amexdm Posted May 29, 2012 Share Posted May 29, 2012 Hello: I apologize for being absent but havent had alot of energy to contribute. Macca- I wish you well in your return. We're in this together. I know it is hard for you so be as strong as you can Sandi- Thanks for all your wishes and I know this is a hard time for you. Can't imagine job being posted. I hope they find a good spot for you to make you happy. I have until September to make it. I'm gonna try. Now probably not a good time to show weakness or doubt at work. I don't think they are unwilling to work with me but we have summer hours now so it's 36 hours for everybody. Just 36 a bit much for a brain patient at the moment. Thanks to all for the thoughts and we'll get thu this. Regards, David Quote Link to comment Share on other sites More sharing options...
Macca Posted May 29, 2012 Share Posted May 29, 2012 Win,Cathmat, Sandi and David, thank you all so much for your thoughts and best wishes. Just got home from day two and I'm beat!. Yes, I am proud of what Ii've done, but there is that old saying - pride comes before a fall. I'm walking on the edge right now, doing my best not to look down or slip off!! there are so many problems people have and they've just been waiting for me to return to deal with them properly - this is no criticism of the person standing in for me whilst I was off - she did a great job but didn't have the authority that I have - but they're straight at me 'wham bam thank you mam' and in my head, I'm kind of 'Whoa, nothing's that important, if you think it is try a little bit of what I've just had' - talk about storms in teacups!!! Late start tomorrow - I've decided - I need a lie in!! And I'm not switching my phone on until I get there either! Tomorrow is another day! Hang on in there David, you too Sandi, I know you're having it tough too Macca Quote Link to comment Share on other sites More sharing options...
Winb143 Posted May 29, 2012 Share Posted May 29, 2012 (edited) You wont fall or fail....it isn't in your vocabulary xx (can never spell vocabulary) I'll just say it isnt in you....lol I think...you will make it Macca.....So head up....now quick march xx ... Off to bed for you~ Goodnight n GodBless xx Be Well Love WinB143 xx xx Edited May 29, 2012 by Winb143 Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted May 30, 2012 Share Posted May 30, 2012 David & Macca, I think you are both doing amazingly well. I know neither of you are finding it easy but you are there, you are doing it, giving it your best shot. Be very proud of yourselves. Good luck to both of you. Michelle xx Quote Link to comment Share on other sites More sharing options...
mshawx_head Posted May 30, 2012 Share Posted May 30, 2012 Macca - well done on going back to work. Now all you have to do is to build the strategy which enables you to manage the fatigue and tiredness. Simple, eh ? (If only it was. But its vital you do that.) I know exactly what you mean. At work, pretty much they assume that I am over my illness now. When people ask how I am, they invariably say "fully recovered now ?" because I look the picture of health. I've given up explanations - they don't want to hear. Goldfish Girl - that comment about willful determination to overcome the damaged bits of the brain is spot on. Unfortunately, it takes us all a rather long time to realise that we can't utilise that strategy - like we may have done before our head explosion. To try to do that is really, really harmful for us, but its through forum's like this that we can hopefully understand (and accept !!!) that a bit more quickly, than we might on our own. Sandi - your postings continue to inspire and inform. Its really, really hard to make the transition you're going through - my heart is with you. I've found that if I can manage the tiredness (ie. not let it get too bad) then I can achieve much more, but when I get fatigued because I've tried to do too much and drive on way after my head was already telling me to stop, then I struggle - really struggle. When I get tired, then I get negative and feel depressed. I've begun to understand that its when I am tired that the negativeness hits me. I can watch myself transforming into a different person. That's when I also become a real grump with my hubby. I know I'm like it but seem incapable of "just snapping out of it" - my brain is so fried by that time that I don't have the energy to do so. So that's my current mission - manage the tiredness. I've written on this before, but I really find exercise helps - whether its a brisk walk, a gym session or a cycle ride. But I think what it does for me is to give my brain a break - a real break. Its difficult when you are concentrating on exercising to have much left for the brain to work too much on other stuff. I expect as well, there is a physical thing with vigorous exercise in it helping to aerate (spelling ???) the blood and that makes me feel more awake. The CBT therapist has also pointed me towards Mindfulness - a sort of meditation. Look for Jon Kabat Zinn's book "Full Catastrophe Living" although there are some more readable books on the subject. I haven't entirely embraced it but it is just another tool to have in the box. Hang on in there everyone. Mags x Quote Link to comment Share on other sites More sharing options...
