goldfish.girl

LinLin, you always say so perfectly the things I'd love to say half as well! Congratulations on your 4th anniversary and on how much you have achieved during that time. Well done & I hope you enjoyed your day! Michelle xx

Happy anniversary loopy Lou! I just to pop on & say that my last screaming, crying melt down over how my life used to be was 3 &a half years after my S.A.H after trying to go to a lunch with about 200 others who used to work in the same place I had worked in for 20+ years. It was so good to see them all but such a punch to the face to realise how different my life had become. I hit 5 years last month & although I was aware of the date I no longer feel a need to mark it - that is the 2nd year I have felt this way & it feels good!! Obviously the date will always give me food for thought but something has changed. Hard to explain it but it's almost like that was the person I used to be. Now I am different & when I try to compare the 2 now it has changed from 'walking away from the wreckage' to being happy with a life unrecognizable from the past one, like they are two totally separate things. I hope this will be the same for others as time goes on. It wasn't't a conscious decision it just happened. Maybe my brain carrying out a life rebuild? Enjoy your celebration on . 27 th. The beach sounds fab! Michelle xx

Hi Dawn I think each health board may be different. I was also under 40 when I had S.A.H. I had my 5 year scan last week & believe that if all is well I will be discharged by the Neuro surgeon. Michelle

Hi Wem, I just want to pop on and add that you are doing so, so well. More so because you know this crash will pass. I think that's the most important thing to remember - the crashes are a phase that WILL pass. Yes, they will come again but again, they WILL pass. I find that the best way to deal with them - knowing they are temporary. As a serious 'oldie' I always read posts about improvements still happening many years down the line & felt skeptical about this BUT I realise this really IS true! I went on holiday abroad for one week last year and was so seriously exhausted/fatigued that I could barely move for many days when I got home. I was so 'fatigued' that my face & hands went numb & scared the life out of me. One year later - I have gone abroad for 2 weeks, yes I am very, very tired, my 'fatigue' symptoms have been present....muddled speech, messed up balance & so very, very tired.....but I have kept going all week, doing all the usual household & shopping things. (with a few tantrums over little things thrown in ) I just want to say never give up, the improvements really do keep happening!! I was 5 years on in July and thought I'd got as good as I ever would. I'd like to be much better still but I can see the huge improvement compared to last year It's been good to see that Michelle xx

Love the positive thread!! My latest achievement which is small but I am very chuffed about is that I have a new phone Mine was incredibly old, couldn't take pics or use the internet on it. I tried a new phone last year & got so frustrated that I gave up with it. I had help to set it up & input all my contacts etc (well actually, someone else just did it all for me) and I am slowly learning how to use it to send texts & use the internet on it. Unfortunately I can't read BTG on it as the writing is too small but I'm sure there is a way to enlarge it - I'm working on that!! I haven't yet given the new number out to anyone as I wanted to use the old one until I worked out how to use the new one first. D-Day is 2nd August when the contract ends on the old one. I'm feeling really pleased that I am doing something I couldn't do last year. Wish me luck for D-Day!! Michelle xx

Hi Kris, I also volunteer one morning a week at a day centre for adults with disabilities. I started about 8 months ago & I love it. I used to do admin work & returned to work for two years before being medically retired. My brain does not do well with admin or any computer related things any more and my organisational skills are gone so it had to be a totally different field for me. Apart from loving the work, I really enjoy learning new things & being out of the house actually DOING something again. My social skills also took a hit & I find making small talk with people almost impossible. At work I am dealing with people who have limited (sometimes no) communication skills. It has taken me quite a while to be able to chat to people but I think being there has improved this area for me a little bit too. There is also the unexpected advantage of seeing people far worse off than ourselves which helps put our own deficits back into perspective. Well done for starting this & good luck! Win, you would light up any OAP home with your humour & singing. They would love you & you'd brighten a lot of their days. You should give it a go! Michelle xx

