goldfish.girl

Hi Gaynor, You are definitely not alone in being in denial & trying to prove that you are fine. I was exactly the same way. I wasn't even acknowledging that I had any problems & was trying to slot right back into the life I had before the bleed. I remember being devastated for days after being confronted with the truth about my situation & the difficulties I was having post SAH. It is very hard to hear & accept but it is also good to have that weight of pretending & trying so hard to be 'normal' lifted. That in itself was exhausting!! Now that you have been forced to face things you have the brilliant opportunity to get the help we all need to deal with our problems and come to terms with them. It all gets so much better from here Michelle xx

Hi Doodles, I have had enormous help from a neuro psychologist & also did the testing. It is very helpful in highlighting which specific areas are a problem for you but I was told that the testing is best done after a year or so as your brain is still recovering. I can't remember when your SAH was - I think it WAS over a year ago??? After the testing, the focus was on ways to help me work around the problems as much as possible, which again has been really helpful. It's often been really simple things that I hadn't thought of myself. It doesn't make the problems go away but gives you a chance to minimise the effect they have on your day to day life. It'll be interesting to hear how you get on. Michelle x Sorry Doodles, I can see now that your SAH was in Jan 2012. I missed that as I read your post

Hi Lesley, That feeling of shock does go. I didn't find BTG until almost 2 years after my SAH & it was such a relief to realise that I wasn't weird or alone in how I felt. I think it's great that so many people are finding this site so early on. It is a huge help in understanding how you feel is not unusual. I clearly remember driving home from work 6 months after SAH, having been in denial since the event & sure I was absolutely fine, just a bit tired. I passed the local park, which is always so pretty & from nowhere thought 'oh my god I had a brain heamorhage'. No idea where the thought came from or why 6 months later but I know it left me almost winded & in shock with disbelief at the time. It's not shocking to me now. It happened, it's over (kind of) and holds no significant shock or horror any more. It's just something I can think about as a past tense happening. I deal now with what it left behind but the SAH itself is a distant memory. It takes time to feel that way but you really will in time. Michelle

Hi Doodles, I haven't been clipped (I was coiled twice) so can't offer any info. But wanted to wish you well with your recovery. It must be a huge relief to have that over with at last. I'm sure some of the other 'clippers' will be along to offer support on post op recovery soon. Michelle x

Hi Mick, Welcome to BTG. I was told about this site by a brain injury support worker, unfortunately not until almost 2 years post SAH. It's great that you have found it so early, there is so much useful info on here. Wishing you well with your recovery & I LOVE the photos of the view from your home. Absolutely fantastic to be able to look out at that every day, lucky you Michelle x

Just a quick pop on to reinforce what David has said - I still have hope that the headaches & fatigue WILL get better too. Sarah (Kempse), another member on here found that the fatigue lifted after 3+ years (I hope I got the time scale right???) so it really CAN happen:-D It's important to never give up that hope! I don't have the problem of Drs not believing I am in pain, just not knowing why it still happens or what to do about it, other than pain relief, which I avoid almost religiously as much as I can. I don't like taking medication of any kind but do when things are really bad or have been on-going for days. Never give up hope, as it can get better. It's just about finding ways to deal with it all until it does. Michelle x

Hi Teechur I don't think there are any answers. I am almost five years on & the headaches & fatigue cause me to change plans or suffer through them when I desperately want to be at home with quiet around me. It is frustrating, I understand exactly what you are saying. I had many, many tantrums in the first few years & Yes, I did laugh at myself afterwards knowing that I had acted like a 2 year old who didn't get their own way. I don't have many tantrums now over things that get ruined because of my health, but I do still sometimes have overwhelming sadness when I miss out on things or am floored for days after doing something that would've been part of every day life before SAH. It's OK to feel angry & frustrated. How else would anyone feel in the circumstances but it is also a part of the recovery. Hope you feel 'better' soon. Michelle xx

Hi Daff, I haven't been keeping up with posts as much as usual this past week. Sorry to hear you had to go through the scan, LP & all the worry, but delighted to hear that you are ok. Hope you are feeling much better very soon. Michelle xx