Sandi K Posted May 30, 2012 Author Share Posted May 30, 2012 Mags, so many good points in your post this morning. I agree wholeheartedly that Michelle is spot on with her description that we can't fix this one through self determination. Michelle, you really did hit the nail on the head. That's sums up exactly what I've been trying to do. My GP said its important to do at least 30 minutes of physical exercise everyday to balance the mental fatigue with physical activity. I found it impossible when I was at bottom with fatigue and feelings of negativity a couple of months ago. It was only once I began to lighten my load (resulting in some rest for my brain) that I was able to begin doing the exercise again. Now Im doing it every day and it feels great. I agree that it gets your blood flowing and gives your brain a break from cognitive activity. You need some energy to begin with though. If you have no energy it's a good sign you are doing too much (speaking to myself here!!!). My psychologist has been speaking about mindfulness. About focusing on what I'm doing as I'm doing it. I suppose that also gives the brain a break if you aren't planning too far ahead all the time and thinking of the 20 other things you have to do. I find it easier to do this when there aren't deadlines. So it's easier to be mindful planting flowers at home than it is when writing a briefing note at work (where there are 20 other things that need doing at the same time). Funny though, the mindfulness would be better served with the writing of the briefing note. Yoga and meditation help focus the mind. You need energy to go. All of my energy was being used at work. I wasn't just giving the best of my energy to work, I was giving all of energy to work. Being at home had become a refueling station. Resting in order to go back to work. But it got to the point where I was never getting enough rest. This post doesn't sound very inspiring! I always believed that a person should work first and everything else comes after. Food on the table, roof over your head, and fun. It all follows work. Get your work done and then you can have fun. Now I'm learning that I worked too much and it impacted my health. Now to find balance that fits my brain. Sandi K. Quote Link to comment Share on other sites More sharing options...
Macca Posted May 30, 2012 Share Posted May 30, 2012 Thanks for all your kind comments - I slept forever last night - I was asleep about a half hour afte my last post last night - half past nine this morning when I got up today - i did six hours again yesterday! Five today........ Sandi you talk so much sense, you are turning into my sanity clause, ('there ain't no sanity clause' - marx brothers I think) My head is thumping now - off to bed. See you all tomorrow Sleep tight Macca Quote Link to comment Share on other sites More sharing options...
Sandi K Posted May 31, 2012 Author Share Posted May 31, 2012 Macca, I hope you slept well. Two more days and the week is done, you are more than half way now. I don't know about 'sanity clause' but I sign the kids Christmas presents with 'sandi clause' have a good day Sandi K. Xoxoox Quote Link to comment Share on other sites More sharing options...
MaryB Posted May 31, 2012 Share Posted May 31, 2012 I was raised work always came first but it now an dhas for some years left no fun left for other things I use to enjoy as the hard work took all I had. I wish I could just win some $. Quote Link to comment Share on other sites More sharing options...
EmmaF Posted May 31, 2012 Share Posted May 31, 2012 Hi everyone - I just wanted to drop a quick thank you on here. Some of you may remember I posted a little on here about 6 weeks ago shortly after I returned to work. (Sorry - I'm really not very diligent at keeping an eye on these boards!) At the time I didn't realise but I was feeling very scared and inadequate following my return to work and some of your comments really lifted me. I'm following some of your advice, like taking a walk during the working day to clear my head - I'm very lucky that I work very close to St James' Park in London so at this time of year its wonderful to go for a wander, appreciate the flowers and the lovely new ducklings - things I'd previously have overlooked. Having had a quick flick through comments over the last few weeks I'm pleased to see the progress you've all been making - be that getting back to 'normal' or making the changes you need to get back to a life you're happy with. It's inspiring to read - I've still got some way to go to get there but am now confident that I can get there. So, thanks again, and best wishes to all of you in your recoveries. Emma x Quote Link to comment Share on other sites More sharing options...
Sandi K Posted May 31, 2012 Author Share Posted May 31, 2012 Emma, I'm so pleased to see your progress! Thank you for coming back and sharing with us. It's wonderful that our tips are helping. Keep up the good work, you are doing great! Sandi K. Xoxoox Quote Link to comment Share on other sites More sharing options...
