How do you know if/when you're well enough to return to work

[Anne Fleming]

I know this topic has been aired before quite a bit already but thought I would ask advice all the same. I had my SAH last Nov. My main remaining symptoms are severe taste/smell distortion (though improving a bit), hearing distortion and tinnitus and fatigue and memory not so good. I had my check angiogram last week and though the results seemed good re the occlusion, it seemed to take an awful lot out of me & left me very fatigued & with headaches though those now clearing up.

My employer is wondering when I might be up for returning to work on a phased return, maybe one day a week to begin with (they've been very supportive since I've been ill). My GP and my OT and neuropsychologist at the outpatient rehab centre I attend, are noncommittal and leaving it very much up to me and would probably be supportive either way.

I find it very difficult to judge how well I am. When I compare myself to how I was before SAH, I feel I now have so little stamina. Some days I'm very tired, other days my energy is a bit better but if I overdo things I pay for it the next day. I also get anxious about my eating as although food no longer tastes like sewage, I have to brace myself to force most things down.

Has anyone found that they've gone back to work whilst still feeling very tired and that getting into a routine has helped them? I would be worried about going back too soon and then having to go off sick again as I think once you go back, whilst colleagues tend to be sympathetic at first, they do soon forget about your illness. However if I wait until I no longer feel tired, I may never get back.

Thanks

Anne

[Janet]

Hi Anne

I returned to work after seven months on a phased return. To begin with I only worked 20 hours and because I work in a call centre for the first month I didn't go on the phones just sat listening to other people and re-learning the system.

I found it very tiring at first and when back on the phones used to have a five minute break every hour. I have only managed to increase upto 30 hours a week and still find it very tiring by the end of the week.

Personally if you're still feeling so exhausted try explaining to your employer that it maybe a few months yet before you're ready to consider starting back.

I did find returning to work helped me to feel a lot more normal and stopped me from sinking into depression but I find that I'm too tired to do much around the house apart from weekends or holidays.

Hope that helps a bit with the decision you have to make.

Janet x

[Karen]

Anne.

I went back to work or tried at 3 months post SAH and failed miserably. All I can say, is that you need to rely on your gut instinct ... you know what you're capable of and it's down to to you to be honest with yourself ..... if you don't feel that you're capable at this minute, then don't be afraid to say "no" .... I spent more time thinking about everybody else and letting them down, rather than thinking about what was good for me.....

I'm sure that you wouldn't be asking the question if you were 100% and you felt sure that you were okay about returning? ..... I could be wrong, but if you have any doubt then think about yourself and it's okay to be selfish after this has happened to you ..... I don't have a clue what line of work you're in, but take your time and if you don't feel up to it, then don't do it and delay your return if it's possible. Good luck and I hope that you'll do what's good for you...

[stephen]

Hi Anne

I like you had my sah in November. I stated after the op that i would return by march. I haven't done so and i did feel a sadness at not doing so.

At this time my body tells me what day i can have. I could not give my employer any time i could return because it's my body that dictates what i can do or cannot.

I wish i could help them further but i cannot.

I do feel better because i am totally focused on my recovery and work can wait however good the employer is.

Our health is our wealth.

[tennissmithy]

Anne,

I had my SAH in Sept 2006 and went back to work on phased return after Christmas and succeeded until October, then hit rock bottom and have been off ever since. You really need to lkisten to your body and that is something I failed to do. I went to school as a teacher with headaches and bluriness etc and eventually got myself to the doctor for him to keep me off.

Once my symptoms are sorted I will go back on phased return again but this time if teaching proves too much I will wither consider part time or a different career, sad I know but as everyone keeps saying my health is more important.

I think it not only depends on how you feel but also what kind of job you do and what kind of support work will give you when and if you return.

Take care

Laura

[bogbrush]

Hi Anne.

I went back to work after 3.5 months, but I thought I was ready before that. I suppose I was having one bad day per week when I went back on short hours, but the fatigue and headaches increased and I know now that I returned too soon. It was quite tough for the first couple of weeks, and my employers were very supportive allowing me plenty of breaks when I needed them.

Feeling well enough to work is one thing. Actually being there is quite different.

Regards

Keith

[Skippy]

Hi there

I went back to work three weeks after - but only because we run our own company and I was having panic attacks at being left alone - I phased my self back into full time - I had a bed in my office and would sleep more than I worked to start with. For me it was purely a security blanket. I'd say I didn't stop sleeping during the day until about a year after my SAH. Even now when I pick Siobhan up from school I can have a quick sleep - so going to work for someone else - I'd probably only be able to manage part time.

You'll know more than anyone when you're ready, but be careful you don't go back too early thinking that you can cope as that could set you back months - don't want to sound all doom and gloom and I guess what I'm saying is don't let anyone bully you into going back to work until you know you're ready.

