goldfish.girl

Hi Karen, Sorry to hear how frustrating all of this is for you both. You really must feel like you are in a nightmare whilst wide awake. The DLA form is a biggie!! Citizens advice can help you fill it in. I used a service called Welfare Benefit Support which is run through the local council up here - they sent a lady to my house to do the forms. Also, can you ask if Jim will be allocated a stroke nurse or similar when he gets home, they can help with forms too. You could also ask either at the hospital or your GP for a supporting letter detailing Jims condition to send with the forms. He will also get discharge forms when he is released - they don't say much, just what treatment he has had and what his original diagnosis was. These help a little bit as supporting evidence to send with your forms too. I hope the carers situation is sorted very soon. It must be incredibly draining for you to keep going to and from the hospital every day & I'm sure Jim will feel so much happier back in his own home. Michelle xx

Hi David, As someone who has had the headaches for over 4 years now, I know there is nothing 'trivial' about them. They can be debilitating & control what you can and can't do each day. Like yours, mine build up as the day goes on & it can be incredibly hard to achieve all you need to that day (and I am not currently trying to work full time as I have them). The worst ones are the ones which are there when I wake up - I know then that the day will be a wipe-out. These are the days when even the pain killers don't help. I can't answer your theory about the hospital treatment. I did get regular, strong pain medication in hospital but I still have headaches so I'm not sure that it would be related to a lack of meds while you were in hospital? I have been told that for some people the headaches and fatigue don't go away, for most people they do. It looks like we are in the unlucky group But I do keep hope that in the same way as the reason for this can't be explained, they may just stop one day also without any reason being explained. Michelle xx

Hi Andy, I was 'lucky' in that I was transferred to a hospital 200 miles from home so only my immediate family came to visit me. My memories of them being there are mostly vague, there is a lot they tell me that I do not remember at all. When I came home the visitors were overwhelming and exhausting but I remember someone (no idea who!!) saying that it made them all feel better to see me for themselves as they had all had such a scare over what happened & wanted to know that I was still me & doing ok. SAH is so scary & I understand why it was important for them to see me - but it really was hard going. Even having florists turn up with flowers would disturb the sleep I so desperately needed at that point. It is so important to see friends in the early days to help your morale but it has to be limited to allow the patient to get better. The visits & offers of help will be so important when your wife comes home, especially if you return to work and she is alone during the day. Perhaps for now you could tell people they can only visit during the day (as you, your wife & the staff feel she is up to it) & have evening visiting just for yourself and your wife to spend time together? It is hard to say things that you feel may seem rude to others but the exhaustion really is a massive issue especially in the early days and recovery time is the most important thing. Also, while alcohol, smoking & high blood pressure are the 3 'recognised' triggers to SAH, it's worth remembering that a lot of people who go through this are not in any of those risk groups. This might be important for your wife to know as she recovers and goes through the stages of 'why me'. Her life style may need to change but it is not always accurate to blame yourself for what has happened to you. Wishing you both all the best, Michelle x

Brilliant news Karen Michelle xx

Kris, I like your neuro psychologists way of viewing this I do think this in an improvement at last and I hope it will lead to longer periods of 'normal'. As an update, after the 10 days of no naps, there were 3 days of severe head pains (not helped by the usual pain killers) and another 2 of no energy to even get washed & dressed. I am now on day 3 of a new period of no afternoon naps. I do get very tired by 3pm with head pains starting at lunchtime & muddled speech & balance problems BUT the difference I am finding is that rather than have no choice but to stop, lie down & sleep for 2 -3 hours, I can choose to keep going (with all the fatigue issues both mental & physical). The downside is that I am too exhausted to be a good mum when my son comes in from school - I am bad tempered, snappy & just horrible to be around by then. I am also, on day 3, struggling with muscle fatigue after doing so much in the house & garden. Interestingly, the increase in physical activity & reduction of day time naps has not added to the night time sleep (I was back up from midnight till 2am last night). I am still very hopeful that this change is a major improvement 4 years post SAH but I still need to adjust to working with it to make life go back to the even keel I had achieved recently. I did speak to my neuropsychologist today about this change & while she is very pleased & encouraging me to keep going forward after hearing my news, has asked me to consider if a rest/sleep in the afternoon would be advisable to avoid the afternoon mental & physical slump and avoid a further several day long crash. Definite food for thought, I need to learn how to just be but maybe try to stop doing, doing, doing because I am still awake??? I did tell her that I feel that just when I finally learn how to work with it, my brain goes 'bang' and starts a new set of rules Dear Brain, I accept your challenge and look forward to raising your stakes?????? Michelle x