Hi Wem, It's possible I am completely mis-understanding what you've asked - if so ignore my reply!! I have realised that some days I can sit from 7am - 10am thinking about how to do what I need to do that day. Simple things like I need to cook a meal for the evening but there is a load of washing to do & my plants need to be watered and my dog walked. I spend literally hours trying to work out which to do first, how to put the tasks in an order that makes my day smoother. Then, after several hours I am exhausted just thinking about it. So I finally have a shower & then go & lie down, having achieved nothing on the list. It frustrates me enormously but it's a cycle I have not managed to break....yet. I have, however, learnt over time that I take 2 days a week where I will not plan anything at all with friends (like going to the beach to walk the dogs or having lunch out - simple things that I used to fit into my day pre SAH but are now my energy for the day used up). I refuse any offers on these days and suggest on of my 'better' days as an alternative. Weekends are for me to do what I want, when I want and am open to offers if they arise. Mondays & Thursdays are my days were I will not plan anything with others and as much as I can I arrange appointments, meetings with people on other days. Doesn't always work out but I try to stick to this and do stick stick to it over social activities. It does help to have in mind that if you are busy one day you might need rest time the next. That is all about learning how pacing works best for you. Having said that I went on a 'shopping trip' today to buy clothes for a holiday. Managed ONE shop and lunch & I was done. Tomorrows plans are cancelled so I understand what you are saying about doing so much one day then factoring in some rest the next. It doesn't always work out how we planned it I'll have to do another shopping trip sometime and the plan had been - get there today, do it, done..... Michelle xx

Thank you Lisa, I have already decided they can stick ONE needle in.....I'll let them know if I'm having any more inserted after that;-) I don't do pain & am well able to voice my opinions if it's inflicted on me I've already done a week of ECG where they scratch your skull to insert needles, not sore as it's done but pretty sore after a few days of it. I'm not so desperate for a diagnosis that I'd do that again...... I am how I am and one day they will accept that my issues are brain injury related alone. It's not uncommon if you read the posts......I don't have the same need to explain it as the doctors do...... Interesting that I told the same rehab consultant 3 years ago that I felt my arms & legs were weaker and she dismissed my concerns, she felt that I was 'weaker' than her but wasn't concerned about it - now, suddenly we need to do more tests to find the reason......it gets a little boring. Michelle

Hi Kris, I'm having the testing on June 11th. Will post again if I get any answers from that. Michelle

Hi Paula, I had a 3rd annie coiled three months after my SAH. The surgeon was very careful to say that they couldn't advise me what to do & it had to be my choice if I had the op or not. I changed the question to 'what would you do if it was in your head' - he said he would have it coiled. It was a 3mm annie, much smaller & less likely to burst than the other 2 which had been coiled after the bleed. The specialist nurse had also discussed with me how anxious I felt about the untreated annie. I was very, very scared at that point as I was still trying to recover from the bleed. Her advice was that, if I was that worried about it having it treated was undoubtedly the best decision to make. Obviously, it's a very individual choice but I think a few other members have also found that the operation to treat an unruptured annie is absolutely nothing like the traumatic event of recovering from one which has already burst & caused a bleed. For me, I was allowed home the following day after the unruptured one was coiled. I hope this helps. Michelle x

Hi Penny, Great to read your update. Isn't it amazing how much things can change so quickly in the early days It's funny for me to read posts & remember things I have forgotten as time passes. Those 4 hourly medicines were a nightmare. I remember now that my sons' dad moved back in temporarily when I got home from hospital & had an alarm set for the meds through the night. I was never overly pleased to see him come into my bedroom with them & a glass of water!!! It's the little things that help at this stage - I only had to take those pills for 28 days & it was a much looked forward to goal to get to the last one. It won't be long until you are there too & looking forward to a good nights sleep is an important goal. Short walks are great too. My sons walked with me along the short road I live in, mostly to keep me upright & help when people spoke to me as I wasn't able to communicate well at that point. It's only 14 houses & being able to walk past one further house in a short space time was also a great boost. It helps to mark these small improvements to reflect on during the days when you (or your partner) feel that progress is slow. Michelle x

