DawnS Posted June 26, 2014 Share Posted June 26, 2014 In the very early days, getting stuck so badly that I was literally physically unable to move was a regular thing, daily at least. This faded over time (I'm 2 months short of the 3 year mark) but is back with a vengeance this week. I am currently off sick with fatigue - this is my 9th week and I'm due to return next weds. Today, I have been barely able to move. I can't think. There are things that I need to get done but I have no idea where to start. After a while, I realised I needed to apply the methods used in the early days...break it all down into tiny chunks. After emptying the dishwasher, I decided the ironing should get done. I told myself that getting the ironing board set up is all I have to do for now. I went to the cupboard but the ironing board wasn't there. I found it in the living room, set up and the iron already on. I have no recollection of doing this! A thread was loose on a t-shirt, I went to the kitchen for scissors. There was an apple on the side that I'd left for the birds, I cut it up and put it outside. Then realised I hadn't watered the greenhouse this morning. after watering it I came back in to find the ironing board sitting with a t-shirt that still needed a thread cutting off. I am driving myself insane I can only imagine that I am thinking about my imminent return work so much that anything else is essentially multi-tasking and I can't do it. My partner wants me to take more time off. It's true that if I go back next week it would only be a reaction to the fact that they were not happy with the length of my last sick note. One moment I am concerned that I will lose my job, the next moment, I couldn't care less. My GP thinks I need to change my role but that I am perfectly capable of working. I don't know what to do - go back next week or ask for more time off. HR were supposed to write to me 5 weeks ago but I've heard nothing. I don't know what to do and I hope it's ok but I decided I'd like to hear from people who understand, so here I am x Quote Link to comment Share on other sites More sharing options...
Louise Posted June 26, 2014 Share Posted June 26, 2014 Aw Dawn honey sounds like you still need time off but that's just me talking, the doing stuff like that this morning your mind is obviously in a turmoil I do understand your confusion I can't work - working after my SAH was just not an option for me, if I worked even part time I'm considered a danger to myself with the tiredness/doing silly stuff - hope that explanation makes sense.. Your neuro not the gp is the one that should say whether you can or are capable of working though think your heart is telling you honey when you say you couldn't care less... Its a hard one, and one I knew very well myself so I know how torn you are feeling.. take care warm cuddly hugs... Quote Link to comment Share on other sites More sharing options...
Wem Posted June 26, 2014 Share Posted June 26, 2014 Hi Dawn, It is a long time since I last posted on this site, but your plea for support really touched my heart. As you are probably aware I have suffered badly with fatigue from Day 1 and still do. I am now almost 2.5 yrs post SAH but my energy levels have not really improved much for some considerable time. I have yet to meet a medical practitioner (either General or Neuro) who is willing to take the long term effects of my SAH more seriously than 'there is no clinical reason why you are not able to perform perfectly well' I agree with Louise you are probably becoming anxious about the return to work and that in turn is likely to be draining your brain power. Mood swings affect my energy far more since my SAH than they previously did and that could be happening to you right now. In my humble opinion you need to find some peace in your heart and that will help to unlock your energy levels. It is a tough decision, but if you are not feeling fit for work then I think you already know the answer.........you shouldn't be going back until you are well enough. I have come to the conclusion over the last few years that most of us strive really hard to get back to a 'normal' that doesn't really exist for us anymore and work is just one aspect of that. I am continuing to work (24 hours per week) and I am continuing to find it very difficult but I am lucky, I work 90% of my time from home. If I was going into an office every day I do not believe I could cope. I am pretty much convinced I could not do any other kind of work, as my brain stamina and physical stamina are so badly depleted since my SAH, some days it renders me almost incapable of lifting a teaspoon! No real pearls of wisdom for you I'm afraid, but bucket loads of empathy! Hope things start to improve soon, Wem Quote Link to comment Share on other sites More sharing options...
