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Hi everyone!

Very busy couple of days. Glad to have my rest day tomorrow.

Emma, it's a good sign that you recognize this early that you are career driven. Perhaps knowing that and understanding it will help you balance your work and health sooner ? Just because your plans may not happen immediately or as soon as expected it doesn't mean they won't happen at all. Plan further out and give yourself a break if you are able.

David, how did it go with your boss?

Sandi K. Xoxoxox

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Hello David,

I'm here!!

I've sent you a PM.

 

My mind isn't really on work at the moment, I'm more concerned with the struggle my lil kidney is having. Got docs appointment and more tests on Friday.

I'm doing three longer work days this week, so feeling very drained but maybe recent health issues aren't helping??

 

Sandi, you are, and will always continue to be such an inspiration to me, and many others I'm sure. I hope you enjoy your rest day tomorrow. I hope to find a place at work to hide tomorrow but I can't see that happening! Way too much to do and catch up on. That's the problem, not enough work hours in my day to complete all I need to do.

 

Emma, how's work going for you? Hope you're doing ok.

 

Carl, how about you? Hope you're still hanging in there.

 

Take care and keep smiling,

SarahLou Xx

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Work update:

Thanks to everyone for their concern. I guess the meeting was mostly good news. I was working 34 hours and will go to 36. The reason is my days were kind of split up. So I now will be working 4 full days M T TH F and a half day on Wednesday for the month of May. Come June I will work full days on M T W TH and a half day Friday because we have summer hours on Fridays and close at noon. So not much change really. It was a good outcome and compromise from both sides.

 

I work for a great company and I think they like me so I am very lucky in that aspect. The only bad news so to speak is I will be working 36 hours when I am probably only physically capable of working 28-30. But reducing hours is not really an option at this point. I can do it! Sami says I can. I can only hope that over time I get better and can have a life outside of work also.

 

At this point I will rely on guts and guile and the wonderful support from the people on this site. I truly couldn't do it without this support and knowing others understand what I am going through.

Hope everyone is well,

David

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That is good news David.

I like the idea of the split mid week. Even the half day Friday isnt too bad.

I went back to work full time 2 months after my SAH and that was a huge mistake.

I have come to the conclusion that my job is perfect, it is my bosses that are a work in progress :lol:

 

SarahLou. I had a meeting ast Thursday, which wasnt too productive. It was step one of a grievance. I gave the employer a 5 day deadline for them to come back with some alternative. That is standard with our union. I imagine the response will be another series of questions for me to take back to my doctor.

I have an appointment with the doctor on the 26th, so I don't imagine there will be much progress before May.

 

One of the joys of SAH. always look forward to the future ::-P

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You must be a good worker David.... give yourself some credit...I insist lol . ...Well thats a weight off your mind......a lay in on

Wednesdays ....Tuesday night til Thursday am you can relax and no worries .....

Hope it works out okay for you

Be Happy.. xxxxx

Regards

WinB143 x

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Hello,

Michelle- My wife is better, thanks. She went to work today and then just called me and is in pain. I told her not to go back til next week but she didnt listen. She should be ok, she has help at work. How is your wee boy? You are a great mum, be patient with your career, it will come

 

Sami- Felt like I was gonna die today about 3pm. Dizzy nauseous, brain tingling. Then I did some deep breathing and dammed if it didn't work. I made it another day!

 

Win- Thanks for your cheer, yea Wednesdays is my catch up day, And boy do I need it.

 

Carl- It seems like with the grievance that you should be somewhat covered by the union. Your health issues are real. what exactly do they need. I know it's alot of red tape though. Hurry up and wait, right? Oh BTW, in May I because i work full days I get a 45 minute lunch. Out to the car and nap! 30 min not enough.

 

Sandi- Hope you are tying things up and can rest eventually. I need time off but may try and suck it up and use vacation time.

 

SL- Sent you PM, hope your tests go well, take your time and take it easy.

One more day til Fri,

David

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Had an 'official' meeting with Occupational Health worker, Rehab worker, my boss, and I yesterday and narrowed down some details. I'm working up to May 9 three days a week to help get people in place to cover me and to organize things fr transition. It wasn't easy negotiating that much time, remember they wanted me to go home last week. I explained that it's part of my well being to ensure things are running smoothly while I'm away.

