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Keep your chin up...I always say this, so sorry to others xx.....we are the ones who made it so Cheer up and don't let

anything get to you.....after ups and downs we will beat this thing so cheer up and sing us a song xx

Take care and remain happy always ....

Regards

Winb143 xx

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Hi Carl,

Welcome to Behind the Gray. I can see you've already found it a big help - as I think we all have.

I'm now coming towards my first 8 weeks back at work, and thank goodness for the Christmas hols in the middle. I am learning all the time, and not least of all about how to manage my life in terms of how much I can take on.

 

The frustrating thing is that its not always entirely predictable when or how I feel the fatigue. In the run up to Christmas, several people expressed how the added things to think about for Christmas were making life more difficult again - and I know I was finding myself getting more fatigued, because of it. When I got back from doing the Christmas food shopping, I was really at the end of my mental energy.

 

I think we all find our own ways to deal with such moments. One of my favourites is to get out for a walk. I'm lucky enough to live a fe metres from the sea front, so I have a great place to walk. Other people, like to sit quietly. The trick is finding your own coping mechanisms - and other people's experiences talked about on this site can certainly help on giving inspiration.

 

I am also making a distinction between feeling tired and feeling fatigued. For me feeling tired is when I feel sleepy, whereas fatigue is pretty much when my brain is protesting, and telling me to take a break. It helps to make that distinction, and not least of all to those around you - otherwise they get the sense that you have no physical energy, or are depressed, and in my case that's far from true. I just need to manage brain stimulation !

 

Sandi - have my second CBT session tomorrow evening so I'll try and do an update after that, but seems to be going along the lines of the sort of advice you've recieved about planning and managing, and not trying to do it all - like we both USED to do before SAH.

 

Take care Carl, firstly be honest with yourself with how you feel and what you can cope with, and then with others. You might be surprised how supportive people can be when they see you actively trying to manage the modified you. And that's what I'd stick to ... you're different and modified. Steer away from the suggesting brain damage, even though on here we can admit to it, those that have no experience of this type of thing, get the wrong end of the stick and we run the danger of them imposing their prejudices about that sort of thing on us.

Ta ta for now,

Mags

xxx

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Hi everyone! Carl, I'm so happy you found this thread and I hope it's helpful. Going back to work represents getting back to 'normal' for me and it's been an uphill battle since my head blew up. Many climbs up and many falls down! I'm grateful that others are sharing experiences here too. I've recently read a paper from the Mayo Clinic in the U.S. that says that the majority of people with brain injuries just want to get back to their regular routines. It means they are well again, if only their brains would let them.

 

As our brains are healing it's hard for us to change jobs and learn everything new too and in addition we don't have a lot of energy. So we want to go back to our jobs and the routine we know. According to the paper I read anyway. That fits me. It doesn't hurt that I really like my job!

 

I have been very vocal at work about my 'deficits'. I've explained them to whoever will listen. I feel a responsibility (I don't expect everyone to feel this way) to educate people if I can about my experience. I'm sure in some ways this is career limiting! But I can't take on more responsibility right now anyway. I am seeing progress at work and I'm also sharing that information.

 

If I compare what I'm capable of now to three months ago, six months ago, a year ago, it's a big difference. I'm still struggling with energy and fatigue. But my brain is opening up. Technical problems that I was unable to grasp in October now make sense. Complex project budgets that were too complicated in October are now moving together like puzzle pieces.

It's kind of cool to sit at my desk and realize 'hey, I get it now!'

 

But... I'm still healing and I'm still missing some puzzle pieces and some days are worse than others. I feel much more positive though. Three months from now I'll be even farther along.

My next meeting with the occupational therapist is Monday. Will post the results. I'm still at three days a week. Only 1 full day, trying to get to 3 full days.

Sandi K. : )

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  • 2 weeks later...

Hello everyone,

Oh Sandi K, our wonderful 'back to work' lady of wisdom, hheelllppp!!...

I've been doing my phased return to work for a couple of months now, last wk had a increase in hours and change in days. It seemed to be going ok, I got very very tired but know I need to give my body and mind time to adjust to the increase in hrs.

 

However, today I ended up having to work in another store, a very busy laser clinic where they had 4 opthalmic clinics running together. Although most of the staff there were understanding it was something I could hardly cope with. Way too much going on at once. I felt the full blow that i cant multi-task at all. All the noise was way beyond a work environment I can cope with. If they want me to work at this store again I really don't think I'll be able to cope with it.

