Tired of plans being canceled

[Teechur]

I'm laying in bed, where I've been since about 1 this afternoon, with yet another headache. Well, the same headache but a bad head day. Fatigue, burning ears, tingling scalp, and low concentration with short temper. I just sometimes feel like I can't imagine going on like this.

Yes, I know I'm "lucky" that it isn't worse, and I do feel very blessed that I have good periods, and that I can do all that I can do. I am just so very very tired of making plans and then having to cancel.

It's the end of the school year, so things are insane. I have a field trip to an arcade tomorrow (loud music, lights, Im bringing my headphones), after that we have a LAN party that runs until midnight. I am registered for a race that starts at 7:30 the morning after. It's a practice race for my half marathon class, so I am meeting them at the halfway point and running in with them, then driving them back to their cars.

I have two weeks left of school and in that two weeks we need to reimage all the computers in my class, set up the other classrooms for the summer school courses, I have to grade my finals, and of course close out my room.

Summer starts and I am scheduled to teach up to three fitness classes on three days of the week. Why did I do that? Because when I had to make the decision in January about my summer program, I was optimistic! Yet I have had absolutely NO reduction in pain or frequency of headaches.

I am just so tired of having to cancel plans, or having the inability to cancel plans and having to suffer through things. One of the things I let fall by the way side is setting up the programs for the Fall/Winter and part of me is saying "Good...maybe it's time to close" but then that's my business. I can't close my business. I love what I do.

I'm just so exhausted and frustrated. I have to admit I am not embracing this new normal. I don't WANT a new normal. I can't figure out what the lesson in this whole thing is, although I have a suspicion it might be "You are not in control, so let go." Kind of hard for someone who has been a Type-A control freak for 48 years. I literally have zero desire to slow down or change my life. My perfect day would be described as busy, physical, and challenging. Yet here I am, another day in bed. Sigh.

It isn't that I want ideas, I just need a place to vent where other people understand. I know a lot of you have embraced your new normal. I just don't like my new normal and I feel like that makes me look like a child having a temper tantrum.

My neurologist no longer says he thinks my headaches will go away. I think that right there scares me more than anything. What if this is it? What if I'm stuck for the rest of my life in this limbo where I am not really ill or handicapped, but I'm also not able to perform at the level I desire or my life requires?

[goldfish.girl]

Hi Teechur

I don't think there are any answers. I am almost five years on & the headaches & fatigue cause me to change plans or suffer through them when I desperately want to be at home with quiet around me. It is frustrating, I understand exactly what you are saying.

I had many, many tantrums in the first few years & Yes, I did laugh at myself afterwards knowing that I had acted like a 2 year old who didn't get their own way. I don't have many tantrums now over things that get ruined because of my health, but I do still sometimes have overwhelming sadness when I miss out on things or am floored for days after doing something that would've been part of every day life before SAH.

It's OK to feel angry & frustrated. How else would anyone feel in the circumstances but it is also a part of the recovery.

Hope you feel 'better' soon.

Michelle xx

[MaryB]

Teecher,

I am there right with you, pretty much mad at the world and the future makes me mad when I know I have to make some choices. The choices are not going to be easy as I need advocate to fight my battles anymore as I cannot & will not exhaust myself over it. I am great ( reallY I am ) at my job and even with the new me I still am the best there but I cannot do it much longer. I get frustrated or thrown by little things.

I wont give you a lecture or advice. Just wanted to know I vented about a book worth of grips yesterday, and last night I slept terrible and I never have a bad nights sleep.............augh.....

Hang in htere sister!! Maryb

[amexdm]

Teechur,

You know how I feel about this situation but I would still like to offer my support. It sounds like you just needed a good rant. It is perfectly normal. We are here for you. We feel your pain. Truly do.

As someone who has had a headache for 600 straight days, I undersrtand that part of it. I dont even bother with the doctors because they dont believe me. Michelle has 5 years of headaches so she understands.

You are exhausted and frustrated as you say. Me too. Kind of a powerless feeling maybe? What if this is it? I ask myself that often. I dont know the answer. But I do have some hope that more healing can take place.

