goldfish.girl

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

Hi Wade, I would suggest you speak to your doctor about this, especially as it's happened so much this week. It might be just one of the many weird sensations we all get after SAH especially in the early days so hopefully your doctor can put your mind at rest and rule out anything else. Hope you feel better soon. Michelle

Read my reply again.....tried to calculate again, there are not enough spoons, working or not. Someone needs to set the starting spoons higher I think But, for some people, the build up of spoons does happen & it's important to remember that - some of us really do get better!!! As for the Tatts.....I really don't want a life long reminder of SAH as I still hope that one day it will be so distant that I forget it ever happened and I will be better. However, my older boy loves his tatts and would probably 'get' why some people want the reminder . Also, I'm not all that keen on pain after SAH and brain ops, so tattoos, piercings etc, whilst I admire them and am in awe of those who under take them, this is probably not for me...... Michelle x

I concentrated so hard on my reply that Sandi & Mary posted while I was working on it, I think they cyber nicked some of my spoons there Much as I love Spring (?) and summer, that depletes more spoons trying to keep on top of my garden along with all the year round depletion of available spoons. Michelle xx

OK I re-read it. I have no memory of reading that particular explanation before but it absolutely explains it to perfection. It would be great if it could be translated into post brain injury daily life but there really wouldn't be many words that needed to be changed. So if I start a day with 12 spoons it would be a bit like this. I am always up early, (usually 5am) that's probably a spoon already as I have to stay up because my son will be up in 2 hours for school. He wakes up & tells me he has to go to school dressed as an African tomorrow for a fund raising day , there's another spoon already!! I am fanatic about cooking healthy home made soups with lots of veg in & meals for dinner with the same healthy content, so I think, OK, I'll do soup & prepare the meal for tonight before I get in the shower......2 hours later, all is cooked (or at least ready to cook) and I've used another 3 spoons trying to concentrate & stay in the kitchen because the cooker is on (if I leave the room, I'll start other things & it will all burn) Meanwhile, my dog is bouncing about hoping to be walked (twice a week my dad walks her so I don't need to factor this in). Also the mail has arrived, their will be a new appointment for either him or me, so I go to calendar to see if it clashes then start thinking 'who can I ask to take us if it's further than a drive of 20 minutes concentration'? Another spoon. Two spoons if it's long distance & I have no-one to ask to give up that day, worry is spoon depleting more quickly than physical effort for me. If I have to cook and walk my dog, that would be another 3 spoons (1 to walk her her, one or two to concentrate on the recipe & another one or two to decide which I need to do most). If we have appointments & have to be somewhere at a certain time and possibly to several places at a certain time in one day......the spoons are used before I even get dressed. Holding conversations at these appointments or driving ourselves to them using concentration spoons and it's all over. Dealing with a bad head pain day.....there are no spoons but someone still has to get children to school, be there & listening after school & cook a meal (sadly the dog has to take second place some days ) Then there is just the very basic housework, another few spoons or let it all build up & be flattened by the lack of spoons when there are no clothes left to wear. Clearly, everyone will be different but for me, organisational skills, time management & memory have taken a hit so every day is hard & tiring mentally. Adding in the on-going fatigue (maybe from the brain drain?) and the head pain & there are just no extra spoons ever. I lost count of my spoons very early in my reply One of you good at numbers folk might count it all up and tell me I have LOADS of spoons left each day - that would be so funny, but slightly embarrassing!! Michelle xx

I also thought 'spoons' were well known on BTG but only that you have so many a day to use & that you need to keep some in reserve if you have a busy time coming up and if you use them all you will crash? I'm going to read Jimmy's link too in case I've remembered it wrong I have to say, though, that reading Davids & Sarah Lous number stats on how many spoons they used & on what baffled me (my problem, not the explanation) but, er.....you have to still be good at numbers to keep up???? When I still worked, there were no spoons left over, now there are a couple some days but not all. However, I'm going to read the link in case I've misunderstood Michelle xx

