Back To Work

[MaryB]

Desy, if I had a choice in not working I would have certainly waited longer to go back until I was further along in my recovery. I am so glad you have an understanding partner in this. I cannot imagine what it would be like to not have one. Take your time you are early on still.

 

SL, This is my motto at work “I wish I could work more as I know I am needed, I do deserve my pay as I work hard as I ever did when I am there, I cannot do more than my body & mind allow so I while I wish I could make things easier on my co worker that shares my job it is not in my power to work more hours”. I wish I could but I cannot and promising I can will not help me.” I basically accept and no longer judge myself or feel bad that I am working less. I do not think of myself as the weak link etc. I just cannot do anymore than I am doing and I feel I am keeping up with others although it cost me my social life.

 

Life is always better when there is not a barking dog to listen to all day and the staff is less- I find I can work better harder with less staff than with more staff and more commotion. I would prefer no one was allowed to talk and they had to give me a message in 7 words or less than to yap a paragraph telling me a story! If that makes sense?

 

I do wonder what is from SAH, CFS/ME, Fibro or is my brain tumor near my brain stem growing. Wish I could just accept that! Really does not matter if my hands are so sore if I held something too long, is this chronic backache and neck ache normal? Is the pain deep behind my eyes ok to have? Why is my head too tender to lay it down on a pillow again?

 

I go back to the doctor 9/10 so we shall see what he says.

I had a good 7 days in a row but it was due to the medication combo I was on then I hit the wall. Even on the same combo. My body & mind is just exhausted. We shall see how this continues. I have a review with my boss coming up and I have always scored very high but I know I lack in some areas like writing in a chart while someone is talking!! YIKES!

 

Having 7 good days was like a miracle. I have not had that long of a stretch of feeling well for years, way before my SAH even. It was like heaven! But I have consequences for it – imagine you just feel great and you do not have to pay the piper in any way! Well I until things change I will just keep putting one foot in front of the other and push on the best of my abilities on that day!

Maryb

[Sandi K]

Awww Sarah Lou, I hope you feel better soon. I think one of the hardest things about managing our return-to-work is the unpredictability of fatigue. If only it hit us immediately and when we would expect it to!! Instead it can take a few days to creep up and just when we thought we escaped its wrath and think we might be 'cured' it slams us against a wall with its weirdo symptoms.

 

The good news is that it will pass. I find that hardest to remember when I'm in the thick of it though.

Sarah Lou your return-to-work has been so successful! You have great determination and you are always looking for and finding ways to make it work. This is just one back step but look how far you've come!

Sandi K

[MaryB]

Sandi, Thanks for starting this thread it is a good one for sure. XO maryb

[Louise]

[amexdm]

Hello all:

Yes, Sandy a very valuable thread.

Sarah it is often ok to try and test ourselves and our limits. Otherwise we will never know. I hope you are feeling better and work out that head. By no means should you be dissapointed in yourself. You are strong and do fantastic.

 

I think Mary and I are very close in our recovery stages. I am just past two years and had 11 out of 14 good days. It was nice for a while. This week it's back to feeling the wall of fatigue again. But progress is being made.

Sleep is a huge factor for me. One bad night and I'm off kilter for 3-4 days.

Hope all are well,

David

[DawnS]

SarahLou,

it's very hard not to feel despondent when we have a set-back, or what we perceive as one.

Last Wednesday, I had to go into work an hour early for some training. Although I find full time hours very tiring, since I adjusted my breaks it's all been going very well so I thought that one teensy weensy extra hour couldn't possibly be that hard. Boy was I wrong! I ran out of brain by 14:00 that day and struggled badly for the rest of the week.

What I am trying rather ineloquently to say is that we all have our limits and when we surpass them, we pay. That doesn't mean we have failed, it means we got over-confident for a minute and the brain injury has marched out to put us back in our place.

Dawn x

[Sandi K]

Dawn, wow did you ever hit the nail on the head! That's exactly it. Sometimes we feel overly confident and add more onto our day and our brain marches out and reminds us (with a whollop!) we need rest. I've done it over and over and over again.

