Thankyou for your kind words, I spoke to my doctor this morning and he is giving me a prescription for Zopiclone to help with my sleep or lack of it, I've fought the sleep thing for four weeks now on my own, but now I've admitted defeat and know I need help, I thought I could fight these demons myself, but I'm just not strong enough. Maybe if I can get a good nights sleep maybe things will fall into place, little by little.
I'm glad your feeling a bit better, yep we are always here for you, and you are helping me too just by talking. Rest up and we will talk again soon . Keep smiling even if it's put on x
Hi Kenmore,
Im not a stroke survivor but ive met a lot in 12 years as a support coordinator. Please take heart from all the replies youve had from the amazing community on here already.
If there is one thing i can offer it is this. I would not be still doing this job if i did not witness people recovery following stroke. Ive met people who have returned to many aspects of things that matter to them and the joy that comes from that is amazing. Recently one of our volunteers got a job, they had been trying for four years... 6 years after their stroke.. ☺
Quite a few folks have found it beneficial to record their recovery using a journal. Looking back on your entries can reinforce that you are recovering even when it may feel like its stopped (it wont)
If you can connect with any groups on line then do so. The good thing to come from covid19 is that you are not really limited to joining a local group. However there is no substitue for face to face over a cuppa...
Hope this helps.
Keep sharing ?
Jason
Such a great answer. I met a chap once who talked about his stroke as having an unwated 'apprentice'. "They slow me down, wind me up and question everything i do"
Eventually their "apprentice" became skilled too and the job got done with additional care and attention..
I really value hearing such definitions of their stroke it is often a great way to help someone understand that other people have been through it.
?
A great likening! I love that one and so true.
Sleep and rest are really important, whilst you're resting your brain can get on with it's task of finding new pathways, if you're fighting the fatigue and trying to keep going the brain never gets this opportunity. So view resting/sleeping as a positive action - your brain will thank you for it!! ? stay strong x
Hello Jane. It’s ok to not be ok. I had a stroke a year ago followed by a number of TIA’s and refer to myself ‘post stroke’ as the new recycled me....not the same as before.... different. But still loved and valued. I’ve learned to laugh at my gobbledygook and forgetfulness etc for the best part although I can still throw a good tantrum lol.?Stroke is such an awful thing to happen to anyone and for my part I’m still really only comfortable talking to other people that have had or know about stroke and my close family. Keep talking with those you trust and rest rest rest and the rest will follow.
I think the most sobering thing i heard was when someone told me "the day i had my stroke is the day i [passed away] . The day i had the stroke is the day i was reborn. I'm still that person, but a bit different"
That statement has helped a lot of people. I agree with what you say - those who have been through it, know it.
Im really valuing what im reading in the community responses here to Janes post. They will help me help others as i need more examples to have use when i get back out there. 5 months without being face to face with people is raising my fears about what to say to people when my visits start up again.
Thank you!
Jason
Why does every day seem so different, I never know what I'm going to wake up to, sadness, worry, depression, anxious,happy, which one will it be today, some mornings I just want to stay in bed because that's where I feel normal.
Yesterday was a bad day, tears, anxiousness,being really over sensitive to what my husband and son were saying, and the tiredness of not doing anything because I've no enthusiasm.
But today has been better, a GOOD happy day, I can't remember how long ago I had one of those since the stroke, I think the Zopiclone last night helped, I went clothes shopping today and it wasn't to scarey out there, just one slight wobble, didn't stay out for long as I got quite tired ? but I did it.For the rest of the day I've just felt so mentally fatigued.
All of your messages have really helped me, it shows I am not alone, and I don't need to be scared and I can cry if I want to, I spoke to my husband yesterday and told him the strangest thing...I DONT KNOW HOW TO BE ME ANYMORE, AND HOW TO BEHAVE...has anyone else felt like that?
and Colin I'm trying to smile everyday even if I don't feel like it ?
Thank you everyone for your support
So glad you've had a happy day. It is true that lying in bed the body feels okay, but then you move and think 'oh dear'. Add the aches and pains of age and some morning I wonder if I'll make it out of bed.
My moods still vary, but I try not to show them. Sometimes you do want to scream with frustration, but it's always better to try and calm yourself and count to ten.
I am sure things will continue to improve for you.
Well done for going shopping, hope you managed a little bit of time on your own like I suggested - it's a bit scary at first but it will get better I promise. It's normal to feel fatigued especially if it's a while since you've been shopping. It feels really strange at first to be so fatigued but just remind yourself that you've had a stroke and that's why you feel like you do, things have changed for us and it can be hard to accept at first.
Hope you managed to rest for the rest of the day, the fatigue can be really draining, you'll learn your own limits but as you start to feel better you'll be able to do more - it just takes time.
It looks like it's going to be good weather for the next few days, the perfect time to get out for a walk and get some vitamin D from the sun. Keep going you're doing fine.