Louise Posted May 31, 2012 Share Posted May 31, 2012 Emma its great to smell the grass and see the flowers - its like you've never seen them before (I remember that it was a fab feeling) Well done.... Quote Link to comment Share on other sites More sharing options...
pain in the brain Posted May 31, 2012 Share Posted May 31, 2012 Hi folks, I had my SAH on 1st April this year, and am off work at the moment, not quite sure what is going to happen in the future. I am really finding it difficult to think about going back to work at the moment, my current (first?) sick note runs out mid June and based on my activities today (about 2 hours sorting out paperwork) I cannot imagine going back to my open plan, busy office where I work as a project manager / multi-tasker extraordinaire in an office where there is constant noise, constant disturbance, and constant conversations on about 10 + projects that I look after. I read everywhere that it is surprising if you go back to work after 3 months. I had a minor SAH (only a small coil needed to be fitted) but am still feeling tired etc. Do people actually feel that their tiredness has diminished before they go back to work or do you just accept that you are going to have to return to work while feeling totally shattered? As an aside, my SAH happened at a time when I was extremely stressed with work, and doing long hours but I dont think that there is any evidence of stress and SAH being linked. Has anyone got any thoughts on this? Quote Link to comment Share on other sites More sharing options...
Louise Posted May 31, 2012 Share Posted May 31, 2012 Hi there Warm welcome to the site glad you found us. Your still early in your recovery dont worry about not feeling able to face work yet, just go see the GP before your sick note runs out Im sure they will be more than happy to give you another untill you feel ready. I think its surprising if you can do much at the 3month stage, mines happened when I was really stressed too... take care, rest relax and keep the fluid intake up.... Quote Link to comment Share on other sites More sharing options...
SarahLou Posted May 31, 2012 Share Posted May 31, 2012 Hello, Welcome to BTG! As Louise says,you're early in your recovery so try and not think about work yet, concentrate on you and only you. I was off work for 15 months and did feel kinda pushed into going back to work. I still only manage 18hrs a week. It is a struggle, fatigue hits bad, but it's great to have a bit of 'normal' back. I want to work and need to work but not yet sure about my career, I feel that 'something isn't right', I want a change, something is missing but I'm not sure what! Things like we've been through make you look at life differently, maybe re evaluate a few things. Does this make sense??!! Its been a very busy day for me at work today and my lil re arranged brain is struggling a bit! Ohh yeah... As I say to everyone... If you haven't already, read 'a letter from your brain' on the home page under inspiration. It's a fantastic bit of writing. I wish you well with your recovery. Take care and keep smiling, SarahLou Xx Quote Link to comment Share on other sites More sharing options...
MaryB Posted May 31, 2012 Share Posted May 31, 2012 Since this is back to work thread I will unload here. I normally never cry NEVER! Today I got in to see my family Dr. as he has taken over 3 Dr.s practices and it impossible to get an appt except with nurse. My hip has been killing me and waking me up at night and since I am allergic to my pain medication it doubly sucks. So he walks into the room and I start to cry. I got myself together but I asked him if this is as good as I am going to be, "DO you want my honest answer?" Me: yes Dr. "Probably, but you are doing & have done everything possible between the fibro and brain". Me "SO did I also have a stroke with the SAH?" Dr. "yes, in the occipital lobe and that damage is permanent". I showed him my crooked fingers and asked if that is going to be arthritis as well and he said "Sure looks like it". I think he was going to hug me when he left but I stuck out my hand instead. I also told him I had my share of this kind of . http://library.thinkquest.org/19910/data/occipital_lobe.htm Ok that makes perfect sense to me. I also told him it takes everything and more for me to go to work and pay for my health insurance and I cannot make it like this until I retire. I got giant cortisone shot in my poor right hip and that DOES not even hurt when given anymore. What the heck? I remember when I thought those were painful; those aren’t even bug bites to me now. I get so tired of fighting the fight - I am not suicidal or anything just tired of fighting to have a decent life. I KNOW I AM LUCKY, very lucky I get all that but I am just tired of thinking about what I am ding at all times as well as physically having pain in my body at all times. I would make a deal for 5 good days a month. Tuesday I see my neurologist for a follow up. Ok, I am done complaining. Going to take a nap b4 the viewing/ showing/ wake of my bosses mom this evening. Headache is coming on. Thanks for having a place for me to complain. Mary Quote Link to comment Share on other sites More sharing options...
Macca Posted May 31, 2012 Share Posted May 31, 2012 Emma Good to have you with us - I am back at work now, just done my fourth day, one more to go to the weekend then I'm off on holliday and I feel like I need it. It's hard, some days are harder than others, but they're all hard!! Just keep putting one foot in front of the other, take regular breaks away from your desk and break the day down into small chunks. Any time you want to rant just come on here and let fly - that's good in itself. Just because you look 'normal' others think you are 'normal' but they don't see the internal turmoil. Just like the duck on the water serenely cruising along whilst under the surface the feet are going like the clappers, but you can't see em! Good luck and keep posting best wishes Macca Sandi - nice touch for your kids, that's beautiful, I like that! Awwwwwwww------ Macca Quote Link to comment Share on other sites More sharing options...