 

As for starting this thread, I think there are lots of people in our situation who want to get back to work - doing what they did before. It's got to be difficult for medical professionals and occupational rehab specialists because they don't really know how we are going to recover. They don't know when we will return to work or if we will be able to do what we did before.

I was told early on that I would recover 100%. I believed that. I've strived for it.

 

I know now that I will continue to 'get better' but mostly from learning to cope with daily challenges rather than actually fully recovering from the brain bleed. I also know that when I finally do return to work it won't be in the same job, it will definately not be as complex and it probably won't be full time. I do wish the medical types just said to me early on 'I don't know'. I would have stopped trying so hard to do what I did before and I may not have been tough on myself when I couldn't do it.

 

It's obvious to me by the amount of views we get on this thread that people just want to get back to their lives. Earning and routine and not worrying about what happens if they can't work or have to change jobs.

 

I wonder if I'd been told 'we don't know how long your recovery will be or if your capabilities have changed' if perhaps I'd have been more open to taking time to rest early on. If I had done that would I be further along now? Would I have recognized earlier and accepted more easily that I might need to consider changing jobs? Who knows.

I am adding another 2 hours to my volunteering though. . Another small step toward getting back to work.

Sandi K.

[MaryB]

I wonder if I even wrote on BACK TO WORK on a Friday evening how different I would sound? That is my day when I think I cannot make it till 5:00 or how will I make it? I think you are so right Sandi it would be so much easier to of been told how hard it was going to be.

 

I also might add that SL you have a family I only have my husband, 2 dogs and 2 cats when I am home. I have been pretty much "absent" from a life outside of work even in my own house. My yard suffers as do my standards of cleaning! I do not have to cook if I do not feel like it or even talk to anyone. That is pretty much how I have survived the last 2 years.

 

 I am just now adding that “other” part & not lounging on the couch when I am home. Kudos to all of you with a family, I wonder if your brain adjust to their noise and movement in the house faster than ours who live with just an adult? Hum? I wonder about that.....My husband has to tell me when he is about to grind the coffee or make some loud noise or I about jump out of my skin.

 

I should have known how hard it would be when doctor gave me a permanent handicap license plate! But no I was offended. But I am clear at work I cannot do more than I am already doing and it is going to stay that way unless I improve a lot more during the next year.

Maryb

[SarahLou]

Thank you guys for all your supportive words and advice.

You are my strength.

 

I only work 3 days a week but spend my days off running around busy with things.

I don't seem to get any time for a rest!

 

I was discharged from physiotherapist yesterday so that will free up some time for me to have some proper 'me' time and to be able to catch up with friends.

I have no choice but to continue trying the extra hours as I've medical bills to pay but I will have to juggle a few other things around so I can try to find better coping strategies.

 

I am so grateful that we all have each others support to get us through these challenges.

Sandi, you're a star for starting this thread, when I read back over older posts its great to see how far we've all come.

Thanks again everyone.

Take care,

SarahLou Xx

[Sandi K]

Whoa!

I did the 2 hours today and my head is not happy. Just the morning routine started a minor headache. Worked on the computer and created a spreadsheet with comparative information that I pulled out of various file folders. It was quiet and I felt pretty pleased with myself with the results. Head was hurting more on the way home.

 

Now I've been home a couple of hours and have taken some pain meds and I'm in bed. I'm sure they'll kick in and I'll be fine before the kids get here for supper.

 

I expected a headache or something because of the additional hours on a day I normally don't go in but it's a bit surprising how loudly my brain is barking at me right now.

Sandi K.

[iola]

Hi,

I have been working part-time from home for a month yesterday and I have been exhausted every day by 4:00. And when I am tired I am dizzy. It's like I am walking around the world sideways.

I was shocked when I was talking to my boss the other day and he said he thought I would be further along by now since it was just a "little trauma". I know I wrote this somewhere else as well but it hurt so bad. He was there when mine happened. I was on travel for work. After I cried I let him know just how much it hurt.