Hi Wem, I like Sandi's advice. If I am trying to fill in a form or understand a letter, it has to be absolutely silent around me, no tv in back ground, nobody speaking to me etc. I find things like this really tiring mentally. I wasn't sure if you meant the problem was with distractions or being able to concentrate & focus while reading something? I find that if something is very long, or uses unecessarily over-complicated speech, that my brain almost shuts down & refuses to try reading any further. Sometimes walking away from it & trying either later or another day can help other times I have to ask someone else to read it and just give me a summary. I also struggle to retain information that I read but I don't think is a concentration problem, more a memory issue. I would definitely try taking a break from what you are doing & then go back to it, to see if that helps. Michelle xx

Sorry Scarlet, I read again and you didn't say 'freezing' but 'starving and thirsty'......the rest of my post still applies. Hope all goes well on Tuesday

Sorry Scarlett, I have a memory problems Why would you be travelling overnight, freezing & starving? From North of Scotland I can travel overnight on a heated sleeper train and be in London the next morning (7am)! I forget where you are? Personally, having gone through a bleed, I would absolutely be having the angio, very possibly followed straight after by the surgery while you have the option to do so, hungry or not with a large annie. I really wouldn't be putting it off or taking any chances when the immediate option was right in front of me, especially as you have been so very ill with stress at the thought of it all?? Obviously, we are all very different but perhaps it's time to stop fretting, decide what's most important to you, especially with a son with disabilities who needs your help 24/7 and do what is recommended on Tuesday after the angiogram? Keeping in mind that surgery without a bleed beforehand will be so much easier than the alternative, especially as you have caring duties without any support. Michelle

Hi Tina, Thank you for your experience. I'm waiting for the rehab consultants advice but am not seeing her again until July. She did seem baffled by why I was told not to take Ibuprofen but she is very thorough & I'm sure she will investigate it fully. Paracetamol very rarely works for me, other than to take a slight edge off the pain and it would be good to be able to take something 'mild' on top of it as a new measure rather than have to wait 4 hours before taking something strong enough to make me sleepy at best. I wonder if it's an issue that is different for patients who have been clipped rather than coiled? The consultant I saw was in Aberdeen, where they only do clipping, not coiling surgery (Edinburgh is the nearest place for that) and maybe that would have some bearing on what she knows of using this medication? However, she is very well thought of, so I am sure she will look into it fully before advising me further. Thanks again, Michelle x

Does anyone have any info or advice they received from doctors about taking Ibuprofen? Having just read on another thread about medication that can thin your blood (and not wishing to take over that thread) reminded me of a conversation I had with the Rehab Consultant last month. I am convinced I was told NOT to take Ibuprofen after I had my SAH???? But the rehab Dr suggested trying this with Paracetamol when Paracetamol alone didn't take the headache/head pains away. I mentioned that I was told not to take it as it thins the blood and she said she would have to read back through my medical notes to find the reason why not. Is this something anyone else has been told? Perhaps the advice was only relevant to the early stages of recovery and it would be ok to take it now (a few years on)? Michelle x

That's really frustrating Scarlett but I know that all our medical details are on a database that any hospital can access - I'm not sure how this works if you are going privately for the angio, if it's in a hospital that also treats NHS patients it shouldn't be a huge effort for them to look up all your previous details? My mum also has angina (along with other medical issues) & her last hip replacement was done under sedation rather than a general aneasthetic but I don't know if this is an option for coiling or clipping of brain annies? I believe there are brain surgeries carried out under sedation as the patient needs to be awake but I really have no idea if it's possible for the surgery you may have. Perhaps some other members on here will have more info on this? Good luck! Michelle x

