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  • 4 weeks later...

I went to Mexico for 2 weeks for sun and sand, rest and relaxation. Somehow I got the crazy idea that I might be fully recovered when I got back.

I think it's because it's been a year since my SAH and for 2 weeks I really did nothing except read and swim and eat and sleep.

It's not logical to be fully recovered. I don't know why there is this nagging and persistent part of me that pushes me into believing that. It sets me up for hard crashes into fatigue and feelings of failure. I spoke with my LTD (long term disability) advisor about it yesterday.

I worked 6 crazy busy hours with no breaks on Tuesday. I hope to work 7 hours (with breaks) today. Maybe a full day tomorrow!

Sandi K.

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Hi there Sandi,

Thought I'd look in on you and see how things were progressing. You postings on going back to work have been so helpful to me, as I've mentioned before. Its been at least 6 weeks since I was last in touch. I went away for 4 weeks holiday to South Africa (I used to live and work there) and then came back to start back to work - part time, building up.

 

I've just reported my first "real" working day experience on Rachael's Back to Work Posting for NASAH folks (yes, thats me). Wasn't so bad, and I think I coped quite well, but I'm with you when it comes to brain overload - only peace and quiet really helps.

 

During my recovery I have built up long walks and these have been a "life saver", not only getting me fit again (I'm walking fast !) but providing quiet time with just the breeze for company, and providing a welcome interlude for the brain. Right now I am still working only part time and still trying to fit in at least a 90 minute walk in. But winter is coming, the days are getting shorter and my hours are going to increase, so its going to require a lot of discipline to keep the walking going, and yet I know I have to, to provide that "brain space".

 

I am also working a a really restricted set of activities at work, and that has really helped. I know that if I was to try and load up my brain with all that I used to juggle pre-SAH, I would really not feel good. It can make me feel almost giddy if that starts happening, and I loose concentration completely. I'm guessing that's a pretty common experience ? I hope my ability to handle lots of stuff at once will build up as times goes on - it has improved already.

 

I guess we all know that we'll never be exactly like we were before SAH for a whole pile of reasons, but its not easy to accept.

Anyway please keep those updates coming. We're all with you.

Warmest,

Mags

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Mags, we have another BTG member who swears that long outdoor walks are absolutely necessary to recovery. Anya goes daily rain or shine and swears its the best way to clear the head and get through recovery.

 

Last week I worked 20 hours. Both Thursday and Friday were 7 hour days. Thursday night I crashed at home. Again I did not take my breaks. When I got home I didn't have my quiet time, I jumped right into dog walking, laundry, and making supper.

 

This is how I used to do things pre-SAH. I would work all day long, no breaks, eating at my desk, jumping from one task to another, running from meeting to meeting. Come home and carry on until bedtime. I so want to be well I thought I would just try and do all that on Thursday. I was a zombie that night and Peter wasn't very happy with me!

 

I want to be as productive as I used to be. I want to be able to juggle multiple things. I want to feel like I've got control of multiple things. This new way of one thing at a time is slow and I just don't feel like I'm contributing like I used to. I love my job and want to perform it the way I used to. I resent that I'm having to learn to do things differently when I used to be so productive with so little effort.

 

Friday was a bit better, I slowed down and put more focus into my tasks. I had only one meeting whereas Thursday I'd had two vendor meetings with several people.

Occupational Rehab begins Monday morning. The therapist is coming to my office and is going to help me with coping strategies for my 'mild neuro cognitive disorder'. Im feeling very optimistic that she can help me pace myself better.

Sandi K.

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Occupational Rehab began yesterday in my office. We met for an hour and a half. My deficit is mild and cognitive so my rehab is discussing how to handle situations that cause me stress and distract me which eats up all my energy. I suppose that rehab is traditionally thought of as physical exercise. My exercise is for my brain!

 

I will write in more detail on my day off, today is a work day. The most interesting thing I pulled out of it was that I have to learn to work with the 'new' me. Once I do that that it will be easier for everyone else to work with the new me. Weirdly, I went to a presentation with a couple of hundred people afterward and a colleague sitting behind me who I haven't seen in a year asked me how I was getting along with the 'new' me. I said 'you must have a friend with a brain injury' which he does.

 

The rehab therapist emphasized and re-emphasized taking breaks. Whether I think I need them or not. When at work and at home. Those darned breaks!

Sandi K.

