MaryB

Oh yes, I would make a fantastic nurse. MY sister in law in California (her husband was in that horrible pile up fiery car accident in Sacramento a year and half ago that I had just got back from seeing and the next day had my SAH) well I had word she was taken to hospital with chest pains in the middle of the night and they are still running test. Her husband had to testify for the second time yesterday. SO you know how I deal with stress? I took a nap and literally put my eye blinders on and never left the couch because I cannot bare the thought of anything happening to them. I go ahead and stick my head in sand to protect it! All my energy for the day drained right out me and I must protect myself. Macca, You really do make a difference. I agree with Davey that you are like a professor or “something”. Funny what we need to do to make it through the day sometimes. I can hand out the buckets to put over our heads when needed. Maryb

Thank you for sharing Daffodil! I read much but saved it to read more later. I tell you this week of getting over any type of a long day or physical day is on my last nerve! I wish I did not like working hard. I am so trying to pace myself but ...... I am so trying hard to pace myself but.............I am so trying.......... Macca, You do not realize how much you already do with your wise words and support in here. You remind us all everytime you pop in and are so postitive even when you do not feel very positive. I feel instead of working and doing more harm than good for myself, I would better suited helping in a support group with adults or children it would be such a better use of my time. I just cannot imagine doign anymore than I am while working as my husbands load of household chores is much bigger now. I really have not much life out of work. I cannot use up my energy. Maryb

Work out of the house? I would feel I could do 12 -20? I still want to crawl in bed by 1:00 everyday so mornings only please if someone is hiring??? It is a shame that I feel I have so much positive energy to offer in volunteer work in a field I am familier with that I cannot trade that time for free health care. It is like my choice is full disabilty or work full time to have insurance. Somethings not right there. There needs to be a middle ground. Maryb

Hey Jude ( bet you never hear that), I think your story is very common on here. Most of us get no answers why- I think it also depends on where damage is located etc. It would just be nice to have some professional help us through. I know someone from your part of ther world will be able to direct you better than I can with Head Start and some programs etc. Good Luck , Mary

SB33, I think that is a common thing after basically what we would call a near death experience. I think it differs with age as well and where we are in our life. It may be part of PTSD ( which is common). I have done much soul searching and I am not the only one who seems to be looking at myself from the outside in. I think we all have profoundly changed our thinking, and some of us just feel we are a totally different person. I certainly feel I am different, I am just not who I use to be, I feel different, I even look different. Am I understanding what you are trying to explain? At 54 I have much more peace with my life. I have come to terms with my past etc and feel at peace where I am today. Not to morbid but I just have come to terms with where I have been, my path, my journey and where i am now. Not that I am 100% all the time happy that I have physical and mental limits set on me. Maryb

My friend calls it "re arranging my thinking". I think that is what most of us have had to do. Good luck

Yes, I think that is why using the word stroke for a NASAH or SAH is misleading. Several of us have had our neurosurgeons say to us "IT IS NOT A STROKE!". I had both and no one really understands that the stroke caused by the SAH and my blood pressure being so high from that. And of course you get into a whole story etc... I say brain hemorrhage to people that need to understand more but if I am panicking in the grocery store for my wallet I cannot find and start looking dumb I aplogize and say "I am sorry I had a stroke and I sometimes I get overwhelmed". I do however have high LDL cholesterol and my blood pressure was all over the place a year prior and up until I recently started to take a channel blocker. I do worry that I can have a stroke caused my cholesterol. Maryb

Hi Stevieboy! Welcome. I have no great words of wisdom for you but many of us experience that same thing. I recently started to see a therapist that understands brain injury and it was very enlightening. I thought I had it all figured out and work through it but guess I needed more help. It was well worth talking to someone. Do you still see a neurologist or have a GP that you see? Have you talked to them about this? Also when over tired I cannot be in a crowd or heck at work with intercoms, phones, and people listening to the radio etc., all of it makes me not be able to think straight. Good luck, Wiser people will follow soon. Maryb

