Back To Work

[Teechur]

I'm so sorry, David.

As you know I'm a teacher. I have the best teenagers in the WORLD in my class, but there are some days it is so hard. I am blessed that my kids understand that if I'm wearing sunglasses I am not feeling well and they support me. Great kids.

 

So tired of this, though. I felt last year like I was so blessed to recover quickly and get back to work (although I never made a full week of teaching). Now this year I'm just frustrated and angry that I'm still dealing with these soul sucking headaches with tinnitus. It's snowing here today and my head is at about an 8. I want to go home (I had no morning students due to late start), but I am out of sick leave so going home would mean taking unpaid time off.

 

Last week I was in the ER with head pain. I didn't think I was having another SAH I just wanted relief from the horrible headache I was having.

 

Our changeable weather in Washington state is just what's trying to kill me this season. Summer I felt so good when we had a stretch of good weather with no changes. Winter was hard and spring is like looking into the depths of a den of hungry lions, and no way to stop moving closer to them. I've looked into disability, but no one is going to okay disability for chronic headaches related to SAH.

[Sandi K]

Hi everyone.

David, I can't imagine it. Pre-SAH a 47 hour work week was tiring and required a slower weekend to compensate. A 47 hour work week now would make my weekend basically non- existent. I'd be landed on the couch in the quiet with no conversation. Are there any head injury advocacy groups in your area? Maybe they have information on return-to-work or working with a chronic illness? Would your employer be open to job sharing at all? It seems that you are doing everything you can to make it work and surely your employer could be more creative and considerate!

 

Teechur I do much better in warmer weather too. I wonder if too much of our brain energy is used on yucky days for keeping us warm?

 

Wem, you go girl! Have you added more onto the 10 hours yet or will you stay there for awhile to let your brain get used to it?

 

I'm at 9 hours a week volunteering now and so far so good. I do believe the Dexedrine is helping me. Some days I have more energy than others naturally, other days the Dexedrine gives me a little boost and just snaps my brain back into action. It only works to a point though. It wouldn't give me a whole 8 hour day and definitely not 5 eight hour days in a row. At least not yet.

Sandi K.

[goldfish.girl]

I'm wondering if the job-share option that Sandi already mentioned is a possibility for David & Teechur? Is it something you could discuss with your employers?

 

Obviously, none of us can afford a half wage after a life time of full time paid employment but, and I'm just pondering here, if your brain still has the full function of your pre-SAH ability at work & fatigue/headache is the sole issue (and that's not a minor issue), surely it would be worth your employers while (financially) to keep you on in a part time/job share role allowing your work knowledge & expertise that is still fully intact to train others who can learn from you in the 'other' part time/job share vacancy???

 

Not ideal when you want to retain your full time status but after returning to work for 2 years & not coping either brain wise or physically, it is an option to look at if your brain ability is still up to the job but your physical ability is not?

Good luck!

Michelle xx

[MaryB]

I told my therapist yesterday I think at 54 years old & I have worked since I was 13! Always having a job and doing the right thing. I think I am due & deserve to be able to volunteer 3-4 days a week with seniors or children doing something I can make a difference with and the rest of the time work on me getting well.

I find it almost shameful that in this “modern society” I am force to work for my health insurance when I really could be giving back to society in many more sane and useful ways to earn my health coverage.

[Teechur]

Michelle I wish I could go down to half time. That's actually been my dream for a long time, but it WAS half time teaching, full time as a personal trainer and weight loss coach.

Now I'd like to go half time just to make it through the week intact. When we were on a cruise over the summer with no schedule outside of eating, and I was able to rest if I wanted, run if I wanted, see a movie if I wanted, I was so much happier and healthier!

 

Well it isn't like I'm not happy now, and of course we probably can't live on a cruise ship. I never thought I'd want to have the option to slow down, but now I do. I'd really just love to get back all my energy I had before.

If this does continue past year two, we may have to discuss part time teaching.

[amexdm]

Hello all:

Thanks for responding. I'm with you all. I would like to go to a part time status but that would cost me my health insurance and then not be able to have doctor's care. But I'm not ruling out anything at this point. I've lost 20% of my brain and 50% of my strength. I think we should be able to work part time and be paid part time disability by the government but it doenst seem to work that way.

Working with a 585 day hangover is not real fun though. Rested over the weekend but still dont feel at that well today.

 

Teech your PT teach plan and PT trainer plan sounds good.

 

Mary- I've been working since I was 13 also. Already have credits for disability. Disability pay is just above the poverty level so that's not really a great goal. Why cant they pay us full time pay if we've worked 35 years???

