Jump to content
Sign in to follow this  
lydiacevedo

Is this my new normal, or is there more going on here?

Recommended Posts

I'm a little more than a month away from my 1 year anniversary. I can honestly say that I have come a very long way from those first days in hospital, and even those first few days home. I've made larger strides than even my family had believed I could and I am thankful, each and every day for every goal I have reached, every challenge I have overcome, no matter how small. However, a couple of things, lately, are beginning to concern me a little, so I am turning to the one place where I know I can always get straight answers, my Stroke Net family.

 

 

 

The past week, or so, I have found myself feeling almost as exhausted as I did when I first came home from hospital. My sleep schedule is also almost as erratic as it was back then. I've been counting that up to the fact that I no longer work and have pretty much destroyed my sleep cycle, having no real need to go to bed at a regular time any more.

 

 

 

Also, I have had this issue with more pain in my right leg, specifically my right calf, and tome curling of the toes and foot. With moist heat and massage, I can get it to go away, after a little while, but it is something I haven't had to worry about before.

 

 

I've also experienced more emotional outbursts. Sunday, I felt emotionally raw all day and had a couple of crying jags that lasted about half an hour, each.

 

 

 

My mother says all of this is just anxiety due to the fact that my anniversary is coming up, combined with the anxiety of traveling to Puerto Rico in 9 days, and reuniting with my father's side of the family, for the first time in over 30 years. She says things should settle do0wn once we come home.

 

 

 

What do all of you think?

Share this post


Link to post
Share on other sites

Lydi- My life, post stroke has been relatively stress-free, since most of my stress was work-related.I don't work now.Stroke-fatigue has never been a huge problem for me. We went thru a pretty major stressor recently. Iwas surprised that I tired more easily. And, like you, I wondered why. To tell you the truth, it kind of frghtened me.But, when the situation got better, so did my fatigue. My theory is that additional stress forces you to multi-task, because concentration,etc., are more difficult, and the stressor doesn't just go away because you want it to. Anyway, I think your mother may be right. Stress can make anyone feel more tired than usual. It's just that with a stroke brain, it may take less stress than pre-stroke to have a physical reaction. JMO-Becky

Share this post


Link to post
Share on other sites

Im not gonna tell you my stroke experience because that's not what you came here for. I wish I could tell you a clear cut yes or no answer. Unfortunately, with stroke, there is no one (not even a doctor) who can tell you what is permanent and what will go away. You have to take one day at a time and remember to focus on the positives. You have come so far!!!!!!! You are amazing!!!!!!

Share this post


Link to post
Share on other sites
Guest furiawill

Im not gonna tell you my stroke experience because that's not what you came here for. I wish I could tell you a clear cut yes or no answer. Unfortunately, with stroke, there is no one (not even a doctor) who can tell you what is permanent and what will go away. You have to take one day at a time and remember to focus on the positives. You have come so far!!!!!!! You are amazing!!!!!!

Lydi,

You are strong willed and have come such a long way. Let Go! and let God, it's time you practice what you teach so well. you're in my prayers.

-Will

Share this post


Link to post
Share on other sites

I think it's time for a pain med change since it's been a year almost. I'm on Gabapentin and Tramadol 2 or 3 times a day and it's working wonders for ME! No pain unless I miss taking it.

Fred!

Share this post


Link to post
Share on other sites

Lydia: I agree with Mom that a lot of this may be your new routine and the excitement of the trip. You have so been looking forward to this and as it gets closer, preparation time is shortening.

 

Absolutely try to set a day schedule for yourself. Funny, Bruce has a natural rythmn that has been with him even post stroke. What time do you like to be up in the morning, or Monster's up time? Plan your evening around getting to bed around the same time. Try for eight hours of sleep. But I will share that Bruce had a round of Botox on Monday, his last was a year ago. Then insurance changed and we had to wait. He reminded me several times during the week that we had to pick up the Botox this time-this is new. That morning he was up at 2:15 am, insisted on BR at 5 am and refused breakfast until we got back: maybe vomit or diarrhea. This is so unlike him, I actually thought he was getting sick. Now I know it was the anticipation of the injections, which are painful and the wait at the Clinic-they always run behind.

 

Calf pain, of any sort, always bothers a Nurse, especially if you are going to be flying. I would place a call out to your Doctor first thing tomorrow, maybe he can fit you in.