 

They are cutting off my access to email during my time away from work. :shock::shocked: tried to get out of that one but didn't succeed. :wink:. The logical side of me knows this is in my best interest. They agreed I participate in interviews for the jobs I've posted though. :biggrin: Give and take! :-D

 

My return to work is going to look different next time. I won't be 'prime' in the role. I'm hiring someone else to do that. I'll be supporting them. That should lessen the weight and pressure significantly. Occupational Health is going to vett all my work and responsibilities and hours, all that is being taken away from me. I understand that I didn't manage it well and just kept taking on more so I'm acknowledging this is important to being successful this time. I have to give up some control. Did I just type that out loud???? :crazy:

 

May 23 the rehab worker is coming to my house and we will begin testing my brain and doing cognitive puzzles and stuff to see how I'm doing. They won't let me back to work this time until I'm ready. They say I went back too early. They say I went back too early. That's worth repeating. The first time I went back was only weeks after the event.

 

The second time was 6 months after. Here I am 17 months later and going off work again. I really don't know what the right answer is here because everyone is different but I really do wish my medical caregivers were more direct and advised me better following the brain bleed. Something along the lines of 'you will be off work for 3 months and then be assessed' would have been reasonable. Then 'you will be off work another 3 months and then be assesed'. I can't help but think I would be better off and so would my team at work. This business of me in and out and people covering for me causes instability in their leadership and work environment.

 

Overall, I'm feeling positive about what is happening. I still have thoughts of failure and fright but I'm also feeling optimistic. I'll be on a roller coaster of feelings the next little while!

Going to the psychologist today is a good place to start.

Sandi K.

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Hey David

Well done - taking a little "breather" now and then does the world of good. You're doing fantastically.

Sandi

I'm glad that your employers seem to have your best interests at heart - good employers are hard to find these days - well done you, you're doing fantastically too.

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David, good to hear your wife is doing well and back at work. Also good to hear that using breathing techniques is helping you - I had never thought of deep breathing when the brain mush happens but will give it a try now.

 

Sandi, what a HUGE day for you. Good to hear they will cut your e-mail access - I think we all know you would've been still constantly on the go otherwise. I also went back to work just a few short weeks after SAH and hadn't gone through any of the brain tests (they happened nearly 2 years later :crazy:). It seems a fantastic idea to take time off now & have the tests re-done.

 

You can not cheat on those tests and they will show you any problems you have before you return to work & try to do things which may not be possible for you. There's also a very real possibility that you may have improved on your scores from the last time. I know how difficult giving up this control will be for you but absolutely believe you are doing the right thing in order to maximise your health and your future career opportunities.

 

Use the time to rest and stay positive for improved results in the next batch of cognitive testing (bet you have improved :biggrin:)

Michelle xx

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Sandi

I am glad you are being given the opportunity to relinquish your responsibilities for a while and concentrate on your recovery. Having tests to assess your cognitive abilities will I am sure help to confirm that you have improved since the last tests were done.

 

I wish I could have been tested before I went back to work... I am sure it would have showed up that I just wasn't ready for it all. Alas, everyone thought I was 'fixed'.

I do hope you are able to relax into your new role of looking after No.1 and you can enjoy the freedom to allow yourself to get better.

 

If only any of our GP's/Neuro-consultants etc were able to give us more definite time-frames... we seem to be told different things or nothing at all in some cases...poor show really :shocked:

Kel x

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Thank you everyone, you are all wonderful support.

The session with psychologist went well. We are going to have weekly sessions during my time off work on shifting my thoughts from failure to future. From feeling pressure and guilt over not being at work to figuring out what my new world looks like (if it's going to include fatigue then a new balance has to be found-my old pace doesnt work). :shock::shocked:

 

I like that there will be weekly sessions and we will be 'working' toward something and 'doing' stuff to help me understand pacing. The last time I was off I was still very ill and needed a lot of time in the quiet to sit and stare out the window. Although that was necessary then because it was early in my recovery and my brain needed total rest I think that this time I want to be more actively learning how to change my behavior.

