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Hehe, Macca, your "listen to our own advice", advice, tickled me this morning, as I have been rather beating myself up of late. Ironically, I was listening to a friend's problem the other day and the words "stop putting so much pressure on yourself" fell out of my mouth......to which my friend fell about laughing in a pot kettle black way!

 

Even though it is 28 months since my SAH and clipping, I am still finding challenges both at work and in my personal life, which serve as reminders as to what has happened and that I am not quite the pre SAH person I was and that adjustments need to be made... no matter how frustrating that can be.

I'm up to three half days at work now and it is taking a LOT of getting used to... but we keep going....and at very least, it will allow me to see truly what I can do...

 

So for now, still appreciate all your words of wisdom and support.. X

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I've always found it easy to give advice :wink: Whether or not someone is asking for it!

Macca, it's very true that situations seem so simple when it's someone else but for us, we can't see it objectively and we are forever testing ourselves. Always trying to do things the way we did before SAH

 

Didn't Einstein say something about not being able to change the outcome if you keep doing things the same way over and over again? However that quote goes it really resonated with me. It was like a second bang on the head telling me I needed to change my approach. Yet- I still catch myself trying to be as productive as I was and feeling down when the fatigue rolls in like a big black cloud.

 

There are a few in this thread who have changed their jobs and it has worked well for them. Macca, it takes energy to do that too - finding a new job and learning a new job. I think it might be worth it though if you are very unhappy with where you are and if you are unable to scale back. Are you able to change roles with your current employer?

 

Mel, I'm about where you are in shifts. Was really hoping to add hours by now but still not ready yet.

 

Mary 'learn to pace' - seems like the hardest thing ever doesn't it. Does learning to pace come easy for anyone?

Sandi K.

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Mary - thanks for thinking about me!

 

MelS -hello, nice to meet you! Glad I made you laugh. It seems that on this site we all have something in common and although distance is between us maybe we're not as far apart as we think! (metaphorically speaking of course).

 

Sandi - it's uncanny how parallel not only our lives can be but also our thinking! Keep giving your advice, there are many who appreciate it even when they don't reply - if nothing else it lets them know they are not alone and that can only be a force for good! Thank you for being there for the rest of us! A gold star for you!!!

Macca

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Hello all:

Hi all BTG Back to Workers. Been busy at work and not much energy at night to post. Still working 40 hours and making it somehow. It has been busier than usual with tax season, proposal letters to clients and yesterday had a system upgrade that had some major bugs and was a disaster. Not our fault, it is the System Designer.

 

I am glad to see everyone is plugging along. In 3 weeks, we go to our summer schedule which means i will have to work four 9 hour days and 1/2 day Friday. Now how the heck am I going to work 9 hours a day when I cant even work seven? Any advice Sandy? BTW, my company has decided I'm not sick any longer and it is a full time job. There is no stepping back. In the good ole USA, they are not legally bound to do so. A doctors note would be nil as it is a full time job requirement. Aint life grand?

 

I like my job and will muddle through the hours. Am I supposed have my wife support me??? I believe that I am surely capable of working around 25 hours a week at a healthy pace. Any more than that is pushing it. How many hours do my fellow BTG'ers think that they can actually PHYSICALLY work? Just curious.

 

I did manage to clean the house on Saturday. Maybe I'm getting better. I didnt spend the whole day in bed. i have to help my wife when I can because she does everything for me.

I hope my friends here are doing well and sorry I am not more positive. Oh and i called to rent a cottage in three weeks and the lady said "Aint life grand?" at the end of her message. Someday I will sing it from the rooftops but for now I'm happy to make it through a week at a time.

David

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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

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Hi David,

I am contracted to work 37 hours (42 if you include lunch). In reality I do quite a few more but don't get paid for that. I travel a lot. That combined with the work just eats my stamina like a Hummer drinks what you call gas! It's tough, so I am looking for a way out now. I've had enough, and at the end of the day nobody really thanks you for your efforts. Just do what you can do for you!

 

There I go giving advice again, Sandi, where are you?