 

I get up every day at 7:00 am, take a shower, get my daughter up, and get her ready for school. I put my makeup on, do my hair, put my daughter on the bus, and then go back to my house and start working.

I just do not know what more I can do? The doctor told me I would have 100% recovery, as well. Granted, I am blessed with the ability to do the things I do and I am only at the 5 month mark but.....Ugh.

 

Sorry, venting. I am trying to do the best I can but I see I cannot stay as focused as I used to and I must take breaks in between to rest a bit. I keep forgetting meetings I am supposed to call in for and all I can do right now is apologize.

People see the outside and have no idea what is going on inside. Lots going on.

iola

[Sandi K]

Iola it would be devastating to hear something so negative from your boss when you are doing far more than many at this stage. I can imagine its taking every ounce of energy you have to look after your family and put in the hours that you are. Many people just don't get it and your boss unfortunately is one of them.

 

You really are doing very well. The dizziness may be an indication that more breaks are needed? Do you have support from your doctor and can your doc write a note for work?

 

It's amazing that you are working as much as you are and words of encouragement from your boss (and perhaps some gratitude) would mean so much!

Venting here is perfect. We all learn from each other.

Sandi K.

[Winb143]

"I",

I get tired of thinking what I should be doing. No guilt though lol

You are doing well, shattered and dizzy but I am proud of you.

I get tired just thinking about it all so vent away as Sandi says, and hold your head up high xx

Love

WinB143 xx xx can't sleep xx

Edited September 7, 2013 by Winb143

[jillbb]

Hi Iola, So sorry to hear about your boss and work. I have had to come to accept, that as time goes on, after an Sahfriends and family find it hard to comprehend that we are not as we used to be! Although I don't work now, I lead a very active life on a small holding. my memory is terrible, having been able to work all day, I am still exhausted if I have done much physical work. I am 17 Months on, so don't punish yourself.

 

I now say I can't, I.did try and refer family to the btg web site, but they did't seem to want to know! They do not want to accept we are different we look the same, we should be the sameas we always were, unfortunately we can not always live up to there expectations. I think you are doing wonderfully, looking after your little girl, coping with a job, and an SAH, Try not to get too low, you are doing so well, Please don't let a thought less employer affect your confidence.

Love jillxx

[DawnS]

It's so hard when people just don't get it. A little trauma? Unfortunately, that's pretty much what it seems to other people. I often have to begin my explanations with the words 'it's so hard to explain to someone whose brain works normally' in the hope that this might alert the listener that we are not talking about normal stuff here. Sometimes it helps and sometimes it doesn't.

 

What was your boss like before your sah? I learned the hard way that my near-death experience meant nothing at all to my narcissistic boss. She actually appeared to take pleasure from our weekly meetings when she would complain that I was still writing everything down and just how long did I think that might last?? It was very hard not to let her attitude make me feel like I wasn't doing well when in fact I was doing extremely well and venting here was exactly what helped me to keep going. Try not to let you boss make you feel like you are not making progress in leaps and bounds!

[iola]

Thank you to all,

My boss really surprised me. He and another co-worker stayed with me until my husband arrived. My hubby had to drive 5 hours where I was so I am thankful. He was good while I was not working, but, someone once told me that once you are back at work you are back! And, for everyone else it is business as usual.

 

He expects me to be well while he is complaining about his gouty foot. Urrrrr.... I have always kept him organized. I remembered everything cause he did not. Well, things have changed and frankly I do not care like I used to.

 

I am the type that always had to please others. Did not want anyone disappointed in me. This was in my professional and private life. Once again, before my SAH what was on the outside did not mirror what was going on inside. Huh, I think I just had an epiphany!

I'll end on that note.

Iola

[MaryB]

Iola,

I am so sorry that you have to deal with this attitude on top of your own health issues. I will say I am getting better every day and Monday will be my 2 year mark. AND I have damage in my occipital lobes & other health issues. I know things seem bad and it is disappointing to not be completely yourself yet. I have no doubt you will get there in time. I think we all agree we would take a facial scar to remind people it is a big deal.