EmmaF Posted May 31, 2012 Share Posted May 31, 2012 pain in the brain said: Hi folks, I had my SAH on 1st April this year, and am off work at the moment, not quite sure what is going to happen in the future. I am really finding it difficult to think about going back to work at the moment, my current (first?) sick note runs out mid June and based on my activities today (about 2 hours sorting out paperwork) I cannot imagine going back to my open plan, busy office where I work as a project manager / multi-tasker extraordinaire in an office where there is constant noise, constant disturbance, and constant conversations on about 10 + projects that I look after. I read everywhere that it is surprising if you go back to work after 3 months. I had a minor SAH (only a small coil needed to be fitted) but am still feeling tired etc. Do people actually feel that their tiredness has diminished before they go back to work or do you just accept that you are going to have to return to work while feeling totally shattered? As an aside, my SAH happened at a time when I was extremely stressed with work, and doing long hours but I dont think that there is any evidence of stress and SAH being linked. Has anyone got any thoughts on this? Hi Pain in the Brain, I had my SAH on 30 December last year and managed to start back to work in early April. To start with it was tough - even the simplest tasks exhausted me. I think on top of the SAH, sitting on the sofa watching Greys Anatomy box sets (interesting choice I know!) was not especially taxing so I was no longer exhausted and felt 'back to normal'. Once I started doing more the exhaustion quickly came back! My job doesn't sound dissimilar to yours, juggling multiple projects etc.. Multi-tasking was hard at first as my brain relearned how to do it. Meetings and busy office environments were/are also exhausting. One of the contributers on here suggested I should take a walk to clear my head after a few hours - I'm not sure if your job will allow you to do this but if you can, try it - it really helps to get away from the noise. The doctor recommended a staged return which I did with more working at home (to avoid the tiring commute) and shorter hours which I'm starting to build up again now. My boss has been very supportive which has allowed me to get back into the swing of things at my own pace - in the early days he kicked me (nicely) out of the office if I was still there past the time I set myself. I often found once I got working I felt like I was able to do a normal day - only I paid for it the next by feeling dreadful. How is your boss? Will they also be supportive? Do be honest with them (and yourself!) about what has happened and your limitations. I've been overwhelmed by the understanding of colleagues - I hope you also work with such nice people. I think you'll know in yourself when you're ready to get back to work, or if you're just not yet (I certainly wasn't ready after 2 mths - you're still very early in recovery). In the first 2-3 weeks of going back I was shattered all the time and all the energy I had was devoted to work. Now 2 mths in my energy levels and headaches are very much better - friends are saying I'm more like 'Emma' again so it does get better but it takes time. Make sure you listen to what your body is saying to you and don't rush yourself. Best of luck with your recovery, Emma x Quote Link to comment Share on other sites More sharing options...
EmmaF Posted May 31, 2012 Share Posted May 31, 2012 Thanks Sandi K, Louise & Macca. Macca - enjoy your holiday, you'll need it after this week! I timed my return to coincide with Easter then the May Bank Hols - I found I could cope with the work (admittedly for shorter periods) so long as I had a bit of extra 'recovery time' at the weekend! Emma x Quote Link to comment Share on other sites More sharing options...
amexdm Posted May 31, 2012 Share Posted May 31, 2012 Mary, You're not complaing, you're venting. And we're here to listen. You've been through so much. I don't believe one person should have to go thru so much. But please do cry. You know I hit my rock bottom last week and it felt good to get it out. Lots of support here. I am in constant pain also but am fighting on. Is there another pain med that they can give you besides the one that you're allergic to? There has to be. I would think the neuro can help. I just tried to make an appt with well recommended neuro and shes booked until mid July. I will have to try another. First neuro I saw told me I had neck problems. Not at all, so hope yours is a good one. Here for you anytime or I'm gonna come to Indiana and sit on you til you laugh! Much love, David Quote Link to comment Share on other sites More sharing options...