Stephanie, I'm sorry to read how much this has hurt you. It would have devastated me too. I think we all WANT to be doing everything we did before and it takes a long time to adjust to what we are now able to do in a day. I think you said before that your son is a a teenager - that will be a big part of what he said!! Also, I think along the same lines as Sandi, family want you to be better, they are scared & frustrated when you are not and this sometimes leads to an angry outburst. I bet he will feel bad for what he said after he's had time to think (although he may never come to you & admit that he feels guilty). My sons dad said something not that long ago that hurt me to the core - I was trying to work out how to do something on the computer but just not getting it. He had already shown me & when I asked again he asked how I could ever have had a job that was computer based (I had been medically retired due to SAH by this time). The unfairness of his comment left me in tears but I understand that it must be frustrating to deal with me when I am so 'thick' now It is their ignorance of how a brain injury affects people, not your lack of effort that causes these situations. You are doing the best you can Stephanie. It is also easier, over time, for close people to see for themselves that things are not the same for you despite your efforts. Michelle xx

As always, lovely to read your updates Karen! Brilliant news about the insurance company Now you can concentrate on helping Jim to get better. Fantastic Michelle x

Mary, thank you for your lovely, understanding words. I think I can honestly say that having gone through the unbelievable stress & months of waiting for decisions has been incredibly hard on a brain that is trying so hard to recover. I've done the application forms & medicals for all the appropriate benefits. Doing my sons one was the last major hurdle (the wait for the outcome will take several more weeks) but I do feel that it is all over now, I've done all that I can & that may well be why I am feeling better? The added stress of sick children/relatives & holding down a job is not possible while you are trying to recover and fight the welfare benefits system (in my opinion - I know others opinions will differ here). I think it is horrible that in the US you have no choice but to keep working so your health insurance is valid. I may be barking up the wrong tree here but I think it will be interesting to see how all the stress being over affects my recovery. Obviously, if my sons' disability benefit does not continue, we will be in a very difficult situation financially and I already know that trying to look after him, attend all his appointments & work full time to be able to live & eat is not possible. It has been a big adjustment to go from earning reasonable money to being a full time unpaid carer but I am happy to not have the material things that I'd like for the time being. We have a roof over our heads & food to eat - it's a different life style but all the basics for living are in place. I honestly think that taking the stress of our situation away and giving my brain peace to recover has helped.......We shall see..... I'm looking forward to finding out

Sally, as we were all saying.....look at how much you have helped people already! I am honoured to be in Lin-lins league, thank you. (Sorry Lin-Lin that's more of a compliment to me than it is to you I think ) The DLA form lady on Thursday told me I was 'so articulate, it would be a shame to let that go to waste'. I must come across much better than I think I do - once again YOU have helped me by highlighting that too . Just don't expect me to speak as well as I write especially when I am tired or my head hurts!! Keep doing what you are doing, you are helping people even if you don't recognise that. Michelle xx

Sandi & Mary it is great to read how much these drugs are helping you both to live a more 'normal' life again. It must be such a good feeling Michelle xx

Sarah - thank you! I remember reading your similar post a while back & thinking 'Really?? That can't be really true' It is so good to hear that it was and that it continued! I am hoping that the same is happening here, it makes no sense but you are living proof that it CAN happen, thank you xxx

