goldfish.girl

Mary, that is such a good question. I also remember that you had problems with light before Ritalin. Today, one of the Dr's spoke about my son learning to manage his symptoms, including headache. A while ago I would've asked 'what are you talking about, what do you mean, how would he do that. Just DO SOMETHING to make him better NOW'? because I still hadn't learnt it myself. Today, I agreed with her, we need to find a way to do this. I also pointed out (I am every brain Dr's worst nightmare now I think ) that it takes a very long time to do this, it took me almost 4 years and for a child this gradual reasoning isn't going to happen i.e if something looks like fun, they are going to do it. I think I have it worked out now, 4 years post SAH I know what I can and can't do without being floored for days. I can choose to do it regardless & am aware that I will be tired, sore & dizzy for a couple of days afterwards OR I can choose to not do it and maintain the good balance but miss out on things. It takes a very long time to know this (perhaps others will have the sense to learn much quicker than I did???). The down side of learning how to manage your symptoms is that others exclaim that you are better now & doing so well........sigh, if only they knew...... It takes time Mary,but you will get there in your own time. Michelle xx

Steph, I love your post I am too independent for my own good and refuse to ask for help. This is not a healthy trait. I think it was mary who said earlier that she expects others to know how she feels without her actually telling them? That would be me & I am guilty of feeling p'eed off with people who don't see it & offer to help anyway BUT I also know that, sometimes, they do see it, offer help once & if I don't take them up on it they think I'm fine as I am....... None of us want to be the 'victim' who needs a bit of help but equally wouldn't it be great if people could see through the front and just be there sometimes? I don't know if I would've thought of helpful suggestions before this happened. I'd like to think that now I would because I have a first hand understanding of how hard & isolating illness can be, not to mention being without a licence. I'd like to think I'd offer support & practical help to others if something similar happened to them without them having to ask. Michelle x

Hard to say Dawn. I used to be able to stand my ground, say my piece assertively and reasonably with a firm argument on my side & get the results I wanted. Now, I either cry & hide in my shell, feeling hurt and lost or lose it and have a sweary mouthed psychotic rant. Assertive? Nope, not any more or at least not in a productive way! Michelle x

Hi Vanessa, I absolutely get what you are saying. Initially there are so many people phoning & visiting that you feel desperate for some quiet time........then you get the quiet time..... Although I am still friends with old friends, I am no longer part of their world. They are still working, still going out etc. Doing things that I can't do now. Noisy days/nights out are just not me now. It's hard, it's sad & it's upsetting but it's just the way it is. Your good friends will still be there for you & you may make new ones who enjoy the same things as you post SAH. When my son got ill and had his brain op last year the same thing happened. His friends and what's left of mine () rallied round for the first few weeks, then they all disappear. It feels like if you don't get better and get back to normal, they get bored with it & move on??? Like you, I am single & live alone with my younger son so I do understand that it hits much harder than it might if you have a partner supporting you, which would cushion it a little bit. Try not to let it get you down. You will make other friends as time goes on & keep the ones who are worthy of the title. I always try to think of times like this as a 'bad time' that one day I will look back at and struggle to remember how horrible it felt because things will be so different & happier then. Michelle xx

Hi Debbie, Sorry to hear that you got that news. I'm pretty sure everyone would agree that facing a clipping operation is an incredibly scary thought. I had 2 ops but they were both coiling, not clipping. As Sarah said, the relief you feel when it is over is amazing. You feel like you can get on with your life again after it without the constant worry & fear. The only other thing I can say which I hope will help you is that a planned operation is easier to recover from than the emergency one during the bleed as you are not also recovering from the bleed itself the second time round. There is another lady on here who had a planned clipping op, without a bleed (Gill/Bagpuss). Hopefully she will see your comment and be able to offer advice & information from first hand experience. I'm really not sure what else to say as I am trying to think what would help me if I was in your situation and I really don't know what would. I do hope some of what I have said gives you a little bit of reassurance about having a planned operation. Good luck. Michelle x

Hi Daff, I am loving the tips on this thread! I'm going to try them ALL I have very dark circles too and even on days when I feel quite good, I look in the mirror and cannot believe how tired I look. I get sick of people saying how tired & pale I look when I think I'm having a good day!!! I hate seeing photos of myself for this reason & will avoid having my photo taken whenever I can. As Louise said - it's a positive sign that you have started to notice or even care - that is surely a step forward? Let me know which tips you try & which work best before I spend a fortune Michelle xx