I agree with you and am not ok with the new "normal" or new "me". I like the "old" me. The old me was positive, kind, caring, happy and active. The new me is sometimes negative, angry, bitter, tired like an 80 year old man. Cause thats how I feel. But that's becasue we want everything. We had everything. Worked hard for a career, house, marraige friends, social life. Now those things are less satisfying.

All that being said Teech, you are still very active. You work circles around me and other people in your activity. You may have to take a step back and just scale back a little. You will hopefully find time to do the things you love most. But come here and rant anytime. We understand.

David

[Louise]

like everyone I agree with what they have said but like so many all I can see is you are doing/taking on too much...done all that but decided if I wanted any sort of a life then be thank-full for what I had, there are lots that don't have that pleasure...

[goldfish.girl]

Just a quick pop on to reinforce what David has said - I still have hope that the headaches & fatigue WILL get better too. Sarah (Kempse), another member on here found that the fatigue lifted after 3+ years (I hope I got the time scale right???) so it really CAN happen:-D

It's important to never give up that hope! I don't have the problem of Drs not believing I am in pain, just not knowing why it still happens or what to do about it, other than pain relief, which I avoid almost religiously as much as I can. I don't like taking medication of any kind but do when things are really bad or have been on-going for days.

Never give up hope, as it can get better. It's just about finding ways to deal with it all until it does.

Michelle x

[Jimble]

Hi Teechur

another teacher here - you were kind enough to write on my post - i know how you feel - i was almost to the point of going back on sick leave recently - i felt overwhelmed with the work (which i was!!!) i felt ill, tired and angry - my head hurt and i couldn't turn my head. When i turned to Senior staff for help - i was made to feel like i was milking my situation - what kept me going was the fact that if i did go on sick leave it would have without a doubt meant that most of my pupils would have failed - not my fault you could say but it still feels that way - fortunately with my hard work and perseverance my pupils have now passed their coursework and i just have an exam to get them through but 70% are now on target - I know for a fact because of my efforts and pupils are meeting targets - next years targets will be raised and i have already raised concerns with them that what happened made me ill!!! and that i still need support!!! - i rested for a week (holidays - yay ) - the hardest part for me about our illness is that on the outside there seems to be nothing wrong - but on the inside a different story and its that bit that bosses dont see or understand

the other thing is I'm trying to get fit and into shape - i went out on my bike and have done a couple of small bike rides (15km or so ) which is an hours ride but now I'm just so tired i don't want to go out on it - so I'm at viscous circle point want to get fit (high cholesterol ) but exercise makes me tired ..... and i'm at 8 month mark since my hemorrhage...

but my wife is very supportive - so if you have a partner have a rant and get it off your chest - and just do small steps - school for you is at wind down set that goal for yourself - its hard but it will come to an end shortly (very rewarding meeting little goals - its achievement!!!) and as for next year make the plans but scale them back a little - dont set yourself up to fail - i know its hard - i stepped down from running our dept as i know it just fries my head - which has been a financial blow but.......i'm happier because i can cope with what i have and i am achieving which does help your frame of mind!!!

chin up and plod along - hope things improve for your soon

[marycharisa]

Teecher,

I feel you pain! I am not embracing the "new normal" for myself, either! I am also sick of the headaches, fatigue, NUMBNESS in my head (I hate that one the most). Ranting is so healthy sometimes. We all need to let it out. There are no right answers, or right words. I log on to this site to help me feel less alone, to look for others who have similar experiences to share.

Thank you for being so honest.

[kpaggett]

Teech,

I was like you a type A. I still am, but am FORCED to be a type B. My issue is not headaches, but I can't physically do the things I want to do as my legs are so not normal. I can't jump around and run a 1/2 marathon or ride my bike 15mph anymore. I feel the urge to do all these things as I did them before, but I for example road about 5mph around the neighborhood and was in bed crying 3days later. The crying prevents me from going to church something I did several times/week. Now I can't do it at all and feel so disconnected because of it. It's like being on a team that you can't participate with. After some time passes, you really aren't part of the team. It is all adjustment issues. It is normal to feel how you feel, anyone would. I HATE lying in bed, it is so boring and yet I need to sometimes. I feel like I don't have much direction accept hope. Hope sucks because it gets dashed so easily.