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Weirdly, I went to a presentation with a couple of hundred people afterward and a colleague sitting behind me who I haven't seen in a year asked me how I was getting along with the 'new' me. I said 'you must have a friend with a brain injury' which he does.

Sandi K.

I Love this!!!!!!

Keep up the good work!!!

Lynne

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So glad the occupational therapy has started for you. Sounds like it will be very valuable! Can't wait to hear more about it - helpful for those of us dealing with similar situations, thank you!!!

Since I've started my little cookie business, I've found I'm pushing myself even harder and set high expectations that I'm now realizing were a bit (ok, maybe a lot) to high. Good reminder about taking breaks.

 

Your recent posts about missing the "old" you really struck a chord for me! You said exactly what I've been feeling lately. Just when I think I'm accepting the new me, doing well, etc... I think I'm going to be back to normal, and then wham! Reality. Ouch! Still working on that acceptance thing. I know it's a process but for some silly reason I seem to forget that bit :roll:

 

Hang in there, hon - you're doing it and encouraging all of us along the way :biggrin:

Big hugs,

Carolyn

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Hi Sandi

I agree with the rehab therapist, you may think you can do without breaks but your brain can't! You'll find that you are actually more productive if you take breaks. They don't necessarily need to be long ones but 5 minutes here and there makes a difference.I used to go to the loo, switch the light out and just sit for 5 mins in the dark, close my eyes and do breathing exercises. This gave me a bit of a boost and stopped my brain getting that numbing sort of feeling.

 

You have to give yourself credit for just how much you are able to do! Remember that we go through a grieving process because we no longer are quite the same people we used to be. I think you are approaching the 'acceptance phase', which comes after 'denial'. A perfectly normal range of emotions to have to go through. Also, remember that a 'new me' doesn't mean a 'lesser me'. Yesterday my line manager approached me asking if I would be interested in a promoted post that may be available next year.

 

The old me would have jumped at it and relished the pressure. The 'new me' didn't even have to think about it, when I thanked her and said no. I really don't want pressure from work to have an affect on family/leisure time. But how good did I feel that she saw past the brain injury and thought me capable of doing it! She has asked me to think about it and she will speak to me again after Christmas but my answer will still be no.

 

I much prefer the 'new me', she's so much more laid back and still, 2years & 10months post SAH, does not get angry. But it took quite a bit of soul searching to accept the changes in me. Sandi you really are doing so well and are such an inspiration, keep up the hard work, just take it easy now and again! :)

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Thank you so much for the words of encouragement and sharing your experiences as well. It really helps.

 

My first session of Occupational Rehab was a 1.5 hour discussion where the therapist gave me suggestions on how to handle situations that are frustrating me which cause my energy to dwindle.

Taking breaks is the biggest and most important point. We are trying to make my day last from when I wake up (for me that's usually 5am) to when I go to bed (usually 8 pm) These hours are different for everyone.

 

The point is, I want a full day and need the energy to get me through a full day.

A 'full day' doesn't just include work, it's the entire day and so breaks should happen both at work and at home. She stressed how important it is let our brains rest. Liz, I really like your suggestion of shutting the door and turning the lights out for a few minutes. My first thought was 'do people really do that?'. See how important it is to share on BTG!! I would never have been comfortable taking 5 minutes like that at work before. But I will now. It's cold outside and the weather isnt as inviting for my walks around the building so a few minutes with the door shut and lights out to rest my brain is my plan of action!!

 

I've also begun standing up from my chair and stretching. Sometimes just a stretch and look out the window is enough to breathe some energy back in. I've begun taking breaks at home too. I'm not getting as many chores done and things take longer. It's too early to say if this is making a difference but I'm willing to do whatever is suggested.

 

The therapist helped me with my schedule for the next 6 weeks. I had planned to ramp up my work hours. She has scaled me back. She has explained that I need to reach a point where I can manage the hours I'm doing and be symptom free. WHAT?! Symptom free??? So most weeks I have two days where I work 8-3 and one full day. Days where I have three back-to-back meetings I only work 4 hours. WHAT? I'm so grateful for her help.

 

She explained that my method of scheduling (adding hours every week or two) meant that I was on a continuous roller coaster of feeling really good and then crashing shortly after. Up and down. Yes, she's right. Her way of scheduling is meant to keep me feeling on an even level, no crashing, no hitting the wall. She explained that it's difficult this time of year with extra festivities (Christmas) so even more breaks and scaling back on scheduling may be required.