 

I'm a survivor. There is no denying my will to be successful in whatever I'm doing. Now my focus is to reset my path. I want to be strong and confident again and feel whole and worthwhile, hopeful, and happy. Don't we all?!

 

The brain bleed really threw me off course but it's a major life threatening event so I suppose that shouldn't be such a surprise. I suppose it could be expected to be life changing.

Sandi K.

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Hey Sandi,

I haven't been on in some weeks - since before I did my 110km cycle ride (went well by the way) - so I was strangely shocked to read how things have built up and come to a head for you over the weeks and months of working. I really wish you every success in this next step you are embarking on, and that the right formula for getting everything together & and life in balance pans out. It must be hugely frustrating to let go, when your every instinct (honed over your pre head explosion life) is to drive forward, even though the logical side of your brain knows its for your own well being to let go. At least Occupational Health are involving you in the plan.

 

As always, your posts have really made me think, and think perhaps I need an honest review with myself (and being honest with yourself isn't that easy, is it ?) of where I really am at, and especially in terms of career things. Ambition is a terrible thing, as is that wish to turn the clock back and be able to be that driven person again, and cope with it all. My ability to multi task has moved on leaps and bounds in the last month or so, And ... WAIT FOR IT .... I can now listen to music again. This has only happened over the last week or two.

 

Until now, it was somehow too much to deal with. That's a good sign, I think. I only wish that in my multi tasking ability building, that I can get on with building a satisfying job for myself again, some time in the foreseeable future, instead of feeling unsure about just how much I can cope with, and for how long a sustained period, without the dreaded fatigue getting in the way . So Sandi, you are making me do some serious (sensible) thinking .... thank you for that, and for your courage in telling us all about your journey.

 

Have you or any or those reading this post had that same experience, of finding music too hard to listen to - I'm guessing it has something to do with all the sensory stimulation it gives ?

I've another question. Are you able to drink alcohol ? I still can't, some 8.5 months since the head explosion.

 

At first it gave me an instant headache from the smallest amount (just a sip), until now, I can have one weak small shandy but the next day I see to be very fumbling - all fingers & thumbs. I asked a guy who told his story at one of the Wessex Support Group meetings. His reply was he was drinking again a couple of days after they kicked him out of hospital ! So, its obviously not a general thing :roll: but he was a "big hairy army" kinda guy !

Go well and be easy on yourself.

Mags

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Mags, that was an interesting post. I have always loved music, the louder the better :wink:. My days (and especially weekend nights) were a few drinks & dancing to music either in the pub or at home if funds were low.

 

I really struggle to listen to music now and have no idea what stuff is new. I would've known that before! Radio One all day at work & I liked it loud enough to make my floors bounce (at home on a Friday night, not in the office obviously) but now, not so much & never so loud. Other peoples' reasonable volume is now too loud for me.

 

Changed days indeed.... Very, very occasionally I play something LOUD but only one song, I just can't tolerate sustained noise. I don't go to live music events now as I can't cope with the people, the noise or the music. Even with a radio on very low in a car or at an appointment, I can't cope, I can't concentrate. I also feel bothered when adverts come on tv or radio news bulletins with background music - it's too confusing to listen to what is being said with noise in the background, no matter how quietly.

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Talking about music actually does tie into going back to work. People have radios on in office environments. I cannot concentrate when a radio is on. It absolutely pulls me away from the conversation or task and I can't think. So anyone who knows me knows to turn the radio off when I come to their desk.

 

I can't listen to the radio in the car when Peter and I are carpooling to and from work. If the radio is on then we can't talk. It's either talking or radio, not both. I just can't do both, even as a passenger.

Restaraunts are hard work!! All that background noise and music.

 

At home, when we have company (hardly ever now) I prefer no background noise. No TV and no music. Party pooper! I used to be the first one to put on a cd or plug in the iPod.

I do love my music though. When I'm alone in the car or sometimes in the kitchen or on computer if if I'm having a really good day.

 

Thank you so much for your comments Mags. This is an interesting time and I know the next few weeks won't be easy for me.