Venting is so hard for me to do on this site because when I need to vent it is so fleeting for me and then 1hour later I am back in a terrific mood so I don't even need to read the support everyone gives. How is it for you? I hope all these posts help you feel better as i can totally feel the pain in what you have written.

I know what you mean by asking 'is this the rest of my life?' I do that all the time. As a matter of fact, since I almost died, I went to a very peaceful place and really, I have no fear of death now and can't wait to go back. I'd take that rest of my life any day it comes gladly. I know that sounds kind of morbid, but for real, what we go through is so hard all the time that only us survivors can handle it.

~Kris

Edited June 5, 2013 by Karen
inappropriate comment removed

[Karen]

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[Macca]

Teechur,

Life is for living, but nobody said it was going to be easy! I liked the old me, but I am not the old me any more. I am the new me, a different me and I have adapted to my different capabilities. If the pace is tough, then delegate some of your duties to others and get them to share some of the load, have a rant get it off your chest and then find another way to produce a solution to your problem. That in itself can be just as satisfying. Life is about dealing with change, not staying as we are. If you do that you will get left behind. Did you still expect to put your carton of milk in a bucket of cold water to keep it cool even after you got a refrigerator? Did you still count on your fingers when you got a calulator? I admire your strength and your fortitude, you seem to have more energy than many of us put together! Channel your frustration and your obvious intelligence into a force for good, don't waste it on what might have been. Stay positive and keep that fire in your belly, I like it and wish I had more of that. Keep looking for a solution to your headaches and when you find one, tell us what it is so we can all join in!

Good luck Teechur!

Kris, you keep going girl, all those docs and nursing staff worked on you for a reason and every day is a bonus, not only for you, but for them, not to mention your family and friends - and that includes us on here, we all need you Kris because we all provide support for each other and for those who are about to suffer what we did and who are then pointed in our direction on this discussion group! They, like me, need your advice and support - stay strong!

Best wishes,

Macca

[MaryB]

MaryCharisa, I am not happy you have that numb tender head but I am glad I am not alone with that one. The back of my head - not so much anymore was so tender and sore I could not lay on a pillow it was not soft enough. I tried everything and every way to rest without the back of my head on that pillow. It is much better now. It was constant for a long time but now only if I over do it.

Macca, I agree we are here for a reason. I am in a spot right now that makes me just want to move on, but my CFS/ME and fibro are so bad that I cannot. My pain and fatigue cycle has been non stop. I wonder if someone could give me a hint of answer to what I am suppose to learn so I can move forward. Just let me peak at the answer ok? I am tired and just would like a couple of good days.

I have to say that even though my GP had no answers for me the other day and said I was doing very well considering, it was great and a boost just to hear that. I mean that neurologist that never opened my chart was making me really crazy!! I think being validated just often helps. It is like I have stepped in to another level of pain and I can deal with it as long as I have support. I know this is SAH site but I am a cluster of what is worse with me right now. I hate being in this situation. It is hard when you do what the books, research, doctors etc say and it is not enough. But again I am thankful for my GP who knows and understands me! Without him and you guys I really would be in a funk!

Maryb

[MaryB]

Sorry CaseyR. You need to find a doctor you can trust. I never ever cry. Like it has been years. But when I see my GP I almost lose it when I start talking to him. I feel he really knows me and knows what I am going through. He gets it, maybe because his sister had lupus or whatever reason. He just gets me. He is maybe 14 years old and I have been going to him for 5 years. So he was really young when we started out together. He would say before SAH- "Oh Mary please make it an easy one for me today!"

[Sandi K]

Macca, well said. We have to find coping strategies to live with our new brain. New ways of doing things. It's not easy, I'm the one with ankles digging deep in the dirt from resisting change as I've been dragged along. Acceptance is a huge step in this process.

We must learn to see the benefit of what happened to us. I refused to see any benefit for a long time. There are still days I have trouble seeing positive. I guess it's my way of making sense of what happened to me- finding some good in it.

Most often now I focus on finding ways to do things that fit better with my brain. I'm not as productive as I was and sometimes unpredictably I'm knocked down for longer than expected by fatigue. But I keep going forward with the attitude of 'ok that didn't work so how can I do it next time'.