 

Wishing you and your family a wonderful time and please do blog when you return. Debbie

Share this post


Link to post
Share on other sites

HI LYNN FOR ME, IM ALMOST 4 YRS POST STOKE AND MY SLEEP PATTERN IS MY NEW NORMAL FOR ME NOW. I STILL TRY TO GO TO BED BY 12MN ,I WATCH ABOUT 1 HR OF TV THEN SOMETINES I FALL RIGHT ASLEEP OTHER TIMES AN HR. IM USUALLY UP BY 8AM. I NEVER TAKE NAPS ANYMORE SINCE MY STROKE AND IF I AM GOING AWAY FOR 2 DAYS OR A WEEK, MY SLEEP IS WAY OFF, SOMETIMES I DON T SLEEP FOR 3 DAYS. SO NOW I TAKE A FEW SLEEPING PILLS WITH ME WHEN I GO AWAY TO HELP ME SLEEP.AND AS BECKY SAID..STRESS DOES PLAY MORE ON MY BRAIN SINCE I HAD MY STROKE. AS FOR MY EMOTIONS, THEY ARE MUCH BETTER THEN THEY WERE, BUT I STILL HAVE MY DAYS OF CRYING JAGS, I MIGHT CRY 5X A DAY FOR 5 MINS EACH THEN NOT CRY FOR 1 WEEK.IT DEPENDS. MY BEST FOR YOU AND HOPE ALL GOES GREAT FOR YOU ON YOUR TRIP PATTY

Share this post


Link to post
Share on other sites

I'm a little more than a month away from my 1 year anniversary. I can honestly say that I have come a very long way from those first days in hospital, and even those first few days home. I've made larger strides than even my family had believed I could and I am thankful, each and every day for every goal I have reached, every challenge I have overcome, no matter how small. However, a couple of things, lately, are beginning to concern me a little, so I am turning to the one place where I know I can always get straight answers, my Stroke Net family.

 

 

 

The past week, or so, I have found myself feeling almost as exhausted as I did when I first came home from hospital. My sleep schedule is also almost as erratic as it was back then. I've been counting that up to the fact that I no longer work and have pretty much destroyed my sleep cycle, having no real need to go to bed at a regular time any more.

 

 

 

Also, I have had this issue with more pain in my right leg, specifically my right calf, and tome curling of the toes and foot. With moist heat and massage, I can get it to go away, after a little while, but it is something I haven't had to worry about before.

 

 

I've also experienced more emotional outbursts. Sunday, I felt emotionally raw all day and had a couple of crying jags that lasted about half an hour, each.

 

 

 

My mother says all of this is just anxiety due to the fact that my anniversary is coming up, combined with the anxiety of traveling to Puerto Rico in 9 days, and reuniting with my father's side of the family, for the first time in over 30 years. She says things should settle do0wn once we come home.

 

 

 

What do all of you think?

Hi I,am 8 years post stroke and it takes some time for things to sort there self out as for feeling tired ,I still find some times i need a sleep in the afternoon and even now my sleep is sometimes alll over the place ,if you feel tired it the body telling you it need a rest take care and try not to worry i will say a pray for you at church today

:welcome:

Share this post


Link to post
Share on other sites

I'm a little more than a month away from my 1 year anniversary. I can honestly say that I have come a very long way from those first days in hospital, and even those first few days home. I've made larger strides than even my family had believed I could and I am thankful, each and every day for every goal I have reached, every challenge I have overcome, no matter how small. However, a couple of things, lately, are beginning to concern me a little, so I am turning to the one place where I know I can always get straight answers, my Stroke Net family.

 

 

 

The past week, or so, I have found myself feeling almost as exhausted as I did when I first came home from hospital. My sleep schedule is also almost as erratic as it was back then. I've been counting that up to the fact that I no longer work and have pretty much destroyed my sleep cycle, having no real need to go to bed at a regular time any more.

 

Hi Lydi.

 

My wonderful Doctor has stated a najor stressers can be a temporary set back for you. Remember your brain is not as strong as it used to be and it just simply can not desl with issues the way it used to. I firmly think Mom hit it on the head. Once this major event passes in your life I am pretty su8re you will begin to feel better. If not that you defiately need to talk to your Doctor.

 

Chris

Share this post


Link to post
Share on other sites

Im not gonna tell you my stroke experience because that's not what you came here for. I wish I could tell you a clear cut yes or no answer. Unfortunately, with stroke, there is no one (not even a doctor) who can tell you what is permanent and what will go away. You have to take one day at a time and remember to focus on the positives. You have come so far!!!!!!! You are amazing!!!!!!

 

Hi, I am In my 50's (thankfully look like I am in my 30's) GRIN! In September I had a Lacunar Stroke, small vessel. I had lost feeling from my left side of my face down to my toes. My whole left side was affected. I am now on plavix. I have less feeling in my left side and residual weakness in my left arm/hand/leg. Other than that it has not been too bad. Recently if I try to hold anything with my left hand (I have too as my right arm is broken in 3 pieces). When it happened in the past the feeling would come back. Now, it seems to not be coming back in my fingers!!! Kinda tough when you are relying on this hand! Anybody experienced similar stuff?

