Resume work - how and when?

[caw]

Hi all, I am new to the forum so a big hello to everyone.

 

A short introduction - my SAH (grade 1A, blister aneurysm) in mid Dec 2018 surprised docs and nurses given my age (mid 30s) and clean medical history. Having stayed in HDU for a week or so, I moved to the neurological ward for about two weeks before returning home with some general weakness and eye sight problems, but no major physical difficulties. 

 

Similar to simonk,

https://web.behindthegray.net/topic/7261-coming-up-to-1-year-post-sah/?tab=comments#comment-130884

 

Personally I feel quite good about my physical recovery so far (limited headaches and dizziness, sight much improved), but family and friends insist that I need longer to recuperate. Having gone through some of the posts here, I definitely understand the need to take it slow and for phased return to work as far as possible. Unfortunately, it would be difficult to arrange shorter hours due to my job nature, so I am afraid it is all-or-nothing in terms of resuming work.

 

So my question is this - do you have any experience with jumping back into full time fast paced positions about 2-3 months post SAH?  If so, how did you cope?  My main worry is that my seemingly good recovery and conditions are largely due to the ample amount of rest I have at home now, and yet I could not truly test out my progress unless I am in my old "normal" high pressure circumstances again.

 

Thank you in advance.  Any thoughts or sharing would be greatly appreciated!

 

caw 

[ClareM]

Hi
 

I think a key point in your post is 

5 hours ago, caw said:

My main worry is that my seemingly good recovery and conditions are largely due to the ample amount of rest I have at home now,

 

You probably feel great now and your recovery is going well but it is all relevant to the rest you are currently getting. Throw in a bit of pressure on the brain and you may find you are not doing so well. And it probably won't hit you until you stop the pressure meaning you pay later.

 

As you say you cannot truly test out your progress until you are back in your old job, this is certainly true but going back without phasing could be very problematic and a big mistake.

 

You need time for your brain to adjust and you may find that you can't go back to what you did previously. Push it too hard and you will suffer so baby steps are a much better idea.

 

I was in a very high pressure job pre SAH and tried to return to that - unsuccessfully. I phased back slowly but the stress got to me so much so that in the end I changed jobs. I've reduced hours and changed jobs again since then and think I am in a good place now. Saying that, I only work 4 days with Wednesdays off as recuperation day. I am 4 years post bleed and don't think I could work full time now.

 

I wish you luck on whatever you decide and hope which ever way you chose is successful, just remember you brain has had a huge insult so won't take to being treated without a little tlc.

 

Clare xx

 

 

[weedrea]

I'm 3 1/2 years past my SAH. I went back to work 3 months after it - first month back 3 days a week, second month 4 days then full time. By the time I went back full time I had lots of annual leave allowance so I ended up taking most Friday's off for another few months. 

 

Overall I've not had any real negative impact from my SAH. I'm back working full time but I have the benefit of managing my time to fit with my energy levels. I work at home and I've never been a 9-5 worker. I have the benefit of being in control of my own work so it's no issue if I work at 9pm or 10pm if that's when I'm feeling best - as long as the work gets done on time (but no-one ever arranges for 9am meetings for me!).

 

I have been very fortunate in my recovery but going back to work full time was still a struggle. I spent the first 8 or 9 months having a 30min nap every evening when work was finished for the day. I could still do with that sometimes! When I didn't have my nap I was the grumpiest person in the world! 

 

I still have lots of 'times out' during the day - walking the dog (well not now since my old boy left me *still sad*), making a cup of tea...whatever, to break up the day and get away from the computer screen. In my previous life I adored spreadsheets (sad, I know!!) but now an hour and it makes me feel ill and a little crazy! So I'd just suggest you be aware of your own stress levels and tiredness and take breaks as you need them. Worst thing is to try and struggle on.

 

As a starter I'd say if you have annual leave to use up then take Wed's off or Friday's or something to break up your week. It definitely helps if that's an option for you, even in the short term.

 

Happy to chat more or offer more advice if I can...