I'm trying to follow my own advice, I really am, but sometimes it just seems like an unachievable wish list! getting new jobs in these austere times isn't as easy as it once was! But I'll keep trying!

Good luck David!

Macca

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When I was doing my phased return, I found 16 hours to be about perfect. I was managing to work and get other things done too while remaining cheerful. When it went up to 20 hours, that was too many. It's not that I wasn't managing as such, it's that 'cheerful' ran away screaming. I am contrated to 37.5 hours and if you include breaks, I am in work for 40. I've done these hours since Dec 3rd last year.

 

There are so many days when I could happily amputate my own head by 15:00 but still get through the next 2.25 hours somehow. I get home and do nothing else. I am in bed by 21:00 if I'm having a late night and if I go to bed any later than that, I PAY, usually with a complete inability to get to sleep which is still my main issue these days.

 

When I'm struggling, I like to think of this quote from the movie The Best Exotic Marigold Hotel: 'everything will be alright in the end and if it is not yet alright, then it is not yet the end'. It makes me smile :wink:

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Dawn,

That's a lovely saying and very astute.

The best exotic marigold hotel eh? Mine are yellow, not pink! Marigolds that is! ha ha! What colour are yours? I regret to say I haven't heard of the film - who's in it?

Macca

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Hi Macca,

It has Judi Dench, Bill Nighy, Maggie Smith and a few others in it. It's a proper feel-good movie well worth a watch. And in an attempt to pull the subject back round to the topic at hand, a lot of it is about doing something with your work and life that makes you feel happy and fulfilled :wink:

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Hello all:

Boy its been a tiring and soul crushing week. The level of brain use and demand just completely exceed our brain capacity. But I'll take it for now as we all have bills and the unemployment line is looong. Right now, I'm sockin a good chunk away for retirement and hope I make it there alive.

 

Dawn- You're right again dear. Thinking back, I think 16 hours is perfect. 4 hours aday with Wednesday off. Thats how I started. Anything past that is too much. With working 40 it is just torture. Are you able to exercise? We go home and collpase. So how do you exercise? Doesnt seem physically possible. Dawns says "happily" amputate my head. I understand, I really do. Mary and I say poke our eyes out with dull scissors. But sometimes that seems less painful than beating our heads against the wall.

 

Macca- We miss your wisdom on the sight my friend. Hang in there. You've keep me afloat. You had mentioned at one time that you had 3-4 years to retirement. Can you hang your hat on that?

 

Mary- I hope you make a good decision. You have plenty to handle and theres no way they would deny you in the long run. Who will I have to poke my eyes out with then huh huh???

 

Mel- Its nice to hear from you. Keep plugging, you will build stamina over time.

Where are ya Sandy, Lou, GG, Skippy, Wem? We need pals

David

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Hi All,

It's 4 months now since my return to work and I have increased my hours from 7.5 to 12.5 per week during that time. I have very mixed feelings about the whole work thing. On the positive side work gives me strucuture and a sense of achievement, but brings with it fatigue and an inability to do much else.

I also feel that the mental stimulation is improving my concentration levels, and probably my self confidence, which was practically non existent for a long time following my SAH. I have moved on from working on data analysis in isolation with no key deadlines, to directing a small team with a very specific deadline to meet!

 

The latter has left me wiped out, but exhilarated in the knowledge that I have been able to take on such a demanding assignment. I am still working from home, and managing the mini project through numerous conference calls. I am becoming guilty of falling back into old habits and not being able to put the work 'down' when I have completed my hours. I also have a sense that work colleagues who were used to the old me, probably expect more of me and to some extent are relying on me to work in that way. Not good.

 

It was always a worry for me that I would fall into that trap. I wrote a note to myself in my diary yesterday, to delelgate more and let others get on with things when I am not working! I will let you know how successful I have been with that one in the weeks/months to come.

 

If I am totally honest, if I did not need to earn a salary and keep my pension pot topped up, my ideal would be to find a volunteering role that helped me to build up both my physical and mental stamina whilst also providing the 'feel good' factor that work should give us, without the ever present fatigue.