My neurosurgeon and his team were the ones that developed the glue procedure as well as new coils being used in Europe. I didn't realize how lucky I was to live 10 miles from a world class facility. http://www.capitalhealth.org/medical...ascular-center Sorry, I'm not sure how to post with a quote? Bluescat, that really interested me as I had 2 annies coiled during the emergency op & a 3rd coiled 3 months later as they were going to order coils from the US (I think they said that the 3rd annie was too small to coil with the coils they had available during the emergency op but that the US had smaller ones that would work). Scarlett, good luck on Tuesday. Fingers crossed you will also have the op that day & this worrying time time will finally be over for you. I had an angio 3 months after the emergency op & was kept on the ward with the catheter in my artery over night so that they could operate the following day. The only discomfort was having to lie flat until the surgery the following morning. Hope to see you back & posting that it's all over very soon Michelle x

I'm wondering if the job-share option that Sandi already mentioned is a possibility for David & Teechur? Is it something you could discuss with your employers? Obviously, none of us can afford a half wage after a life time of full time paid employment but, and I'm just pondering here, if your brain still has the full function of your pre-SAH ability at work & fatigue/headache is the sole issue (and that's not a minor issue), surely it would be worth your employers while (financially) to keep you on in a part time/job share role allowing your work knowledge & expertise that is still fully intact to train others who can learn from you in the 'other' part time/job share vacancy??? Not ideal when you want to retain your full time status but after returning to work for 2 years & not coping either brain wise or physically, it is an option to look at if your brain ability is still up to the job but your physical ability is not? Good luck! Michelle xx

Daff, Your annie has been treated and checked since & it is all OK. It takes such a long time to believe in that but you know it really is ok. In time (a long time ) you will have faith in that and feel calmer about it. Honestly! I can't comment too much on the shunt as I know that I still freak out with Dylan's but I hope to, one day, feel reassured on that issue too. For us both to learn what is a serious issue & what is normal. We will get there (him probably sooner than me ) but I am sure the just not feeling right versus feeling like it's serious will come to us both and you too. I'm picturing the same words of long term shunt patients as we have on BTG from long term SAH survivors- where they were really scared too at first & now have the fear under control with experience? Both you & Wem have done amazingly well today. Be really proud of yourselves & your achievements just one short year on.....Can you imagine what you both still have to offer in months to come as you recover even further Well done to both of you! Michelle xx

Hi Teechur, Don't feel like you have to explain yourself or your high pain threshold to others. There is nothing about being a pain whimp or going to bed with an attack of the vapours about this.I can only compare it to giving birth with no pain relief, rather than running a marathon. A high pain threshold is high regardless of the situation. For a small percentage of people the pain does not resolve itself. Having had a full blown SAH, you/we do know what pain is and what is annoyingly sore rather than debilitating pain as opposed to something you can keep pushing through. No-one is judging your pain stamina. But please remember that for most people this level of pain will not be a long term issue. I know that after a year, it seems more than long term already but for most people it is not expected to continue this way. There is a massive odds on that this will settle for you. Some days you can 'push through' the pain, some days it's so bad that your words, thoughts, balance & everything else is affected by it. Also the pain medication strong enough to help does not enable a productive day after you have to give in and take it...... Yes, it's very misunderstood by doctors if it doesn't settle but that is often after a 2 year period and you are still early-ish days at one year on. I can't remember if you have already spoken to a neuropsychologist but they are so aware of the pain and fatigue issues long after a normal dr is baffled that you are not fully better. I have never tried the ice pack on my head but the heated beany, peace & quiet when you can really does seem to help. The ice pack is something I might try in the summer Michelle

Hi Nic, It's good to hear your mum is now in NHS care for follow up. I'm sure your wee boy will keep you all going. By the time he has his party perhaps your mum will be able to go to the living room for a short while to enjoy it there. Small things improve so quickly that it may happen, even if she can only go there for a short time. Hope you all have a great day on the 1st Birthday, where ever you celebrate it! Best wishes to your mum for a continuing good recovery. Michelle x