Hi all, Just a few words of more wisdom or lack of from me. I have a new work schedule but did not make it through it this week as I moved some branches from trees we had cut down 5 days ago. I certainly did not move the heavy stuff but just drag stuff for about 3 hours to the road to be picked up by the city. Apparently this is out of the question for me to do.? I have been paying for it for 5 days now. Before SAH and all this brain stuff my fibro pain would knock me a good one, but now I get the pain from my head to my toes along with this exhausting exhaustion. I miss not being able to do yard work and hard work. I really do like to work hard. I do not know how to not work hard, I had a week off with nothing to really do and was bored out of my mind (although I took a 10 hour day to myself and paid for that for 5 days too!). In therapy we talked about only worrying about my job ....which was working well until we became shorthanded in every department and everyone is very burned out. I do have a supported dysfunctional work place however so I guess I am happy for that. I think at least 98% of them "get it" with my head so I should be happy for that at least. Learn to pace I know ....I am just needing to say I cannot believe I cannot do some physical labor etc. by this time..or have anything at all outside of my 3 1/2 days of work. Maybe a 2-4 hour day here or there with dinner or lunch and some shopping but no adventures! No flying by the seat of my pants! No more getting full of dirt in the garden! With my job working with small animals I certainly have a mental and physical one where I seldom ever sit down unless I have to take a phone call. Augh. ... sorry needed to rant a bit. Sorry to you too Macca. Maryb

Thanks Lin for that information!

I recall only that I loved mac and cheese and bland food for like a good year. Still am in love with mac and cheese.

LOL Daff, as if we are not feeling sexy enough!!!

Chin up Davey it is not even close to being time to plant anythign yet?? I have to say I had to do some major physical work the other day and knew I would pay for it for days so I was thinking back to when you have surgury they always say stay ahead of the pain so I alternated my pain and muscle relaxer pills while drinking a gallon of water and wore my giant sunglasses and big hat as well ( only nice day we have had). I think it worked pretty well- that was Monday and other than beign slightly crippled - hot baths, ice packs and the pool I did ok- today is Wednesday I had to lay down a bit. My hands hurt so badly from holding the rake but that so far has been the worst of it. I think my plan worked pretty well. I must say I am prescribed these medications and am not offering advice. I just knew I had to get a lot of work done and I would pay for it for a week. Also I have not even removed my leaves from the beds yet. And when I do I will crawl like a baby and scoot on my bottom to get it done. No bending over or raking I sit in one place and jsut scoot like a toddler! PS I also have found that I can wrap my ice pack in thin kitchen towel and tie it to my body! It works well around my neck. We have all these tree trunks in the yard left from tree service and a family came by and wanted the wood for fire wood. Perfect! They came yesterday morning before school to grab a load I am thinking any kid that will do that ( ages 12, 14 & 16?) he is my helper for the summer. I probably won't even have to pay that much!!! Boy my kids were good at getting ready for school on their own etc but no way could I ever talk them into grabbing a load of tree trunks at 7:00 am before school. Yep, that little one is my plan out of killing myself in the yard this summer!! Maryb

OH my David, Glad you are ok. That first head hit is scarey stuff. Did you need stitches? Oh my bet you frightened you wife to death! It is such a relief to feel later after you gather your wits that you are ok. I have a couple of blind spots - 1. It causes me to turn shopping cart too early down the next isle. 2. When I bend over I think I am always going to hit my head on something as I cannot judge the distance and I freak a bit but good thing as I am so very careful. 3. I often think I am going to hit my head or someone is going to hit me if they come too fast at me and I do the silly dance ok more the silly arms like the woman in THE BIRDS fighting off the Birds in the attic. I have had a few good head butts with dogs hitting me at work. One I was avoiding a bite and she really hit me hard enough that my glasses flew far away. Glad to her you are OK Mr Dave Man. maryb