 

Teech-I have heard many people say on BTG that they only get headaches when they do too much or use their brain too much. Makes sense but working 40 hours is using your brain plenty. i don;t know that there is a magical cure it more of a managment issue

 

Sandi- Thanks for the support, you understand I know. a 47 hour week was relatively easy pre SAH but now it can set us back 2-3 weeks.

 

GG- If go to part time, I'll have more time to visit Scotland. But I cant buy any Spiced. Thats no good.

 

Legs are screaming in pain today, a 10. They have been better, just having a bad day.

Thanks to all,

David

[Winb143]

David have you got a foot rest? they help a bit, stop your feet from going to sleep.

I had one but used to keep clicking it top then bottom, I drove others up the wall. what's new, no replies please.

Get well soon David and I wont sing xx

Be Well Soon you fighter you

WinB143 xx xx

The Boxer by Simon and Garfunkell :Spelling? lol

[Wem]

David,Teechur

 

I really hope you are both able to find a balance that works for you. I am sticking with 10 hours a week for now, and find that draining at times. Though on the positive side my headaches have diminshed since the start of the year, but the heaviness in my legs and lack of coordination remains a problem for me.

 

David, I recognise the loss of health insurance must be a major obstacle and I am not sure what I would do in your circumstances. I am not saying we have an easy ride of it this side of the Atlantic, loss of income and ultimately pension contributions is a major factor over here, but we do at least have the NHS to fall back on for any future emergency care.

 

My Occ Health advisor keeps reminding me that my energy levels, both physical and mental, will plateau at some point and I need to be prepared to cap my working hours when that happens. Not a decision or indeed a concept that I am too happy about, but I guess it is the reality that most of us have to be prepared to face and will no doubt play it's part in the process of full accpetance of living life post SAH.

 

Strikes me, instead of leaving us to find our own routes through this maze, we almost need a 'life coach/counsellor' to guide us through each phase of recovery, 'cos every time I move up a rung, I seem to be faced with new challenges.

 

Be well,

Wem

[Teechur]

My body is an oxymoron (no cracks...). I really think it's the mental stuff that gets me WAY more than the physical stuff. This weekend the weather was GREAT on Saturday. I woke up with just a small headache. I had registered for a 12 hour race--yes, that is what it sounds like. You run or walk for 12 hours. I completed a total of 42.71 miles.

 

Yet later in the day we went into a "Brain Puzzle" shop and trying to puzzle through some of the activities (the shopkeeper was showing me some games and I didn't want to be rude and say "You're giving me a headache!") made my head immediately start hurting. I know you all understand, but others are like "What?" Yes, it hurts to think sometimes.

 

Sunday the weather was overcast and the barometric pressure had dropped. If it was just "all in my head" I would have been GREAT on Sunday because it was my birthday, I'd slept well in a hotel bed (Westin--husband gave me the "gift of sleep" after my race), and we were just chilling. We went to the EMP (Experience Music Project--sort of a music museum) and the Sci Fi Museum (where a child was overheard referring to tribbles as "What are those puff balls for?" Poor poor uneducated child). We had to go home early due to my stupid headache.

 

Today another weather change and right now my head is exploding. I should stop using the computer as it does not help.

 

Because physically I can do a LOT on a good day, I doubt anyone would feel I qualify for disability. I do think that part of the reason I can do a long run like that is endorphins, which unfortunately don't show up during a teaching session. I have been watching the online high schools for jobs, but I don't think I'd enjoy that as much. I like who my kids are and how I get to know them, so I don't know that I'd enjoy that online lack of personal relationship.

[MaryB]

My advice is to work as little as possible until like 6 months and only increase slowly. ........because once you committ it is hard to go back. I average 34 hours a week. That is the mininmin (SP) you can work for insurance coverage. I need to work 3 mornings a week for 4-5 hours that would be max health wise.

 

That working for insurance is sooooooooo wrong. I have been working all my life and really I have to work for my health care now??? I am hanging on the hope that we can get some other coverage in the future with Obama Care as I paid $9,500. for health insurance out of my paycheck and another $10,025 out of my pocket for deductable etc...... last year. Although if that coverage STILL ends up costing us $20,000 a year it will stink as bad as this situation does.

 

It woud be one thing to kill yourself to have a better life stle but who on BTG cares about life style over health?? It is impossible not to have health become priority.

mary b

[Teechur]

I completely agree. I think it is ridiculous that if you're ill in the US you need insurance or you can go without treatment, but you can't get treatment unless you have insurance, and you can't get reasonable insurance unless you have a full time job. I do hope the Affordable Care Act will help and that in the years to come, they can move closer to a single payer plan. I was listening to a man on the radio the other day who used to work as a Lobbyist for insurance companies.