Hi Jord It is terrifying in the early months whenever you get a pain or a twinge but you have to believe that the doctors know their stuff & if they say your coiling has been successful then the odds are extremely high that it has been. I had blasts of pain that scared the life out of me, I still get them but can now recognise the difference between 'ow that really, really hurts' and the initial pain of the SAH hitting me as being different, the SAH pain was out of this world and left me unable to think or breathe properly. What you are feeling now is really horrible & very scary but you will start to gain confidence in your recovery over time. Always ring NHS 24 or go to A & E if you are worried to get reassurance when needed. You have been through a massive event and it takes times to regain confidence that all is ok. When I had my SAH I was lying there looking at the phone but unable to move to get to it and phone for help. It has taken over 4 years to occasionally be fine with going into another room to have a sleep without my mobile phone to hand 'just in case'. It takes a very long time to feel safe again but the nurse you spoke to to is absolutely right, you have been coiled & there is very little chance of this happening to you again. There are so many different sensations & strange feelings during recovery that it takes time to realise which ones you have had before and nothing bad happened during/after it before you can put it down to being an annoying after effect of the SAH. This will get easier for you in time. Michelle xx

Thank you for your confidence in me Mary I like to think I do still write ok but when it comes to making small talk or joining in with free flowing conversation, the chance to stop and think, then reply is not there.....I often stare blankly as I try to process what has been said, especially with people & situations that are not familiar to me. I also hesitate & stutter in these conversations and feel that people will assume I'm stupid when this happens. I am terrified of ever having to go through a job interview for paid work any time soon, I know I would not come across well at this. Also, I just re-read my post. At the end where I said 'I think I have something to offer them' I also meant to say (and in my head I DID) that they can offer me so much, there is so much for me to learn about their world. I hope I am up to the challenge and I'm slightly embarrassed that I missed out the part of what I can learn from them, it wasn't intentional My thoughts run faster than my typing! Michelle x

Sorry Mary, I can't remember how long I took it for - no more than a few weeks, though. Perhaps the side effects would have settled id I'd persevered with it? Michelle xx

Hi Teechur I also used Amitryptilene for a while. I had no headaches at all but I didn't like the side effects of the drug. My memory of what I didn't like is not 100% clear now but I think I felt a bit detached, like I was walking around in a dream? I am not keen on taking any tablets at all but more so when they are not doing what they were prescribed for. If they are not working and making you put on weight (which is always demoralising) I would be tempted to discuss things again with your doctor as they may be an alternative that will work without the side effects? Hope you find something else that works, I know how debilitating the constant headaches/ head pains can be. Michelle x

Dawn, when I was going through my return to work & it had all gone a little bit wrong, I could think of nothing else, all day & most of the night. It is a huge adjustment & carries a huge amount of worry, financially, emotionally etc but I do think you did the right thing. Try not to let this make you ill. There may still be a silver lining it's just taking a while to find it. Now this will seem so trivial to those of you properly back at work but I'd like to share my first small attempt at voluntary work today after 2 years of not working (I was back at work for 2 years post SAH, followed by medical retirement & 2 years at home). I have been really looking forward to starting voluntary work for 2 hours on a Friday and today was to be my first day. My son got ill last night with his all too regular headache & vomiting and was still pale, dizzy & sore this morning. The plan was he would leave for school & I would have two hours to calmly get washed, dressed & drive to the next town.......easy peasy on paper!! Instead I was calling people to see if they could look after him for me, looking out medicine for him to take along with soup for his lunch. Stress does not even begin to describe it along with guilt that I should stay and look after him myself, he is my priority and I am given a Carers Allowance in recognition of my care for him It was a HORRIBLE way to start my new venture. I was welled up with tears on the way to work and almost turned back and came home........ Anyway, I did my 2 hours and thoroughly enjoyed them whilst feeling like a fish out of water as this is a completely different role to what I have ever done before & a lot of the day centre users are unable to communicate verbally. My social skills and ability to make small talk are an area that I struggle with post SAH, so add that to not being able to verbally communicate with others and it really was a challenge!! But I picked up on a few of their signals, they use 'makatron'?? I may have spelt that wrong (I'm still learning what's what) I learnt a couple of the signs, I think it's like sign language but just a word rather than a sentence? The drive through, the tour of the building, all the new names of staff & service users etc, etc and I was WIPED OUT!!!!! But I enjoyed the experience, surprised myself a couple of times, annoyed myself a couple of times but overall loved the chance to have this experience and I am looking forward to next week Although I remember how utterly exhausting trying to go back to my original job was, I honestly thought this would be easier but it has absolutely taught me that working significant part time hours is still way beyond what I can do. That is sad and frustrating to realise but even doing a couple of hours a week will make me feel like there is a light at the end of this very long tunnel. It also feels important to me, that as I am unwillingly having to live on Benefits, I might be able to give something very tiny back to others in exchange. I think I have something to offer this day centre and I am keeping everything crossed that this will work out well for both them and me. Michelle