DawnS Posted June 26, 2014 Author Share Posted June 26, 2014 Thank you so much for your replies, it helps no end to know that I'm 'talking' to people who have been through this. This afternoon, I've felt extremely dizzy though it's not something I usually suffer with. I've had a nap which has helped a little but then my manager phoned me to see how I'm getting on and to say that she is really looking forward to my return to work. That's nice I suppose, but now I feel more pressured to go back asap. I have not seen a Neuro since I left hospital, there is no-one other than a GP to talk to. At the beginning of this sick period, I had an overnight stay in hospital and they were supposed to send me a Neuro outpatient appointment. As I have heard nothing I meant to chase this with the GP but the last time I had an appointment, I completely forgot. Perhaps if I get some more time off, it will push work to send me to Occupational Health. But then again, the last time I went to OH, they had no-one who specialises in Neuro. I feel that it's a bit like seeing a hairdresser to fix your toothache! I think deep down I know what I need to do, but if I stop work I'll have to give up my car and my bird ringing. I love my car and I love my hobby even more. Surely life can't just be about working, can it? I'm not sure what other job I could do, but I guess I'll have to find out. Maybe simply reducing my hours again in my current role will be enough. I don't usually feel frustrated about the changes since sah - it's happened, what can you do - but I am feeling somewhat disgruntled recently. My apologies, I must sound like a moaning Minnie but let me thank you always for your support x Quote Link to comment Share on other sites More sharing options...
jess Posted June 27, 2014 Share Posted June 27, 2014 Dawn I really hope things improve for you soon if you are not ready to go back to work then don't and don't feel you have to and certainly don't be bullied into it xxx Quote Link to comment Share on other sites More sharing options...
iola Posted June 27, 2014 Share Posted June 27, 2014 Hi Dawn, I'm only 14 months out but I can tell you work puts a hurting on my head. This week was terrible. I do suffer from dizziness and when I am tired it gets worse and so does the headache and then get scared. I had an anxiety attack taking my daughter to camp this week, while driving. Not good. I think I just do too much. You can only do so much and I have so learned the hard way the brain just shuts down and hurts. I told my boss today I was thinking about quitting. He did not like hearing that but the stress of the job weighs on me. I know what you mean though about not knowing what to do if you did quit. I am trying to figure that out myself. I'm a doer so I'd have to keep busy. Take care of you. Iola Quote Link to comment Share on other sites More sharing options...
Daffodil Posted June 27, 2014 Share Posted June 27, 2014 Dawn, I think you know I am back seeing a counsellor finally after I had a similar episode at the end of last year to what you are experiencing now. Hospital trip, signed off, hours down to zero, 2.5 years on and I'm now back up at 12 hours but that's my limit right now with the kiddy care, I like Wem Work at home but office trips exhaust me. I had some counselling after the SAH via work over the phone which was useful but this is my first time seeing one face to face. One thing we talked about is that the symptoms of anxiety are so similar to the neurological symptoms we experience post SAH and almost identical to the hydrocephalus effects for me and that this means we pay more attention to it, our brain makes us, it's like it's saying' see I told you there is something wrong' and then the vicious pattern continues. But when that happens I am learning to pay attention to check nothing is wrong and then switch thoughts to something else and have reassuring words I tell myself. I just think you need to find something that gives your brain quiet time, you have a lot of noise at work. Swimming, walking, sitting, meditating, find something that allows you to just be here and now and not get into that spin. Work are being good I think with you yes? Keep talking to them, if you make the decision to finish you will find something else you can do I am sure that will be more local and maybe bring a new interest. Did you check out the RSPB for jobs, I know they are recruiting heavily at the moment, maybe time for a change doing less hours connected to something you love.... Dawn we all empathise and understand but if you are worrying about it there's the clue, something probably needs to change. Also I think you should push to get checked over and linked back with a bit more support, I credit my team , GP and headway for really helping me understand how my brain now reacts, is different and is affected by emotion and I think it's a shame you have been left with no neurological support. 1 Quote Link to comment Share on other sites More sharing options...
Louise Posted June 27, 2014 Share Posted June 27, 2014 I'd chase up the neuro appointment, good description with the hairdressers yes, occupational health probably don't have anyone that specializes in that area but if they did 'wouldn't that be nice' No life is not about working honey (I know it helps I know you need to earn) but your state of health isn't that more important.as I've said before pop into a CAB office find out what your intitled to if the health professionals say you are medically unfit for work then that would be good.. So agree with Jess.. When I read your post yesterday I thought years back I could have written it... hang in there honey.... Quote Link to comment Share on other sites More sharing options...
Winb143 Posted June 28, 2014 Share Posted June 28, 2014 Hi Dawn, Try not to worry about work until Wednesday am. Easier said than done as I do not work anymore. Make the most of your weekend and Monday and Tuesday. Soon it will be another weekend and remember stress is bad for us but laughter helps. Cheer up Dawn and sing to yourself, it does help xx Hope your dizziness goes Love WinB143 xx Quote Link to comment Share on other sites More sharing options...