 

We talked about how frustrated I am with not being able to multitask. She gave some phrases to say to say to my staff. 'I'm sorry, we are dealing with an emergency outage right now, if your concern is regarding something else can you please wait until later?'. It seems so simple but honestly, that phrase just isn't something that would come to mind for me because the old me could juggle multiple questions and issues at one time. I instantly feel like a failure when I get brain freeze now and can't do it. Having someone give me the words to say is a huge relief!

 

We meet in January next. In the meantime I am to practise all of this.

Sandi K.

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The first session and so many good points came up Sandi. I was especially interested in the part about being able to work certain hours symptom free before adding more hours. For me that would be something to think about in my at-home life now and it certainly did make me think! My aim would also be to actually function for a full day.

It all seems like common sense but it isn't so clear until someone points it out. Looks like your sessions with this lady will be well worth the time you both put in.

Roll on January & some more tips :-D

Well done Sandi

Michelle xx

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Hi Sandi,

The therapy sounds like its really trying to get you tuned in to protecting you from yourself - rather than others reminding (I'm guessing forcing is the right word, sometimes :roll: )you to take a break. That has to be the right approach, but I'm still at the stage where I feel like I have to push things just a little bit more each week.

 

This is my 4th week back at work. Had a couple of long days last week, and then this week was away for 3 days. Overall I've coped well but have to accept that I need the day after to recover and I need to make sure that I am in good shape before embarking on these things. If nothing else I have at least grasped something of the concept of managing my spoons. But isn't it so damned frustrating that you can't live life as you used to ?

 

Last week was the first time I had seen my work colleagues since SAH. I was touched how those I consider know me well seemed truly concerned and pleased to see me looking so well (that's all the daily walks along the sea front for many weeks!) However, there were others who would not look me in the eye, and still others I caught giving me a rather sideways look trying to see if perhaps there was something they could see ... some scar ... or some other physical sign. Thanks to this website, I was at least prepared for these very mixed reactions !

 

Have you found that you've got progressively more fatigued as the weeks back at work have gone on ? This is something which I am starting to consider. From the outside I look and seem pretty good, so a real danger that people believe you to be back to normal, but the hours are building up and I expect in the new year there will be more pressure (probably from me as much as anyone !) to expand the number of things I engage in at work. That's when I'm expecting rather more of a problem with accumulated fatigue. Its not easy to admit when you can't cope - least of all to yourself. And I can see from what you have written that you are craving normality (a sort of pre-sah) just as I know I do, and then get quite frustrated when the brain refuses to play that game.

 

I start at a therapist next week. It remains to see if she is able to turn me into a well adjusted human being (was I ever before ?????), at peace with the world and my condition ! I'll make some postings over the next weeks on what I learn along the way. Thanks for letting us know about your experience. Keep those updates coming, although I know I've found it much harder to take the time to get on Behind the Gray since I started back at work.

Go well and good luck,

Mags

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Mags, absolutely yes it seems to be getting tougher at the moment. The fatigue is a heavier blanket to lift off and is progressively worse as I build up my responsibilities at work and add on more at home preparing for Christmas.

 

Back in August or September when I was working 4 hours Monday, Weds, and Fri my GP warned me that the move up to that schedule would wipe me out at first and to expect to lay flat the day after work. I was tired but still able to fit in a small exerscise routine, some housework, and running errands.

It's now that I understand what she meant. I ran out of energy yesterday at 10:30 in the morning on my day off and spent the rest of the day on the couch. No TV. Just looking out the window and being on my iPad in the quiet. My brain had had enough. It was like going backwards months. There was nothing left in me.

 

I haven't been exercising since November, my house is a mess (thankfully Peter picks up but he's frustrated), and I'm dragging me feet, my vision is blurry, and so on.

My schedule at work is fairly constant now that the rehab therapist has helped with it. I'm taking more breaks than I ever have. What's changed is the added errands preparing for Christmas and some added responsibility at work. I've taken on more tasks at work because I want to feel more involved. I don't feel stressed by it, I think it will be ok once Christmas is done.

 

It's deflating to have been on a roll moving forward and then to be cut down by fatigue once again. It's surprising to me that the shopping that comes with Christmas is having such an effect on my overall well-being. I'm not even doing very much, Peter has done most of it. I expect it will take a few weeks of routine after Christmas to start feeling ready to add hours again. My rehab therapist has certainly taught me the concept of looking at my day as a whole and not just my work day.

Sandi K.