 

I normally work in a quieter store but my manager was off sick today so I was told I had to work in the other store, it wasn't even up for discussion. I didn't even get a break for some lunch, no break at all.

I am so drained I cannot even walk straight and it is a struggle to hold a conversation. I want a good cry. I feel rather broken. I feel rubbish and useless that I struggled so bad today with something that I could deal with easily pre SAH.

 

Typing this is taking mega constration! Please forgive any typing mistakes. My whole body is tired, inside and out. I am well and truely all outta my spoons!

Wondered if you could give me any advice please. I value your opinions.

Take care,

SL Xx

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SarahLou the best advice comes from your own brain. I can read it all in your post. When we are feeling so fatigued and worn out to the point of tears its impossible to see though. I've been there many times! You've added hours recently first. That almost always throws me for a loop, if not the first week then for sure the second. My OT rehab lady suggests a few weeks of getting used to additional hours before adding more. Next, you've changed days. This isn't bad but also takes some getting used to. Your brain still thinks its one day when it's really another. It's trying to keep up.

 

Additionally, change is hard for us and unplanned change is nearly unbearable when we are feeling fatigued. Your normal place of work was changed because someone was sick. You had no time to prepare for this. You were thrown into it and I'm sure you wanted to help out and felt it was out of your control anyway so away you went. It's not your fault but it's no wonder your brain is yelling now. This is your brain saying too much change to the routine too fast!!

And then add on the noise. That is just the cherry on top!

 

I think your brain is asking for routine. It wants time to get used to the new hours and new days. The surprise change of workplace was too much. Can you speak with the store managers and ask that they refrain from asking you to do that type of thing until you are feeling better or back doing more hours?

I'm sorry you are feeling this way. I hate that feeling. My head is squeezing in on me now from working a full day but I'm not to the point where you are. It's so easy to get there, we are still so very fragile. And the more fatigued we are the harder it becomes to explain it to people. Time for a rest SL. I hope you are off tomorrow and you can have a duvet day.

 

Hugs! Think back to last week, you are really doing very well and if this surprise wrench hadn't been thrown in you would be well on your way to mastering the new days and hours.

Xoxoxo

Sandi K.

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Still being a newbie here and of SAH I am also returning to work and today (& the past 4) have been really good days. I even was able to make new curtains for my 6 living room windows this weekend. I will probably never get them hemmed though. Not that I was not pushing myself at the end of project. First time I have done anything creative at all other than throw lights and ornaments AT the Xmas tree.

 

I have struggle everyday for years with fibromyalgia and it is a butt kicker to say the least. I somehow feel more prepared or able to cope with the new me or accept it maybe because the years of being on a roller coaster with fatigue and pain gave me the acceptance of my limitations. Today I feel it had prepared me for who I am today. I have to look at it as God making me slow down for a reason or it depresses me too much. I have years of frustration over my limitations & lack of ability to be the hardest worker, most creative etc. I still have somewhat of the trouble shoot ability, and able to………..

 

Sorry forgot what I was going to say………………..lol…hum…..oh, organized and prioritize at work and clients have said they can tell when I am not there. I am “getting” that ability back some but the small stuff of figuring out shot records and complicated things can shut me down and I have to have someone check my work at times. I know I am forgetting things and making some mistakes. I think I am going to take the advice to go outside and breathe.

 

I too worked too long today. Planned on 1/2 day and worked 7:30-1:00 with no break. I was ready to head home at 10:00. I ended up coming home and sleeping 2 hours. I have to plan to take it easy so I can get dental work done tomorrow and the before SAH that was miserable now it sounds unbearable to sit in a chair with my head back that long. I was telling my friend the other day I no longer listen to that negative voice in my head.

 

On my way to visit a friend THAT voice said “You are doing pretty well this weekend”. Me “Yes, as long as I rest when my head weighs too much money”. I can only laugh at myself because it can be so much worse. I plan on trying to add that walk outside no matter what the weather is to freshen my mind.

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SarahLou, We all hate that wrench that Sandy K is talking about. As much as I feel decent today (score of 65 up from 40's last week) I know it is steps forward and steps back but it makes me/us so crazy the steps backs. I live for the good days. Chin up, be kind to yourself. I scheduled massages weekly even though I have no idea how I am going to pay for them but it beats taking more medication & I feel the over all tension relief is well worth the money I do not have.

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Keep smiling & puddle jumping Sarah Lou. That was a BAD day, most days you are doing brilliantly at work - don't let the bad one get you down xx

Sandi's advice to speak to a manager about the noisy, busy store is good advice. They may not understand how incredibly hard this type of environment is for a lot of us now. You have to explain this & give them the chance to do the right thing by you while you are recovering.

