It’s years since I posted but as above I’ve been just trying to be normal! I know I’m not. 4 x coiling one being 28mm
The seizures are still going on. I’m 15 years in now and wonder when the next seizure will determine whether I carry on.
Truthfully I really don’t care. I’m so very fed up with the meds and the symptoms.
I totally hate being this way whilst trying to be normal.
Stephen, I’ve had to learn to work with my medical issues. Fighting them was getting me nowhere. Truth be told, I mostly just ignore them but that’s not a good thing for me as I have one or two that shouldn’t be ignored.
I often wonder how people define “normal”. I don’t think I’ve ever been normal, I know it’s not something I’ve aspired to be. When I look back over my slightly over six decades of life, I’ve always been changing. My rupture and then the following medical issues just made me change a bit faster.
When I had a plethora of doctor visits, I did get frustrated with the whole thing. When they got me in a more livable place, the frustration eased up. I had to set small goals to get to the larger one. My need to be outside and walking without excruciating pain was my first goal but it took a trial and error of medication. Try setting some small doable goals, maybe it will help.
Good advice I know. I’m just feeling quite low at the moment. I miss my old self. I miss working. I miss being able to do things. It’s frustrating. S
Hi, Stephen. I hear you. Been there; done that. I’ve done my share of frequently (if not constantly) comparing my personal world today with the way things once were and the way things might be in the future (where worry tends to reside). Spent way too much time in my past and in my potential future that I missed out on a lot of things that I already had in place today. There were a lot of present moments that I missed out on, I am not afraid to say. And as they also say, you never know what you have until you lost it. Here’s hoping that your eyes may show you the many presents that come with a gaze that is placed on the present moment. Thanks again for sharing, Stephen.
I sometimes go through periods of missing my career, but then holidays come like the 4th of July, New Year’s Day and Christmas Eve and I am elated that I don’t have to work those days and nights anymore. I get to spend them with people I love! Sometimes the fatalities I responded to pop up but then it’s balanced with a parent who chose their children over their drugs or DV situation. It may be the time of year that a child died and I just don’t remember the month they died.
BH keeps telling me I’m not 20 anymore. In fact when I had an early appointment on Wednesday to see my PCP those exact words came out of her mouth. What is it with these people? 
It can be difficult to embrace who we are now and not to miss our old selves. I go through what I am capable of doing now ten years after my popped pipe and what I was able to do right after. It’s a lot better now, especially my speech. But we still run across people who treat me as if my IQ is below 70, especially if I’m having a bad brain day and my stuttering is bad. I used to often tell people “I’m brain damaged, I’m no stupid”
In the first year or so, the Neurologist I had kept trying me on different antiepileptic drugs and they often made things much worse for me. He believed my tremors were warranting the medication. I finally had to tell him to stop as the tremors did not affect my quality of life like his medication was doing.
Having known a handful of people with epilepsy, I am concerned that you may be heading to depression. I learned from them that depression can increase seizures as can stress. One father kept having them day after day and sometimes multiple times a day. His son was my client so I went a couple hours to their apartment three times a week. His head looked like someone took a baseball bat to it with all his falls. The family didn’t have much money so there wasn’t things in the home to make it safer. They certainly couldn’t afford to put carpet down to make the falls a bit easier.
Interestingly enough the children got lice at school. Their SW came and we began the lice eradication process. The cleaner the apartment became, the less seizures he had. He wasn’t on any antidepressants but his depression started to lessen. It was when I learned that a cluttered or dirty home can contribute to depression. Once his seizures started to lessen, the stress in the home started to lessen. I didn’t have a magic wand then, nor do I have one now, but if your home is cluttered or not as clean as it could be, maybe starting in one area of one room can help. @ronk had a wonderful topic about cleaning and declutterring about 8-9 years ago I think it was. I remember him saying to start clockwise or counterclockwise however your brain works and keep at that section.
The other thing I can think of is if you could join an epilepsy support group. There aren’t many, if any physical support groups for us that have ruptured in my neck of the woods, but there are support groups for epilepsy. I think our only physical support group is about 4-5 hours away in a big city. When people can get with others who experience the same thing we go through it really helps in my opinion.
Stephen,
What is normal? And who is the judge of that? I ask because I wonder to whom you are comparing yourself. Sure, it is human to do that, but everyone in this web site group is facing or has faced a challenge the majority of the population has not. Yep, we are unique from others on that. But the “others” have faced and are facing challenges of their own. Many of which we will not identify. I say this not to lesson your challenge, but to urge you not to compare yourself to a make-believe “normal.”
I am sorry for the seizure challenges you are living through. As Moltroub shared, depression begets seizure. And as urged by Peter, we cannot relive the past, nor predict the future, so our joy is in this moment. Yep, these may be easy to say and type, and if these quips were posted on a bathroom wall, they may have less value. But you and I both know that this group of survivors has deep heart and understanding of your challenges. Depression is exceptionally difficult to combat – and even tougher for those of us who remember our “old self”.
I, too, get pulled into that hole of depression sometimes: missing who I was, who I thought I would be. When in college I had career goals that had to be abruptly modified when I survived the burst shortly after graduation. After health survival instinct mellowed, I shifted to personal and career survival modes. The annie deleted most of my personal history and education in one moment. I woke up and didn’t think I would ever be able to read, comprehend, or remember again. And my career path required all three. An ingrained optimist from adventurous parents, I created a new mantra for myself: Look where you are going, not where you have been. I started the relearning. How to walk. How to read. How to remember. How to comprehend. I relived how to learn. Each time I got frustrated, angry, and depressed, I stopped, sat on the floor, shed tears, and chanted to myself: look where you’re going, not where you’ve been. Simple, but it kept me moving forward. It helped me accept the new me.
And as life continued and I had children, that became the mantra that they heard their whole childhood. At first it was a simple direction so they didn’t walk into things while at the grocery store, then became the lesson for each school challenge, sport challenge, and now their own start to career paths.
I share this with you so, hopefully, you will give yourself permission to fondly remember your past, but also give yourself permission to accept who you are now. To accept the challenges and face them head first – then proudly pat yourself on the back when you overcome them, even the simple ones like a day with laughter, a day without a seizure, a day without worrying that a seizure may happen. And know that you are cared for and supported by each of us in this special group to which you belong!