 

He had a crisis of conscience after watching the companies WORK to deny coverage to people who had paid their premiums. He just could no longer do it. He realized that the way we do health care (or really, sick care because until the ACA there was little coverage for wellness care) was not only bad for the nation as a whole, but that people he loved were being impacted by it and he was helping the companies try to push legislation that was in the best interest of the corporate profits. He was actually one of the authors of the AFA.

 

I had scans on all of my arteries a few months ago because I have Fibromuscular Dysplasia (discovered during one of my angiograms). It was in my best interest, but also the insurance company's to determine if it was present in any other arteries. It was only in the vertebral and internal carotids, but it's most common in the renals and can lead to renal failure.

 

I paid the lion's share for that even though I have fantastic coverage, supposedly. If I didn't have it done and my artery resected and I didn't die, that would cost insurance so much more than the cost of the scans. Yet they determined it was not necessary and thus wouldn't pay for most of it. Just paid the office call portion. They aren't interested in making sure I stay well, they are interested in making sure they make money off of me. That's just plain wrong.

 

Ah well! Life goes on and the blessings outweigh the frustrations by far.

[Sandi K]

The past week was my third week of three days, each day 3 hour shifts. 9 hour week.

Had a headache that started the second day and went right through until I finally took something at end of third shift. Hopefully just a sign of adjustment.

 

Besides it being the third week I was also working on new tasks in Excel and I stopped taking 2.5mg of my energy boosting med because I had been having trouble sleeping the 2 weeks before. My sleep is fine again but that change in med might be causing headache as could the working on computer in excel. It's hard to pinpoint exact cause.

 

It feels good to be working on stuff that resembles what I did in my job (I'm volunteering). It feels familiar and comfortable.

Onwards and upwards!

Sandi K.

[goldfish.girl]

Sandi,

You have done so well increasing your days at work & the added tasks. Hopefully this will just be a small blip as you adjust before you continue on to do even more. Remember that adding in travel to work & organising things at home to cover doing three days at work will need to be adjusted to as well and uses up some more energy too.

I am sure you will continue to do well

Michelle xx

[MaryB]

Sandi, Not only have you been "working more and harder" but you have been busy more and have had a lot on your plate the past month or so. You really do not have as much down time like you once was. Are you even having to nap daily?

 

If I am home I have to lay down but at work now if I think I can only rest for that 30 minutes it is not enough I am best to keep moving. My 2 hour lunch has been squashed to maybe an hour now or less and it is not enough to rest, eat etc....Somedays I am like I cannot even dare to sit in a comfortable chair or it is all over for me for a few hours. I know this is not good but it happening now. I wish I could somehow keep that work balance like it was planned to be for me.

 

It is like give an inch and there goes a mile!

maryb

[MelS]

Well, my return to work started on the 1st March and its been a hard slog already, mentally and physically. Although my workplace have been incredibly understanding thus far, as they have planned and extremely gradual return, I just hadn't prepared myself for it being such a tough challenge.

In my life pre bleed and clipping, I think I have mentioned that I sold internet infrastructures to corporate clients. As an am unable to drive yet and we are really "sucking it and seeing", with regard to what I can cope with and "do", I spent my first few days in sorting out administrative things, like clearing two years of email, getting my Blackberry up and running, clearing my desk etc.

 

My workplace is an ex Bank of England gold Bullion Vault which is in a city centre 14 ft underground, so I knew even getting there and being in it was going to be a huge challenge in itself. My husband also works part time, so initially he was able to accompany me on the train and then hang around for a few hours (as I am only doing half days at first).

 

There has been some tears, just as the amount of stimuli both in the city and back in the workplace is really overwhelming and my divided attention as well as memory and concentration are a bit "broken" after my bleed and surgery. Getting the train even off peak and then walking 10 minutes across a busy city is a REAL challenge... but I will keep trying. Thankfully I can do some of my time at home, which was really accommodating of my company.

 

We are lucky here in the UK, in that we have a government body called Access to Work who help people with disability (including acquired brain injury) get back into the workplace. My assessor has recommended a voice recorder and software, plus a white noise machine and other coping strategies for me and my workplace to implement. Have any of you used the white noise machines? My concern was that because i can tune anything out it would not work... but I would quite like to get some feedback before my company have to spend money....the government contribute some but not all of the cost.

 

I'm anxious not to get too negative as its only my first few times in, but I was shocked at how brain tired I got again.... two years on a you forget how it feels.