Weakness has always been there prior to SAH etc..somedays walking up the stairs I thought I could have a stroke, my head would bang and my legs felt like they were in quick sand. Same as folding clothing my arms literally get tired from folding. Somedays at least 1/2 the time I feel as if my muscles have no energy in them. I have tried over the years no wheat etc.. all the fads etc. I eat healthy , whole food meals 95% of the time, no soda or diet anything. I just lack energy in my muscles. Water exericse is the onlly thing that does help this for me. I feel refreshed and energized after the pool. Just want to add.... that yesterday we had trees cut down and we planned on doing the clean up ourselve Mind you that I suffer greatly from any physical work ( although my job is very physical and mental) and pacing does not seem to matter much_ I know people say it does but really it does not seem to matter to my body. It is where my body is at energy wise and than I have to just know my body will ache badly and I will get a horrible headache. The past several weeks I have tried a very gentle exercise routine daily alternating what I do- walking, swim, pilates, yoga etc.... does not seem to matter I was trashed. It is something I will ask my neurologist about next month. I knwo they say exercise is so important but ANY repetitive motion is awful for me. My fibro has always given me a stiff neck if I over do even if I don't sometimes. Along with the fibro I should add I have torn a couple of tendons in foot along with assorted foot issues as well as a painful cysts on bottom on right and another on top where my instep is so it adds to my frustration of trying to get anything done. Partial tear in my rotator cuff as well that had years of bursitis and tendontitis. Also if I get warm I break out and itch due to an autoimmune thing I have. So I really try to not over do any of these areas which is why a love the water! I worked a half day yesterday - not a good 1/2 day either. When I came home started to pull branches to the street for 4-5 hours. I took my mild pain pills alternating with my muscle relaxers as well. It was my experiment to see if I would be a crippled today. Wondering if I did not allow my muscles to tense up woudl I be ok? I took a hot bath later and laid on ice packs in evening. I am not bad so far today. I normally have to "save" myself for work so I can make a living. I have no idea if any of you get stiffness that adds to your pain etc.....and am not advising anyone to do anything different. Or take medication prior but it is something I have been thinking about with managing the pain etc. Do you all just get a headache or do you get stiffness and pain befor eheadache? I sometimes just go straight to headache. I however for the first time yesterday also wore my giant sunglasses over my regular glasses and a big straw hat to shield me from any sunshine which gives me an instant migraine. Seemed to work very well for me. I get a really tender head when my head hurts so laying down is difficult. My bleeds was on the back of my head and never had this problem before SAH/ Strokes. Most days I wear my glasses over the top of my ears! Oh such a site I am! PS I cannot at all tilt my head back to say look at the sky. I think this is only a "me" issue? Maryb

I know that sometimes or most of the time I just do not feel like talking. Lucky my husband understands. It is major just do not talk to me as I am overwhelmed or thinking or doing something. Good Luck. Mary

That garden plan is really something I need to think about. I would need a fence to guard off the tomato stealing dogs of mine. I think I may try more containers this year? I mentioned to my husband who I swear now is as tired as I am that I will be mowing with him this summer but I am using the riding lawn mower---- he says we have to get work done on deck first ...$$$$$$$$ the only time we use it at this house is to mow all the leaves in a circle in the fall. I use to love spring but now I am more like it can hold out a little longer as I am not ready to do any yard work on top of what I already am not getting done!

David, My dear man the flu is how having fibro feels to me so I have to add something more like is like the flu and you have 5 kids and they have the flu and you are a single parent and you have not slept in 6 years and you have a daily headache that increases throughout the day everyday and you can literally sleep anywhere because it is not just tired you are beyond tired and you can't process any thoughts, words or readings. The wrong words and letters come from you and you cannot find the right ones and you never ever can over do it as when you do you pay for it for a week. Your systems just shut down because your brain cannot process one more thing. It just is cooked, fried, done put a fork in it. The noise of the dishes being done is like a gun salute that startles you, you have to plan for noise early in day as late it the day you literally want to jump out of your skin. You wish everyone that has a loud mouth or screaming kids in a store can just for an hour know how rude they are and how it cuts through you like a knife. My husband has the TV volume on 25 and that is normal I have it on 9. Because my hearing is supersonic but if more than one person is talking I cannot hear either of you and if you add some back found music well just forget it. I wish there was a way of turning off background music. I wish there was a way to turn off all background noise without becoming deaf. I wish I could enjoy sunny days as now they want to pierce through my eye into my brain instead. I wish I could walk and not watch my feet or if on the sidewalk see my feet and the tree that is going to poke my eye out with my blind spots. I have a loud & fast talking co worker that I cannot get this through her head as I look fine, I sent her an article the other day, I am like an old person as the days goes on I become more and more unable to cope similar to alhemizers or a child with autism as their brains become tired and or evening is bad. She asked how much of my old self do I feel is left. I was like I am a completely different person. I can still do certain things because I have good coping skills but I have to THINK about everything I do and triple check it. I cannot think in noise, I cannot work in chaos. I have literally put my hand over her mouth when she asked a question last week and keeps talking - I have caught myself twice in the past month doing that to people as if it is ok? What have I become? So my dear man I have no analogy for you but I think it is like when you have a migraine, flu, was hit by a truck, have not slept in a month and are 100 years old at the same time. Sorry to babble so much, long day I guess. I am feeling it all today! maryb