Michelle xx

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Hi Sarah Lou

I'm sorry you had such a difficult day. I completely understand how you feel. When I initially returned to work, the main problem was my manager being unable to understand that her pushing me to do things, before I was ready, was making things worse. I remember only too well feeling that I was rubbish and useless.

 

I kept asking myself, why do I think I can do this? It was the Occupational Health doctor (after listening to me in what was a VERY tearful consultation) that said to me that I wasn't rubbish and useless but my manager was the one that was rubbish and useless! She was being paid to manage and in his opinion, wasn't managing my situation. It was because of this pressure (and not being listened to) that I was signed back off sick eleven weeks later, being very ill with work related stess.

 

You have to speak with your manager and explain how this day made you feel, remember not just the physicial symptoms, but you have to say how it affected your confidence in your self. Why not ask for some feedback from your manager, ask how he/she feels you are doing, considering you have had a brain injury. Would it not be the case, that if you were'nt coping then your manager would have spoken to you about it by now?

 

Then you can get an agreement that should this happen again, then whoever is in charge, knows that for the time being you are exempt. I don't know how you managed to finish your day in that environment. I wonder how a non SAHer would have coped with this if they had a dreadful headache, I think they may have gone home sick!!!!! You did very well to finish your day.

 

You've being doing really well Sarah Lou, don't let this get you down. Sadly it's one of the many hurdles that we have to jump, dealing with people who just dont' get it! I hope you are feeling better today, take care.

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Just thought I'd add this, it's a form of positive thinking. It's what my doctor said to me way at the beginning of recovery. I was not to think of it as going forward and then backwards. I was to think of it as up and down. Good days I was striding up the hill with ease. Not so good days, I was sitting at the top of the hill, catching my breath, getting ready to slowly go down the hill. The not so good days are healing days, healing days are to be seen as good days. I remind myself of this when I'm being hit with the dreaded fatigue and it allows me to give me permission to just rest and chill!

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Hi guys,

A big thank you to you all for your advice and kind words.

Thanks also to Gill and Lil Miss Goldfish Girlie for your texts.

Today work was really busy again but at least I was in my own store. My manager is still off but someone came to cover the clinic with me.

I will be speaking to my manager about things when he is back in store.

We do discuss how I am and he has good understanding as his partner has MS and he has a brother who had a stroke. Some of my colleagues are understanding, others just don't get it.

My health comes before work and before anyone and anything else. I'll not let myself be put in that situation again. Even if it does mean that I'll loose my job. My hub and my parents went mad when they found out what happened yesterday.

Im not sure how I got through today, I feel totally drained. Luckily I'm off tomorrow and I plan to do nothing!

Liz I liked your latest post of explaining things as up and down the hill, that's just how it is. I need to sit at the top of that hill for a while, admire the view for a bit.

Once again, thankyou all.

Much love to you all.

Take care,

SarahLou Xx

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SL,

Remember we're all in this together. That must have been difficult working in that noisy office. I can't even stand a bust restaurant, I'll have to leave so you did great to finish the day. I hope you get lots of rest tomorrow, hug that duvee and drink alot of water, you'll feel better.

Take care,

David

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Sl,

My 2 veterinarians I work with "get it" & most of my co workers. But I have some that don't understand how long this is taking. I am going to need to write thanks you note to those that do thanking them for their patience as I am allowed to walk out the door the minute I get over loaded. I can take my pillow and try to find somewhere to lay down my head or just go home. I hope you get the same results after you speak with your manager. Winter is suppose to be our slow month but so far it has not been. I don't know if I am happy the recession may be ending or not!!

Good resting to you. m

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Sarah Lou it's good to see your fighting spirit back again. Good for you!! If Winb sees this I think she'll tell you to sing that song 'I get knocked down, I get up again'.

Good luck with your manager when he's back and milk that duvet day today. It been a really difficult few days for you physically & emotionally - time to have a break & eat some 'lil geezers' :wink:

Michelle xx

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I wish the fatigue wasn't so unpredictable. There are times where I can see it coming and prepare for it like days where I have back-to-back meetings scheduled. I know those will wipe me out. But other times there appears to be no reason for the heavy blanket to swoop in and cover me. Monday morning I felt great! On the way into work I remember thinking I felt like my old self. By 2:30 my head was squeezing in and I could no longer carry on a conversation. I tried doing some quiet things like sending emails and after a few start and stops decided I was done. That night I was exhausted.