TTFN

Sami xxx

[jess]

Hi there I went back to work 3months after second op I felt tired all the time too however I put it down to finding out I was pregnant I was ok however I would certainly wait until you are ready to be fair I wanted my maternity pay thats why I went back so soon i also changed from nights to days they were very good with me. Jess

[Anne Fleming]

Thanks everyone for your advice. Yes I think I'm much too up and down at the moment to seriously think about going back to work as have the odd good day but most days very tired. I think I need to wait until I have more good days than bad before I even think about it part-time.

On my discharge sheet from hospital it said re work: three months before returning to work. I didn't realise at the time this was the very minimum amount of time you would be off so I did indicate to work that I would be back after 3 months. Will have to explain that this isn't going to be the case.

Love

Anne x

[Karen]

Anne,

Three months is probably the very earliest that a small minority of SAH'ers return to work ..... we're all given that sort of time limit when we leave hospital.....the usual time stated by the medics is 3 - 6 months ... however, a brain injury is individual to us all and there are a lot of different factors to be taken into consideration and the medics just don't know how your recovery is going to pan out .... I can remember being told that it could take up to two years, to start making some headway ..... I was mortified to hear it and I didn't want to believe it.....

If you're still experiencing more bad days then good days, then you'll know in your heart, that you're not ready and if anybody wants a timescale, then it's pretty much an impossibility....all you can do is perhaps review the situation at 3 monthly intervals....and maybe, the 6 month stage post SAH is where you'll get a taster as to what you can manage.....be kind to yourself. xx

[bogbrush]

I read somwhere that the average time off work is 9 months.

Regards

Keith

[andyp]

Hi Anne-I went back 3 months after I had the SAH and I struggled.

I was keen to get things "normal" and I was supposedly on a phased return..but once people know you are at work they don't think phased so much and I found I was soon doing more hours.

It was much too soon now..which I realised to my cost.

I had all the emotional stuff to deal with and as you mention the terrible tiredness.

When you feel you want to return be very strict on yourself..don't over do it gradually build it up and if you get too tired ...hold off /go home earlier .

No one really knows how you feel... except you!

I think nearer normallity was probably 15-18 months for me but I wouldn't have stayed off too long because there is a point when you have to try and get back as the longer you are off contemplating things is a huge shock in itself- I think.

Best wishes

Andy P

[Shanti]

Hi Anne

I'm 5 months post SAH and have been thinking about going back to work part time for a few weeks now, but must admit been on a rollercoaster mood and headache-wise this week.

My employer is about to send the office manager and someone from HR Dept round to see me. I honestly don't think I'm up for it, not even part time.

The office I worked in was quite stressful, full of girls that literally never stopped talking all day long. Also there was a radio blaring out right by my desk. I tried to move it once across the other side of the office and it was slammed back by another girl with a humph. I really don't think I could deal with stuff like that, certainly not in the short term anyway.

So no, I don't think I can go back, certainly not to the same job and location anyway.

Could really do with earning some more money though, my pay has now stopped apart from SSP. But heh, we've all just been through a life threatening experience and survived.

Think we'll struggle on for a while longer before I make a decision. But I'm very nervous of making the wrong decision and then regretting it.

Big hugs

Lesley xxx

[Anne Fleming]

Hi Lesley

Just wondering if you've had any support from an OT since your SAH? After I got out of hospital after coiling I got sent as day patient to rehab hospital where it is mainly an OT and neuropsychologist I see and I'm still doing tests there on memory and cognitive skills. I had to stop them for a while and instead just went along for a chat and sometimes a good moan and a cry!

I think it must be difficult for employers to understand about SAH so I think my OT wants to meet with my boss to speak about SAH and the effects it's had on me/what it's reasonable to expect from me when time comes and I think I can return to work. It seems a bit daunting that you are facing Office Manager and HR Manager on your own.

I don't know if I'm unusual in having a referral to OT after SAH.

Anne x

[Shanti]

Hi Anne

You've certainly given me food for thought. I'll check out my employer's definite intentions before I agree to it any home visit. I'll also check if a more compus mentus (spell check not working!) friend could be present.

Haven't had any support from any OT dept at the hospital but had a visit from a rehabilitation team right at the beginning when I left hospital. They were very nice but mainly focussed on whether or not I could do stuff for myself, like get dressed, make a cup of tea etc. I was fine so haven't heard from them since.

I can't claim incapacity benefit apparently 'cos I'm in receipt of a small pension. Have just spent 3 hours this morning doing our household accounts and trying to work out how we will survive in the short term.

Mustn't moan though, glad to be alive frankly.