Dawn, One of the treats for me is to go to my water aerobics class twice weekly. Otherwise I really have no social life. The water makes my body feel weightless and it is such a break from my normal pain. I would say 95% of the time I love my it when I am there. Even if I have a headache and a stiff neck I adapt and find a way to cope in the water. I also will join the local outside pool again this summer where I can go for a 1/2 hour little dip a few times a week. I am going to try really hard to put together a yoga routine for the water and do it there. Yes, in front of everybody! Once a week we use to go to dinner with neighbors but that is down to once or twice a month now. I will after this week have a schedule change of instead of Monday, 1/2 day Wednesday and Friday plus weekend treatments go to Monday , Thurdays & fridays all days 7:30-5:00 with weekend treatments. MY 1/2 days wednesday is my worst day of the week as there are 2 dr.'s and extra staff - too much noise, talking etc,.... I come home from this 1/2 day and spend the rest of it under my blanket on the couch. I however can work really hard on Fridays with a less more compentent (SP) staff and feel better. My husband does more around the house as well and is very understanding, our yard is huge and I have many flower beds, I was pleased with the drought last summer as weeds did not even grow. I have no idea how I will manage this summer, If I were to rake or pull weeds my hand would be as crippled as my mind is when I am work Wednesdays. I am thinking of doing 5 minutes a day to build up! I am keeping my head up and planting less and hope I don't fall down the rabbit hole. Maryb

I am finally after 5 days rested up after my 10 hour adventure to visit my son in a small city a couple of hours away. I was so proud and still am that I had this really big day by myself and everything was connecting so well. Also to know it is possible under the right circumstances that I can do it. But boy the fatigue has been overwhelming since. Pacing, I have tried to pace for years and I wish someone with my conditions would really tell me how they do that. I also have great pain, real pain if I exercise in anyway shape or form for days similar the same degree of fatigue. Like a walk, or such. I have read for years that you must keep up an exercise routine as well and it will make you feel better. Still waiting to get over that hump. I certainly do not over do that exercise at all. I take it so easy on my muscles and joints yet I ache for days upon days like I really over did it. This is the first time I connected the fatigue with the same feeling of pain from doing anything extra physically. Hum. Brilliant! Or maybe I forgot I have before??? Maryb

My mother and grandmother both had dementia / alzhemizers so I feel I have always had valid concern over this subject. My neurologist has told me I do not have dementia..... But when I look back at my mother I can now see years prior to her dx that she had signs of major depression, alcoholism & major withdrawl and I think some of it came from her not recalling things etc. She hated company and going places, being out of her routine. I looked up Seven Signs Of Alzhemizers and it was interesting to read. Not that I think we all have dementia. Just me. Well sort of laughing......I feel doomed by that thought somedays. But once again I could be hit by lightening or a truck way before that time comes. AS long as I am not wandering down the street confused I am ok with this all for now. I think. MaryB

Odd thread. Years ago before SAH I was in a department store and there was a mirror and I did not reconzied myself..many good laughs at that. I was like OH MY this cannot be good! But one thing for me maybe it is the neuro part of fibro etc is I am always suprised at how I look. It is not the OH my GOSH I am so old looking just I do not look like the person I think I look like in my head. I certainly do not feel like the same person at all.

I think working more has taken up your brain space. I have a horrible memory, never have had a great one. I remember so little of who clients at work are. For instance - I took a call back on Tuesday while I was there for a staff meeting. It was something I felt I had to personally handle and set up. It was a owner wanting a house call to put their dog to sleep. So I set it up for the next day with Kelly etc....... today (Saturday) in my bin were charts for me and I pick up that chart today and say "they put Tanner to sleep?". I would like to say this is rare but I say it and sometimes a few seconds pass and I "get it" but other times not at all. Mind you I was on vacation and just returned today. I stayed home and did nothing all week. BUT the other day I was out of town on my big day and my GPS was not turning on and I just picked up my cell phone and asked SURI to get me to the expressway. I normally cannot do that at all or erase my messages etc...

I forgot but had this happen again recently- I had pins and needles tingle from the tip of my nose to my bottom lip in a straight vertical line - very weird. It was always so weird, along with the over whelming fatigue, writing nonsense in charts ( I still lose my thought and start writing that makes no sense to me or anyone else when they read it like I started a new thought) after a few sentences and my writing was not staying on the lines, I also had more floaters in my right eye than usual, one night i had what was like a 4th of July sparkler ( do you know what a sparkler is?) go off in my eye and it last like 15 seconds. I mentioned it to my eye dr and was was unimpressed however the neuro eye dr was very interested in that event.

That is for sure Michelle I have never sorted and organized do much in my life since sah! My family of men hate it when I hold something up and tell them like they are idiots that this is something important do mot throw it away!!! I may however replace my underwear with something more sexy?