My wife and I made the mistake of overtaxing my brain and emotions by putting appointments and excursions in my diary without allowing for recovery time between each one.
I forgot that it usually can take two or three days to get my energy levels back after setbacks, home visits, medical appointments and essential shopping trips etc.. As a result I completely ran out of steam and went into a panic state that lasted about a week, I couldn't function as I usually can. A walk in the park, a speech therapist visit, even getting dressed was too much.
We had a new dishwasher fitted in the kitchen and even that was a great disruption. The instruction booklet ran to 96 pages ....... I was confined to bed jittering and unable to speak half the time.
It's Enc-related PTSD and panic attacks. My medication (Quetiapine, Fluoxetine and others) must have helped but I thought I may have reached the end of the line. All the trauma of Enc. and life in general were collected together and storming through my body and mind. Christmas had a hand in it too. Christmas dinner with no sense of taste. My childhood experiences have left me with a fear of Christmas and it's always a struggle to deal with past events and trauma.
Eventually after several days of rest and peace and quiet things settled down and I was able to get dressed and put some food on the bird table in the garden. The sun was out, clouds looked fluffy and I could make a cup of tea again. Ahhh such relief.
A hard lesson learned - keep within sensible limits for activities and new events and don't overload myself. At last I could contemplate a walk around the block again or answer the phone without breaking into a sweat.
I tend to forget that my meds give me a rather false sense of my recovery state - no seizures, emotional stability, ability to contemplate tasks etc.
I overreact to things like a dead bird by the roadside or a lonely old lady in a supermarket queue and I can be brought to tears at times. It can be very hard to keep things in perspective and I have to focus on slowing down my breathing and find a quiet place. Phew.
I seem to have made it back to relative Enc. normalness. Just to say don't lose hope, deal with things if you can but don't overdo things. Best of luck to you all and thanks for being on here and sharing your experiences. It all helps. G2
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Gandalf2
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Oh Gandalf2. I feel your pain! Seriously. You’ve had a more severe episode than I have. Sounds absolutely horrible and as we all know terrifying while it’s happening. It’s that conviction/fear during these crashes about E returning that no one except us can understand. Plus that lost head, brain, can’t cope - well we all know it
Like you, I’ve been coping with some stressful (non E related) situations this last year. But I coped great at Christmas, had a mild bug and got over it, had various appointments, had my brother to stay. Went to a big family get together. First time we’d seen each other for a year. And then Eye hospital check for me. And cancer check for my sister. These were all good. My op has worked. Her treatment is working. So…… adrenaline drop….cold sore (I had HSVE) and crash!!!!! After 4 and half years I thought I dealt with crashes well but this was a cracker. I’m lucky that this didn’t last too long and I’m at the tired but brain functioning again.
So nowhere near as bad as you and I’m grateful for that. But as you say. Lesson learned. Even after all this time, it’s easy to think you’ll cope, and then the crash. I always tell others to be kind to themselves so I think I’ll take my own advice now!!
Onwards and upwards though. Take care. Big sympathy.
Hi Wygella, thank you so much for your reply and words of encouragement. You brought a tear of appreciation and a glow to know that I and we are not alone. We have to pace ourselves and appreciate the positives - sounds impossible when you crash but we climb back up. Springtime is on its way and maybe visit the baby donkeys at the shelter near here.
Love the donkey. Made me smile. Snowdrops and daffodil spikes in the garden also make me smile. It’s good to know we can be honest and people do understand because they’ve been there.
I completely get the over-taxing the brain . It’s a lesson I’ve learned over the past decade when I’ve brought on a seizure a few times by ignoring the fatigue signs and haven’t paced myself.
Bizarrely I can have fatigue at really happy times, like being on holiday . If we take a plane, I’m always exhausted by the time we have made it to the airport and checked in our suitcases . My husband says I often snore having fallen fast asleep while the plane is still taking off on the runway . Thankfully I can laugh at moments like this when they happen now, rather than finding it humiliating or depressing. I can accept that life post E has to include rest and regular ‘brain battery recharge’ times.
Your sharing your experience definitely helps, Gandalf2, as it’s a reminder that we’re not alone in coping with this .
We can relate to this. We never plan too many things and definitely not on the same day. Our friends know that we sometimes have to cancel - for example if the night's sleep was bad. We only have one brain and everything we do should be fun and not become chores. Keep the pace low
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