DawnS Posted June 29, 2014 Author Share Posted June 29, 2014 I'm going to see if I can get an appointment with the GP tomorrow. I'll tell her that if I go back to work now, it will be a reaction rather than a decision and see what she says. If she was to sign me off for two more weeks but with notes attached for a phased return immediately after, maybe this would pacify work, my partner and myself all at the same time. I feel like I'm being very boring with this subject, going round and round. A friend suggested I speak to the job centre and find out if there is some kind of support that I could be tapping into and have missed. I'd like to stick my head in the sand and hope it all goes away somehow! Daff, is it better speaking to a councillor face to face? I too had some phone counselling soon after sah and it did help. I wonder if maybe I need to go and talk to some one properly. 1 Quote Link to comment Share on other sites More sharing options...
DawnS Posted June 30, 2014 Author Share Posted June 30, 2014 I've been to the GP this morning and she has signed me off for two more weeks but with notes attached for a phased return after that. She feels that I should still go in 5 days a week but for only half the hours and after one week of this, I've to see her again to assess how it's going. I'm dizzy again this morning, Andy drove me to the GP as I feel like I'm extremely drunk. I asked her if it was worth speaking to the job centre about support but she very gently suggested that I'm being rather optimistic Quote Link to comment Share on other sites More sharing options...
Super Mario Posted June 30, 2014 Share Posted June 30, 2014 Dawn there is a disability adviser at the job centre. It may be helpful to see them as they can help put things in place that will assist you. There is no harm in trying and speaking to them. Quote Link to comment Share on other sites More sharing options...
Daffodil Posted June 30, 2014 Share Posted June 30, 2014 Dawn ,sounds like a good plan, phase it back gently and build up again. Sandi had to do that too remember? I have found the face to face useful. Referred by my GP which took ages and I'm having some help for PTSD which I scored highly on apparently. it helps that it's someone detached from it all to talk things through. I have learnt I am carrying worry and upset about things I really didn't think I had so it's been surprising . One thing we have concentrated on is the fact that symptoms of anxiety and worry are so similar to the post SAH symptoms so it's easy to confuse one with the other. Simply put for me now if my dizziness or spinning continues to gets worse when I take myself out of the situation and sit quietly for a short time then it's probably brain injury and I know I need further rest or seek investigation if it got really bad to make sure shunt etc ok but if it subsides then it's probably anxiety and I should give myself a break. After all we have been through it's ok to not always cope with it all I was going round in circles with that and getting all mixed up. Hope you find a balance Dawn Quote Link to comment Share on other sites More sharing options...
Louise Posted July 1, 2014 Share Posted July 1, 2014 Dawn think I said that if I didn't then I did mean too. Penny's right there is a disability advisor, and there is no harm at all in speaking with them make an appointment... I really don't see how phone counselling would help, I think you find out more looking at someone... you can judge them and more so, they can judge you. Hope your feeling easier this morning... Quote Link to comment Share on other sites More sharing options...
DawnS Posted July 3, 2014 Author Share Posted July 3, 2014 I have a meeting with Occupational Health tomorrow and then a meeting with HR and the call centre manager a week later to discuss the report and whether a return to work of any kind is the way forward. Either way, this should all come to a close soon. It will be really nice to think about something else! 2 Quote Link to comment Share on other sites More sharing options...
Super Mario Posted July 3, 2014 Share Posted July 3, 2014 Hope all goes well for you Dawn and that you can get a satisfactory conclusion. Quote Link to comment Share on other sites More sharing options...
Jules Posted July 3, 2014 Share Posted July 3, 2014 I feel for you Dawn I am on my third attempt at returning to work myself and am at the 2.5 year mark. I recognise the symtoms that you describe and can only say as others have you cannot push yourself our bodies can no longer cope with that. I started attending Brain Injury Matters ( used to be called Headway) weekly seeing a neuro phychologist and a counsellor last October when I had to go off the last time and I can honestly say I could not have returned in May without them. I am still at a day at a time and wish you all the luck in the world . Please be kind to yourself and seek some support x Quote Link to comment Share on other sites More sharing options...