Hi everyone, I really can't think what to name this thread (moderators please feel free to give it a better title ) This time last week I was silently thinking that I had kept going all day every day without the afternoon nap that has been a daily feature for over 4 years. I was reluctant to post this because it stopped out of nowhere & no-one could have been more surprised than me! I was exploring thoughts about 'can this awful fatigue just stop, just like that, overnight, in the same way as it started'? In the same way as no-one has been able to explain why it didn't get better over time, was it possible that it just could one day? I have to say I was DELIGHTED but couldn't tell anyone because I couldn't quite believe it had happened I was thinking that maybe now that all the stress of applying for various benefits, attending medicals etc was over, my brain had been given the peace & space to recover. I was even thinking, OMG, what do I do, I am well again.......I can go back to work at last! The aim has been for several months to apply for a voluntary post & just when I thought I could do it a morning or 2 each week as I know that I need to sleep in the afternoon, the goal posts have changed i.e I can do it non stop for 2 weeks then I can't do it at all for a week. I really thought I knew my fatigue limit & had learned how to work with it. Now it seems like it will tell me when I can & without prior warning so that I can plan my time. I only told one close relative who advised me to give it a bit more time. Then I crashed in a MASSIVE way. I had had a persistent headache for several days, different in that there was no let up at all at any time of the day or with the pain medication that usually helps. On Tuesday night it got really bad and then I started to vomit. I can honestly say I have never been so scared as that is how my SAH presented. I cried like a 5 year old. I had phoned my GP earlier to ask for alternative pain relief as what I had just wasn't working (this was before I started to vomit). Today (3 days later) is the first day I have felt well enough to leave my house. My head still hurts but not as much & I am still getting waves of nausea but not actually being sick. I feel like I have had a taste of how life used to be - being productive all day, every day & the hope that this awful post SAH time was finally over, then a reminder that it might never be. But I am hopeful now that maybe the good spells might last longer if they keep coming? Is this something other 'old timers' SAH wise have experienced - thinking you are suddenly better, then finding out you are not? It is an improvement (???) to get to a point where I can keep going all day so maybe the start of more good things to come? Thanks, Michelle x

Hi Sally Keep in mind that you have helped many people through BTG already! You are also trying to work full time and look after your family too. Never feel like you haven't helped people so far. If you can add to that, that's brilliant Michelle xx

Have to agree with Penny, the council run Welfare Rights have been an amazing source of help to me. They understand the reason behind some of the questions that we may miss. As an example I had a lady here this week from welfare rights to do my sons DLA form (the same lady who helped with my own DLA form & ESA application). One of the questions sounded to me like: have any adaptations been made for him at school - I said 'no' as I was thinking of things like hand rails, wheelchair ramps etc which he does not need. She pointed out that his need for a laptop to make his written work legible to others WAS an adaptation. As is extra support to find his way around etc, etc. I realise this may seem obvious to others, but to me, with the way my brain now works, it wasn't. These people are trained to see past what we think we are being asked & well worth getting assistance from after an SAH. Michelle x

Karen, reading about Jims phone call brought a lump to my throat - fantastic news Michelle xx

Karen I am also so pleased to hear that someone can deal with the complaint for you. It's just too hard to try & do everything yourself while Jimmy is your main concern. Good luck and hopefully the rise in his standard of care will be very, very quick. Michelle xx

Karen, that is absolutely shameful. I remember reading a similar story on here not so long ago but I'm sorry I can't remember who posted it or on which thread. As a starting point I would suggest asking the nurse in charge who you can make a complaint to outwith their particular ward when you go in next (i.e higher than the ward sister, she is accountable to someone). You don't have to explain to anyone on the ward what your complaint is and it'd probably be better not to and leave them worrying anyway! Perhaps that will remind each one of them of what their so called caring role is out of fear that it might be THEM you are going to complain about. As you say, Jim can not be the first brain injury patient they have come across and there is no excuse for him to be left in that condition. If a particular member of staff gets co-operation from him, then she needs to attend & identify others who Jim can also relate well to for when she is too busy or not on shift. My own personal experience is that you get nowhere trying to be polite & reasonable with the people involved & believe that the only way forward as a carer is to go as far above their heads as you can. Good luck Karen and try to enjoy your new kitchen if you can. I'm sure Jim will be very pleased to know he has one less job to do when he's feeling better Michelle xx

Fantastic to hear Karen. I hope there are many more days like this for you both! Michelle xx