Not sure where this road is likely to end, but I am hanging on in there right now. For me the single most debillitating aspect of this recovery is fatigue, which I guess would still be a problem without the work. Maybe if I manage to get the balance right, work may help me to manage the fatigue.

I believe balance is key, and I for one have not achieved that yet!

 

Good luck to all my fellow workers out there, we are amazing and we should not lose sight of that fact. Our good days at work are probably on a par with our colleagues' sick days. The only problem is, we are the only ones who really understand how diffcult it is for us.

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Here I am!!

I work from 9am - 4pm Monday to Friday in an extremely busy School Office. When I get home there are days when I too could "happily" amputate my head - but then more often than not, I have accounts to do for my hubby plus doing a School Administrators Diploma (school's way of proving they are investors in people!!).

 

I can cope with my school hours but back in 2008 I was working from 8.30am to 6.00pm doing a mixture of working with 2yr olds in the morning and then office work from lunch until 6.00pm - absolutely shattering but I enjoyed it. Now I do a job that I love (I do get 14 weeks off a year :-) ) but I don't think I could go back to a job where I was working all year round - I love the school holidays!!

 

It is a hard struggle and I think (if we possibly can from a financial and health point of view) try to regain some sort of happy medium. Unfortunately with unemployment being so high, its not as easy to swap jobs.

 

I really have no advice as I'm comfortable with my hours but I do really feel for those of you who are working 40 hours a week - I don't think I could go back to that.

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Here I am too!

40 hours a week sounds so beyond reach to me right now. I can't imagine it and I often did 45-50 and sometimes more pre-SAH.

 

Wem, our work sounds very similar. When I go back it will be project related. Starting small and working up. At first I'll be an 'extra' and then the plan is to move onto my own projects. It sounds wonderful and I'm excited! I'm also concerned though. I'm still at 9 hours volunteering and yesterday I came home so tired I went straight to sleep. I was ok an hour later but if it were a work environment with deadlines instead of volunteering I wouldn't last long at this point.

 

You are right in that volunteering gives me an opportunity to see where I am, what I'm able to do compared to before, and without the pressure of expectations to be who I was before. I'm so grateful I'm able to volunteer before going back to work and I can only hope that at some point I'll build my stamina and get back to paid work.

 

David I hope you get some good rest this weekend. Maybe check out the movie Dawn suggested. I loved it! It might give you an idea on a different way to make a living. :wink:

Hi everyone else! Macca, stay strong.

Sandi K.

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OK, I'm going to peep over the wall here & say that I don't do paid work any more, just voluntary work one morning a week & wait to be shot down :wink:

 

I started in Nov last year & finally, finally felt like I'd got to know how the staff along with building a rapport with the clients & equipment used to help them take part in the activity I help with. Last month one of the staff changed as well as a new client joining the group & I lost my footing.I really struggled as I had it kind of worked out after 5 months and any change was going to be hard to deal with. This month I can see how that change, whilst different is a positive thing in many ways.

 

Today, the activity I help out with had to be cancelled at the last minute & I was given the choice of staying anyway or leaving with their apologies for not letting me know sooner. I wanted to stay, I love learning what else takes place there. I was asked to take the chair exercise activity with a client. Oh My Goodness, it was a folder with instructions & diagrams, using left & right side. I almost fell off my own chair. I can not do instructions, diagrams, left and right without a pause to think about it, maps etc and that shone through :lol:

 

BUT I did do it, yes, badly, but I had help from another member of staff (maybe after she watched my effort & thought she'd really better step in :lol:) It was hard, it was confusing, it was scary and it was very different but I KNOW that I can do better at it if I am given the chance to practice.

 

I really could not do my old job, admin, but I know that I can do my new voluntary post with time & patience from the staff I volunteer for. I know I was getting there (until the goal posts moved today!!) There is no pressure to perform and support if I need it. There is time to learn slowly, time to get to know the people I am working with & what they are capable of too.