Louise Posted July 4, 2014 Share Posted July 4, 2014 Sounds like a plan honey.... Hi Jules, good for you Oh and didn't know headway have changed their name, headway is a great place for help. But there are some of us that adding work into the daily schedule just doesn't work - excuse the pun, when you add the work stuff the home stuff together for me that made for a big problem... 1 Quote Link to comment Share on other sites More sharing options...
DawnS Posted July 4, 2014 Author Share Posted July 4, 2014 I think the meeting with OH went ok today. I became concerned when I realised that the chap I was seeing was the same person who had written a report in 2012 stating that I was not capable of work. He assures me that this is not the case this time. He is going to make suggestions regarding extra training, lower targets and lower hours to begin with. He feels that there is no reason that I could not eventually return to my contracted hours of 31.5 per week, but I personally feel that this is set a little high. In my head, I am thinking that 4 days of 6 hours plus a 30 min break would be better. This way I could work mon/tues, have weds off to recuperate and then work thurs/fri. I have a meeting booked with the call centre manager and HR on the 14th to discuss the OH report which we should have received by then. I was extremely stressed and uptight this morning which is odd as since sah, I don't tend to suffer with anxiety. I had a good nap afterwards...that's something I'll miss when I go back to work! 1 Quote Link to comment Share on other sites More sharing options...
Super Mario Posted July 4, 2014 Share Posted July 4, 2014 Seems quite positive then Dawn. Quote Link to comment Share on other sites More sharing options...
Tina Posted July 5, 2014 Share Posted July 5, 2014 Dawn I really hope the report will help you to get the hours you feel that you can cope with. Good luck for the 14th and take care xxx Quote Link to comment Share on other sites More sharing options...
Louise Posted July 5, 2014 Share Posted July 5, 2014 Dawn, hope all turns out well for you.. I find it really funny not just with you but others that write, when HR says that they see no reason why working x-amount of hours cant happen in the future, & they have neuro experience! I have seen a lot of people writing this and its been a thought for a long while.. Relax now for a bit honey, de-stress and chil... cyber hugs.. Quote Link to comment Share on other sites More sharing options...
Daffodil Posted July 6, 2014 Share Posted July 6, 2014 Dawn , it's sounds good. They need to take it in stages with you. What's the first target you are aiming to meet, not point headed straight for the full hours, so head for first target, review, consolidate , then move from there. If then you have any wobbles you move one step back rather than fall all the way, does that make sense? Louise I know what you mean, it's strange isn't it, I decide to take the view that they are looking at glass half full and trying to always hope for the best outcome. Thing is we need to be clear what our preferred outcome is too otherwise we are working towards different goals. So Dawn, be clear I think when you say you have learnt that the four day option is where you want to head.... 1 Quote Link to comment Share on other sites More sharing options...
Jules Posted July 6, 2014 Share Posted July 6, 2014 Sorry I should clarify in Belfast they have moved away from Headway and are Brain Injury Matters. Dawn the difficult thing is as you know everyone wishes the best for us including occupational health but it is only you that knows what you can and cannot do. I personally am trying to work 8 to 2 Mon - Thurs ... Early days Please try to not over commit my first week I did two 4 hr days for example in that way you are putting yourself under pressure from day one and are also not seen as flagging sick days .Good luck Quote Link to comment Share on other sites More sharing options...
kpaggett Posted July 7, 2014 Share Posted July 7, 2014 Dawn, I haven't even attempted to go back to work yet, because I don't feel like I'm consistent enough. I have wonderful times where it is almost impossible for me to know that I've had SAH, but then the other times come crashing in when I least expect them. It seems really conceivable that if I were working, I'd have to 'check out' every so often for a recovery/brain health time. I don't think you should feel bad about it at all and if you can get a note from a GP, then do it...however it can get done the easiest. I don't think you are out of line at all. One other thing that I notice about myself too is that I tend to have more issues with anticipation of an event than when the actual event happens. For example, I cried for days and was really fatigued 3 days BEFORE my son came to visit. During the visit, I was really good. However, I really feel like I'm not going to be able to handle whatever the issue is on the days leading up to it. For example, I forget things, my memory is bad, I am so distracted by everything, and my sleep habits are horrid. I don't know if you experience any of this type of preparatory spiral, but if you do, that might be adding to going back after a time off as well. Take care and by-the-way...no ironing NEEDS to be done, so maybe your brain was just trying to snap you out of some nonsense you thought you 'should' do ~Kris Quote Link to comment Share on other sites More sharing options...
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