Thanks for the helpful reply

Big hug

Lesley xxx

[Karen]

Hi Anne and Lesley,

After care post SAH seems to vary with each region and things aren't set in stone..... perhaps you can call it a "postcode lottery" .... it shouldn't be the case, but from what I've read, it seems to be so. I was offered Occupational Therapy about 2 and a bit years into recovery ..... by this time, it was all pretty much too late, as I had learned everything the hard way... and O/T was far too late for me. Unless something is offered to you in the early recovery stages, then you don't know that it exists.....and you struggle.

From what I've read, we seem to have a shortage of Counsellors/ Neuropsychologists in the UK ..... I've never been offered any counselling in my own area...

Lesley, I would definetely have somebody with you, when you have the home visit. Perhaps you could try for DLA (Disability Living Allowance?) .... have a look on the Different Strokes website, they will provide you with guidance notes on how to complete the forms.... DLA isn't affected by the salary that a partner is earning. Again, this was something that I found out about later, rather than earlier......it's worth giving it a try, if you're struggling financially.

It still makes me mad, that we are dealing with a "postcode lottery" situation .... and that's where websites can hopefully help..

Good luck to you both....

[Shanti]

Hi Karen

Thanks for the advice, I'll look into the DLA allowance. It isn't that we're flat broke, and Paul is working 7 days a week at the moment! but its if there are emergencies needing to be paid for. I really expected to be able to work full time for a few more years and replace things like the central heating boiler (about 20 odd years old according to my gas engineer) before retiring. Never mind, perhaps I'll be able to do part time next year or something.

Yes, I think I'll definitely have someone with me when I get the home visit from work, although they are really nice people, sure they'll do what they can to be fair and square.

Have a nice evening

Love and hugs

Lesley xxx

[Anne Fleming]

Hi Lesley

On the rehab front, just to say that my rehab isn't connected to any type of physical activity as I can do things in the home ok and my movement fine. It very much concentrates on how my memory, cognitive skills have been affected by the SAH and the implications that would have for me working and they are going to work with me on any deficits that become apparent, once all the tests are finished. There are a lot of tests involved and I'm sure I couldn't have done some of them pre SAH never mind now but it's good in that the OT has got to know me and what I can cope with.

It feels good to have someone like the OT on my side when I go on to think about possibly working again.

All the best with your meeting.

Anne x

[stephen]

Hi Anne

I think we both have some similarities. I have an assessment next week for an 8 week residential rehab. Most of my current issues are cognitive, i can't tell water temperatures or the speed of traffic. I do get my words mixed up and i get dog tired very often. I can't cook for fear of forgeting what i am doing.

I still have neighbours who don't see any difference in me and they do think i am at it. (benefit cheat) They do really get my gander up.

I do know that working is beyond me at this time. Hopefully the rehab will give me some more quality.

[Louise]

Hiya

Stephen I had that with water & busy places. I cant control my temp I dont realize I'm over heating - weird...

People seeing that you look ok so you must be ok are really annoying that for me probably the hardest thing to overcome but you know how YOU are who cares what those small minded people think, if it were them they probably would freak......

Rehab will help on that.

Hope you understand the garble a bit shattered this evening been a long day, got a big day tomorrow need to chill for that somehow.

Take care

Louise.xx

[stephen]

Hi Louise

You garble makes perfect sense as does your comments.

[Anne Fleming]

Hi Karen, Lesley, Stephen

Yes it makes me sad that there is this postcode lottery. I was very aware it existed for obtaining medicines but wouldn't have known it affected after treatment for SAH. Stephen I think your stint in rehab sounds a good opportunity and look forward to hearing how you get on. I live more or less beside the rehab hospital in Edinburgh so they didn't really need to take me as in patient but you'll have them all at your disposal on the premises. The one I go to in Edinburgh is a very old hospital and has lovely grounds around it. Lesley, good luck with your "interview".

bestest

Anne

[stephen]

Hi Anne

I stay in West Dumbartonshire, it has the only Acquired Brain Injury Service in Scotland. They have OT's, Physio's, Social Workers etc. who all specialise in ABI.

I am lucky but it is wrong. The rehab i have been offered is in Bonkle near Motherwell it is a private hospital but my area will pay for the treatment.

We could soon arrange a Scotland meet up. I can travel through to Edinburgh with a little support from my son.

[Anne Fleming]

Dear Stephen

I didn't know that re Bonkle. Astley Ainslie in Edinburgh where I go does have a head injuries department but it is probably more general in that it is involved in rehab of a wider range of conditions including heart attack etc.

Yes would be good to meet up and look forward to hearing more about how your rehab goes. I've found a lot of mine has been tests to work out exactly what isn't functioning, ie trying to see the wood for the trees or whatever that saying is. It takes the rehab quite a while to pin that down as the brain must be such a complicated area. There's still uncertainty whether my distorted hearing is due to my brain or my ear but am seeing ENT soon to clarify that.

best wishes

Anne