 

Obviously, with paid employment you could not expect this special treatment & patience from others as you are paid to do the job you applied for. But it is good, I enjoy it & being involved again makes me happy. I have no idea how I will cope financially when the benefits goal posts change AGAIN but I know what my learning ability is and I think I've proved myself in the meantime. Oh, and I have a tent somewhere :lol:

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Thanks to everyone for sharing their thoughts. It lifts me. I am trying now to get out. I suffer at the moment with waves of depression, fatigue and lately some headaches have started returning. I go on holiday next week to Benidorm in Spain - just for a week - not helped by my workload, nor some of those who should know better. So don't worry about me if you don't hear from me - I won't be able to hear you because of the sun on my back!

 

David - yes my scheduled retirement is in 2.5 years, but at my current rate of attrition, I'll never make it - that's why I'm exploring early retirement. There might be a slight financial hit, but if it saves my sanity and relieves the mental pressure it will be well worth it. Sometimes I have to work away and that is why there are some breaks in my visits to the site.

 

Dawn - thanks, it sounds good - I'll see if I can get it!

 

Mary - keep trying - I'm sure an opportunity will come - keep your eyes peeled!

 

Wem - i think sometimes you get to a certain point in your build up and then you hit a kind of ceiling - that's your body telling you your progress is too fast and please slow down until you are ready to go again. I've hit it several times - like now for instance.

 

Michelle - great words again!

 

Sandi - I'm a bit down but I'm ok. It's bank holiday weekend so an extra day off - that's good so only four days in next week and then on holiday for a week - can't wait!

 

Best wishes to all - you all really do keep me going - since I joined this site, the support has been un-wavering, un- faltering - if I have blessings in my life the support of friends on here are at the top of the list - thank you one and all

Macca

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Hi everyone thought id comment let you know where I am in work , im currently working 30 hours a week which adds up to 35 really because I rely on my generous amazing friends in work for lifts. (no licence since shunt op).

Prior to the shunt op I was struggling with work ,in bed early every night I know realise the hydrocephalus was causing more problems than I realised. Since ive been back in work im like a different person. Though im not back on the ward im doing admin it gives me real motivation and focus. Feel more like myself .I think you are all amazing and should be so proud of what you are all achieving x

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I am glad that some of you are doing well at work and I am sympathetic with those who are struggling.

I have been back to work for almost two years now. My SAH second anniversary is coming up next week. I was foolish enough to go back a full 40 hours a week from two months after the SAH. I don't recommend that to anyone.

 

I find my condition with work rises and falls like the tides. There are days where I feel I am doing so well and have the clarity close to what I had pre SAH. When I first returned I struggled. I wasn't always aware that my struggles were caused by the SAH. For 9 months my employer had me doing my real job of meter reading. This wasn't an accommodation, the junior man who took over my job was off work due to an injury. I have done this job for over 20 years and the tasks are second nature. I found this allowed me to grow and recover much better than I had in previous months. Once the junior man came back to work I was moved to another job.

 

For the last two months my job has changed yet again. I have been transferred to a CCTV inspection truck. Although each task I do is not difficult I find it extremely fatiguing to process the sequence of tasks required to complete the job.

 

This is making me go to bed early again and my motivation has slipped. There has also been a wee bit of a work related legal crusade that I have been enduring. Although I am not the most educated person when it comes to law I am passionate about SAH. This has also created some stress.

 

The light at the end of the tunnel that lifts my spirits and keeps me going is 55 working days till I retire.

While I look forward to the change, I need to regain some focus to motivate myself in starting a semi retirement sign business.

 

SO up and down.... which is good. if it was all up I wouldn't appreciate it, if it was all down... well we don't want that.

Hang in there folks. Life is getting better daily

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Carl, your analogy of the feeling being like tides is useful. I had my first ' day ' back at work yesterday. Actually this was a few hours working from home which often did prior to SAH as I am very fortunate that Occ health and my colleagues are keen to ' do the right thing. ' I spent time reading documents for a project that I will be owning and had one half hour call. I then answered some email and wrote an article on something for internal use, not a lot really but a whole lot considering. I enjoyed it and it went well but. ...I Could feel my brain ache by the end of the planned time.

