EnableMe | enableme - stroke recovery and support

I had a stroke 12 months ago as a result of a dissected carotid artery… followed by another one two days later after being sent home from hospital with a suspected TIA.

I class myself as one of the lucky ones… other than a fair amount of stroke pain on the side affected by the stroke and chronic insomnia, I can still function well.. to a point.

The side with the stroke pain feels like my leg after surgery to insert plates to fix a break. The incision severed the nerve endings in the area. 15 years later it still feels numb, with a tingling sensation when touched. This is pretty much how my left side feels today. I was only made aware this was stroke pain after seeing a second neurologist. Prior to that I thought I was experiencing more strokes, for which I was prescribed antidepressants to cope with my “anxiety” by the Medicare appointed hospital neurologist. It was such a relief to have a name placed on the sensations. It also went a long way to fixing my anxiety.

The other thing that accompanies the stroke pain is the strange reaction of the side to temperature. In cooler rooms, or outside, this side will react as though there are extremes and I will get goosebumps on one side but not the other. At night, I wake up in a pool of sweat on the stroke affected side. The other side of me is dry. With the help of psychologists, and Acceptance and Commitment Therapy, (ACT) I’m learning to live with it.

The one thing that I still really struggle with, despite making the best efforts with CBT and ACT, is the chronic insomnia.

I’ve had sleep studies done, no sleep apnoea. Have undergone CBT-I without any change. Have good sleep hygiene. Have seen a specialist sleep doctor, with whom I have reduced my afternoon naps to half an hour a day, reduced / completely stopped consuming alcohol, have stopped taking all medication in case it was contributing to the insomnia. Kept 2 months worth of sleep diaries.

12 months on, after complaining of insomnia from the week after my strokes once released from hospital, I’m still struggling with chronic insomnia and chronic fatigue.

I can fall asleep no problem. But I wake after 45 minutes to an hour. Usually having vivid dreams in this sleep, and waking covered in sweat on one side. Sometimes I can get back to sleep for another hour of the same. Sometimes it’s longer, maybe an hour and half, but never longer than 2 hours. After this I’m wide awake for two to three hours. I follow all of the advice, get up if you can’t get back to sleep and do something boring. Nothing changes.. I’m just wide awake. Sometimes I can get back to sleep for up to an hour of the same sleep pattern. This time when I wake it’s like I’ve had no sleep and I’m totally drained, with rocks in my eyes. As part of the sleep hygiene I usually get up at this point and have one of my allowed 2 cups of coffee a day. It doesn’t help. I think I could probably drink 4 or 5 and it would have no impact on my inability to sleep.

As part of the ACT I’ve actually managed to have a sort of normal and good quality life. I make the most of my awake time, doing chores and doing things for myself to stop me from sliding into depression. I have to nap in the afternoon… a wave of tiredness washed over me and that’s it. I used to nap for an hour and a half. But on the specialist’s advice I’ve cut it back to 30 minutes.

And now the struggle begins. I’m horrible because I’m so fatigued. I have no filter on what I say, my self control has gone. I’m irritable. I get over heated with emotions. I’m losing all respect from those around me.. I’m just horrible. I feel like it’s slowly destroying me.

The doctors all agree, I’ve done everything asked of me. I can’t do any more and there’s no treatment left to try. I refuse to take drugs as the side effects are generally worse than the fatigue. The drug I was on was worse when I had to stop. The withdrawal nearly destroyed me. I’ve never felt so low. So drugs are out.

I’m committed to making the most of my life whilst I’m at my best, from 6am to 2 pm, and I’m enjoying it.

My doctors have advised that I should pursue at TPD claim as it’s doubtful I’ll make a recovery in time to resume work back to my old abilities. I’m concerned that, as it’s stroke related, no one will actually say, in writing, that I won’t be able to work again.. who can tell? The advice so far has been, might be 12 months, 2 years, 6 years or never. While there’s a chance that I may recover I’m doubtful that an insurance company would pay out.. and that’s a worry.

I’m making the most of it. But I’m suffering.

rant over… sorry, needed to vent and get this down. I thought this might be a good place just in case anyone else was going through it so they knew they weren’t alone.

Hi, I didn't have stroke but I'm bad sleeper like you. Cofee keeps me going.

To your sleeping problem I would advise to you start doing some physical work/activity during the day as much as you can to the point you feel tired. I do not know what you can or can't do after stroke but some physical work on some kind of creative project, hobby would take your mind of your problem and work would make you tired. Learn to play music, painting, woodwork anything to keep you busy. I think this type of regime could help you get better sleep.

I'm no stranger to stroke: my mum 4 strokes in last 25 years ( playing button accordion was home mind therapy and physiotherapy for her)and now my brother 3 months ago still in hospital.

Thanks for taking time to reply Georg. It’s really appreciated.

Afraid to say I’ve tried this quite a bit.

I don’t know why, but physical work actually makes it harder for me to get to sleep at all. I’ve worked till I can work no more…. Then, when I go to bed, I just can’t sleep until after 2am. Its bizarre.

Activity wise, I’ve taken to riding a bike. I go out early morning whilst I’m at my peak in terms of being awake and alert, but I need to be home by 3 ish as that’s when deep fatigue sets in and concentration goes out of the window.

Sorry to hear about your mum and brother. I hope recovery is just around the corner for them. As I mentioned I believe I’m very lucky only having these couple of issues affecting my life when compared to others. I feel guilty and self absorbed even mentioning what I’m going through compared to those, like your brother, remain hospitalised.

Hello Insomniac, I can relate to the not sleeping, but I don't know if it related to my stroke. I had my stroke 20 yrs ago, when I still had young children t home, and I have had another child since then, so as a mother I didn't get a lot of sleep during those years.

I have also tried not drinking coffee, my life support system, drinking decaf, no naps, the lot. Some days I will be watching TV and just fall asleep.

I have been working, part time, and studied for a degree, during those years, I can function at work, study etc. and drive home , after that my patience wears thin, and my family may need to give me space for half an hour, while I have coffee a snack and wind down.

Recovery from a stroke is a journey, you will hear that a LOT on here, and everyones journey is different.

From my experience,and I have heard this a lot on here as well, be kind and patient with yourself. Do what you need to do, and maybe don't stress?

I have come to accept I can't sleep some days, that's just my life now. Often I will get up and read a book, bad idea because then I have to finish it, and sometimes the sun comes up while I am reading.

I have found that days that I am working I sleep a bit better, but not consistently.

Sorry I don't seem to have been much help, but my last thoughts, after all the rambling, is be kind to yourself, don't stress, enjoy the jouney, and focus on what you can do.

If it all gets too much, maybe book a counsellor?

Life is a journey, the ride is better than the destination.

Happy Travels.