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Hi Macca,

'Man, I feel like a woman' made me laugh so much - keep that sense of humour, it is the best medicine. It is hard to have a good day & then be floored the next day but enjoy the good days when they come & it will all improve in time.

Take care

Michelle x

Also, Sandi K sent me a pic of where the pituatry gland is - my mind still boggles :crazy: and I am still not sure if the blood may have affected that area or not :roll: my bleed started behind my left eye so who knows but please let us know how the HRT goes!

Edited by goldfish.girl
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I am so sorry but Michelles post made me laugh so much..I might wee myself .lol

So Sandi sent you a pic of pituary gland..lol....Sandi you never sent me one haha sorry got giggles bad Win over a serious subject.

I cannot stop laughing...it has cheered me up so much...Thanks Sandi and Michelle hope the wallpaper goes with pic ha ha

Love

WinB143 xxxxxxxxx Song ..When your smiling oh when your smiling the whole world smiles with you..come on sing up or Sandi

will send you all pituary pic lol xxxxxxxxxxxxxx

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  • 2 weeks later...
I also have a print out from the University of Washington Medical Centre that says part of managing fatigue means exercising regularly.

However, I'm finding myself crashing when I'm already fatigued and I push myself to do a minor 3km walk on the treadmill in 20 minutes.

I really miss the feeling of a good workout. A few months ago my psychologist said it might not be a good time for me to be concerned with exercise.

But it seems there are mixed messages? Karen, its similar for me in that if I'm already covered in blankets of fatigue then the treadmill or bike only send me horizontal and I often have tears following too because I'm so tired and feeling defeated.

Sandi K, I am so with you!!!!!!! All the 'Professionals' seemed to be encouraging me to "Build up stamina". I don't think there is anything out there that actually sates that that's what SAHs should do...the professionals are just thinking that's what everyone should do to rehab back to society. Well, for me it's the totally wrong thing. I had to realize this for myself, and it took a long time to actually figure it out...I just need to take it easy and tone down what I considered a "Work-out". Now I do a relaxing, restorative yoga and that's all my body can take! No more building stamina thankyou!

~Kris

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Hello,

I call fatigue "my mountain". I feel like I'm climbing a mountain with no legs. And just hanging on the edge of a cliff. This week has been a little better though.

David, my legs feel the same as yours. The only exercise I find that works besides slow walking is yoga. There is something about innervating the slow muscles V. fast twitch muscles that makes a difference. I learned all about it in school and know that the motor-neurons all originate from where my SAH was, so I'm not surprised at all. But, what I didn't know is how they would feel and what that feeling translates into as far as fatigue.

I was so unnerved by the feelings in my legs that I wrote a poem about it and posted it in the green room.

Here's to our legs!

~Kris

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My legs bother me a great deal too when I'm fatigued.

A year ago I found yoga and it was so helpful with my balance and core strength. When my schedule became busier yoga was dropped off. I'm about to be off work again and I plan to fit some yoga in again. I'm sure it will help me to rebalance myself.

Sandi K.

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Dear LizD, Michelle(Goldfish.girl), Sallym25, kempse, Kris and Sandi K,

I now have my hospital results and it seems I am indeed short of Growth Hormone. My symptoms reflect those reported by other organisations ie decrease in strength, stamina and exercise capacity, excessive tiredness, anxiety and depression, feelings of social isolation, increased sensitivity to cold or heat and general reduction in quality of life.

my hospital is to call me in for further, more detailed tests with a view to putting me on HRT (there's that 'Man I feel like a woman' feeling again, perhaps I should add that to the above list!). In the meantime, I'll have to live with the tiredness etc but be happy in the knowledge that at least there is something they can do about it. Not everyone is that lucky. Then, when I start, maybe I can sing 'I'm a Man' (old Chicago hit from 1970). I'll post how my treatment goes in due course. Hope everyone is ok. Maybe one day I can keep up with Teechur, who sounds amazing!!!

Best wishes Macca

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Thank you Macca!

I'm also going to look into this to see if it's the cause of my fatigue etc.

In a way, I hope it is. It's great to think there could be a treatment to help these symptoms. I'm very happy to hear that there could be something to help you.

Good luck and I'll look forward to hearing more as you progress :biggrin:

Michelle x

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Thanks for giving us an update Macca - look forward to hearing more from you when you have had your further tests.

I have an appointment with my gp tomorrow morning, so just hope I don't forget to mention it - was 'poor memory' on the list of symptoms by any chance;-)

Good luck with it all,

Sarah

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Awesome to get an answer! That's often all we want, isn't it? Even if it isn't fixed right now, just knowing there is something that can be done makes us feel more in control.

I'm not amazing, trust me. I've done nothing today but work half a day and go to the doctor, and I'm sitting here in my chair so tired I can't hold my head up. Someone is coming to get the key to the barn in a few minutes and when they go, I'm taking a nap.