Ann
It is common to have good days and bad days. My guess is that the brain is so busy trying to mend itself, that it over reacts one day, then accepts its done too much and under reacts the next day.
I just accepted the good days/bad days thing.
Something that worked for me: I never stayed in bed. Every morning I got up, even if I then went and sat on the settee. I also dressed, washed and so I felt theday was different from the night.
I hadnt thought about "how do i behave" but yes, you are spot on, how do I behave.
We become the "new me" and some of the new me is nicer than the old. Difficult for your immediate family, but they will learn how to react. They will not learn what its like for you, only another SS understands what its like.
Everyone is struggling on how to behave with this dreadful pandemic. So its something us SS are actually one up on.
Those bad days/good days does ease. In fact I needed to read your post to remind me that happens.
And you made my day and I now have a natural smile. No need to fake it or false it or force it. Genuine smile. Thank you.
And how about being positive ? Can you do a bit of that yet ?
I used to write down one simple thing I could do, such as tidy the clothes that I inclined to heap on a chair.
Well heatwave is starting down here in rural Essex. I will have to get the plants watered again.
Colin
Hi, I totally agree, I never know what each day will bring, emotionally or physically. It's definitely an emotional roller coaster!! I'm 3 years post stroke and still find myself struggling to deal with this range of emotions. I have definitely become a good actress, I try not to be negative if people ask how I'm doing and just smile and say "I'm OK thanks", when sometimes I just want to scream !!!
I hate being disabled and hate being on this roller coaster but I don't know how to get off. I feel like I'm alive but I can't join in with life. It's like being a child in a sweet shop but not being allowed to eat the sweets.
Like you I DON'T KNOW HOW TO BE ME ANYMORE. Keep smiling and stay strong.
Regards Sue
Thanks Ann
my husband was with me, but he stayed at a safe distance so I could look around, it was like having my own personal bodyguard...
this fatigue takes some getting used to ?
That's great, it's just the confidence boost you need.
I agree the fatigue is really hard to get used to, you just have to listen to your body and rest when you need to, it's always a bit worse following activity you have to be careful not to overdo things too soon. I still get some fatigue if I try to do too much in the day, it's easy to forget when you feel well.
Have a good weekend
Ann
Hi Sue, Thankyou for your post, it must be so hard for you, I'm sorry you have been left with disabilities, I'm like you sometimes I just want to scream..WHY ME... I try to stay positive but it's soooo hard sometimes and so difficult for the family around me,I just want to be normal again.
I'm fortunate that I have not been left with any physical disability, just a sore shoulder and left arm, but my mind is all over the place, I'm compensating with how I look, dress and hair and makeup, it takes me ages to get ready, I'm so conscience on how I look externally, everyone says you look really well, when I'm ready to scream or wail..
stay positive as well, I know I'm only four and a half weeks in and if you are still coping after three years I really admire your positivity
kind regards
jane ?
Hi Colin
im glad I made you smile ?
Days here are a bit like a roller coaster...I hate roller coasters....
today I'm determined to have a brighter day, maybe just a few wobbles, I still get very emotionally drained and weary but I've now got some sleeping pills that are helping me at night. My sons girlfriend got me one of those mindfulness colouring in books so I'm doing that in bed to wind down at night as well, I'm sure it's helping.I have also taken up reading again, I can lose myself in a good book ?
doing anything else at the moment seems such a chore and oh so tiring.
Kind regards
Jane ?
Keep smiling
Dear Jane
Very impressed with the effort you are making. Well done. With your attitude you will achieve a good recovery.
Mindfullness and similar are good at getting us to rest our brains so that our amazing brains can work at puting things straight.
Well done
Smile smile smile smile
and be positive, just as you wee on thursday morning
Colin
Not coping today, father-in-law is in his last few hours/days, I'm an emotional wreck, trying to keep it together for my husband...
I have these spells of overwhelming grief, and I can't get myself out of it, I'm trying soooo hard, I'm mentally fatigued and don't know where to turn ??
I think you have recognized that you get good days and bad days. So today (in fact yesterday, I didnt read this until Saturday) is a bad dy and you know that you can acept the bad day and the better day will be here Saturday or Sunday.
I am so sorry to hear about father-in-law. I am sure this will add a lot of tears to your next few days. So please just cry, dont fight it. Then , when the tears subside, you will be a good support for your husband.
Try meditating to get some relief for the grief outpouring.
You are clearly doing too much, possibly too much mentally and if you can ease away from doing too much then things will improve more quickly.
A am more than 4 years post stroke and I still cant manage a funeral. I can manage just about everyting else (mentally) but not a funeral. You can think about father-in-law in your own way, which will be a new and different way from pre stroke.
When the stroke got me, I started to die. I travelled away from my body but then was back in resus. So I know that there is a life after death. Quite reassures me.
Dont give in. Force a smile. Think about something good that happens today.
Colin