Hi Daff, The 'banana' part of your post made me laugh! I used to keep saying 'cucumber' by mistake initially & then just as standard every time I couldn't find a word or a name I was referred for neuro psych testing by my NS at almost 2 years post SAH. I found the tests exhausting too. I thought I had done really well & even felt quite cocky about the whole thing as I did them. I was very much indenial, though, apart from knowing that I was always tired & my head always hurt - I really thought that was my only change. I did have a massive sweary mouthed tantrum & cried for days at the results. That doesn't mean that you will, you may well get a very nice surprise instead & score well on things you think you are not doing well at. I can't quote the exact outcome without reading through the report again but the basics are: moderate - severe memory problems & executive functioning. There is more but I can't remember it all now.They are the things that stick in my mind most as they are daily challenges. As Sandi said, it is a great starting point to understanding where you struggle so you can stop being so demanding of yourself when you are struggling and the key being taught skills to help you cope with any deficits that may be there. Good luck with the results & look forward to hearing how you get on. Michelle xx

Sorry Penny It is so uplifting to see such a positive, happy attitude though against the odds Michelle x

Hi Desy, Welcome to BTG. Keep up the positive, happy attitude - humour is the best recovery aid I've come across! Looking forward to karaoke night with you & Win Michelle x P.S I forgot to say that I have fits of the giggles too, especially with doctors - in particular when one said something had gone wrong with the wiring in my brain. All I could think of was my husband saying 'you're no wired up right' during disagreements - the Dr said similar & I was off

Hi Doodles I have been sorting travel insurance out too. The price tends to shoot up if you have had surgery or treatment within the last 6 or 12 months (depending on insurer). I am using Insure & Go this year. The starting price was about £20 for 2 weeks for myself & my son. Because he had been admitted to hospital again within the last few months the price went up to about £60 for both of us, for 2 weeks. Might be worth you giving them a try. I did it on-line & the form was very easy & quick. One of the questions was has your annie been successfully treated. I liked that question Michelle x

Hi Tracy I too have been through an epic battle with DVLA (my consultant actually replied to them fairly quickly but the forms take forever for DVLA to process). They informed last year that it takes 6 weeks for them to acknowledge that they received a form I know this is not what you want to hear but it's sometimes better to be forewarned. I had several melt downs over the process & I do understand how upsetting & frustrating it is to lose your independence in this way. On a more positive note, there is something called Access to Work which helps with the cost of taxi fares to work when you are not allowed to drive for medical reasons. Perhaps this would be better than the long bus trip? If you ask at your local benefits office, they should be able to tell you more about it. Good luck! Michelle x

Hi Sarah, Try not to be so hard on yourself. The early days are incredibly hard with anxiety & feeling so unwell & vulnerable. Keep in mind that you WILL get much better than you are right now & normal activities for you (and your husband) will be possible again. It takes time and it's good to hear your husband understands your anxiety and changed his plans. He'll have nights out again eventually. I found the neuro psychology input enormously helpful & I am sure that you will too. Better times are ahead, try not to force them to happen before you are ready to. You will get there. Michelle xx

Good to see you back here, alive & kicking David It would take a brave man to ignore Miss Mary's advice when she's on your case & has your phone number!!! Do you need to have any treatment for your heart or is it something that will settle in time? Hope you are indeed resting? Feel better soon. Michelle xx

Hi Sarah Yes, it is scary but as someone else said (Penny??) it will be good for your husband to have a break for a few hours. It's been a huge event for all of you & some normality for him this evening is a good thing too. I hope this helps you to get it into perspective.....I am a single mum, my older son had left home by the time I had SAH, my younger son was 7 & alone with me when it happened. We had someone staying with us for 3 weeks after I got home but after that it was just the two of us so I had to get over the worry & I know that is really not easy (to put it mildly!). I always had my mobile with me, even to go to the loo & myself & family had made sure that he understood how to ring 999 & give our address IF it was required - it never was thankfully. Also, make sure your husband has his mobile with him & that your son knows how to get hold of him. I'm sure you won't need to but just that safety net will help your anxiety. Enjoy a lovely night to yourself & look forward to how pleased you feel with that milestone tomorrow when all has passed without incident & your husband is feeling chirpy because he got to enjoy a night out with his pals Michelle x