 

People just do not realize what a trauma it is. I would get better and go back and forth for awhile then get go up a few more steps. It is exhausting. Personally I do not even know how people can have a family to raise while recovering. I most of the time have a hard time even talking after work. I just do not care enough to be polite sometimes. I am in survival mode and it is all I can do to just lay down.

 

My boss did tell me when I told her that although I am able to do more at home I cannot increase my work hours and she said she knew because I have no “filter” when I am tired. I have a review on Monday. It shall be interesting. I am fortunate that I work with people that “get it”. Most of my good friends “get it” as well. I am not shy talking about how I feel with them or other people I think I am “educating” people when I do.

Good luck and hope next week is better. Maryb

[DawnS]

Hi Everyone,

I'm looking for a bit of input from the only people who understand what living and working with SAH is actually like please...

 

I've been back to work for 13 months and full time for 10 of those. Although changing roles (and therefore my manager) has helped enormously, I am finding that as time goes on, it's getting a harder to get through the day instead of easier. The changes my new manager made to my breaks in the afternoon a couple of months ago has made a big difference but really, by 14:30 I'm done in and still have 3 hours to go.

 

My partner is very supportive and would like me to go onto less hours. Fabulous! I am thinking of asking for 6.5 hours per day which will cost me around £100 per month after tax. The only concern I have is this - will this allow them to start talking about dismissing me for capability again? I've tried to research this on the internet but can't really find any solid answers. Surely if they have had me back for over a year, that window of opportunity for them has passed by?

Any thoughts please?

[Lin-lin]

Have you tried contacting ACAS? - they offer free employment advice.

I think it is important that you acknowledge that things are getting harder, not easier. I sympathise. I'm nearly 4 years post SAH and had a severe episode of brain fog today. My mother in law had to take my son to her house all day because I couldn't cope. I cannot imagine how I would function in paid employment, like so many of you do.

Your intention to reduce your working hours seems a sensible one and it could very well prove workable. I hope your employers are able to accommodate your request. Consider ringing ACAS. I'm sure you'll get some information with them.

[Daffodil]

Gotta weigh in to this one.

The need to work whether for financial or self esteem reasons has to be weighed up against the toll it takes on us all and I personally think the longer you work the greater the toll it takes from you. I have ony managed to get up to 10 hours thus far Dawn, so I applaud you for the hours you have and continue to do and the many others who work full time post SAH. I Just don't have that energy to spare and can't see that happening any time soon.

 

You have rights to be treated equally and fairly at work in the UK. Requesting a change to hours Is a delicate issue but handled well then it can work for both employee and employer very well, but they do have to consider carefully every request and it is up to them to prove that it would not work and that they would not be able to fulfil their purpose of work if they agree to the change.

 

To be honest a good company should consider any request without knowing the reasons , thats the basis of the law. If they agree to the change They are not allowed by law to treat you badly, victimise or harass you and if you feel that they will do this because of a reduction to working hours then I think you would find this would be considered very poorly by employment lawyers.

 

Interestingly the law allows employers to treat disabled employees more favourably than those without disability, maybe to correct the balance, the other way is not the case. I think the fact that you have disclosed your serious illness , the brain injury essentially and ongoing health issues means that it would be considered a protected characteristic by law.

 

That said I think the key here Dawn is setting great expectations for both parties from the outset.

How will it work, what adjustments like the extra breaks would you still require, how will you be performance measured? be really clear with each other.

 

One last thing. Keep notes of meetings and what was said but don't tie yourself in knots trying to keep trak of everything, small bullets of key points with dates are just a useful reference in meetings and very powerful if you ever have to email a complaint in future, hoping you won't have to.

A very long and lengthy but useful document can be found here, some good examples Of how it should practically work http://www.equalityhumanrights.com/uploaded_files/EqualityAct/employees_working_hours.doc#_Toc305490109

Feel free to Message me.