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Hi Sandi,

It's never good when we take a backward step but it's encouraging for you to know that the extra rushing around at Christmas may be having a temporary negative effect. As always, that's common sense and, as always, I didn't think of it until someone else pointed it out! I think even the constant thinking about what you still have to do before the big day grinds my energy levels down before I even start any of the 'doing'. It's helpful to be reminded that this busy time will take it's toll. Thank you :-D

It's great that you have felt able to take on more responsibility at work, another massive step in the direction you are aiming for. Well done you!

Michelle xx

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Mags I found the fatigue building up over the weeks. My first return to work wasn't a success at all (I've written about it before) and ended up being signed back off sick after 11 weeks. I had worked up to 12 hours per week but the pressure from my then manager caused me to get ill with work related stress. She took the view that as I was back at work then I was better! After another 4months of sick leave I was ready to go back to work but occupational health advised that I shouldn't return to that office, so I was redeployed. By then I was 17 months post SAH and I went straight back into 35 hours per week. I managed these hours and even managed to cope with learning a new job.

 

But I was unable to do anything else, I had no energy for cooking or housework and weekends were all about recovering. I coped with 35 hours for 4 months. I work in the NHS within Psychological Services (has to be the very best place to work after a SAH!) and after a discussion with the consultant psychologist I decided to cut my hours back to 18 3/4. I now work Monday, Tuesday, Thursday afternoons and a Friday 9.15 to 4.30pm. I need my Wednesday off.

 

 I haven't looked back since cutting back on my hours. I can cope with it all, housework, cooking, shopping etc. I had even set myself the goals of getting back to knitting and reading books by the end of this year. I've lost count of the books I've read and have even knitted my sons cardigans for xmas (such a cliche, lol). I still get bouts of fatigue but I give in it to it and it does pass, I've accepted that it's part of my life. It all about pushing things but also accepting when to cut back.

 

Sandi some really good tips from your therapist. Hopefully when you get used to working the breaks into your day you'll start to notice that you're coping even better. I still have my 5 mins here and there when I'm at home (although no need to hide in the loo, I sit on the sofa lol!)and what I find is after several minutes I get a rush of energy and I know it's time to continue with the chores.

 

Even when reading or knitting, I take little breaks. This stops me getting that horrible fatigue that feels like a slowly deflating balloon. My GP once told me that if I use up all my energy then it's like empyting your bank account. It's so much easier to save and watch the balance increase and life is much easier with a bit of a cushion but if you have a spending spree and the account is empty, then it's so much harder to start saving again. I hope you have a restful weekend, take care.

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Hello,

I had a huge setback Thursday as had to go to ER due to exhaustion. I had been up to 28 hours a week but a few long days here and there killed me. I doubt my company will let me work part time forever so I had been trying to gradually increase.

It is everything I can do to get up, go to work and come home and collapse. Course I'm only 4 months post SAH so it will get better?

Sandy- Are you eventually working back to get to full time 40 hr week status? That would be my question. And also my dilemma. I kinda feel like a liability at work only working 28 hrs. My co-worker who sit next to pisses and moans when I come in at 10:30am like "oh, its been so busy" and "oh, I havent gotten anything done". I want to tell her to shut up and I'll trade her her job for having half a brain.

I think i better head back to the duvet (sarah) before I get gassed.

Thanks,

David

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Michelle, agree totally that it all seems like common sense but honestly, we do need to hear it (read it) because it just seems too simple to be true I guess - until someone says it.

Liz, very good post. Laughed out loud right where you wrote 'lol'! Thank you for including so much detail, it's all in the detail that helps. I like the sound of your work week and being able to cope with household chores and enjoy hobbies must mean you are finding the right balance.

 

Mags, I was like Liz with my first return to work. I returned too quickly just a few weeks post-SAH and worked too many hours and lasted only about 6 weeks. I was sent home by Occ Health and didn't try again for 4 months. I think it's really easy to get so buried by fatigue and denial that you try to hide your symptoms from everyone including yourself. Something to watch out for.

 

David, my original goal was to get back to the 40-50 hour week I used to do. If I can get there it will be great but my rehab therapist has me working toward smaller goals-more achievable. My goal is to get to three full days a week. We will reassess once I'm there. I have a supportive employer and we have restructured at work to accommodate my schedule. I know I'm very lucky.

I hope you are able to scale back so you can recover sooner.

Sandi K.