 

Andrea

[Daffodil]

Hi there Caw, 

glad to hear you are doing well and continue to look after yourself . It will help. 

under the disability act you can request adjustments at work and I think that every job can accommodate some change and flexibility but often it’s not asked for because most of the time no one else has ever done it previously at that employer . Most informed and enlightened employers want to help you get back and stay in work so be creative.

 

as weedra says maybe consider how you might flex hours or at least inject small breaks. 

 

What you have to consider is how you give yourself cognitive respite during a work day. It will Improve but you may find going back you are fine first few days  and then the cumulative is just too much. Maybe do some small tests at home of what impacts your energy most, is it a long walk. Listenening to an audio or podcast and see if you can take notes, talk to a lot of people and see how the effects sit with you? 

 

Knowing what triggers and drains you post bleed is important as then you can make allowances temporarily to help you build stamina. 

 

Your family is right to have concerns, you had a bleed and you can’t pick up just how you left it. Time to shift mindset an£ be open to doing things differently. Ask and at least explore that is my best advice. 

 

Other folk have got back full time work , we have had doctors on forum who managed to get back to their shifts but jumping back in is not something I’d ever advise someone who has had a brain injury and make no mistake,  that’s what a bleed is. 

[Louise]

Hi there

 

Although December might seem some time ago having had a SAH its not that long ago still in the early stages of recover I'd say..

 

wishing you well in your recovery..  Everyone has good advice...

[Swishy]

Hi,

I returned to work after about 8 weeks.  I was not a full time employee working 28 hours, but on the overnight shift so that makes it harder.  I started back working half shifts for a few weeks then went on to 24 hours, let 4 hours go.   Saying this I must tell you I was 64 years old at the time of my event.

 

I really didn't realize I went back too quick until I looked back later at it.  At 4 months...6 months...a year  I was so much better.  Fear of losing my job was my biggest reason.  Just be kind to yourself, it is a big deal and the brain needs time..

 

My best wishes as you continue to heal.

Jean

[caw]

Thank you everyone for your advice.  You have really shown how this forum is a warm and supportive community.

 

Over the past weekend I have tried going out of the house for longer and having dinner with a group.  Must say what would have been an easy and relaxing break in the past gave me headaches and insomnia!  I have also tried glancing through work emails just now.  An hour of it without actually working on them already makes my head spin quite literally.

 

Suppose there is no denying I am still not where I would like to be recovery-wise.  I will probably tell my neurologist next week and try to ask for an extended sick leave.

 

Many thanks again for your support.  Hope I will have better news to share next time!  Meanwhile, good wishes to all who are working their way through post SAH here.

[caw]

A follow up question too - how do you differentiate between genuine fatigue caused by recovery from SAH and general "laziness" from a slower paced life when you are not working?  I have trouble distinguishing the two and it makes me rather anxious : (

I feel I cannot accurately assess the true progress of recovery unless I can tell whether I am "justifiably" tired or just accustomed to doing less. 

 

Thanks in advance for any advice or comments.  : )

[ClareM]

Hi I think you are having problems distinguishing between the two because they are possibly one and the same thing. 

 

Post bleed fatigue can be ongoing and I suspect that after time you do in fact become accustomed to it. 

 

I never used to relax and had a very fast pace of life. It’s been a struggle coming to terms with a slower pace but I am more used to it now. 

 

So in answer to to your question I personally don’t think it’s laziness but the new normal. 

 

Hope that helps, don’t beat yourself up about it - at least you are here to experience and grow used to it. 

 

Clare xx

[Louise]

I myself think there is a difference if I'm having a lazy day but if I'm fatigued its totally different its hard to explain, best I've come up with if there is something lying on the coffee table I want (whatever cake, sweets, TV remote) if I'm having a lazy day I think get up and get it but if its fatigue I can just stay sitting leave it there don't care moving is a struggle if having to cook OMG! its such a challenge it has to be simple quick and fuss free if its just me then I wont cook, and emotions are all over the place too.

 

but that's taken a years to know the difference between the two..

