On the 14th June 2016 I had surgery to remove my right frontal lobe, wow what a journey I’ve been on since then. I can’t believe its been a year already. Everyday since the surgery I’ve always thought is today going to be the day I have another seizure and NO none of them have been. I am thrilled to say I have been seizure free for a year. Its been life changing not only for me but for my entire family. No more calls to friends and family to help look after children. There has been a reduction in medication which as a lot of you know is a huge thing to accomplish. My only issue now is I’m itching to work again and help provide for my beautiful family and to help support my very loving and supportive husband. I guess I am working, looking after two energetic boys taking them to rugby practises, feeding them ( and oh how hungry they get!!!) If anyone who has epilepsy is reading this, I want you to stay strong and keep fighting. I fought for years and am so happy with life right now, it can happen. You need a good neurologist, a family who believes in you and friends who support you. not to mention all the fantastic support groups out there. Its amazing what you find on Facebook and how many connections are made.
To end this year has been great, I’m so proud to say to people I’ve been seizure free for a year and yes my hair is growing again, its not always this short!! Thank you to all my friends and family. I love you all.
I’ve looked back at all my posts and can see I mentioned one of my medications was reduced. I did say I could wake up again in the mornings. Well that was very short lived. I started struggling again, and again one medication has been halved. This is great. It happened just over a week ago, the mornings are still horrible – maybe its taking its time to get out of my system I’m not sure. To play around with to many medications can have horrible effects and I’ve now come to the realisation that I will be on a number of them for the rest of my life. I can accept that. Even though I would like it to be different. Its been over six months since my surgery so why mess with success. We all have battles we fight and we do it as best we can. This one I’m doing it as well as I know how and that’s all that can be asked of any of us.As I’ve said before keep climbing your mountain – one step at a time, one foot in front of the other. No pressure. I wont lie I feel pressure to get up, obviously. as I have a family relying on me. Two energetic boys (who do not like to listen!!!)
For now that’s my story and how I’ve progressed so far.
Take Care of yourselfs and your families as best you can. Epilepsy doesn’t need to define you. You are you in your own special ways.
As always this is not intended to replace any medical advise, please always talk to your dr ( mine certainly hears from me all the time!!)
A friend of mine asked me yesterday if I’ve reached the summit of my mountain.
I questioned her and asked what she meant, through this journey of mine she has been very encouragingly telling me I’m climbing a mountain and will get to the top.
I had my surgery on the 14th June and I’m finally on the top:)
I had a final EEG a few weeks ago and there were no spikes which is fantastic news for me.
As I have been saying this whole time I am desperate to drive again. The neurologist thought it best that I didn’t.
He lowered one of my meds and we watched and waited. dropping that one medication had no adverse side effects ( I can now wake up in the mornings though)
The good news is I have my license back, I’m able to drive my children to school and fetch them. Its a whole new world out there. What a wonderful gift the surgery was. I feel incredibly blessed to have been treated by the doctors that did everything.
To anyone who is reading this and climbing their own mountain, patience and determination pay off. Never lose faith. Always reach out to others.People genuinely want to help
My last post was about seeing the neurologist about medication. Unfortunately I have to wait until December when I will have another EEG to check by brain activity. and then we will look at medication, my theory is the less I can take the better for my body.
bring on December. The fact I’ve been seizure free since the 14th June is amazing and I’m thankful everyday for it. I’ve said it before how lucky am I to have the drs I do.
I’m anxiously waiting to hear from my neurologist as I had my surgery on the 14th June (four months ago) and in that time, I’ve had no seizures – YAY.I think the time has come to start coming off some of my medication as it looks like the surgery was a success (remember I had my right frontal lobe removed) I can’t begin to tell you how excited I am. This could be the beginning of life again as I remember it and for my children who have known their mother always having seizures. My husband deserves a medal for dealing with what he has dealt with. Won’t it be fantastic for him not to pack pill boxes every sunday night and always worry when I phone him something has gone wrong. The people to thank really is the neurologist who had the faith this could be done and the surgeon for having faith in his ability to perform the surgery.
Thank you to everyone on twitter for supporting me and all your kind words. I’m always blown away by them.
Watch this space as I keep you updated.
*Please remember I am not a medical doctor and none of this is advise to anyone by no means stop taking medication without your drs help.
I’m going to be very honest about myself in this section, I have started feeling quite depressed lately and have been put on antidepressants but for whatever reason I in my “wisdom” decided not to take them, the feelings of depression just became worse until I was told to take them – they take about 3 weeks to work properly. I take them at night with my other medication and in the morning just my morning meds are taken. This whole routine makes me very drowsy and confused at times. I do tend to forget to do simple things and forgot what I’ve said to some people, yesterday I mentioned to the boys au pair I wanted a bird feeder for all the beautiful birds in the garden an she said you told me about two weeks ago, oops!!!
Its the simple things as well, like trying to pay bills correctly (. which I’m on top of as of yesterday:) I also feel like a burden to heaps of people, asking for lifts to the shop etc. is no easy task when you are so used to jumping in the car yourself. Why does life get so hard? this is why we get antidepressants. to help us to cope with anxiety and feelings of despair. Lets hope 3 weeks hurries up. I heard a good saying the other day just as you start getting to the top of your mountain the wind is sometimes the coldest – that’s very true. I’m climbing my mountain as I know lots of you out there are doing too.
Recently it was are you ok day, it was a prompt to talk to our friends about how they are coping with life
How many of us genuinely asked our friends? especially the ones we know are struggling with different issues in their lives.
I know that if you asked me now, I would stumble and not quite know what to say, I have so many things going on in my mind. I continually worry about my children and how they are coping with the effects of my surgery. within myself I don’t feel the same. I’m down a lot of the time and yes, it takes time to heal after major surgery. This will take time. I’m struggling to reach out to people and wish they would understand that when I ask for help its because I need it and cant do what I’m asking for myself. There are so many people out there with epilepsy that need help and need to talk. I must admit I haven’t had one seizure since my surgery, which is fantastic. I read so many blogs and understand the pain each person goes through on their journey and feel abit selfish writing about this topic. anyone out there reading this please know there are people who care( I care and chose this topic for that reason) and so many support groups on Facebook and people to connect with on twitter.
Lets all join together to help our fellow friends and lets make sure all our friends and family are okay.