 

Tuesday morning I was fine again and it carried on that way all through the day and evening! It doesn't make sense. I would think the second full day at work would wipe me out.

Off today and then tomorrow is a full work day. Who knows how my head will be!!

 

Days like Sarah Lou describes where there are surprises and we are thrown into noisy and demanding situations unprepared will definately bring on the heavy blanket of fatigue and squeezing of the head for me. But other days like the Monday I had just don't seem to have much reason for it. The day before was a quiet restful day.

Sandi K.

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Today I just wanna give up.

The last two work days have caught up with me and my brain is complaining big time.

The whole of my left side of my head hurts. Pains deep in my head. Bad temple pressure. My jaw aches and so does my eye.

I've rested today, slept a little bit, drunk lots of water etc but its not helped much, only feel a lil bit better as the day has gone on.

 

I got really frustrated with myself earlier. Nearly broke friends with that clip inside my head again. Was either going to sob (although I thought I might not stop once I started) or get angry and rant and rave. So I put some music on, had a dance around the living room and then I got the skipping rope out and dusted that off! Head still feels bad but feel a bit better in my soul now.

Going out for a lil wonder in a bit, clear my head some more hopefully.

I hope that my work day tomorrow won't be so busy.

 

Sandi, big hugs to you, we walk this tricky road together.

Take care,

SL Xx

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Hello:

You are so right Sandy about fatigue being unpredictable. Last week I felt really good and this week not so much. Almost ready to give up as well. I have been working M T TH F from 1030-430 and Wednesday 12-5. No days off. 28 hours. now my co-worker who does the same job as me has ****** and moaned so much that now I have to work Tuesday and Thursday from 8:30-2:30 because she cant handle her job. I don't really feel well in the morning but guess I'll have to "suck it up".

I feel the walls closing in on the full time thing and know I'm not ready at this time. My co-worker (same one) asked me today in front of my boss "Were you planning on coming back full time"? I wanted to strangle her. I fumbled for my words and said yes but don't know when. Looking back I should have said well the brain surgeon doesn't know how should I. So frustrated and ready to quit. Anybody know how to apply for disability in the States????

David

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Hi David,

I've been wondering how you were getting on.

Oohh hun, sorry to hear that things are the way they are at work for you at the moment.

I know how you feel, I'm very close to the line myself right now.

 

If I get that 'when do you think your'll be increasing your hours?' one more time I think I'll scream!!

I've been banging my head against a brick wall with one member of staff, in the end I got rather blunt and to the point with him about things. I almost ripped a certain part of his body off!! Poor guy.

 

Maybe it did help a bit though as they've sorted out cover for me for the next few weeks. It's great to be working with a lad I used to work with yonks ago. Yesterday he said to me 'I'm really sorry I didn't visit you in hospital Sarah, I just couldn't face seeing you like that' he gave me a big hug and I told him it's ok, I understand. Then he said that I look fine, normal. Umm..

 

After a few hours of working together he said that although I look the same he does see the differences. I think we're gonna get on ok working together. What will happen in weeks to come though I don't know. I'm trying to take each work day as it comes but I'm finding it harder than I thought I would right now. I hope that things settle down and improve.

 

I hope that things get better at work for you too dear David.

Big hugs to you.

Take care and keep smiling,

SarahLou Xx

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I'm wondering if there is a period of time where co-workers have it fresh in their minds and so give you space and the breaks you need. I'm on a slippery slope right now... I know it. I think I need to get back in to the psychologist for some reinforcement.

 

I'm not supposed to be full 3 days until mid march but I started doing it last week. I'm supposed to be off today but I've got so much on the go I'm planning to work from home for a bit. Additionally, it looks like I might be short a team lead very soon which means much more demand on me. Trouble is, Im loving the work. My head is squeezing in and honestly, I'm ignoring it again. Sigh... I do know where this leads. The internal conflict is incredibly strong and causing much turmoil. My guts churn.

 

Coworkers just really need constant reminders that we are still in recovery. It feels weird having to repeat ourselves all the time. We all want to contribute and participate and I find it hard to say no or even stop myself volunteering for stuff.

Very slippery slope.

Sandi K.

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The problem with 'recovery' is that people are used to being able to put a timescale on it but when it comes to brain recovery its completely umeasureable & that is what 'normal' folks don't get. They expect you to be better/recovered after a year at most & to be quite frank so did I in the early days. When the neuro nurse told me I would be recovering for 6 months I poo poo'ed the idea & was convinced I'd be fine after 2 or 3. In fact 6 months is a gross underestimation for most of us & the neuro pysch said in actual fact recovery is more like 1-2 years & can be ongoing from there.