Hi 'chickababes', I am so sorry to hear what you & your mum are going through, especially as you about to fly off on holiday and have fun. I think paramedics are trained to say things that later seem 'silly' in light of what has happened, but they need the patient & family members who are with them to stay calm, so saying what they very probably know is the seriousness of the diagnosis wont help anyone. I can't imagine going through this roller coaster ride but there are a few people on here who have been so seriously ill & slowly got a bit better over time so keep hope & faith that this will be the same for your mum, it can happen. Best wishes to you both Michelle x

Hi Jord, your post is not depressing, it's what most of us feel as we are recovering, particularly in the early weeks. You WILL get better than this, honestly. Give yourself time & rest as much as you can.

Hi John, nice to see you posting again But I am sorry that you are having problems at work. I have also been through that and it is a very difficult, upsetting process to go through. My Union were very helpful, although I had to get a representative from Edinburgh (200 miles away) as none of the local reps had the experience to deal with my case. The rep I had was very up to date on disability employment rights which is really helpful in these situations. It's definitely an avenue worth looking at. Also, can you ask for a referral back to OH to explain to them the difficulties you are having? My work was also admin and because my brain could no longer cope with that type of work I also became very ill with stress.Along with the worry & fear of no longer being able to earn my current wage. It's is a horrible position to be in & I would advise you to look for help now before things get any worse for you. Good luck John and let us know how you get on. Michelle x

And BAM!!! Right in the kisser Mary, that was a comment you made in the green room to start the days thread a few months ago that had everyone laughing, no matter how bad they felt that day - it is so good for us all to have the chance repay the support & humour that you bring to BTG over & over again. You have proved beyond doubt what a fighter you are & that you never give in and let the SAH/Fibro/tumour win. You are an inspiration to so many of us every day so if you need a day off from that, let us be 'you' until you are feeling good again Michelle xx

Hi Mary, I hope getting this out HAS made you feel better and you certainly have no reason to be ashamed of yourself for feeling this way. I think we all go through spells of this. I know I still do over 4 years later and sometimes I feel angry reading how well other people have recovered and think 'why didn't that happen for me'??? Then I feel bad for being so down on someone else's good fortune. It is no fun at all when you never feel 100%, ever. I get spells of feeling really sick & tired of the feeling too but it is how it is and as hard as I have tried, I can't change it. I always try to remember when I'm having a few down days that this is just a feeling & it WILL pass. The positivity WILL come back. Huge hug Mary, don't give up xxx

Hi Vanessa, Sorry to hear you are feeling rubbish both physically & mentally at the moment. I think we all have times when feeling unwell just completely gets us down. I know how you feel with dealing with boredom but not having the good health to do something about it a lot of the time - it's very frustrating. On a positive note though I always admire people on here who realise so early on that they are not well. I did the ignorance is bliss thing - 'I'm fine' & tried to keep going so it really is to your credit that you recognise that you are not better yet. I know it is the most annoying phrase ever to someone recovering from SAH but it really is still early days for you (sorry!) and you are likely to see so much more improvement over a bit more time. It might be worth discussing repaying the over payment with your employer if you are you are not quite ready for returning to work yet? Hope the headaches ease soon for you. Michelle x

Hi Jord, I have just replied to your private message & then caught up with this thread. I know it must be incredibly hard with your baby but with your older child (I think you said he/she is 13?) it would probably be very helpful for them to understand your concerns, headaches & frustration at the moment. Obviously in a way that will not scare them but a basic understanding of how you feel as you are recovering would probably help them to understand that you will need some help for a little while yet. Perhaps there is a 'Carers' support group you could contact locally? In my area they also have a Young Carers Support Group and this has been invaluable to my son. Although I refused to allow him to be referred to them for a very long time as I didn't think he was my 'carer'! They don't need to be a full time, do everything for you carer - they qualify just because they live with a family member who has been ill. Pride stopped me allowing them to be asked them for help but I am so glad now that I did as he has a great time with them at activities and, I'm sure, a welcome relief by having other people who support him if he feels a bit worried. I know it is probably still far too early for you to be thinking of all these things but from personal experience I would urge you to look for the help & support you & your children need at the moment as early as you can. I found it easier to let other people make the necessary calls rather than try to do it all by myself. Michelle xx

Dawn, well done!! That was a huge step & if you have a post with less responsibility for now, you have found a brilliant outcome. Maybe in time you will feel up to your original job again, but now just isn't that time. Really pleased to hear your news Michelle xx