[MaryB]

Dawn, I have no advice to offer about your employment but I do understand the feeling of getting better and going backwards? I cannot add more to my work week which my boss recognizes or home chores but at the same time I am just finding it more difficult to add anything like a home life. I am blown away how much I feel like a zombie trying to add a tiny bit more. I mean I have no "Executive Functioning Skills" at home at all.

 

I cannot most days even make a list of what should be done. I have had to go back to 3 things on my days off or 1/2 days. Like 1. Dinner 2. Laundry 3. Pull weeds 30 minutes. That is my baby step 3 things. Just write down 3 things. I absolutely have no routine at home at all and find it difficult to make one. Even a simple one.

 

While at work it all comes naturally. Not that I do not have to ask for help or am forgetful etc. I know I did this backwards but it has left me rather empty inside. When people say make a note it is like I cannot think normal to make a note or a list. I am overwhelmed at times by this as it reminds me of early on when I had 50 posts it notes of the same thing.

 

I wonder if you can reach a point where you just have to stop or back it up or something. Maybe even though the brain is better than it was it is on a new level of overload? It is weird. Maybe you / I are only are going to be 50 %? I do not know wish someone could give me a clue on this one. IS there a second wind coming? Or is this it?

Maryb

[DawnS]

I'd forgotten about Acas entirely, so thanks Lynn for the reminder. This is why talking to you all is so good!

 

Daffodil, you have raised some interesting points. We are not paid for our breaks which is why I'm thinking of 6.5 hours per day, that way I can still have a 30 minute break.

I cannot open the link that you posted for some reason, even copying and pasting into my browser didn't work, is there another way to access it?

 

I've had mixed responses from my friends with regards to changing my hours. One suggested that I was giving up without a fight and letting my brain injury 'win' . Another said that it has nothing to do with brain injury, anyone in their right mind would reduce their working day if they could afford to. That pleased me greatly because it made me feel more normal!

[iola]

Speak to your boss. Best thing you can do for yourself and the company is let them know how you feel. I think we all tend to want to over achieve after our illness to show everyone we can do the job. What gets me are the people I see standing around half the day chatting and not working. Look at all the time wasted.

I am sure you are wonderful at your job. Companies do not want to lose valuable people. You can only do what you can do. It's not failure to accept limitations.

Oh and everything Daff said!! That is way above my knowledge level.

[Sandi K]

The idea of 'letting the brain injury win' is not the right way to think of it and Dawn I'm sure you blinked at that comment. We need to learn to cope with our daily challenges with brain injury and part of that is learning what our capabilities are. Everyone is different, if your quality of life will be better with fewer working hours then that is absolutely the way to go. Hopefully the info Lynne and Daffodil have provided will help get you there.

 

Ask your friend if running on a broken leg is the way to heal it and when it gets worse is it letting the broken leg win?

 

Came home from volunteering with a rotten head today. Very noisy on Wednesdays at the Brain Injury Society where I volunteer. Plus I'm training new volunteers and still have my own stuff to do, spreadsheets and such. I've come a long way from when I started but days like this remind me why I have short days.

Sandi K.

[MelS]

Hi all

Well you do continue to amaze and be a source of inspiration and spirit. Today is my 7th month back in work and I am still only part time, splitting five half days over four working days...I'm still shattered and not yet doing my role at all, but mini projects to see how I get in.

 

Good days and bad just like real life and I guess a lot is just learning new boundaries..kicking them now and again, or accepting, this is just how it is.

 

I'm babbling, it's late but have you spoken to Access to Work? They are part of the DWP and they help people with disabilities in the workplace..I have a support worker and they also recommended items to help me do my job, like a voice recorder and screen tinting software. They part fund the support and your employer pays some depending on the company size.

 

It's great and the support workers can help mediate with your employer (I was doing more hours but dropped back with their help...39 feeling like 109!)

Links here

https://www.gov.uk/access-to-work/overview

Mels X Zzzzzz sorry pooped this is not very well written in fact I didn't post it last night I emailed it back to BTG! Sorry Karen x