This week I did two half days (which makes me feel irrationally guilty on the company) and I had to go to bed after the second stint my brain hurt soooo much.... I was gutted.

 

BUT, I have to give myself a break, see how it goes and after a reasonable period, if it doesn't work, the make another life change.... you never know it may just get easier.

 

Anyhoo, thought you might like an update. Take care and you all keep strong, you all continue to support and inspire

Thank you

X

[Sandi K]

Mel, it's a big shock when we find that even doing the easiest things knocks us out. Pre-bleed all that stuff you listed would have been an after-thought. You would probably clean out your email while you were listening to voicemail and organizing papers on your desk, right? Now it's a major milestone to do any one of those things on its own.

 

Just getting to work is a major part of your day. There is a lot of brain power required to get ready in the morning. Firstly, you may be waking to an alarm instead of allowing your brain all the rest it wants. You've got to figure out what you want to wear. Decision making starts early in the day! It takes some thought process-- what's the weather going to be like, what is my agenda for the day, what do I feel like wearing?

 

The nervous excitement of returning to work takes energy as well. The anxiety of not knowing how our brain will manage takes energy. The saying hello to everyone and thinking of the right reply when they ask how we are is energy draining. Answering 'how are you' can be awkward. Oftentimes we look great! But if we aren't feeling great people look at us weirdly when we say anything but 'fine, thank you'.

 

Negotiating our bodies through crowds is hugely brain draining. For me it is anyway. If someone is with me I always take their arm. I get 'lost' in the multitasking required. You have to think about where to put your feet, try to keep from bumping into other people, keep yourself safe from others bumping into you, try and block out the multiple conversations going on, all while being assaulted with the noise of the trains and bad lighting. While all that is going on in your brain you have the overall objective of ensuring you have the ticket and getting on the right train and getting off at the right stop. Just this part alone justifies a rest for your brain!

 

What were once easy tasks that could be completed without thinking may now require the same effort as writing up something like a contract.

It does get easier. It takes practise. In the meantime having respect for the amount of energy required for even the easiest of tasks is necessary. Give yourself a break. You managed a whole bunch of things your first couple of days.

 

I'm learning that there is value in taking the time to complete even the smallest task slowly while concentrating and focusing fully on what I'm doing. It's helping my brain and acknowledging how hard my brain works for me.

 

Keep a log of things you do in a day so you can watch your progress and try and figure out what triggers your fatigue. Right now it might be everything! But overtime you will gain the ability to do more.

Sandi K.

[Winb143]

Mel,

Sounds like you are doing well, small steps at first then onwards and upwards, do not give in to it.

Listen to Sandi she has been there and I call her" SHEWHOSPEAKSWISE."

Seriously keep going and all the best to you All.

Love

WinB143 xx xx

[Wem]

Sandi - very insightful. I think you summed up the whole experience and the effect it has on our brains very well indeed.

 

Mel - I am nearly 3 months in now and struggling to attain the higher levels of concentration needed to complete my work assignments. Last week was particularly bad and as a result I am totally exhausted today, unable to find any energy to spend time with my family, which is most certainly not what I wanted.

 

It is tough and I am hoping that at some point it will either get better, or I will have the courage to make the decision to change direction.

 

Hope this does not come across as too negative, the journey is tough, but as you said we gain tremendous support from this site.

Keep posting we are all in this together, and I hope things start to improve for you soon,

Wem

[Sandi K]

Thought I was doing so well with 9 hours a week. Three days, three hour shifts. Felt really good at the end of the third day last week! But went to a big warehouse store on the way home and I could feel the blanket of fatigue beginning to cover over me in the store.

 

Although I've done a lot since that day (last Thursday) I've really needed more rest. Went shopping on Saturday, friends came for supper yesterday. Today I'm really feeling it. I've still done meal planning and grocery shopping, vacuumed, and went on treadmill so I'm managing to do stuff. That's it though.

 

Cancelled meditation class and I'm on the couch now with my head squeezing in. Brain always wins!

I had hoped to move up to 4 hour shifts this week and a year ago I would have done exactly that. I have learned something on this journey - you can't force your brain into feeling well. Sticking with the 3 hour shifts for awhile. Just going with the flow.

Sandi K.

[DawnS]

Hi Sandi,

it's easier said than done, but try not to feel too despondent. Adding any working hours to the week is shockingly exhausting! When I first started back to work, they increased my hours by 4 every other week and it was very hard to cope with. There are so many other things that I am unable to do in addition to working and there are some days when I have to try very hard to remember why I thought working full-time was such an important goal.