FANTASTIC NEWS Congratulations Jim & Karen, let the healing begin xx

Hi Paul, you made a good point - I forgot that at my initial appointment with the neurologist I had a 20 minute EEG after speaking to her for approx 10 mins. You are right, it is painless but they put the electrodes on with a substance like vaseline - Bev, take a hat to wear home from the appointment - chip pan hair is never a good look My initial appointment with the neurologist & an EEG showed no sign of epilepsy but the doctor wasn't happy with that as it is only a 20 minute test. As with all other experiences on BTG, different doctors will settle for different opinions and results. Hopefully you will get a good one Bev & can move forward quickly from there. I also remembered today that a couple of others on here had a seizure with or shortly after the SAH & only had their driving licence revoked for 6 months, as you were told. I have no idea why these circumstances are treated differently but hopefully what you were told (i.e 6 months) will stand. Michelle xx

Hi Bev, I'm sorry to hear you have had a set back. It must've been really scary both for you & your family. Unfortunately, seizures are a recognised result of a brain injury or brain operation but I think there are others on here who had one seizure and never any more afterwards. Hopefully this will be the same in your case. I am a bit surprised though that you have been told not to drive for 6 months. I don't want to drag you down but from personal experience (luckily in my case, the 'suspected' post stroke/SAH epilepsy was eventually found to be unfounded) if you have a seizure the DVLA automatically remove your licence for 12 months. I know this is not what you want to hear but sometimes knowing things upfront is more helpful than being shocked at a later date. Although I had never had a full on seizure - I had fallen a few times, I believe this was due to my balance problems post SAH and seemed to 'switch off' occasionally for a short period of time I was automatically disqualified from driving for 12 months, pending no further instances. When I saw the neurologist I was given the choice of starting medication or being an in-patient for a week at an Epilepsy Assessment Unit. I refused to take medication (thankfully as I do not have epilepsy!!) and the video telemetry I underwent proved there was no epilepsy. Obviously in your case there is no doubt that what you experienced was a seizure but with luck it will have been a one off. Take your sick time off as an opportunity to rest & heal a bit more. Hope all goes well. Michelle x

Hi Rachel, You have a huge amount to deal with at the moment so I'm not surprised you are starting to fall apart. I am my sons carer (as well as recovering from an SAH myself) and I know how lonely & isolating this can be. Do you have any Social Work involvement for either your aunt or your daughter? I found them to be really helpful at points where I felt like I wasn't coping. They put help in place for me to get to a couple of my sons hospital appointments as I had no transport at that time. Perhaps they could offer help to look after your aunt & daughter a couple of times a week so you can visit your partner? I would really urge you to ask for their help, you might be surprised by what they can offer - but they won't unless you tell them how much you are struggling at the moment. Good luck, hope you can get something sorted. Michelle x

Aw Dawn, firstly I am so pleased that I didn't make you mad with my comments. Secondly, there is every point in trying as hard as you are doing. wherever this journey ends up taking you - hopefully as the new manager who gets to sack that nasty old one & her side-kick who wanted your job I remember speaking to the ATOS doctor (at the request of my employer trying to medically retire me) what I actually said about my new, nasty manager was translated as - the brain injury may have been the cause of the stress, rather than the 'perceived' effects of bullying........Even these OH people can sometimes hear what they want or are paid to hear. It was also noted that I was not available for a telephone interview despite having asked a friend to contact OH to explain that I was in hospital with my son who was undergoing brain surgery at the time. She had tried to contact OH repeatedly so don't be disheartened by them - they have their own agenda & probably the same employer paying them significantly more!! Can your Headway group offer any help or support in this? Daff is correct that your employer has to legally make any 'reasonable adjustments' to support you in your return to work but some are happy to bully you out of your job so that they don't have to...... Good luck Dawn. Do your best but remember to keep yourself healthy & well first xxx

Hi Dawn, my advice would be to print off what you have written & show it to Occ Health for their opinion & advice. I would love to say that I am shocked by the way people are behaving towards you, watching your every move, facial expression etc, etc. Unfortunately, I am not shocked, I went through the same (although in my case it was only one nasty person). To make comments about arranging to babysit you if that's what you want is harassment & bullying without question & I would urge you to speak to OH for their opinion on your abilities post SAH. You may be doing well at work & the problem is that a couple of the others want you to fail for their own gain i.e they had their eye on your job or it may be that you aren't doing as well in your previous job as you think. I'm so sorry to say that as I know it will annoy & upset you but having been there myself, I know it MIGHT be a possibility. If that is the case in can take a long time to realise but there would still be no explanation or excuse for you to be treated this way. Can't they point any any of the good things you have done or how well you are settling in as well as pointing out errors? Also, rather than beat you down, would it not be possible t employ you elsewhere as you ARE capable of being at work but maybe something less demanding (without the ********* looking for reasons to put you down) would suit you better. Your health is so important now Dawn that you must put yourself first. Michelle xx