 

This is my first entry! Hope you are all doing well! God bless,

Jewels

Share this post


Link to post
Share on other sites

Im not gonna tell you my stroke experience because that's not what you came here for. I wish I could tell you a clear cut yes or no answer. Unfortunately, with stroke, there is no one (not even a doctor) who can tell you what is permanent and what will go away. You have to take one day at a time and remember to focus on the positives. You have come so far!!!!!!! You are amazing!!!!!!

 

Hi, I am In my 50's (thankfully look like I am in my 30's) GRIN! In September I had a Lacunar Stroke, small vessel. I had lost feeling from my left side of my face down to my toes. My whole left side was affected. I am now on plavix. I have less feeling in my left side and residual weakness in my left arm/hand/leg. Other than that it has not been too bad. Recently if I try to hold anything with my left hand (I have too as my right arm is broken in 3 pieces). When it happened in the past the feeling would come back. Now, it seems to not be coming back in my fingers!!! Kinda tough when you are relying on this hand! Anybody experienced similar stuff?

 

This is my first entry! Hope you are all doing well! God bless,

Jewels

 

Jewels,

 

I have been dealing with the fingers on my right hand (affected hand) going numb after only a short time of using that hand. It happened in hte beginning, but went away. Now it has come back. My doctor has said it is a reaction to stress. For me, that meant traveling to Puerto Rico, and now the stress of the holiday season. He feels that when my stressors go down, my problem mwith numbness will go away. Perhaps you should check with your doctor. Every stroke is different. For me, even teh slightest change in stress levels can mean big setbacks. Best to talk the situation over with some one who is familiar with your medical and stroke history.

 

Good luck!!

 

Lydi

Share this post


Link to post
Share on other sites

I'm a little more than a month away from my 1 year anniversary. I can honestly say that I have come a very long way from those first days in hospital, and even those first few days home. I've made larger strides than even my family had believed I could and I am thankful, each and every day for every goal I have reached, every challenge I have overcome, no matter how small. However, a couple of things, lately, are beginning to concern me a little, so I am turning to the one place where I know I can always get straight answers, my Stroke Net family.

 

 

 

The past week, or so, I have found myself feeling almost as exhausted as I did when I first came home from hospital. My sleep schedule is also almost as erratic as it was back then. I've been counting that up to the fact that I no longer work and have pretty much destroyed my sleep cycle, having no real need to go to bed at a regular time any more.

 

 

 

Also, I have had this issue with more pain in my right leg, specifically my right calf, and tome curling of the toes and foot. With moist heat and massage, I can get it to go away, after a little while, but it is something I haven't had to worry about before.

 

 

I've also experienced more emotional outbursts. Sunday, I felt emotionally raw all day and had a couple of crying jags that lasted about half an hour, each.

 

 

 

My mother says all of this is just anxiety due to the fact that my anniversary is coming up, combined with the anxiety of traveling to Puerto Rico in 9 days, and reuniting with my father's side of the family, for the first time in over 30 years. She says things should settle do0wn once we come home.

 

 

 

What do all of you think?

I too have been having the emotional outbursts(a good cry) especially after watching a movie or after an excellent song.

 

I also used to get cramp in my right calf and would wake with cramp sometimes severe cramp, my wife would massage it again and again.

 

I too have broken sleep...!year 3 months after my stroke. Someone has told me that our rehab tapers off. Meeting alot of people at the same time makes me very tired as well as hot weather. I still get tired during the day and have my naps.

Share this post


Link to post
Share on other sites

I do not want to scare you but some of your symptoms could be a blood clot ( embolisim) forming somewhere. There is a blood test that can be done to check for likihood of this.... have it checked... you dont have the circulation you used to and if you are no longer working you have decreased activity.. just an idea Nancy

Share this post


Link to post
Share on other sites

I was at the doctor's office yesterday for the every-three-months-check, and mentioned everything I have been dealing with the past couple of months. Well, they did some blood work to check on clotting, etc. The good news is that working with Monster's training, I have actually LOST 20 lbs!! My doctor says that deciding to train my own service dog was probably the best thing I coould have done for myself.

 

 

 

Now the news I was expecting. My stroke anniversary is coming up - 9 days from today. I am pretty much at what is "normal" for me now. I work on things, like strengthing my right side and speach therapy for the aphasia, but I will continue to have memory and balance problems. I will not get the peripheral vision or depth perception back, and reading will be a problem for teh rest of my life. Well, it coulod have been a lot worse. At least I still HAVE the rest of my life!! The rest I can deal with. I'm learning to compensate every day.