Hi Jimmy, welcome to BTG Congratulations on the imminent arrival! Your post really struck me for two reasons: 1. I also felt the same way whilst on the 'brain ward', there were others with far bigger battles to fight. It was a really, really scary place from that point of view. 2. Men should also pay good attention at ante natal classes - when my SAH hit, I used the breathing techniques I learnt at ante natal classes to try to cope with the pain until help arrived My boys were 17 & 7 at the time and, if I'm being honest, labour was less intense than the pain that hit that day. Only in that, during labour you actually get a bit of breathing space between the contractions, not so much during SAH, actually not at all.... You will be a fantastic birthing partner when the moment arrives. It will also be good to hear of another happy, baby news event on here. We were all so excited about Lin-Lins baby news when it happened & how great to get advice from a recent new parent on tips that will help if you can implement them before the big day. Good luck & best wishes to you & Claire! Michelle

Hmmm....this is tricky so many years down the line....I've had to really think hard to remember what I missed before my life now became the norm..... Miss: 1. My good health activity levels, gardening,working, chatting non stop, day long shopping trips, cooking etc, one hundred things on the list each day (slight exaggeration there ) 2. My social life as it used to be, wild, fun, spontaneous, loud & late! 3. My ability to click in social situations at first meetings & being able to read meaningful books rather than just 'chick lit' What I love post SAH: 1. Time to sit and just be on the beach watching the waves 2. Volunteering in a field I had always been remotely interested in but unsure I could cope with & would never have been able to leave paid employment to try it out & finding out that I LOVE IT! 3.Being here for my boys (big & small) before & after school - no child minders, day care facilities involved. For the bigger boy - just being here if he needs his mum without being too busy to stop and listen. I think I listed way more than 3 of each and I think I could go on and on and on - mostly in the positive, post SAH list It really is very hard to think about what I miss from before but I honestly don't think there is much...... Michelle xx

Hi Scarlett, Just thought I'd pop on and say that as my own son also has disabilities, he has a Social Worker who was already in touch with us before my SAH. You have the time just now to speak to social services and explain your situation with your son & your need for recovery time after your op. It's not a nice situation to be in for you, but perhaps 'lucky' in that you know surgery is coming up so you can start to organise things now. It would be so much harder to do this if you had had an SAH & were then trying to organise help for him. My son's social worker was fantastic after she was informed I'd had the SAH. Transport was arranged to take my son to school & in the holidays a care worker came and took him out every day to places of interest to a child. They also helped to take him to appointments & there was other help offered which I didn't need to take up as my ex-husband was helping us out at home (he even moved back in with us for a short time - I must've been ill to have put up with that!!! But the help was needed & appreciated at the time.) Clearly your own sons needs may be more significant and I would urge you to make arrangements now for help to be put in place. Hopefully, starting this as a short term project might also take your mind off worrying for at least some of the time. As someone has already said, it's the recovery from the actual bleed that is so hard. Any brain surgery is going to need recovery time, but without a bleed having caused damage elsewhere in your brain, it will be easier than recovering from an SAH. I hope that helps a little. Michelle

Although I no longer officially 'work' I am non stop busy (although my new busy is different from my pre SAH busy) mentally, emotionally etc. I would have to say, David, that if you didn't need a duvet day, there is NO WAY you'd be able to lie there and do nothing for so long.You would be too bored to just lie there & sleep! Mine can last for a few days and they are by no means a life style choice. If you can do no more, you can do no more!!! The proof would be in that when you try, your words are messed up, muddled & wrong, you cause more mess than you try to clean up. You can't make sense of simple things or conversations & then have no recollection of them afterwards......definitely not a lazy way to waste a day but your body & brain saying 'nope, that's it' for a few hours. You either listen & give in to it or you make it all worse for many more days to come..... Michelle x