Taking a bunch of stuff off my plate was the first step. Wearing sunglasses, earplugs, and carrying bottles of water everywhere was another step. There are lots of steps, lots of strategies. Pacing is such a big one. I doubt I'll ever stop learning ways to make things better - maybe one day I'll be fully recovered and find I don't need to work so hard at it.

In the meantime, changing from the old me is the only way I can be happy and stay positive. Go with the flow instead of fighting it.

Sandi K.

Edited June 5, 2013 by Sandi K

[MaryB]

You know you can train him Casey! I live in a really small town as well. I am pretty frank when I speak with him and some of my other doctors.

PS he said that pain in my back is probably the shingles virus acting up since I am having so many problems with muscle twitching, spasms etc...

Sandi is correct with scaling back your load. I hire a cleaning girl to work with me when I get too far behind= she does the floors and baseboards,I give up having a clean car all the time, etc.. My standards are getting pretty low right now- I wore mixed matched socks very similar to work the other day but they did not match and that use to drive me insane to not have everything match.Does not really bother much at all now. I also found that doing with less helps, I keep areas like spice cabinet and cupboards organized so I have less work in finding something. Also wore my scrub top inside out and was messed up I did not have pockets until I realized what I had done.

Plus just saying "No" to things. My friend next door is always afraid she is missing something, I just don't care if I miss out on most of that stuff.

maryb

[Jimble]

ha i'm glad other people do silly things with their clothes too - but when you tell people about such things they just say oh i'm dizzy like that too!!!! they don't get it - I put all my clothes in the bin one night! instead of the laundry basket!!!!

[Teechur]

I'm no therapist but you seem angry. I know in my life experience what anger can do. While in a physical job (linework) I often found myself just a little inadequate in some way to accomplish the task at hand. And failure could bring bad things like injury or worse. I learned to summon up anger like some sort of demon to give me a little more strength/stamina/pain tolerance, whatever to get out of the fix I was in. There is a downside. Afterward I was exhausted. I was embarrassed for the new words I had invented. And I had likely released an awful cocktail of adrenalin, testosterone, and endorphins to ravage my body and brain long after the event had past. I expect this played a big part in my later SAH. Now, you being a control freak, do you think controlling your anger may be worthwhile?

Casey you are mistaking frustration for anger. I am not at all an angry person. Am I frustrated that despite the fact that I lead a healthy life I had an SAH? Yes I am. Am I frustrated about the ongoing issues I'm having? Sure. But the real me is as Pollyanna as they come.

Outside of this my life is really everything I want or need. I have a wonderful husband who is my best friend, and has loved me through thick (about 100 lbs thicker) and thin, I have my dream job as a teacher, I run a business that helps others reach their goal, I have five dogs that make me laugh daily. So your assessment is nowhere near the mark.

I'm sorry that anger has played such a big role in your life. I am thankful that I do not deal with that (and I am not being faceatous).

Even the most mellow fellow in the world sometimes wants a safe place to vent. Please allow this to be a safe place and try not to be too judgmental when someone's experience is different from your own.

[Teechur]

I sincerely appreciate all of your input. I won't lie, I've never made any bones about it. I do love my old life and I want it back. I thought a lot about what you said, Macca, and I think the reason I feel that way is not because it's moving into a newer, better chapter of my life, but it feels like I had regressed.

Background: I used to be about 100 lbs heavier. I was a couch potato; not lazy--I've always been super busy, but not physically active. In 2002 I decided to lose the weight once and for all and did it via Weight Watchers, but more by changing my entire way I felt about myself, and my outlook on life. (No, I wasn't angry before, but I had self concept issues very common to obese women.) In 2003 I had a pre-cancerous pancreatic tumor not remotely related to my health, good or bad. I had to have a pancreatic duodectomy, which is one HELLUVA procedure. I felt so bad during my recovery that I swore I would never, ever intentionally put my health at risk.

After that I learned all the things I needed to learn to live life on my terms. I learned to say no. I learned to appreciate every moment. I lived more in a day than I had in months before.

When I had my SAH it came out of the blue (as you all know) and it felt like it knocked me back into 2002 where my physical body was hampered by dis-ease. So that's kind of where I'm coming from.