 

 

I just have to work on more ways to mitigate the effects of stress. Well, I'll work on that. "Fuzzy therapy," time withthe cats and Monster helps. I have a big, fuzzy, black cat demanding my attention right now, so I'm going to give in.

Share this post


Link to post
Share on other sites

that is so true. I've found it rather relazing spending time with friends animals. Enjoy and love

Share this post


Link to post
Share on other sites

I've had some distortion of my toes also, but that seems to be due to wearing an ankle brace on one foot without getting a bigger shoe for that foot.

 

As for the sleep problem, you might check if your current list of medicines includes simvastatin. I've found sleep problems included on its list of known side effects. Several other types of statins are available, but usually cost more.

Share this post


Link to post
Share on other sites

Normal is boring! *nods sagely* LOL

 

And this might be a little late, but I figure I'll reply anyway. If it doesn't help, oh well...if it does, it's a good thing I posted! ;)

 

Sleep - Medications could very well be a cause of a weird sleep cycle, but try to keep a regular schedule. Even if you don't "work", you need to have things to do during the day! Practice your physical therapy, play with your pets, do whatever house chores you're able to. If you're too tired for such physical things, do something calmer like reading, sewing, word puzzles (great for keeping your mind active!), writing in a journal (or recording one by voice, if you can't use your hands). If you really need a nap, try to keep it under an hour, and do it on a couch or recliner chair. I try to only be in bed from 10pm to 7am, and it really helps to actually SLEEP at night, rather than just lay awake and end up being (more) tired in the daytime.

Also, try to keep a regular schedule even on weekends and vacation.

 

Muscle discomfort - um...since I'm recovered and don't have those problems, I got no advice *hangs head*. Though if warmth & massage is working for you, keep at it.

 

Emotions - Crying is good for you! It's perfectly fine to cry, and in fact is good for you health....mentally and physically. It releases stress. You can also yell and punch a pillow for anger emotions, if that helps. Better to let your pillow suffer than you or anybody around you that might get it otherwise. People think you're strong if you keep things in...I think the opposite is true. Letting go on a regular basis makes it so it doesn't build up and make it feel even worse than it is anyway.

 

Best wishes!

 

Viv

Share this post


Link to post
Share on other sites

Normal is boring! *nods sagely* LOL

 

And this might be a little late, but I figure I'll reply anyway. If it doesn't help, oh well...if it does, it's a good thing I posted! ;)

 

Sleep - Medications could very well be a cause of a weird sleep cycle, but try to keep a regular schedule. Even if you don't "work", you need to have things to do during the day! Practice your physical therapy, play with your pets, do whatever house chores you're able to. If you're too tired for such physical things, do something calmer like reading, sewing, word puzzles (great for keeping your mind active!), writing in a journal (or recording one by voice, if you can't use your hands). If you really need a nap, try to keep it under an hour, and do it on a couch or recliner chair. I try to only be in bed from 10pm to 7am, and it really helps to actually SLEEP at night, rather than just lay awake and end up being (more) tired in the daytime.

Also, try to keep a regular schedule even on weekends and vacation.

 

Muscle discomfort - um...since I'm recovered and don't have those problems, I got no advice *hangs head*. Though if warmth & massage is working for you, keep at it.

 

Emotions - Crying is good for you! It's perfectly fine to cry, and in fact is good for you health....mentally and physically. It releases stress. You can also yell and punch a pillow for anger emotions, if that helps. Better to let your pillow suffer than you or anybody around you that might get it otherwise. People think you're strong if you keep things in...I think the opposite is true. Letting go on a regular basis makes it so it doesn't build up and make it feel even worse than it is anyway.

 

Best wishes!

 

Viv

Hey Julia, welcome back

 

mc

Share this post


Link to post
Share on other sites

Hi Lydi,

 

Next month will be my 13 year anniversary. I won't say the road has been easy, because we all go through ups and downs, and different emotions along the way. How are you doing now? I hope things are improving for you. Doctor's never told me what to expect, and I've found so much more support and information on here than anywhere else. Hang in there. Some days I had to take things one day at a time, and sometimes it's more like one minute at a time. Keeping busy helps get your mind off of the things that bother you. My cat helps me tons. Animals are very therapeutical. Also on the sleep issue, my sleep pattern's have bounced around a lot! I take diphenhydramine and valerian root. Check with your doctor before you try either of these, but they've helped me to at least get to sleep, or some nights I know I wouldn't be able to sleep at all. So, the unexpected happens, but we keep plugging along. Chin up, k? You're in the right place for support and some answers.

 

LSL :)

Share this post


Link to post
Share on other sites
Sign in to follow this  

×