 

And then today I can feel the effort. My neck aches. I look more like a panda again. The dizziness has come in waves since this morning and I feel faintly nauseous. I haven't driven more than 10 minutes today as figure I need to rest up.

 

We are building up slowly from two ' mornings' work a week and I am aiming for three full days as my end goal. No more. They have agreed to that in principle. So I'm done now for the week.

 

So on the plus side of things it's a hooray, on the other it's an , oh pants! Wish I didn't get the hangover from the effort. Am hoping based on your experiences that this impact and its effect will diminish if I can take things slow to get my brain used to it. What if it doesn't though? Hmmm:shock:

Oh did I mention how irritable I am today? :lol:

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Well done Daff! I am proud of you! It is amazing how something new can really be so hard on our minds. Like adding driving or work. EEErrrrrr you did both! :-D

I am loving my 2 days off in the middle of the week together - kind of feels like a weekend with no treatments at work. It is all my own, I can do as I please with an empty house. WHen I return I have a different crew at work as well. :)

 

I stopped my ritalin for 3-4 days and yesterday I thought WOW why not take it later in the day like noon? I cannot take it when I crash but I had rested yesterday at 11:30-1:00 and thought now was the time to take it. I will try that at work today to see if it matters but I think if everything is lined up with the stars perfectly I can make it a day without it. Stressful situations floor me the most anymore with work and home. Zaps the enegry right out of me. I think it may leave through my right eye!

Daff, You are so good at pacing forgot to say that.

 

I was very mindful of my days off and doing things in small sections when it was a bigger project. I know you cannot do that at work. I also realized that the light of the microscope shines into my brain so I am going to avoid reading any slides when I am close to being toast at work. Yes, Mary the microscope light is very similar to the light of the sun that blinds you!! Only took me a few years to connect the dots on that one!!

 

Have a super duper day! maryb

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Daffodil, you ask if the impact will diminish. We are all different so it's not a yes or no answer. In my case I found it really difficult to stick to the agreed upon hours. I constantly over-reached both by working longer than I was supposed to and by taking on more than I should have. I was stubborn and determined to prove that I was as capable as pre-SAH and I would recover 100%!

 

I've learned that I'm still capable. I have lots to offer and can contribute and be successful but to do that it has to be in shorter days. I haven't tested this theory for real at work, but its working for volunteering. I'm symptomatic at the end of my 3 hour shift but an hour of rest and I'm ready for my tasks at home, my bucket of weeds and making supper.

 

The real test will come when I'm back at work and wanting to meet everyone's expectations again. Throw me a challenge and I forget the impact to me of meeting that challenge. Especially when it all feels so familiar, it's so easy to slip back into those habits.

 

Respect yourself Daffodil and stick to the hours you've all agreed upon. Adjust the expectations both from yourself and your team as required. Delegate and ask for more help if needed to meet deadlines. Easy for me to say!

Carl, life is getting better daily :-D

Sandi K.

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Daff, Carl, Mary, Sandi and everyone,

 

All well said and I doff my cap to all those wonderful efforts you are all making. For me, the thing that has been a constant is fatigue, and as you say Mary, being less able to cope with stress. I am back at work full time and was has floored me occasionally is that conditions/ilnesses, call them what you will, seem to morph into something else over time, ie headaches, to nausea, to aching and sore limbs, to shaking and balance problems, to excessive forgetfulness etc.

 

I've suffered all of these at various times. Or is it just me? If I've over exerted, that's me wiped out for a day or two!

Macca

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Macca is isn't just you!

Like I said for some time I had great clarity and as situations change so does my state of mind and in turn my health.

Fatigue has been a constant, but it rises and falls with stress. Sleep patterns are non existent, more random than a pattern. Morphing is a good description.

I do lack motivation right now.

 

I think if we were given the control over our lives that we require we could adapt much more readily.

If you have ever seen one of those Japanese water features that scare deer away, that is how I feel.