 

And NO don't beat yourself up over it, it will get easier and better as time goes on take it from someone who's been there...

 

slow and easy keeping a diary is a good way of seeing your progress...

[weedrea]

3 hours ago, Louise said:

...but if I'm fatigued its totally different its hard to explain

 

For me it is like a brain fog when I can't think on my feet, take extra time to answer questions when someone's talking to me. Almost like the words are hidden. The other sign for me is grumpiness! When I loose my cool because I can't think straight, I get sent to my bed like a kid!!  Half-hour eyes shut is usually enough to reset.

[Daffodil]

I’m with Weedra , grumpiness is a great sign for me. In fact my kids are best at saying to me ‘mum are you ok, you’re really grumpy’ , if I hear that I know my fatigue is notched up at Amber levels and I need to rest. If I don’t I’ll push through a red and that’s not pretty, I then have some pretty awful reactions where it’s  like the brain throws a temper tantrum with me....I try not to run a red light anymore, but did early on and was left reeling. 

 

first I think the slower pace you have to adopt, are forced into after our events is not laziness. It’s the best pace you can manage at the time but because we were all travelling at 70 mph through life it’s like suddenly finding yourself sat in roadworks and contra-lane. You have no choice but have to slow. You have to stop when required. It’s all part of going forward. Be kind to yourself right now, the more time you take the better it will be down the road. 

 

Everyday fatigue for me is my normal. I can get a good nights sleep but still wake up tired so know every action each day is a bit of a horse trading game with my energy bank. What can I do, what do I need to drop if I do that, when can I get rest time, the  internal conversation is just my natural state now. And I do loads now compared to post SAH. But I do everything more consciously and with consideration, I don’t rush and I don’t multi task...I am a skilled uni tasker  who has little pauses afterwards. 

 

 The best analogy is that of a battery pack. We damaged our charger, it probably can never charge back to its out of the box state, so you need to spend it wisely and know the capacity . the level of energy we can hold is unique to us as individuals. Some people will get back to being able to do everything in time but probably differently. Others won’t , time will tell you that but tiredness in the first twelve months is the brain telling you it needs some pause. You can’t see the bruising, the hurt , the damage...but it’s there. Let it heal . 

 

 

[Winb143]

Take it staged as others have said as it is early days for you, and you want to be sure you can do job as before.

 

You might be okay but do what your body tells you to.

 

I have good days and then a duvet day and I don't even work xx 

 

Wishing you all the best and welcome to BTG 

 

We have all been there so anytime you need a rant or are worried come on here it is my safe place lol xxxx 

 

Good luck Caw xxxx 

 

[Bill B]

I found it impossible to resume work. I didn't trust anyone. I prefered poverty to the interaction of work. I know I am a bit paranoid, but I sleep well!

 

[caw]

Many thanks for everyone's response.  It is simply so difficult to slow down!  I guess it might be true that many SAH patients are type A people. 😉

 

However, I am struck by a comment from my ophthalmologist this week - you do know you are lucky to be alive, right?!  It came as a timely reminder for me, though I am still easily distracted by apparent and physical recovery.  On the other hand, my head spins from automatically planning for the next day/week/month/year before bed...😓

 

I recall someone on BTG said the invisible injuries and problems post SAH makes them that much more difficult to explain to others.  How I wished we could all see the bruises and damages inside, if only to remind ourselves that this is an ongoing process!

[JanetY]

I can really relate to this topic. It has been 2 months since my brain bleed, and I am struggling with fatigue. I've gone back to work one day a week, and I am struggling. After working 8 hours yesterday, I came home exhausted! I paid for it today, when I had little or no energy. I wish I could have my energy back! My family wants me to quit my part-time job (which I love!). I'm afraid I might have to. I used to be a super-busy, productive person. I feel like I've lost my identity. 

[ClareM]

Hi Janet

 

First of all stop beating yourself up about getting back to work and back to where you were.

 

Your brain has suffered a terrible insult and two months out it’s very early days, it was over three months before I started back to work on a very slow phased return. 