Hi Teechur, I'm sorry I didn't see this thread before, I only spotted it this morning because someone posted a few hours ago. I notice my name was mentioned as a long-term 'head banger' I saw a rehab consultant a few weeks ago about the headache/pain & fatigue. Unfortunately I went alone & as always, I can't remember all that was said. I'm seeing the nuero psychologist tomorrow who was going to speak to the rehab dr & hopefully explain it to me again. If anything helpful comes out of this I will let you know. Apart from prescription pain killers (which can lessen the pain but don't always take it away) I tried a heated bean bag on my head with an eye mask on which surprised me by how well it worked! It's not always an option though - we all have busy lives & things to do, so laying down with the beany & the eye mask isn't always possible!! Will post tomorrow if I have any encouraging news. Please check in the Green Room as I may forget to post on this thread. Michelle x

Hi Karen & Jim Great to hear that you are settling in at home & that finances are being sorted (although very slowly ) In the early months after SAH I slept eccessively too, probably not quite as much as Jim needs to just now though. I slept most of the day & for a good 10 hours at night too. I can remember having showers & being so tired by them that I would crawl back into bed with my hair still wet as I had energy left to do anything about it. I also remember being too tired to eat meals that were cooked for me, literally the effort of lifting my fork & chewing made me so tired I would have to leave the food and go back to bed to sleep. Try not to worry too much about the tiredness, I think most people on here have been through similar & it does improve in time. Good to have an update on how you are both doing. Take care. Michelle x

Hi Scarlett, I'm starting to wonder if holding out for NHS funding at a hospital of your choice is prolonging your access to treatment, with all the funding meetings, red tape etc, etc? I do understand your fears as I was transferred from my local A&E hospital after a CT scan showed the bleed to a Neuro hospital in Aberdeen. I had an angiogram there, was diagnosed with 2 annies, one bleeding & transferred again to a neuro unit in Edinburgh, where they discovered a 3rd annie when they carried out their own angiogram. This was operated on 3 months after my emergency coiling to treat the two that had been identified during the SAH & I do feel that if I had not been transferred to Edinburgh, the 3rd annie would be a silent time bomb in my head. However, if I was told tomorrow that I had another large annie & that hospital knew it was there from my scans, I'd be straight in there having it treated........ Locally, many surgeons are employed by the NHS but also do private operations in the same NHS hospital (for a hefty fee to top up their already considerable incomes and people that can't afford to pay wait even longer on NHS waiting lists, having no idea the specialist surgeon only works part-time as an NHS employee:shocked:) so, while I understand your lack of faith in your local hospital, they now have CONCRETE EVIDENCE of your condition and, let's face it - NO SURGEON wants to lose a patient or botch an operation - they have success scales too!!!! Maybe instead of waiting for the best, you might consider the one who can see you quickest (possibly considered the best in 'private paying land' but also working for the NHS on certain days, in certain hospitals!) I really don't wish to sound rude but if you are scared to even walk your dog you really should perhaps consider bog standard NHS hospitals if that would cut the bureacracy and get you treated quicker? I think someone already mentioned that even as a private patient, you can still be 'bumped' on the day if there is an emergency? Michelle

Hi Lescaut, I think all parents ask the same question after an SAH. My neuro surgeon told me that unless there were two 1st degree relatives that had an SAH, he wouldn't scan my children. (For my children it's their mum & their mums' auntie who have had SAH's). My older son, who is 22, was offered screening by a different hospital neurology department. For now, with the invincibility of youth mind set, he has chosen not to be tested. As Mary says, you can only make suggestions to adult children, you can't make them understand how scary it is for you as the parent..... Also, the neuro surgeon who said 'no' advised that all not all anneurysms are treatable etc, etc, that would also be very hard to deal with and even if there were any found, many people have ones which never burst. I think that was meant to reassure me, it didn't! All you can do is give them the facts on the possibility of it being genetic, advise them about the risk factors (smoking, drinking & high BP) and leave them to decide how they want to deal with the knowledge. Michelle