if the most recent MRIs along with recent "attacks" will be enough for him to make the diagnosis. I don't want to go for a lumbar puncture. Not because it frightens me, but because it will mean more waiting. I just want him to make the call, get it over with.
I've had almost monthly episodes since March. 30 days have definitely gone between them, so they aren't quite every month. Each "attack" has lasted at least a week. If I try to think about it, since December, there has been probably around 5 or 6 distinct "attacks". I'm concerned that so much of this is happening in less than a year, that I will be sooner to reach a state of disability. I wonder if perhaps I shouldn't have any more children, because I might not be able to care for them.
I already have an extensive medical history, both mental and physical and I'm not sure how I am going to handle this diagnosis, if I do indeed receive it. I might feel validated, but I also feel that I might (mentally) not deal with it well at all.
I just have to make it to October 6th. October 6th. October 6th. I'll worry about it after October 6th.
Congratulations if you were able to stomach my "dearly diary" post.
I don't know when it became a normal thing to me to have my arms get heavy and tired brushing my hair, but it seems like a long time. My hands are weak after attempting as well. My mother looked at me like I had 10 heads when I said it. A sign that my normal is not normal.
The falling over seemed pretty cut and dry. People could see something was wrong, even though I still feel like maybe I'm making it up once it fades. But, the falling has returned on and off, confirming that I was not making it up.
The blurry vision comes and goes as well. I also feel like I am making that up. But when I had to ask a coworker to read a piece of paper for me because every pair of reading glasses I had did nothing, I was close to tears from frustration.
Taking my daughter for a walk in the stroller shouldn't turn into needing to use the stroller as a walker, but it does. So does taking a trip to the store, I need to have the cart because even though it starts off fine, I typically need it for balance and strength, even on a short trip.
Sometimes it all gets worse at night, and I can't play with my daughter. My limbs and my head become very heavy, and I have to just sit and let my head fall to the side. Sometimes it feels like my eyes are rolling into the back of my head of their own volition, but I can't tell if that is because I am fighting sleep. Words are harder to use at these times. Sometimes it feels like my mouth is constantly about to speak jibberish but it doesn't, but my tongue feels strange.
The tremor in my hands, especially the right, seems to have stuck. At first it's seemed to just do that when I was falling over, but now my right hand trembles every day. I really hope that my coworkers don't think I'm on drugs or something. Because that is what it looks like whenever I do anything with that hand lately.
Brain lesions have been there for at least 6 years, always blamed on migraines. Two specific lesions have become larger within the year, which probably had not happened so rapidly before. No lesions on the spinal cord at all. Evoked potentials were good. All blood work is always normal. Thyroid, lupus, rheumatoid factor, cbc, lipids and Lyme are always checked. I'm always told it's all good.
On October 6th, I go back to the neurologist. I don't know if the most recent MRIs along with recent "attacks" will be enough for him to make the diagnosis. I don't want to go for a lumbar puncture. Not because it frightens me, but because it will mean more waiting. I just want him to make the call, get it over with.
I've had almost monthly episodes since March. 30 days have definitely gone between them, so they aren't quite every month. Each "attack" has lasted at least a week. If I try to think about it, since December, there has been probably around 5 or 6 distinct "attacks". I'm concerned that so much of this is happening in less than a year, that I will be sooner to reach a state of disability. I wonder if perhaps I shouldn't have any more children, because I might not be able to care for them.
I already have an extensive medical history, both mental and physical and I'm not sure how I am going to handle this diagnosis, if I do indeed receive it. I might feel validated, but I also feel that I might (mentally) not deal with it well at all.
I just have to make it to October 6th. October 6th. October 6th. I'll worry about it after October 6th.
Congratulations if you were able to stomach my "dearly diary" post.
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