Sooooo tired

Hello everyone…I had my craniotomy 7 and a half months ago…many days I am fine, but then I have some days where I feel extremely weak and tired. People don’t see, to understand because some days i am not like this. Does anyone else have really bad days in contrast to really good days. Today I had to force myself to get out of bed and I can barely do anything…any tips on what to do when I feel like this?

Kate, I just saw your discussion after I added mine. We must be having the same kind of day. I just got up from a nap after feeling so tired. Believe me I know exactly how you feel. I wish I add some answers. I want to know what to do also. I don’t understand why some days are good and others aren’t. I guess we have to take it slower than we are and not expect to be too normal too quickly. It get frustrated with it, too! Tomorrow may be a good day.

It’s good to know other are going through something similar… That’s why I love this site! I keep tryin to look for a reason, like what triggers the bad days… I feel like an old lady… I remember my grandmother (92 years old) always saying she was having good days and bad days…I just wish it was more good days

Mary Kate: I had a weekend of horrific headaches…didn’t and couldn’t do much of anythig but take meds which I hate…I go for my angiogram on the 29th and so nervous on the outcome will be… My advice to you…give in… you owe it to yourself and if you push, you may feel worse. Look we are all individual cases but I am a believer our bodies let us know what we need, want and what we should or shouldn’t do…It won’t last forever but again, its saying rest…Tomorrow will be a whole new day!.xoxo Mare

Sue…I just looked at your page and saw you had three AVMs!!! Is it common for people to have more than one AVM. I have had this strange fear since my AVM bled that it’s gonna happen again…that’s there’s more of them in there…I don’t know why…It’s just a gut feeling I have, pretty irrational…but is what happened to you common. I mean whatever went wrong in development to cause one AVM could probably have caused more right!!!

Sue Roth said:

Kate, I just saw your discussion after I added mine. We must be having the same kind of day. I just got up from a nap after feeling so tired. Believe me I know exactly how you feel. I wish I add some answers. I want to know what to do also. I don’t understand why some days are good and others aren’t. I guess we have to take it slower than we are and not expect to be too normal too quickly. It get frustrated with it, too! Tomorrow may be a good day.

Mary Kate, I was told it is very rare to have one avm and 3 is almost unheard of. It is not common. Believe me, I have to force myself not to think about it happening again. I can’t imagine going through another craniotomy and, embollizations aren’t fun either but, no big deal compared to getting your head opened up, as you know. I don’t think I could do it again. Anyway, awhile back, I asked if anyone else has had more than 1 avm on the site. So far, no one has said they have but, someone gave a response to help me not worry so much about having another one. As I understand it, we are born with an avm unless we have some kind of trauma to cause one. My first one was found 15 years ago and it is very probable the other 2 were there but, they didn’t show up yet on the angiogram for some reason. With improved technology, the other 2 were detected this past October. So, if they were always there since birth, and they developed as a fetus, I shouldn’t have anymore and you shouldn’t either. I like to believe this. If that is true it is not so scary. However, I do still worry that I only had one at birth and the others developed between the first one and last October. Then it is scary to think, since I have had 3, I could conceivable get more during my lifetime. I have no idea why I have had so many! Mary Kate, we just have to try not to think about the what ifs. It just takes the joy out of life. I think it is so normal for us to have the fear of going through this again. It has been a pretty traumatic experience all around. Odds are though, we have survived and things should just get better and one day it will be a distant bad dream and we will enjoy our life and put it behind us. I trust God will take care of us and I have faith I can get through whatever challenges might be ahead.

mary kate said:

Sue…I just looked at your page and saw you had three AVMs!!! Is it common for people to have more than one AVM. I have had this strange fear since my AVM bled that it’s gonna happen again…that’s there’s more of them in there…I don’t know why…It’s just a gut feeling I have, pretty irrational…but is what happened to you common. I mean whatever went wrong in development to cause one AVM could probably have caused more right!!!


Sue Roth said:
Kate, I just saw your discussion after I added mine. We must be having the same kind of day. I just got up from a nap after feeling so tired. Believe me I know exactly how you feel. I wish I add some answers. I want to know what to do also. I don’t understand why some days are good and others aren’t. I guess we have to take it slower than we are and not expect to be too normal too quickly. It get frustrated with it, too! Tomorrow may be a good day.