Sandi K. Xoxox

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Hi folks:

Been in bed most of the weekend. Work went really well this week. No sick or late time. But it hit me this weekend. Had our furniture delivered yesterday. Love it! But I made a poor decision yesterday to deliver my old furniture to a friend of mine. He is 70 and has no income so I look after him. I brought the old furniture to his house and he put it in the garage. I was rather upset. He has nasty furniture in his living room that people have thrown up, peed on etc.... And he wont get rid of it. i'm burn the damn things. Oh well.

 

On the music subject, I can listen to music sometimes but only in my car at my level. restaurants are nearly impossible.

 

Mags, on the alcohol thing. I haven't had a drink in 5 months. 9 months post SAH like you. In November, I felt pretty good and was having my drinks on Saturday night 3-4 vodka martinis. But since my wife got sick in November, I haven't had any drinks. Right now it just takes too much out of me. I had a beer on Christmas Eve and gave me a huge headache. It just doesnt agree with me at the moment. Had like a three day hangover in November and that was it for me. When I feel better, I will hope to have a drink by the bonfire this summer.

 

Sandy, I hope ur getting some rest.

 

Michelle, I miss our music too but still listen on Youtube occasionally. PM'd you also, thank you for yours.

 

Regards,

David XX

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Sounds like you are doing well David! Spending the weekend resting sucks but you made it through the whole work week and that's a major accomplishment! You are doing amazingly well.

I feel ok today, resting up for tomorrow's work day.

 

I don't drink alcohol very much post SAH either. I'm dizzy enough without it. :-D. It really exhausts me, my guess is you are already exhausted and then you have a drink it's only going to add to it ? I had a martini here and there in Hawaii in March. At Christmas I split a vodka cooler with my stepdaughter, might have had a couple of vodka coolers when my sister was here in January.

 

At the one year mark in November I was in Mexico and able to drink piña coladas and stuff like that cuz they were watered down. If it was a strong drink I didn't finish it. Yep, total party pooper now!! :lol: The other thing is, I'm a bit afraid. Can it really be very good for us to get tipsy when we've had a brain bleed? I don't understand the physical side of what happens.

 

In trying to be back at work though I would think any kind of drinking booze wouldn't help the situation unless you were feeling pretty good and healthy and not experiencing fatigue. Just my opinion. Maybe I've got it backward! :lol::crazy:

Sandi K.

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Thanks to everyone who has replied to my post.

 

Since my post, I've had a sobering experience. Having felt so pleased that I could at last listen to music again, leastways for a while, I attended a wedding reception last Friday evening, and found that in that kind of crowded environment, with loud music and lots of chatter and people that it was a lethal cocktail. By 10:30 I absolutely HAD to get out of there and go home - it was unbelievably tiring, and my brain was screaming at me. Mmmm, so I hadn't progressed as far as I thought I had. Another mental note to self about wishing too hard to be the old me again, and assuming that one small step means more than it does.

 

Now here's another related question. Do any of you get a hot forehead when you're getting over loaded ?

When I am doing a lot a brain stuff (multi tasking at work, for example), and especially when I going into brain overload (like at the wedding), my forehead is very often noticeably hot to the touch. Its quite bizarre. My hubby has taken to putting his hand to my forehead if he thinks I might be getting brain distressed. If I'm fairly normally cool, that's great, if its hot, he knows that I need to slow down a bit. Of course if you have a temperature from illness, it doesn't work !

 

Touching on Sandi's note about listening to music in the car. I'm a sad old Radio 4 listener (to those outside the UK, that's the BBC's mainly talking channel, some would say the serious or high brow station) and have been for years. I just love learning about stuff. So I rarely play music in the car. The interesting thing I have found, is that if I am tired (like, for example, when I've spent far too many hours at the office, or just done too much), if I drive home with the radio off - ie. in silence - then I really recover. I really have to force myself not to have the radio on - that's something about my habit of having the radio on in the car. But it really works. I've done it a few times now.

Take care all - and thanks.

Mags

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Hi All:

Just a quick update to work. This is my 2nd week of working 4 full timedays and Wednesdays 12-5. I'm making it but barely. Yesterday was tired and felt I was near the end, hit the wall, end of rope whatever you want to call it. Through the grace of Sarah Lou, she pulled me off the pavement and picked me back up. TY Lulu. She knows she is appreciated. I am going to try and press on and hope that my body gets used to the increased hours. My gut feeling is that I'll make it abd I can do it but I need to prepare if I can't.

