This is the most difficult post to write so far. Some of you have commented on my previous posts that you appreciate how candid and honest I am about how I feel, but this one cuts deep. Last night I was relating this story to a friend and I was embarrassed even to say the words out loud. Earlier in the day I couldn't say them without crying. But first, some background:
Over the past year and a half I have been getting to know other people with temporal lobe epilepsy through a facebook group. Some of them have talked about how they have faced discrimination from peers, employers, and even family members because of their epilepsy. For some of them, their illness has been a lifelong battle. Seizures in childhood can cause learning disabilities and developmental disabilities, which of course can then lead to social difficulties and anxieties. There is often bullying involved and social isolation. Like other disabilities, people with severe epilepsy may not be able to keep jobs or finish school, and they often face discrimination.
In that way I've been very lucky, because mine started late in life, was caught and treated early, and has been mild. I never had any learning problems growing up and even though I'm still building my business, I'm established in my life. Aside from being temporarily unable to drive and having to take some down time from work, this illness hasn't interfered too dramatically with my life. I haven't really thought of it as a "disability", though technically I could.
And then on Tuesday, something happened that dramatically shifted something inside of me.
Someone who had witnessed one of my generalized seizures, months ago, was angry at me on Tuesday morning.
I won't go into details, but he was angry and feeling powerless. And (as a witness wisely observed) because he was angry at me and feeling powerless, he picked on a moment in which I had been literally powerless--the moment when I had had a seizure in front of him--and turned it against me. He started calling me names ("Epileptosaur") and saying things like "keep me out of the splash zone next time".
I think I kept my composure in the moment (did I?) but I was completely shocked. Not only because I did not expect this kind of behaviour from this person, but also because it was the first time my epilepsy has been used against me. It's the first time in my life that I have been at the receiving end of that kind of treatment. I mean, I've been insulted a million times--I've been a youth worker for years--but this was different.
And wow, that hurt like hell. I don't know how else to say it.
This is why we teach kids not to go around making fun of people for things they can't control. This is why we model empathy and kindness and patience and love.
So today:
Be kind, for everyone you meet is fighting a hard battle.
Ian MacLaren
Thursday, May 25, 2017
Monday, May 1, 2017
General Update
It's been 7 weeks since my med change, though it took a whole month to slowly increase the one and decrease the other (I ended up doing it much more gradually than the VGH neuro originally told me to, because of how loopy the Topiramate made me!) so I have only been on the current regular dosages for a couple of weeks.
Overall, I'm feeling about a million times better than I was a couple of months ago. Mentally and emotionally I'm feeling a lot better. I'm not depressed and moody anymore, and I have a lot more energy. I don't feel sick and sluggish all the time, though I do still feel tired sometimes and still need naps on many days. There are days when I hit mid-afternoon and get woozy and need to lay down for a bit, but overall I'm much improved. I haven't had any partials since March 14 (though a few weeks after that I had some extremely mild activity.... it was so mild that I did not count it, but just barely there... I can't even describe it and two years ago I would not have even noticed it).
My hands and feet are still tingly, but not nearly as badly as in the beginning, and improving. I still seem to be losing a bunch of hair every time I wash it, but that will hopefully improve. Not having memory or focus issues like I was when I started this one. And still some coughing/sneezing/breathing issues but those are also easing up. So overall I think the current mix is a massive improvement over the former one.
I saw my neuro this morning for my scheduled appointment, first one since December. This is significant since I have been trying to get in since my seizure at the end of December, when I was extremely depressed and realized my meds weren't working. Between December and March I called the office multiple times and even though he had told me that if it was urgent I could call and see him sooner, whenever I called the receptionist told me I could not get in sooner (hence the visit to VGH in March instead). So I told him this today, and he was not happy to hear it. He had no idea that any of this had happened, that I had had two seizures since he saw me last, that I had been to the hospital, that I had been calling and asking for appointments. The receptionist had not passed on any messages to him or made any notes in my file. He told me that he's not ok with that and would be speaking with her about it because with those kinds of mood-altering meds he wants his patients to be able to access him, and it's up to him to decide whether to see the patients sooner, not up to the receptionist (!). He was not pleased and I was reassured that he will deal with it for the future. Thankfully I'm able and willing to articulate these things... not all patients can or will, so hopefully there will be changes made so that others won't have the same problem. Can you imagine being in crisis and being screened out by your doctor's receptionist? Not cool. So I was glad to hear him say that he will deal with it.
I also asked him about long term effects of the medication vs long term effects of the seizures, because both have been a concern to me. He said that the medications I'm on have been around for a long time and are both quite safe, much safer than uncontrolled seizures. He said that leaving the seizures untreated would be much, much worse for my brain than being on the meds, over the long run. So I am trusting him on that one.
In the meantime, working on getting some momentum back in my business since I had let it lapse for the months when I was feeling so awful that I wasn't working much; now that I'm starting to feel better I am working again and need to get back on track!
Overall, I'm feeling about a million times better than I was a couple of months ago. Mentally and emotionally I'm feeling a lot better. I'm not depressed and moody anymore, and I have a lot more energy. I don't feel sick and sluggish all the time, though I do still feel tired sometimes and still need naps on many days. There are days when I hit mid-afternoon and get woozy and need to lay down for a bit, but overall I'm much improved. I haven't had any partials since March 14 (though a few weeks after that I had some extremely mild activity.... it was so mild that I did not count it, but just barely there... I can't even describe it and two years ago I would not have even noticed it).
My hands and feet are still tingly, but not nearly as badly as in the beginning, and improving. I still seem to be losing a bunch of hair every time I wash it, but that will hopefully improve. Not having memory or focus issues like I was when I started this one. And still some coughing/sneezing/breathing issues but those are also easing up. So overall I think the current mix is a massive improvement over the former one.
I saw my neuro this morning for my scheduled appointment, first one since December. This is significant since I have been trying to get in since my seizure at the end of December, when I was extremely depressed and realized my meds weren't working. Between December and March I called the office multiple times and even though he had told me that if it was urgent I could call and see him sooner, whenever I called the receptionist told me I could not get in sooner (hence the visit to VGH in March instead). So I told him this today, and he was not happy to hear it. He had no idea that any of this had happened, that I had had two seizures since he saw me last, that I had been to the hospital, that I had been calling and asking for appointments. The receptionist had not passed on any messages to him or made any notes in my file. He told me that he's not ok with that and would be speaking with her about it because with those kinds of mood-altering meds he wants his patients to be able to access him, and it's up to him to decide whether to see the patients sooner, not up to the receptionist (!). He was not pleased and I was reassured that he will deal with it for the future. Thankfully I'm able and willing to articulate these things... not all patients can or will, so hopefully there will be changes made so that others won't have the same problem. Can you imagine being in crisis and being screened out by your doctor's receptionist? Not cool. So I was glad to hear him say that he will deal with it.
I also asked him about long term effects of the medication vs long term effects of the seizures, because both have been a concern to me. He said that the medications I'm on have been around for a long time and are both quite safe, much safer than uncontrolled seizures. He said that leaving the seizures untreated would be much, much worse for my brain than being on the meds, over the long run. So I am trusting him on that one.
In the meantime, working on getting some momentum back in my business since I had let it lapse for the months when I was feeling so awful that I wasn't working much; now that I'm starting to feel better I am working again and need to get back on track!
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