 

At least now I have some money to myself, I can buy petrol to get about (even if I haven't got the energy to use it to visit anybody!). My benefits would have ran out 2 months ago which was really worrying me so it's nice not to have that in the back of my mind. And I am glad to be able to take the pressure off Andy financially. So, when I think about it in terms of good things instead of how compleletly floored I feel, the overall impression has to be that it's better this way, even though I still think a lottery win would really be the best route

 

I now work every third Saturday (which comes round really fast!) and I keep getting Tuesday as my rest day. This is too early in the week to be of any restful use as I then have a 10 day stretch where I work 9 days in that period and I've been getting more and more exhausted. Yesterday, I had a word with my team leader and he immediately changed my rest day to Wednesday of this week. Wow! One of the hardest things about my new role is adjusting to how understanding my manager is!

[Wem]

Sandi,

This seems to be very closely related to my Duvet Days post yesterday.

Take heart, from what you describe you are packing an awful lot into your days. The challenge seems to be not to get too carried away when we are feeling great and ease back on the throttle a little.

 

I am still on 10 hours a week and struggling to do anything else on my designated work days, and even on my non working days I suffer overwhelming fatigue if I unwittingly over stretch myself.

No easy answers, though I am ever hopeful this will improve in time.

Take care,

Wem

[Sandi K]

Dawn, having a supportive boss makes such a difference! What a relief that you were able to change departments. If you were still in your old role think of where you would be now. I'm not saying its easy, you are working a tough schedule now but I wonder if it would have been at all possible in your previous role to work these hours.

 

Wem, I hope you are feeling better in the next few days. It's really important to acknowledge how far you've come and how much you are doing. I don't always practise the advice I'm giving you! It's important to feel good about where we are and what we are doing. Compare to when you came home from hospital, not to how it was pre-SAH.

Sandi K.

[DawnS]

Hi Sandi,

you are totally right. I think if I had tried to stay in my old department, I'd be on the scrap heap by now. It's not just the way my manager was with me, it was the whole atmosphere of the place too. It's so different upstairs! We have what's called an 'availability rate' which is how long in the day you are available to accept calls. It should be above 85% each day, I usually come out at about 93% and so my new mananger has told me that if I'm having a particularly difficult few hours, I may go 'unavailable' for 5 minutes and go get some air. Shocking stuff after years of being used the other department!

[Macca]

Hi Sandi, Dawn,

sorry I'm a little late with this. How ironic it seems to be that when looking from the outside we are all great givers of advice but when we are on the inside we cannot see a clear way out and we do not take our own advice that we so readily give to others. I am a culprit here as well. Remember our health is what matters above all else, but there are businesses to be run and our bosses can be ruthless in pusuit of a bonus cheque and targets. They often can't see our problems - you can't see it,touch it or smell it - but it's very real to us! We also have bills to pay!

 

I think I am going to look for something else to do that isn't so demanding.

I torture myself trying to do what I could do before I was ill, but the intensity and pressure makes me think it is no longer worth it. I think I need to get real and more importantly - get out!

Best wishes

Macca

[MaryB]

Hi all, Just a few words of more wisdom or lack of from me. I have a new work schedule but did not make it through it this week as I moved some branches from trees we had cut down 5 days ago. I certainly did not move the heavy stuff but just drag stuff for about 3 hours to the road to be picked up by the city. Apparently this is out of the question for me to do.? I have been paying for it for 5 days now. Before SAH and all this brain stuff my fibro pain would knock me a good one, but now I get the pain from my head to my toes along with this exhausting exhaustion.

 

I miss not being able to do yard work and hard work. I really do like to work hard. I do not know how to not work hard, I had a week off with nothing to really do and was bored out of my mind (although I took a 10 hour day to myself and paid for that for 5 days too!).

 

In therapy we talked about only worrying about my job ....which was working well until we became shorthanded in every department and everyone is very burned out. I do have a supported dysfunctional work place however so I guess I am happy for that. I think at least 98% of them "get it" with my head so I should be happy for that at least.

 

Learn to pace I know ....I am just needing to say I cannot believe I cannot do some physical labor etc. by this time..or have anything at all outside of my 3 1/2 days of work. Maybe a 2-4 hour day here or there with dinner or lunch and some shopping but no adventures! No flying by the seat of my pants! No more getting full of dirt in the garden! With my job working with small animals I certainly have a mental and physical one where I seldom ever sit down unless I have to take a phone call. Augh. ... sorry needed to rant a bit.

 

Sorry to you too Macca.

Maryb