 

As it can't be seen a brain injury is thought to be 'fixed' once the external scars heal & people do lose sympthy after a while.I get so fed up fo saying I'm tired I'm sure everyone else is even more fed up with hearing it!!

 

This is one of the things that scares me if I ever return to work with people who didn't know the old me & won't have the patience bourne out of knowing me before. One day I will have to take the plunge but it still feels too early & I am almost 2 years post op. For those of you back at work I salute you!!

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I know I went back to work too early. At the time my job was not structured. There were no real established procedures. I muddled through and things were going quite well. I would "sneak out" the office once a day and do some field work and stop for a coffee with co workers from a different department. It was a great stress relief.

 

Coffee breaks became more of a social time and often spilled from 15 minutes to 30.

Somewhere along the lines my bosses followed me. They called me up on a cell phone and asked me where I was. I told them I was having coffee. They asked if I had been collecting field data and I replied yes. I tried to keep the odd job open in different parts of town in order to meet for coffee without waisting time or blatently driving to a coffee shop.

 

Well one thing lead to another and I was told I was wasting time. I received a 3 day suspension. When asked what areas of town I was in on 5 specific dates I could not remember. They believed that was me being dishonest and a breach of trust. So I ended up getting a demotion, although I retained the rate of pay I was receiving prior to the discipline.

 

Now I work side by side as a labourer with another employee. I still forget things but I now keep a journal to document what I do each day. There is a silver lining to the story. My co worker is pretty understanding for the most part although he doesnt understand or acknowledge the memory issues.

I have been with the same employer for 32 years now. I am very close to retirement with a decent pension.

 

I can retire in May but the pension is reduced. Each day I stay after May 1 increases my pension by $1 a month so I can now smile and plug away a little each day knowing my pension is getting better.

I have been in this position of labourer for 3 months now and enjoy the work but I feel the whole ordeal has set me back several months. I really do look forward to retirement but I am patient it will come soon enough.

 

I really look back and think, TAKE YOUR TIME. I went back to work full time only 2 months after my SAH way too soon! people told me not to do it but I didnt listen

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Carl, it's sad it turned out this way. After 32 years of service to have a brain bleed and then things get muddled and go sideways so near your retirement. Taking time off is so important. I went back at about 2 months too but didn't last long. It sounds like you could have used an advocat, someone to explain that you were back to work too soon and perhaps not quite ready. Someone to point out that your brain still needed rest.

Sandi K.

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Hello,

Thanks for the kind words as always Sarah loulou. I hope your work is going better and you get the assignments you need.

 

Sandy-It is indeed a slippery slope. My bosses understand my condition but my co-worker has complained so much they are moving me to tues and Thursday mornings. I guess they're trying to see if I can get up in the morning. The slippery slope I see is if i say i'm feeling better (which I'm not) they'll want me to work more. If I say well i'm not better than they're eventually gonna have to look to replace me. So what exactly do you say? So far i've been honest.

 

Carl-Sounds like they were a little rough on you but maybe it worked out for the best. I went back at 2 months. BIG mistake. Three might have done it. But at least you're close to retirement. I have 15 more years to go. But if my health doesnt get better I may get involuntary retired next month.

Thanks for listening,

David

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Ok, I had 2 weeks where I worked extra hours and the elastic band was squeezing around my head. It made me more diligent and this week I worked the agreed upon hours that my occupational rehab therapist laid out for me. Full day Monday and Thursday and 7 hours on Tuesday. I feel fine. I think I've got this schedule tackled. She did emphasize that once you feel ok with a schedule you stick with it and don't add on yet.

 

Trouble is, both my team leads have been applying out. The stress on them as I've been on my gradual return has been monumental. I suddenly feel huge pressure to get back full time but logically I know that will only make it worse. Instead of helping I'll begin messing up as my brain shuts down and begins screaming for rest again.

 

I've learned a lot in the last months. 6 months ago I would have rushed back to work to 'solve this problem' unknowingly creating a bigger one. Now I'm thinking about other avenues. Perhaps I need to discuss with my boss and bring someone in to replace me and move me into something else. That might be drastic and brings up huge anxiety but I can't have my team suffer for ages and who knows how long this will go on. Im at 14 months now and thought I'd be back to work full time at 3 months...

 

I really did think we (the team) were doing so well. This was such a surprise to me. I think I'm doing well in my recovery but it's a real juggle to balance the recovery with work. I wonder if I've been so focused on my recovery that I've had my head in the sand.

Sandi K.

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