SarahLou Posted May 31, 2012 Share Posted May 31, 2012 Hey my lovely Mary.. Big hugs being sent to you. As David says, it's ok to cry. You are a woman with such strength, I admire you, special lady. Lean on us, we will share our spoons. Remember.... The wounds I have can heal and although the scars, whether they are visible or hidden, will always be there, they give me protection from further damage and remind me that I have healed. Take care, SarahLou Xx Quote Link to comment Share on other sites More sharing options...
MaryB Posted June 1, 2012 Share Posted June 1, 2012 Thanks SL & D, I am all better now. Ok, I am just done whining. I was just so surprised at my tears when I saw my GP. I just did not expect that but he has always been honest with me and prior to SAH/ stoke / tumor he use to say......"Please have an easy problem today Mary". I know I am complicated but I use to laugh at that. I am pretty sure his sister has either Lupus or MS, I cannot recall which one and his father use to be one of our Doctors. I just think seeing someone who has already treated me honestly and truthfully was a gift today that I needed as I just needed "it" all to be validated for what I already knew in my heart. He had a look on his face like that stone face dr that looks at you and says something out of his BUTT but he knew could not pull that one on me. He was really sweet when he asked if I really wanted to know what he thought or not. I could tell it made him sad. It was just so comforting to see someone who knows me without having to explain the whole darn story & not give me any BS. I am tough. My problem with anti inflams and pain medication is that it tears up my stomach. I have a codiene allergy so there is not much on the market that helps. I get by ok. I took anti inflam for so many years that it may be one of the reasons I have come up with some other autoimmunine diseases. If something tears up your gut you don't wait until it tears up the tissue in your mouth and throat. Thats the catch 22 of my life. Good thing is I have been on muscle relaxters and they work well but knock me out. I just now b4 this note was reading about their effectiveness with pain but I can't recall what it all said!! Just know it was an article on pain and proven treatments that work. I am also back to sleeping 3 or more hours a day. Errrrrrr. MaryB Quote Link to comment Share on other sites More sharing options...
Macca Posted June 2, 2012 Share Posted June 2, 2012 Well, that's it - I just finished a full week back at work and now I'm off for a week and a half. I did reduced hours admittedly, but hey I got through it - sort of. Definitely did too much yesterday, but I couldn't let it go. I wanted to gget it done and leave on holiday with a clear conscience. Wanted to finish at 2 but got out at 5.45. Suffering for it now but don't go back to work until 14th June. Mary, just caught up with your posts - I hope the treatment is working for you. Hope every one is ok and thanks for the good wishes. I will enjoy my break I'm sure Macca Quote Link to comment Share on other sites More sharing options...
Sandi K Posted June 6, 2012 Author Share Posted June 6, 2012 I wonder how Macca is doing in Crete. Ahhh that would be nice. My rehab therapist came to my house today. She is very good at telling me about other clients with brain injuries who are going through similar frustrations. She said it can take years and years for some of us to accept what's happened but we can still learn the coping strategies to help make our lives easier in the meantime. She also explained that I will work again but right now I need to focus on recovery. We spoke for an hour or so and then did some brain games. I find these conversations helpful and appreciate that she gives me examples of others and how they are coping. The more I hear the more encouraged I feel. Any brain games (even connect the dots) becomes much more difficult when a radio is on in the background. My brain just does not want to filter the noise. Interesting, we played one game that brought on a bunch of my weirdo symptoms. I was surprised at the impact of this game. It's so simple. We played with no radio or other distraction it was just quiet. She would say a letter of the alphabet and I would have to say the letter that follows 2 down the line. So if she said A I would say C. If she said T then I would say V. We did this for almost 15 minutes. By the end my head hurt, my legs hurt (I was dragging my feet to walk her to the door), my vision was blurry, and I began to lose my voice. Holy cow!! It's not so much the game itself, it's the level of concentration required. It really showed me that I have a long way to go. Sandi K. Quote Link to comment Share on other sites More sharing options...
amexdm Posted June 6, 2012 Share Posted June 6, 2012 Hello, Sandi- Your rehab specialist sounds great Sandy. That seems beneficial. It is always helpful to hear how others have struggle and perhaps recovered that gives us hope. How come you never reply to my replies to your PM"S? Macca- Hope you are well. Holiday right? I was reading an old post and saw you have 3-4 years to retirement? That is great. I have 15-20 depending on how much pension I want. Hi to everyone else. My work is killing me but going to see a new neuro on Friday. Say my GP yesterday and he said I am not endangering my health by continuing to work. He suggested reducing but not possible right now. Feet feel like someone hit them with a SLEDGEHAMMER. Take care everyone, David Quote Link to comment Share on other sites More sharing options...
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