 

I guess I should go see my GP and see if he has any ideas or referrals. But I think it's been well documented that there isnt really a cure for fatigue so not sure what he can do. With all that being said, I guess my question is has anyone been told that by pressing on that thier risking their health seriuously? I asked my neurosurgeon directly that if I push myself and work to the point of total exhaustion, am I risking heart attack, stroke etc. His answer was no. But he also told me I'd be fine in a month so ehhhhhh wrong. Just venting sorry.

David

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Hey David

You're doing brilliantly and although it seems like a long slog at the moment, it will get easier as your body and mind get used to it. I've been stressed loads and worked to my very limit since my SAH and I'm still here to tell the story.

 

As well as working in a school five days aweek 9 -4 every day, I come home and check for any emails or orders that need invoicing from my hubby (we run a graphic design company), every quarter I have to make sure that the VAT is calculated and payments made on time, I have to chase clients for unpaid invoices and reconcile bank statements, in the next four weeks I will be preparing my accounts for the year end audit (although I do have a fantastic accountant) - so yes, I still get as stressed as I used to and work as hard as I did pre SAH - but I'm here. To be honest, this is a walk in the park compared to having, surviving and recovering from an SAH :-)

 

It will get easier hun and your body will get used to it - it was a full year before I stopped having two - three hour naps during the day and just recently I have got home from work, flaked on the sofa with the dog and fell asleep for half an hour.

Hang on in there - you are doing fabulously and I am so proud of how far you have come and what you achieved in a short space of time.

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Mags, I am almost 8 months post SAH and I can only once in awhile listen to music in the car on low. I cannot look away from driving while driving the car either. I love loud rock concerts .........I will miss that very much. Can't listen to Zepplin on low either, doesnt sound right.

 

Nor can i multi task! So thats where I am at. No to the hot head. I was following my boss to her car today and she was handling me something while we were walking I become an idiot like I can't walk, talk and be handed something. I have gotten so use to wathcing where I am walking so not to trip that adding passing the baton was too much!

 

David, It does get much easier and sometimes you get a bonus week of feelgin pretty darn normal! I just had a good 10 days and now I am crashing on the sofa as often as I can. Today on my lunch hour I actually got under the covers in our bed with my little Henri dog and fell asleep for 30 minutes. If I did not wake up I woudl not of cared. I am blessed that my co workers get it & we were over staffed today. Now for sofa time - to hell with dinner tonight. LOL

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Hello you lovely lot,

Yes David honey that was just for you!

Thank you for your kind words.

 

I've not been on this thread for a while because as most of you know via the green room I've had a bit of a change in job and I wanted to see how things were going before I posted.

It's too early to tell yet to be honest. My brain spins with everything I'm learning but I hit the wall of fatigue head on by late afternoon. I just havta ride through it. Like you David I wonder do I just keep pushing, will my brain and body really get used to it or will I end up pushing just that bit too hard. I truely believe that fatigue will always be a part of me now, it's here to stay.

 

This afternoon I felt totally shattered, close to the line of giving up, asking myself why do I bother.

However, as always, you guys give me such strength and support.

Time will tell if my new job will work out. I hope so. I want to get more bits of 'normal' back.

A few weeks ago the therapist said to me that I must push myself, I must be more positive and I must never let the SAH stop me from doing anything that I want to do.

 

David you're doing so so well, I know what a struggle it's been for you, it often feels like it's one step forward and two steps back doesn't it. You can see why so many SAH'ers don't return to work, or they have a change in career.

 

I'm going to start writing down questions for when I have my neuro check up next month.

Sami, as ever you're our lil guide of shining light. You make us able to take a step back and view things a bit differently.

 

I have a feeling that for me I shall go backwards a bit at work before I can go forwards.

I promise that on my day off on Friday I really am gonna just do nothing. Total chill out. I've got to, brains kicking out at me to listen to it. I read a letter from your brain again earlier, I should start reading it more often again.

 

Stick with it David, your'll get there, we both will.

You know where I am, 24-7.

Take care,

SarahLou Xx

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