Hi Karen, You are in no way nagging on and on here. You have been flung into an awful situation and you are the person who knows Jimmy best. Staff change overs & the pressure on those staff while on duty do not allow them the time to get to know him well. I only ask as the familiar face of the physio has not provoked any aggressive behaviour. Good luck with 5 hours per day for the next 2 weeks but with carers coming 4 times per day when he is back at home, is that a realistic time related test of how you can cope? Obviously overnight isn't included in these 5 hours, is he sleeping throughout the night? If Jimmy understands the concept of the diary and can add a new word and laugh with you about it, do you think he will understand how he will need to behave with you in those 5 hours for the next 2 weeks to be allowed to go home and realise that he will need to continue that behaviour once he gets home in order to be able to stay at home? I have been looking on-line at Advocacy Services this evening for another issue but did come across some in my area for adults who are unable or have difficulty in speaking up for themselves for whatever reason when facing 'officials'. Can you look these services up in your area to see if that would be helpful to you both? You are facing a massive undertaking in a role as carer but I'm sure you will know what your capability is and would like the chance to be able to prove this, knowing that there is someone you can ask for help & support if you should need it. Michelle x

Kris, I was automatically signed off work for 3 months & horrified to be told that I didn't stay off for that time though & it's interesting to hear that the 3 month timescale dates back to the 1950's. It is surely time for the medical advice to be updated. Having said that, after my 2nd brain op to coil a further anni, I was signed off for a week & had to ask for longer at the end of that week - I got one more week and felt that ready or not, the doctor says that's all I need I do agree though that the cognitive testing should be put off for a year or more. My testing was at 21 months and the results totally unexpected (to me anyway!!). It was explained to me after that the healthy brain cells surrounding the ones that got damaged in the bleed go into hibernation in order to protect themselves from damage and slowly awake over time when they think it's safe to do so and take over work that was previously done by the damaged cells, hence the advice to wait for cognitive testing. It is really good to have a psychologist/therapist on board here to help out with historical thoughts on brain recovery issues and have an awareness from personal and professional experience to question those somewhat outdated views. Thank you for sharing what you have learned. Michelle x

Mary, your clarity of thought is shining through in that post! And at the risk of sounding rude (I honestly do not mean to) even your writing in that post is so different to how you usually type regarding missed words & spelling. Something is definitely working with your Ritalin!! Brilliant news Michelle xx P.S I should mention that I notice everyones typos except my own even though I always read my posts before I post them. If I happen to re-read it after it's on a thread THEN I notice all my own mistakes

Hi Karen, I'm so sorry to hear what you & Jimmy are going through but it is so heart warming to read about the kindness of your neighbours. I think the diary is a brilliant idea. As Jimmy is improving it will help him to look back and see how far he has come. Sometimes we don't notice the smaller improvements in ourselves unless someone points it out - like when I get frustrated at not managing to have a full day (most days I have to sleep in the afternoon) & someone will point out that a year ago I would sleep much longer or need to much earlier in the day. It's things like this that we sometimes need to be reminded of to realise we are improving, especially in the early stages of recovering. If you think the diary might upset Jimmy, you could just do it for yourself discreetly & when you think the time is right, share it with him then? Good luck. I hope he is back home very soon & that all the support promised will make things as easy as possible for you both. Michelle x

Karen, thank you for explaining it to me. I imagine that the doctors are on a non stop learning curve when it comes to dealing with all the SAH cases as each one is so unique - I wouldn't want a job with the kind of pressure they face each time either!! It's encouraging to know the rupture risk is small & hopefully there will never be any changes to the neck in the future but I can imagine having that news at all would take quite some time to deal with. Well done for how you have put that knowledge into perspective and kept your sanity Michelle xx

Hi Pete & Karen, Can I ask a questions about 'necks' left on annis here please? I am very lucky that all of mine were fully occluded (I think that's the right word) so I really don't know much about necks being left. Can they not be re-coiled in the same way as an unruptured anni would be when possible? I would find this news very worrying too Pete, so have sympathy with everyone who is in this position. I would love to think I would deal with it as positively as you have Karen but I'm not sure I would be as brave as you if I was faced with this. Your positive attitude to it is inspiring. I hope you can ask the doctors some questions Pete & find some reassurance in the answers you get. Michelle x

Oh my goodness Dawn, that is a really difficult situation. Firstly the other lady is the one sounding like an obstructive moron, not you. It really isn't her place to decide on your fitness to be back at work. I think I would also feel worried by her comment that she was hoping to get your job - was she perhaps joking but it didn't come across well? I'm not defending her, just considering the options (not everyone is as nice as us!!). I would want to let HR or Occ Health know what has been said but understand this is not an easy solution given your managers lack of management discretion. Hopefully some of the other members with better ideas will pop on. I'm stumped as to what to suggest but really feel for you being put through this. Michelle xx