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Hello All,

Well, I've logged on to have a little break from work. I really am struggling with concentrating on any task for very long at the moment. Its very frustrating and bothering me more and more, but I also sense this is an aspect of accumulating fatigue. That combined with the "fog brain" that descends, helps me to remember that I am probably not quite as better as sometimes I may appear !!

 

This is a completely unrelated question, but has anyone reading this suffered from their body thermostat having gone a bit wonky since SAH ? Pretty much everytime I eat, or have a hot drink, I suddenly get very hot, then I cool back down to normal again. Its a sort of hot flush but somehow not the menopausal thing. More like the body figures it has got fuel to burn and then goes mad burning it for a few minutes until it calms back down again. Its driving me nuts at times !

 

Tomorrow is my first session with a CBT Specialist. Occupational Health thought it would be a good idea, and maybe it will help. I'm just worried that I start relatively sane and come out with "issues" :lol: . I'll post my thought on a new string as that gets going.

 

I hope I haven't moved to work too much, too soon, but I think only time will tell. Luckily I seem to have very supportive management, although like I've seen others express, there is a sense of guilt that you can't pull your full weight, and a nagging worry that very soon they will expect you to be normal some time quite soon.

 

Sandi - I can absolutely relate to the things you say about Christmas stuff adding too much too the mix of stuff you can handle right now. I've been thinking much the same thing. My poor hubby has been on the end of me issuing my "commands" - I've found since SAH that I can't be bothered with quite the same level of nicities. I am very polite (sometimes I think I'm overdoiing the politeness) but I have become very direct in what I say, so there is no doubt what I mean. I feel sure this may get me into trouble at some point ! I guess if we think of our lives in terms of the Spoon Story, then it sort of figures why Christmas is adding another stress which makes what we can handle more of a challenge.

 

We're using the old grey matter thinking about the many logistics and extra things we have to get done for Christmas. Even the social occassions, I find I have to limit - and thankfully this year, I've been able to avoid most of the round of Christmas parties. However, a friend has invited several of us for supper on Christmas Eve, which is very nice. Now I find there's another bunch of people who are doing a drinks party beforehand which we are all expected at, and I'm thinking "I just can't handle all this". One or the other, fine, but both ...... aghhhhhh.

 

I know that its only people of this support group who will understand what I mean. Whereas some of our social group clearly think I'm rather anti-social, because all they see is that from the outside I look absolutely fine.

Ok - back to work. Take care everyone, and enjoy getting ready for Christmas ... only 6 days to go.

Mags

xx

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Mags, when you get a chance do let us know how it went with CBT.

 

I relate very much to your comments about being more direct and short with people. I absolutely do the same. It is as if I only have so much gas in my tank so I'm not going to use it up on a bunch of words, I say what's needed and then carry on. Being so direct does have its problems. Friends and family have thankfully joked about it and lovingly made fun of how bossy I've become but my husband has had moments of protest!

 

At work however other managers (peers) have discussed their concerns with me about how direct I am. I used to be so nice and now I just get to the point. Sometimes they don't like the point I'm making. I've explained this is due to my brain event but that doesn't mean what I'm saying or the point I'm making isn't relevant or valid. I'm still getting used to this new me so it will take others time to get used to me as well.

Sandi K.

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  • 2 weeks later...

I have been reading through this thread and although I get sidetracked very easily I have found it very informative. I am going through challenges at work right now and it makes me feel good knowing I am not crazy or lazy. I am just recovering and coping the same as everyone else. I think it is time for me to sit down with the human resources department and explain to them the challenges I seem to be facing.

 

These are the same challenges I face at home, but at least at home there is no pressure to perform.

I do have a letter from my doctor which I need to submit when I return to work today after my Christmas vacation. I hope this educates the correct people about my abilities and disabilities. While it is never comfortable to say I have some minor brain injuries and disabilities due to a SAH, I am thinking it is time for me to stand tall, accept who I am and be proud of the fact I am learning to cope.

 

Thank you for sharing you life and for helping me validate the things I am going through.

Carl

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Thank you Louise,

I went back to work one month after I was released from hospital, because I was bored stiff at home. Well that lasted 2 days! I took another month off and then returned. I took plenty of vacation time after my return to work too.

I did run into some problems at work recently and I am trying to educated myself and my employer. I have to admit than many of my post SAH symptoms were not apparent to me or my employer. As I am becoming aware of my limitations I am documenting my days and the progress I am making. I didn't sleep more than 2 hours last night, not sure if I am anxious about work or about submitting the letter, either way I have a day ahead of me :).

Hopefully I will sleep better tonight.

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