Yes, Hello to all the newbies! Elaine, I felt a bit sad to read that you didn't feel you were acknowledged when you first posted. Speaking for myself, I am struggling to keep up with who's who at the moment as there have been a lot of new people joining all at the same time. I forget who said what or if I've already said 'hi' to them when there are so many at once. Once I've read a few posts from the same person my brain slowly starts to remember little things about each person but it does take me a while. I find it easier to stay quiet until I start to remember everyone. I'm sorry you felt a bit left out at first. This is such a friendly group of people that I am sure it was not intentional & like me, others will probably feel more confident in chatting to you once we work out who everyone is Hopefully now that you are joining in more, you will find it all very helpful & welcoming. Incidentally what soap did it seem like? I'm thinking maybe Coronation Street fits the bill, Eastenders are always shouting & miserable Karen is the pub landlady maybe? Nice to 'meet' you!! Michelle x

Aw Win, I hope you are still feeling better this morning? Good luck at the Dr. Dr Michelle prescribes a nice trip out to the nearest cake shop followed by lots of rest Michelle xx

David, I'm so pleased to read that you have told your employer you can not do those long hours. Never easy to speak up, well done you. Similar to your experience I thought I would mention an event last year. I had been away with my children, lots of travel, lots of cognitive work involved in finding my way around & a week of activities & days out. Yes, I know, this was fun not work but when I returned home I had a day or two of tingling in my face & hands. My hands were so weird I couldn't use the phone or computer properly. Along with this was a mega headache & that horrible overwhelming fatigue. The tingling also had me thinking along the lines of a stroke. It turned out that I was just exhausted, really, really exhausted and it passed with almost a week of rest. The point I am trying to make is that these symptoms can be caused by over doing it (as well as anything more serious). That was a definite warning sign to you & I am so happy that you listened to it The biggest difference between struggling in employment or still not being well & unemployed is the opportunity to rest when you need to, rather than have to struggle on to the end of your working day. I have no doubt that I would be very ill if I tried to do 5 full days a week, especially at the extended summer hours you tried. You gave it a try David - it's important to be proud of that. Michelle xx

Hi Tulip, I just want to say how sorry I am to read your post. Lots of love to you & your mum xx

Thank you for the reminder Kris! I tried to reply to your pm but I got an error message that my messages are full - I will go in and delete soon. I had the EMG testing on Tuesday. Sorry, I haven't been feeling very well for a couple of weeks so am not keeping up with BTG as much as usual. I didn't find the testing very pleasant, especially painful in my legs but really not a problem when they started on my arms. This was noted by the doctor. The good news is that I do not have the neuropathy that I was diagnosed with which led to this testing I also didn't need to have the needles inserted into my muscles which is a good thing as I think I would've refused to have it done by the time they finished doing the testing on the outside of my limbs. The doctor did explain that everyone differs in how they find it - some people really can not deal with it at all, others say it was actually 'pleasurable' YIKES (he did say that was rare though ) The end result is that a lot of conditions have been ruled out but still no answer other than maybe a SAH???? My words, not his! I asked about the SAH causing the weakness & the aches. He replied that the blood from an SAH is only in your head, the nerves that control things in your legs are in the spinal column which is not affected by the bleed. Well, silly me, I thought the blood drained down the spinal area. I also had a lumbar puncture a day or two after my first op to relieve the pain in my head & it was explained to me that it was a pinky, cloudy colour because of the blood from the SAH. I thought about explaining this to the doctor, but really, I'm just a little bit tired of being more informed than those paid to treat me...... The next step is an appointment with the neurologist that I met for 10 minutes who had my driving licence removed for 18 months for suspected epilepsy (eventually proved non epileptic). I don't think I'll be accepting that appointment. I think I have now had enough testing to confirm what I already believe - I had an SAH & didn't recover 100%. I'm STILL tired, my head STILL hurts & my body isn't as strong as it used to be & my balance is STILL messed up. As all these problems happened overnight, coincidentally the very same night as the SAH, I think I have my answer without being subjected to any more investigations involving exhausting day long trips to not be given a definitive answer Michelle x