Got answers from my doctor today too...basically he said what I felt; I went back to work too early, I've done too much too soon, and I need time off and more rest. I needed to hear it, though. I also needed him to have my husband hear it (and needed my husband to agree), and needed his note so my boss could hear it. It may not be the final answer, but it's an answer and I'm happy to have confirmation that it is still early in my recovery, and I'm not crazy. (Or at least I'm not any crazier than I started out.)

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Tory,

How's your headache? It sounded like a banger. Do you have something to take to make it better? Are you gonna hopefully get some time off?. 5 weeks ?? is too soon to go back to work for anyone. I would say 3 months for a minor SAH and as much as you need for anything worse. Who am I to talk I just signed up for more hours (only 2) per week but I have to for the money and health insurance for my wife. When you get better you can be my trainer and get my butt in shape. I've lost 20 lbs but more to go. hope you're feeling better.

David

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Morning - I did remember to ask my gp about the possibility of damage to the pituatary gland, but he checked my records and informed me that my bleed was nowhere near the pituatary gland. Ah well I'd no idea, worth a try. He has however arranged for me to have some blood taken next week to do a couple of other tests. He didn't think it would be the atenolol that was making me so tired either, he seems to think it is just everything that I have to contend with in life itself that is enough to make me so tired. He told me again what an amazing job I was doing holding everything together and was pleased with my blood pressure (122/80). He wants to see me again in a month although he said I could ring for the blood test results a couple of days after they've been taken - think I'd better go and put these appointments on my phone reminder otherwise I will forget them altogether and there will be no blood to test!

Sarah

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Tory,

How's your headache? It sounded like a banger. Do you have something to take to make it better? Are you gonna hopefully get some time off?. 5 weeks ?? is too soon to go back to work for anyone. I would say 3 months for a minor SAH and as much as you need for anything worse. Who am I to talk I just signed up for more hours (only 2) per week but I have to for the money and health insurance for my wife. When you get better you can be my trainer and get my butt in shape. I've lost 20 lbs but more to go. hope you're feeling better.

David

Headache is indeed a banger. Still going on today.

I have two more weeks off of everything, including my business (I made alternative arrangements). I am to sleep at least 8 hours and nap once a day and not take anything else on. I do have Vicodin for the pain but I don't like to take it.

After two weeks I go back part time and then see my doctor. I am hoping that takes care of the headaches and fatigue. My goal for the time off is to do it his way; only walking, not filling my days, naps, rest.

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OK, here's the weirdest thing...

I woke up at 4am (which I'm prone to do now) and 1/2 of my body was so tiered and the other 1/2 was so NOT tiered. I felt like 1/2 of my thinking ability was also tiered and the other half not. Weird: I didn't know that that could be possible. However, this gives me hope that maybe if 1/2 of me can be 'Totally up' then ...???

Here's to being weird,

~Kris

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I know fatigue is taking care of a large portion of our lives. Last night I maybe got 30 minutes sleep. I was fretting about work and had a bit of a headache.

I got up at 430, even before the alarm went off and made lunches. Took my pills, fed the cat, made coffee and had breakfast.

I arrived at work about and hour and twenty minutes before my shift.

I was sent out to do something new this week which is a nice change. I took advantage of my lunch break and had a 20 minute cat nap.

My partner mentioned how slow and doggy I was today.

At the end of the day I stopped in to see the shop steward to see the results of my meeting I had from 2 weeks ago. I am not sure if you remember but my doctor had requested a midweek break and I had ample sick time banked away. Over 830 hours banked.

Once again I was denied. This time was a simple verbal denial. Being tired or fatigued is not just cause for sick time.

I am so frustrated I could scream, at the same time I am so weary I dont have the strength to do it. I almost feel like shutting down.

The union will follow up with a letter to the managers but if they dont recognize a doctors letter why would they recognize the union.

I do see the doctor again on Thursday. It has been about 6 weeks since I submitted my letter. I saw the doc about a month ago but he has been on holidays for a few weeks. I will talk to him, see if he has any other ideas. It is frustrating since I was in such a hurry to go back to work. I worked full time from two months after the SAH, I have had no neuro specialist or therapists or any follow up other than a treadmill test for fatigue about a month or two after I went back to work.

I did have a week off on vacation and visited our daughter, that was wonderful. I have more holidays I can take too so that may be an alternative. I could use a beer :) Maybe I will have a bottle with supper tonight. Then an early night :)

It couldnt hurt.

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I'm so sorry Carl! My boss just took the letter and said "Okay! We'll work it out." My doctor put me on two weeks off then on half time, and it's up to me to decide how that half time works. That is how it should be! You know they're just trying to push you out early. Grrrrr.

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Hi Carl,

I'm really sorry that you work are treating you this way. I know from personal experience how awful it is after you've gone straight back to work & tried your best to carry on as you were before. It's such a kick in the teeth to then be treated so badly.

