Living With Epilepsy
Living with Epilepsy
When I first heard those words "Matt may have epilepsy" I remember it so well my head was spinning. How is this possible, I thought to my self.
Since that time so many years ago I have learned a lot about epilepsy and seizures, I have learned that even till this day not much is known about it, however diet ketogenic, low carb, paleo and Gluten free (the last three have worked wonders for Matt. De-stressing helps which isn't always easy with someone who tends to fixates on things to the point of stress. Cannabis both CBD and THC really help for Matt, Cannabis oil has been an amazing help for Matt in many ways and the more we learn out this plant the more we are aware of what works for him, it is really wonderful that it will soon be legal here in Canada and we can begin out growing journey.
Many things have changed over the years but one thing has stayed the same till this day over 16 years ago we never know when Matt will have a seizure there is no tell tale sign of when it will happen, sure there are times that I will see him begin one and know something isn't right but to know ahead of time to have him safely sitting down or laying down, no there is no warning.
Which means plans may and have changed often, we have on many occasion had to change our plans, reschedule, postpone and yes even cancel, it isn't always easy when you have to cancel, reschedule, postpone, it isn't easy to explain to others why you cant show up, this includes time with family and friends, meetings, appointments and interviews, not just for Matt but for all of us. If Matt has a difficult time with a seizure or aftermath and I don't have anyone to watch him I would have to cancel or reschedule. Although many people do understand mostly my family because they have experienced what a seizure is like and what has happened to him during in the aftermath. For those who have not or for interviewers, drs, specialist it is difficult to express what it is like and why I and/or Matt can not attend. This includes time missed in school and their evaluations on him. Matt has never gone anywhere when he was not "himself" so the school had no idea what he was like on his bad days and this made it even more difficult to explain it to them.
Its isn't just the seizures that we had to pay attention to or the aftermath all though those are both scary to go through, it is the side effects, yes there are side effects to epilepsy.
Side effects to epilepsy:
Dazed and confused
Sleepiness
Depression
Headache
Increased seizure
Mood swings
Sleeplessness
Violet out burst
Hostility
These are a few of the ones Matt has had and we have had to deal with.
There are also the side effects from the anti seizure medication and they all have their own side effects, some were really bad for him one which he almost committed suicide, this coming from a once happy go lucky kid was not an acceptable side effect.
So many things we had to change and adjust to, friends leaving, family break up, relocation, new relationships, sleepless nights, missing work, financial issues, stress, Dr's, test, specialist, medication, diet and so many more things we have had to change and adjust to.
So many nights awake making sure he wouldn't have another seizure, so many days feeling like a failure because I couldn't find the answer to stop yet another seizure, so many tears, so many fears and the feeling of loneliness was so over loaded, "How can I help my son" I would hear my self say over and over feeling so lost. Doctors not having a clue, specialist not having a clue, no one having a clue. Hospital visits, hospital stays where I lay awake all night alone in the dark wondering what will happen to Matt, to many seizures medication not working, need to try other things but no idea what.
Change our life eat healthier, de-stress, quiet job so I can care for my son who is slowly dying of this illness. Needing to be his full time care giver, his nurse, his advocate, his cook, his mother.
Living with epilepsy has been a long road and not an easy one it has been trying at times, feelings of getting no where, feelings of failure, feelings of despair, feelings of hopelessness. It has had its ups and downs but most of all it has taught me to have faith that something better will happen, to be grateful for every moment because every moment is different and we never know what we will get or who we will have join us (which Matt) and of course to love unconditionally because this guy, my son Matt has to go through so much and continues to go through so much he is such a brave guy and deserves all the love he can get.
Living with epilepsy is one of the most difficult things any family has to go through sure there are things offered like surgery where they sever part of the brain (Matt's epilepsy in all through his brain so he could not have this at all) the ketogenic diet (the doctor did not want to try this for him) and medication (which for Matt didn't work so well) at the time these were the only things that were available for him.
Once I began trusting myself and had a partner (Mike my husband) to support me and help me with planning and research I knew this was the right move and we began our journey on self healing beginning with a low carb diet and it brought his seizure activity to half of his brain, still medication didn't work well but the diet was working and that was a really good sign his seizures got less and less, it was amazing.
Things change all the time with this illness and you never know what will happen so you learn to live one day at a time, one moment at a time and make the best of it all.
To find out more about life with epilepsy and life with Matt read our book Life with Matt
Also feel free to come like our page on facebook Life for Matt
You can also check out our video's on our youtube channel at life with Matt