 

Just pace yourself, 8 hours in one day is probably just far too much. Can you reduce your hours for a while and gradually build them up?  Hopefully you will at some time be able to return to the job you love just give it time. 

 

Drink plenty of water and take lots of breaks that will all help. 

 

It it was over 8 months before I settled back to my job and new reduced hours - full time with a day off mid week. 

 

So so take care of yourself and show down, you’ll get there. 

 

Clare xx

[caw]

8 hours ago, JanetY said:

I used to be a super-busy, productive person. I feel like I've lost my identity.  

 

Hi JanetY, this speaks to me so much. Despite being lucky in physical recovery, I still feel there are losses in higher cognitive functions (such as memory, deduction, organisation, reactions) but it is often difficult to put my finger on specific incidents.  This makes me apprehensive about returning to a demanding job.  I am also worried that lost of intellectual capabilities will somehow diminish my identity. With no major physical symptoms now, I cannot tell if I have already "maxed out" my recovery.

 

There is constant internal struggle in terms of when to return to work. On one hand I know I should defer my return until I have recovered even more, like how many fellow SAHers have said. On the other, I feel I need to start the returning process asap lest I miss the "honeymoon" period where people would have greater tolerance for me given the recentness of the SAH incident. Above all, I am just anxious what a reduced intellect would mean for my career and life planning ahead.

[JanetY]

CAW, do you find that you startle easily? If someone drops something or there is a loud noise near me, my startle reflex is over the top. My teenage children will say, "Mom! It's just a noise!" My heart pounds and I feel that surge of adrelenine as if it were something terrible- not just someone dropping a spoon on their plate!

[Daffodil]

Quote

cannot tell if I have already "maxed out" my recovery.

 

Caw, I’m not sure how long it is since your bleed but I can tell you that 7 years on I am still seeing strides and improvement in terms of what I can do and also process cognitively. The medical profession will say it plateaus at about two years but for me that was more my medical state and healing. It took me that long ( well a bit longer) before I moved past the daily pain and discomfort that I personally experienced, again maybe I just got used to it.

 

regarding work, I decided I wanted to go back to work as for me it was something I really enjoyed and purposeful but equally I wanted to know what I could do. To be honest my consultant and Team were supportive but also cautioned me to be patient and I went back after a long absence of 17 months.

 

The key to my getting back to work and staying in work and being valuable as an employee was to build up my stamina and exposure to the things I was required to do. I can’t do things the way I used to, but I can do them and I can be an asset butI had to build it up really slowly.  Now my employers have been fantastic throughout and very enlightened but then again I was part of the team that looked after all our diversity and engagement of employees so that probably helped me.

 

BUT early on I couldn’t look at excel, if I had a conversation I had to lie Down afterwards, I couldn’t travel into London so had to work at home... when you lay it all out it’s surprising they were so accommodating but by doing so it meant that eventually I was able to do most things again and do them well but it does take its toll and I have to pace accordingly as I have two daughters And all the day to day life to balance with as well, no point giving all my energy over to work.

 

What i learnt is be honest, ask for help, but also be realistic. I don’t now do the job role I used to before my bleed, I earn less and my ambitions are very different but I absolutely love doing what I do, I’m curious about my possibilities still but also say no a whole lot more.

 

you mention a “reduced intellect” , with respect I disagree. I have brain damage which means my processing power is less, my ability to recall short term memory is poor, and I have other issues but I am just as bright as I ever was, and I’m more empathetic and I more sure of my strengths and also where I may need help. In my eyes that makes me better than I was before. 

 

 

i had neuropsychological testing before I went back to work. It helped me understand what my deficits are, how I could better allow for them but it also meant working with my employers was easier as we had a third party view on where I might struggle. I would really recommend doing that when the time comes.

 

And I did. Struggle. I don’t work full time anymore, doubt I ever will but I measure from the day’s post bleed so the fact I work at all is a blooming miracle as I couldn’t remember anything, anyone, walk, stand unaided, read....