Hi Erin, That Dr's response seems a little cold & lacking in empathy to say the least. I don't know any facts or figures but I would think removing a large AVM was far more likely to cause a bleed than having an angiogram? I've had maybe 4, I really don't remember it too well. I do remember having to go for a further one after the operations & feeling very much like you do. I was really scared & also could not face the thought of it causing another bleed & trying to recover from that all over again. It had been such a long, hard road to get better and I hadn't even been as severely affected as you were by your surgery. I think it would be fair to say that angios are not a pleasant experience but out of all of the ones I had, the final one seemed less traumatic and more interesting to be able to see the screen & actually see what was inside my head. I started calling my anni's 'the triplets' after seeing them on the screen looking like white blobs! Without wanting to make light of your situation, the only person who can decide to go ahead or not at this point is you. Have you been advised on the statistics of having a bleed/stroke if you go ahead with the angio? Hopefully they will be low but I understand that low is not always what we want to hear. We want to hear that there is no risk whatsoever. Is there someone medical whose opinion & advice you trust that you can discuss it with? Please try to keep in mind that if the risks are low you are no more likely to be that unlucky person than anyone else despite your previous experinces. Try to stay positive and keep the risks in perspective. Michelle xx

Thank you for the pm Lin, I read that before I saw your update on here. There are so many helpful tips on this thread & it is really good to see that I am not the only one struggling to get things back under control. I have to say, though, that I did yoga many years ago & found the 'tree pose' hard going then - when my physical balance was good. It's good to have a challenge though - I'm going to order the dvd. I may post again from A & E Michelle xx

Hi Lin-Lin It's great to hear that you have started this. I'm sure it will be a huge benefit to you & look forward to hearing how it all goes. I know I am & have been struggling with stress & anxiety for a long time. I did reach a calmer point since the SAH but feel that when my son got ill, that calm went & I haven't yet got it back. Unfortunately, I am more aggressive than passive which is equally not good. I remembered recently that I used to have candles on & listen to dolphin tapes (years before the SAH) & how much that tranquillity & peace of mind helped to calm my crazy, non stop brain. Now I don't seem to do anything to relieve the constant spinning & it would be good to re-learn ways to quiet my mind again. Do you have the titles of the yoga dvds you have bought please? And are you finding them helpful? Hope things continue to improve for you. Michelle xx

Thank you for the update Sandi Sarah Lou, I had never heard of them over here either but as a second best to proper custom made ones, I recently bought silicone ones. Before that I had tried foam??? ones which didn't stay in well. I got the silicone ones from Boots for about £5 and they are fantastic for noise that drives me to tears. Road noise, clippy heels, screaming kids in shops, people with loud voices, etc just everything really However, when I wear them in the house, as I live alone (apart from Dylan) I do worry that if someone broke in I would't hear them & that makes me really anxious. Interestingly, my neuro psychologist took note when I said I used them to stop noise stress a year ago to pass on to other patients - this makes me think that we are not as up to date on ear plugs after SAH as Canada if the doctors are not suggesting them to us? These are NOT in the same league as the ones Sandi has but they really do make a difference as an alternative without prescription. They stop the road noise from outside my house & allow me to sit outside for short periods of time. Unfortunately, my hair sticks to them & has to be ripped away painfully and they leave sticky smears on the phone if you answer it BUT they help until we can find a better alternative like Sandi has found - if it is indeed a possibility in the UK. Also, I could hear & speak on the phone with them in, luckily it was Dylan's dad who rang so it when he asked why I was shouting at him it was too easy to say 'because you're annoying'!!! Maybe take them out if someone you actually like phones you Michelle x

Hi Tiny Dancer, I haven't heard of that syndrome before. As it's called 'reversible' does that mean there is something they can do to treat it? It's good that you have lots of support around you while you recover from the bleed. Three months seems to be the standard advice given by hospitals which makes people worry when they are not 'better' within that time frame. There is still a lot of recovery to come after that time & I wish you well with lots of speedy improvements. Michelle x

That would make sense Doodles as although your SAH was last year, your poor brain has only just gone through another massive trauma with clipping. Both my coilings were done within 12 weeks of each other & the testing was almost 2 years post SAH. It's good to have a Dr listening to you & taking action to help. Good luck with the tests & enjoy as much rest as you can until they start Michelle x