I have a feeling that you will not like or want to hear this.......I know you mentioned that you could retire soon but staying on increases your pension and that you want to fight your corner & stand up for yourself against the way your employers are treating you. I also never wanted to leave work for financial reasons, because I wanted a new car, because I wanted to set a good example for my boys, because I wanted me life to continue as it had before etc, etc, etc. A comment from one of the lovely ladies at my sons day care struck home for me 'what would be the point in a new(er) car if you have to almost kill yourself trying to work for it, a new car is no use if you're not around to enjoy it'. Wise words.......

I know you don't want to give in. EVERYONE knows that you are being treated unfairly but most importantly, some battles are not worth the fight especially if they are affecting your sleep and your mental well being as well as being physically too demanding. Your health has to come first Carl and these people are clearly not intending to compromise or help you in any way. Could you happier retiring sooner with less money & a far better quality of life?

A lot to think through. It's just a suggestion to look at things from another angle.

Don't let them stop your positive outlook on life :-D

Michelle x

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I often wake up and can't get back to sleep and sometimes it's even way before 4:30am, Carl. I know that the pons is what helps our sleep and wake cycle, so if you're pSAH then that's where the blood was. It still is terrible when it happens and I get so slow the next day too. But, I can't sleep...I'm just fatigued all day.

I hope you can get stuff worked out at work. Do you have the fight in you? I don't think I would at this point. Go for it if you do though, it's your future we're talking about here...it's no light matter.

~Kris

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Hi Carl,

I know exactly how you feel. They are looking at you at work and thinking,'I can't see anything, he looks alright so he must be alright, he's just making excuses.' Carl, I went back to work too early, I am at my doctors again today with fatigue. There is nothing more debilitating than fatigue when it doesn't look like there's anything wrong and there is no empathy from those around you at work. So you are actually fighting two battles - one against your condition and one against the scepticism of your colleagues. I live that experience every day at work, but I did not take my own advice that I'm giving now, but I am suffering from it and I am looking at early retirement now as I can't keep up the pace even though I've given it my best shot. I manage a team of 16 people who think because I am their boss that I am invincible and nothing happens to me! How wrong they are and I have told them so but it doesn't go in because there are no scars or plaster casts or bandages etc.

Do what is best for you Carl, there is always a way round things even if it means re-shaping your life and the way you do things. Life isn't a rehearsal and if those around you are making it tough for you, then they are not friends. The only way they will really understand is when something similar directly affectss their own life. Talk to us Carl, we really do understand. Good luck

Macca

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Thank you.

I know it is head games they are playing and they do not believe me.

I asked the union to represent me, which actually meant they were in the room while I did all the talking.

One of the things I was grieving was the fact I got a disciplinary letter that transferred me to another postition on a temporary basis till they could evaluate me and my behaviour changed.

Well it has been 6 months and I requested reviews and some timeline to the transfer.

The response was an alltime low as far as I am concerned. I was told by the superintendent that they dont have to give me a time line and they dont have to give me a review. I felt like I was dealing with children. LOL it is becoming a joke. I guess it cost lots of money to say to an employee "you are doing well" or "you need to pull up your socks"

I see the doctor tomorrow, I will see what his response will be. There are other courses of action, like early retirement and find another job. Or even civil action but I am not sure if I am up for that battle.

In the mean time I will hold my head high knowing I am not lazy or crazy.

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My bleed was anterior to the pons (in front of the pons) with the flow going toward the back and pooling in a trench between nerve bundles. Haven't figured out what this exactly means yet but I suppose I'm lucky that I sleep as well as I do. I have some nights of insomnia but only a couple of times a month.

Macca, I completely understand what you mean. Although my team of 20 know I'm not well and are concerned about me they still see me as their 'fearless leader' able to take on the world. Yesterday I just about lost it several times, barely made it through the day. It's a big decision you are coming to, early retirement. How early is it? Will your pension kick in? I hope you won't have to manage a gap in finances as well as working on brain recovery at the same time.

Carl, it must be so deflating to be treated this way after giving 30 years to this organization. You've been loyal, where is their loyalty now that you need it? And what's with your lame union reps? Just sitting there as observers. Useless. It must be tempting to push this forward, the whole thing is unbelievable. I can see how you would also be wondering if it's a healthier option to walk away and recovery without stress. You have to make the choice. Before you make your decision it might be worthwhile to do some googling on Canadian Human Rights and working in a respectful work place. Canadian law very strongly supports workers who are being mistreated in the workplace. I don't know if this situation fits there or not but googling doesn't take much energy. :wink:

Sandi K. Xoxooxx

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Carl,

like everyone else who has followed your posts, I know you are neither lazy or crazy, you just want to be better and have some support & understanding along the way. You will ALWAYS be able to hold your head high, however it turns out and make sure you keep a smile showing your inner belief in yourself on your face :-D I think I was extremely lucky that I had a Union Rep who had also suffered from a brain condition fighting my corner at work. However, as a Union Rep, if he/she doesn't 'get it', there is no excuse for yours not informing themselves and acting appropriately on your behalf.

Macca, I absolutely hear and understand where you are coming from in that post.

Good luck to both of you!

Michelle xx

Edited by goldfish.girl
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