 

Go steady. It’s not a race, you have to build this up slowly and steady giving yourself  a strong new foundation. We broke bits of our brain but given time, care and self consideration you can see remarkable progress and I’m still seeing that today. 

 

 

[Skippy]

21 hours ago, JanetY said:

CAW, do you find that you startle easily? If someone drops something or there is a loud noise near me, my startle reflex is over the top. My teenage children will say, "Mom! It's just a noise!" My heart pounds and I feel that surge of adrelenine as if it were something terrible- not just someone dropping a spoon on their plate!

 

I certainly did and still do now, nearly 13 years on.  It's as if the fight or flight reflex has gone into overdrive.  You get used to it eventually but it doesn't stop you being startled.

[caw]

On 15/03/2019 at 21:09, JanetY said:

CAW, do you find that you startle easily? If someone drops something or there is a loud noise near me, my startle reflex is over the top. My teenage children will say, "Mom! It's just a noise!" My heart pounds and I feel that surge of adrelenine as if it were something terrible- not just someone dropping a spoon on their plate! 

 

Yes I do, but I have a nervous deposition to begin with.  I am always frightened by sudden loud noises and quickly approaching objects.  Once, I almost pushed someone out onto a busy road as he tried to give me a surprised tap on the shoulder. 😓

 

One change I noticed was sudden panic attacks for no reason at all (just lying in bed), or the silliest of things (can't find a book).  Heavy breathing, pounding heart and sweaty palms ensue.   

 

On 16/03/2019 at 18:14, Daffodil said:

I can’t do things the way I used to, but I can do them and I can be an asset butI had to build it up really slowly.  

 

Thanks Daffodil for your positive message!  I tend to spiral down negatively and see the worst possible outcome.  Hope I can one day learn from the many encouraging stories here on BTG.

 

[caw]

On 16/03/2019 at 18:14, Daffodil said:

i had neurophyscological testing before I went back to work. It helped me understand what my deficits are, how I could better allow for them but it also meant working with my employers was easier as we had a third party view on where I might struggle. I would really recommend doing that when the time comes.

 

Wonder if you could kindly share the details of your neuropsychological testing e.g. types of tests, areas covered and possible conclusions?  I had wanted to discuss with my neurosurgeon but he thought it might not be useful for my case.  Thanks a lot!

[AMI]

On 15/03/2019 at 10:21, caw said:

 

Hi JanetY, this speaks to me so much. Despite being lucky in physical recovery, I still feel there are losses in higher cognitive functions (such as memory, deduction, organisation, reactions) but it is often difficult to put my finger on specific incidents.  This makes me apprehensive about returning to a demanding job.  I am also worried that lost of intellectual capabilities will somehow diminish my identity. With no major physical symptoms now, I cannot tell if I have already "maxed out" my recovery.

 

There is constant internal struggle in terms of when to return to work. On one hand I know I should defer my return until I have recovered even more, like how many fellow SAHers have said. On the other, I feel I need to start the returning process asap lest I miss the "honeymoon" period where people would have greater tolerance for me given the recentness of the SAH incident. Above all, I am just anxious what a reduced intellect would mean for my career and life planning ahead.

 

Hi all

I am new to this forum, have been reading for the last four weeks but this is my first post. May be I will write a detailed account as soon as I am ready. I had my PM NASAH on 15th Jan. Had hydrocephalus but didn't need any surgery. Went home in 4 days (My husband and myself are medical professionals and so the doctors were confident that we could manage at home).

This thread describes so well what I am going through.

 

My employers have been very considerate and have left the choice to me on when I can return. I am currently working part time (about 5 hours a day with a break of an hour in between) but still have fatigue issues on some days. I also have some left upper limb weakness due to shoulder periarthritis. 

 

BTG has been a blessing in the last 4 weeks. I really appreciate the founder and all the members who share their experiences and give advice.

 

[Daffodil]

Caw, there is a great threadfrom a couple of years back which @Claire M started 

which talks about testing and the pros and cons and importantly not doing it too soon. I will also see if I can find my thread from when I attended some follow up sessions at my treating hospital .