I know I'm lucky to have more energy than others, and I am very thankful for that. In fact on a good day you can hear me say out loud more than once, "What a blessed day! Thank you Jesus for this day." On a bad day I remember that I am alive, and that I am well some of the times, and I am thankful for that. But, and here's the rub...I do not want to think that I now have to "slow down" when I felt like I was just really getting the "take a bite out of life" thing. I think that scares me. No, I know that scares me. I am 48 and could conceptually live another 48 years.

so when I feel good, I do everything I can to get as much out of the day as I can. When I don't, I lie down, I cancel plans, I rest. I have not found any correlation between a day of busyness and the onset of a headache. They are very correlated with weather, but not activity.

I don't need to slow down, but I do need to accept that sometimes my body gets to override my head or my heart. It's the acceptance that I'm not to yet. However, I worry that if I give into acceptance I will lose a lot of the color and joy from my life.

[iola]

Hi,

I so understand. At 34 and preparing for my wedding I found out I had cervical cancer and three mos before my wedding I had a hysterectomy. I had no children and was going to get pregnant ASAP. Big change in plans. Getting well after that took a long time, but, we adopted five years later and now have a beautiful 8 yr old. All the pieces fell into place.

I thought all health issues must be behind me as I am/was very active over achiever and very fit 47 yr old. Then this. What in the world? How is this possible? I am only a litte over two months post-op and this is more difficult than the day I was told I had cancer. It truly is life changing and I find I want to do so much but by 4:00 I am done and ready to lay down, which is not easy when you have an 8 yr old wanting her "normal" mommy back as she has told me.

I am usually a very social person but have noticed get togethers right now and going out to dinner give me big anxiety. With all ths said I know I am blessed but I can't help but wonder why.......okay, I'm done.

[Winb143]

You are all right, all of you.

You all have a right to speak your minds.

I just remember my daughter gripping my shoulder and saying "Glad to have you back Mum" that made it all

right and we both cried and hugged each other.

I am happy to be here for my family and I appreciate what I nearly lost.

So everyday is a bonus to me.

I made it back to my Daughter, Hubby and Family.

Thanks Family xx xx and thanks BTGers

Love

WinB143 xx xx Now be happy xx

[iola]

I need a little squeeze doll named Win that says, "You can do it!". Not kidding!!

[Daffodil]

I need a little squeeze doll named Win that says, "You can do it!". Not kidding!!

I think we could all do with one of those. win rocks!

[Teechur]

Lola come over here and sit with me and we can hug and cry together. Maybe we will both get back the life we lost, or maybe we won't. We're still blessed in so many other ways. We are allowed to feel ticked over this if we want to...we just shouldn't wallow in it. I'm saying that to you and to myself. Wallowing gives it power.

My "stroke" scared everyone, least of all me. Why? Because if "Tory could have a stroke, then what about me?" My problem was, I wasn't scared because I knew it wasn't serious. I was in so much denial that I literally scheduled to go back to teaching full time not even 4 weeks after my SAH.

I just keep pushing the envelope. At least now I don't have to worry so much about one day killing me off for the next three days. That is a HUGE blessing. You will get to that point too.

I had a pancreatic tumor that was discovered super early, but was "pre cancerous" (all enclosed so I never needed chemo or radiation). I did have to have a Whipple Procedure, though, and it's called the "Grandaddy of all surgeries" because it's extremely complicated, leaves almost all patients with lifelong problems (mine are painful but not anything that is at all serious). I always thought that was the best and worst thing that ever happened to me. Best because I had just lost about 100 lbs and it really showed me what life might be like with chronic illness. It really gave me a passion for healthy living. Worst because it was so draining, I was out of work two months, I felt at times like I truly was going to die, etc.

But recovering from that with about 9 years of faded memories, wasnt as hard as this. Not because it wasn't hard, but because it was more linear. I would be a little better every day. This was not better every day. It was forward, back, new symptom, old symptom I thought was gone. Now it's the excruciating headaches. Good days are awesome, though. Totally thankful for that, but wonder if that's part of why I have such a hard time accepting it. I feel really good for a few hours, or even a few days and then I get that taste of what life used to be like...and then it's gone. So it's not like all of my life is the "new normal" it/s more like an uninvited guest who won't go away and screws up all my plans.

[iola]

Thank you. Hugs from the East Coast (Maryland) to the West Coast.