The water fills the bamboo till it tips off balance and then the bamboo knocks on the wood and makes a noise.

 

For me the stress fills my brain till it reaches the tipping point. The problem is I don't always see the brain filling so much. So things are great till they spill over.

If we had control at work we could perhaps regulate the stresses and find out what our stress indicators were.

 

I am quite sure that we can do what we need to do, we just need to do it differently.

Maybe we need to discover what our stress indicators are.

I know none of us are alone and I know this thread is one of the most important ones on the forum. Many of us use it as an indicator of our recovery.

Up and down :) that is the new norm for me :D

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Macca,

No it certainly isn't just you!

Fatigue for me is the single most debilitating aspect of my recovery and return to work. As you describe, it manifests itself in all manner of ways when it hits. Headaches, dizziness, balance problems and one of the most disconcerting effects is a trembling feeling that pulsates through my body. This can range from mild trembling sensations in specific limbs to full trembling throughout the whole of my body, emanating from my head/brain.

 

I am only just starting to believe there may be a correlation between these symptons and my stress levels. I was always a very calm and level headed individual, very rarely suffering any effects of stress, I therefore have not considered that some of my reactions following any challenges work related or otherwise may well be stress related.

Interesting debate,

Wem

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Well the light at the end of the tunnel does shine, but some bozo at work keeps standing up and blocking it LOL

 

Today I was all ready to continue with the task of running the CCTV in the sewer department. I was keen to get to work so I was the first one out of the office and down to the work bay.

A few minutes later I was told to return to the office.

 

I have a new job again. Now I go to every property, take a photograph of the property. Check on the condition of the meter box, dig the box out and expose the meter, examine the meter connections, check for backflow devices. Take another photograph and close things up.

The dirt from the boxes gets put into buckets and dumped out later.

 

There are almost 20,000 services to do so I will be doing this until I retire of until they change their minds again.

Nothing like stability to help someone along with an SAH.

I also found out that last week they installed a GPS into the old beat up truck they gave me, just so I dont stray too far. I love the trust!

 

Now this may aggravate the average person, but as many of you are aware I am enduring a legal battle with my employer. I know, because of a statement made to me today, that I have ruffled some feathers and this is why they are doing it. I love being able to stand tall and smile..... I am also singing Afro American work songs, which really tends to annoy my bosses. Oh well.

"Jump down turn around and pick a bale o' cotton, jump down turn around and pick a bale a day!"

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Macca/Wem,

I am reading your posts & nodding agreement. For me there is no difference between over doing it and stress - the issues are identical (although stress possibly causes a worse headache). It's coincidental that I read your posts today. As you know I am not working now apart from a Friday morning doing voluntary work.

 

Today consisted of a nurse appt at 8.30am, followed by picking up two friends to look at some houses, got home & gas service man arrived, along with my Dad to do some weeding just as gas man left. Followed by my son coming in from school with some issues that had upset him, closey followed by the window cleaner :crazy: Whilst not much of this day involved anything physical, I am SHATTERED. My head hurts, I couldn't find the word for a plant to tell my dad about (not even a rambling list of possibilities or clues for him to act on - just absolutely nothing).

 

My mind was totally blank & I just stared at him waiting for a thought, any thought at all, to appear. None did & I had to go and find the bulbs to show him.

Every muscle in my arms, back & legs ache and I did nothing physical at all along with not being stressed by any of the people, just too many of them in one day perhaps? It's hard to know what is over exerting yourself & what is stress when the outcome is exactly the same.

 

Carl, when I read your posts I nod even more vigorously in agreement. I was put through the same. The new 'manager' wanted to get rid of me and set new tasks, knowing that I was struggling to achieve all the original ones. It felt like being set up to fail so he could claim advantage.

 

The only comfort was that everyone I worked with could see what he was doing & were disgusted by him. Small consolation, but it's good to know that the people with similar moral values to our own are on your side, even if they are helpless to do anything to help. You will undoubtedly retire with your pride intact & your antagonisers will be silently seen for exactly what they are :devil: I think you win!!

Michelle x

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