Hi Mary Kate. I’m more than 2 years post op and I still have good days and bad days. I too have days where I’m so tired I can barely function. My doctor explained it like this: I had a major bleed and 4 surgeries to stop the bleeding and finally to remove the AVM. As a result of the bleed, some things in my brain still don’t work quite right. For people who’ve never had any kind of brain trauma doing even mundane tasks is simple. But for us, even simple tasks are much more difficult for us. Our brains have to try to compensate or “go around” the parts that were damaged to figure out another way of doing things. In short, our brains have to work harder. That’s why we get tired. As for tips on what to do…give in to it. If you’re feeling tired, rest. Your body knows when it’s had enough, try to listen to it!

Hi Trish,
Hi Mary Kate.

I’m having a tired day too. Stay in bed that’s what i say. This group is so cool cos everyone understands, (I’ve just posted something up on tiredness cos it still frustrates me, and I still feel I should be able to do more) My brain has been working too hard today, i guess somedays it just needs to be allowed to recover…
I want to know what to do also. I’ve had to downsize my life alot, (maybe you have too?) but still get tired.

Trish said:

Hi Mary Kate. I’m more than 2 years post op and I still have good days and bad days. I too have days where I’m so tired I can barely function. My doctor explained it like this: I had a major bleed and 4 surgeries to stop the bleeding and finally to remove the AVM. As a result of the bleed, some things in my brain still don’t work quite right. For people who’ve never had any kind of brain trauma doing even mundane tasks is simple. But for us, even simple tasks are much more difficult for us. Our brains have to try to compensate or “go around” the parts that were damaged to figure out another way of doing things. In short, our brains have to work harder. That’s why we get tired. As for tips on what to do…give in to it. If you’re feeling tired, rest. Your body knows when it’s had enough, try to listen to it!

Well, my problem probably stems from me not downsizing my life…I am a single mom with an 11 year old, 7 year old and 1 year old and I teach fifth grade…I was back at work less than 2 months after the bleed and probably never had time to fully recover.

flower said:

Hi Trish,
Hi Mary Kate.
I’m having a tired day too. Stay in bed that’s what i say. This group is so cool cos everyone understands, (I’ve just posted something up on tiredness cos it still frustrates me, and I still feel I should be able to do more) My brain has been working too hard today, i guess somedays it just needs to be allowed to recover…
I want to know what to do also. I’ve had to downsize my life alot, (maybe you have too?) but still get tired.

Trish said:

Hi Mary Kate. I’m more than 2 years post op and I still have good days and bad days. I too have days where I’m so tired I can barely function. My doctor explained it like this: I had a major bleed and 4 surgeries to stop the bleeding and finally to remove the AVM. As a result of the bleed, some things in my brain still don’t work quite right. For people who’ve never had any kind of brain trauma doing even mundane tasks is simple. But for us, even simple tasks are much more difficult for us. Our brains have to try to compensate or “go around” the parts that were damaged to figure out another way of doing things. In short, our brains have to work harder. That’s why we get tired. As for tips on what to do…give in to it. If you’re feeling tired, rest. Your body knows when it’s had enough, try to listen to it!

Wow, Mary Kate…you really haven’t had much time to recuperate! No wonder you’re exhausted! Can your oldest child give you a hand with the baby? That way you could get a catnap here and there.

Another idea is to teach the two older children to do the laundry. They can then be your special helpers. Or you can ask them to think of ways they could help their family.

Mary kate,

I’m not surprised you’re tired! Can you get people to help with the kids so you can have rests?

flower
x

Connie T said:

Wow, Mary Kate…you really haven’t had much time to recuperate! No wonder you’re exhausted! Can your oldest child give you a hand with the baby? That way you could get a catnap here and there.


Another idea is to teach the two older children to do the laundry. They can then be your special helpers. Or you can ask them to think of ways they could help their family.

Mary Kate, returning home after my surgery (embol & cranial surg) I rested a lot the first month and was cared for by so many family members & friends. At the 2 month point, I tried to resume many of my normal activities, but became very frustrated by my constant bouts of lethergy and fatigue. I tried to return to work 3 days a week, and I would inevitably call on Mondays saying I would not be in due to fatigue (overdoing the weekends). I was stressed by this, knowing how long I had been out of work. I raised this with my PT, who I was still seeing, & I was told to acknowledge the fact that I was recovering from brain surgery and it was very important to recognize the need for rest to avoid fatigue (and that this was VERY common). They suggested I put some “fat” between the things I planned to do during the day, such as doing one project at work, take a 20 minute break & close my eyes, then do another thing, and so forth. Not overload my schedule. Also they emphasized it was critical to conserve energy where posssible, & I was given many examples – use the little riding cart baskets at the grocery store instead of pushing one (what a wonder that was!), keep the dishes on the counter and not exerte myself reaching to put them away in the cabinet. A lot of things I never considered. I gave myself a year to finish recovering, but I now know that it takes more than that & some things will always deplete us faster. For one thing – your brain has to work harder after having a traumatic event – just the act of thinking will deplete your glucoses and other “energy” factors. It is not easy – and in your career, teachers have so little control over their time during the day – you need to carve out little “rest” times whereever you can. It can make a difference. I also found drinking a shot of expresso coffee on occasion helps – it helped get the lethergy out of my brain for a while. We do what we can!

I tired to go back to work full time 3 months after my craiotomy, but was extreemely fatigued and found after 4 hours i could barely keep my eyes open or stay in a meeting much less run meetings that im supposed to be running. I had to cut my hours to 25 a week, and im starting a part time position this week. This has been a huge blow to my ego, but im starting to belive that it is not all bad to slow down, and well, i just have to. I recently read and srticle that has helped me accept this and has helped me explain it to others. We have been though a great injury to our brains and some of us may have disabilities too. This really helps explain the limited capacit and low energy to other people. From what i can tell this is VERY normal for us!!! See this link and Let me know what you think of the spoon theroy of disability/ilness:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Good Morning, If I understand you correctly, I seems like Depression. I have it. I didn’t realize I had Depression untill 4 yrs ago. I had my AVM over 32 yrs ago. Talk with someone soon. I hope I was some help.

hey mary kate, i had my craniotomy last october and i had the same problem, extreme fatigue, exhuastion, etc. my NS told me it is very common after this procedure. and it wont last (for me anyway). in janurary i returned to work, and i have a physically demanding job. it was so difficult for about 2.5 months i worried that i was rushed back to work to soon. i started to notice i could make it longer through the night without the fatigue. i am now to the point where i can almost go a full night now. i also tried to excersize some (nothing strenous) seemed to help with my energy levels. my only advice is to try to fight through it easier said than done but it has worked for me. also i utilize my break times!! at lunch i go to my car, its dark, and quiet, unlike the auto plant! wish i could be more helpful. good luck!

I have been having them a lot lately. It is very hard for people to understand what is really going on in the inside because all they see is you walking talking and seemingly just as you were before. Being back at work I am having more and more days when I just feel like I can’t drag myself around anymore. I have yet to figure out a good way to help combat this so if you figure something out please let me know and I will do the same.

Hello, I am having a tired day. More like a totally worn out day. How have people coped with christmas? All that organising and present buying and planning to do? And how do people cope with running a house?! I don't think others realise how much energy it takes to run a house. It's gonna sound pathetic but I do everything myself,more or less. Had to buy a replacement kettle today. Got one the wrong size. Have also got stuff to get for my house. I have a very bad rel with my sister cos she has a husband and, unlike me, she has not had to learn how to run a home, organise bills etc - he does the whole lot for her. She has never bought curtains in her life or had to figure out how to do things on-line. Sometimes I get very frustrated at her and just plain cross. Any suggestions?

thanx

flower
Jamie Pantelis said:

I have been having them a lot lately. It is very hard for people to understand what is really going on in the inside because all they see is you walking talking and seemingly just as you were before. Being back at work I am having more and more days when I just feel like I can't drag myself around anymore. I have yet to figure out a good way to help combat this so if you figure something out please let me know and I will do the same.

Hi Mary Kate,

I have my tired days as well. I've found that the harder I push myself, the worse they get, so I try to accept them. Also, I have found that during these times I have had insight into the problematic things that are going on in my life, and therefore, my down times have become "work on me" times. Finally, a friend of mine once said, "Every day is a good day. Some days are better than others." Although that goes against my natural inclinations, I have tried to find the good in each day since the day he said that to me, and I never have failed to find something good about every day.

Take care,

Debbie

I really wonder how long this tiredness lasts. It has been nearly 4 years since my craniotomy and I am still tired everyday. It’s 2pm right now and I can barely keep my head up.

Hello mary kate, I had my craniotomy 20mths ago and I hate to tell you, but I still get days when I just dont want to get out of bed! I really know why, but my GP told me that it can take up to 7 yrs to get really better. I'm hoping and praying that it won't take me that long....and you too!!!! All I do is to say that it's a tired day and take is easy.

Take you, thoughts and prayers to you.