Hi Anna, I remember reading your posts as it happened & being so upset at the outcome for your mum. I'm sure many others were equally upset. We all realise how very, very lucky we have been to survive, albeit with life long changes & challenges, but we are still here. For many of us, your story showed us how awful this event is for our children to witness & the unimaginable pain it causes them to witness the aftermath in the early days, let alone the aftermath if things end so sadly. Of course you miss your mum, you loved her as she loved you. If you find you have to hide your feelings from those close to you would it be possible to speak to a counsellor at uni. Someone who is not connected to you or your mum that you can open up to to let the pain out? I can only say that if I hadn't survived, as a mum, I would want my children to do the best they could with lives & it would hurt me so much to know they were sad & missing me. I would want them to be happy. I have no doubt that your own mum would feel the same way and want the best, happy life possible for you. Michelle xx

Hi Lynn, What an inspiring post & your positivity will be so hopeful to other new members who are just starting the recovery journey now. Good to see another Scottish member on here Michelle x

Hi Sally, I think you saying that you do not want to imply he is damaged or incapable is a really good thing. I know when I first got ill (and even to this day) I feel offended if people imply that I can't manage things myself. Although I can now sometimes see that I am defeated by a task & ask for help but I really don't like having to do that. What worked better for me in the early days was not having someone try to take over when I struggled as that would annoy me. My family learnt that reminding me I had been seriously ill & suggesting they help with things, just until I was feeling better worked out well. That felt more like they cared rather than they thought I couldn't do things myself. The words 'just until you feel better' were very important to me as it highlights that they knew I would get better. That makes it easier to accept help. I would also encourage your sons dad to speak to a doctor about how unwell he is at the moment and his loss of appetite & sleep pattern. It's often part of recovery but there may be some way they can help him with these issues. Also just having someone professional listen to him & reassure that all is normal can help take away some of the worry he must be feeling. Michelle x

Thank you Mary 'It did not hurt at all' is exactly what I wanted to know! Michelle xx

Morning everyone! I'm just wondering if any other members have had EMG testing for muscle weakness? Aparently it involves sticky pads on your skin & to test the nerves with small electrical impulses. I have an appointment to have this done in a few weeks & would like to know what to expect, especially about the bit of the letter that says 'a small needle may be inserted into some of the muscles' Not sure I like the sound of that! Hopefully someone can tell me they've had this done & I am being a huge big drama queen because needles were mentioned Michelle xx

Macca/Wem, I am reading your posts & nodding agreement. For me there is no difference between over doing it and stress - the issues are identical (although stress possibly causes a worse headache). It's coincidental that I read your posts today. As you know I am not working now apart from a Friday morning doing voluntary work. Today consisted of a nurse appt at 8.30am, followed by picking up two friends to look at some houses, got home & gas service man arrived, along with my Dad to do some weeding just as gas man left. Followed by my son coming in from school with some issues that had upset him, closey followed by the window cleaner Whilst not much of this day involved anything physical, I am SHATTERED. My head hurts, I couldn't find the word for a plant to tell my dad about (not even a rambling list of possibilities or clues for him to act on - just absolutely nothing). My mind was totally blank & I just stared at him waiting for a thought, any thought at all, to appear. None did & I had to go and find the bulbs to show him. Every muscle in my arms, back & legs ache and I did nothing physical at all along with not being stressed by any of the people, just too many of them in one day perhaps? It's hard to know what is over exerting yourself & what is stress when the outcome is exactly the same. Carl, when I read your posts I nod even more vigorously in agreement. I was put through the same. The new 'manager' wanted to get rid of me and set new tasks, knowing that I was struggling to achieve all the original ones. It felt like being set up to fail so he could claim advantage. The only comfort was that everyone I worked with could see what he was doing & were disgusted by him. Small consolation, but it's good to know that the people with similar moral values to our own are on your side, even if they are helpless to do anything to help. You will undoubtedly retire with your pride intact & your antagonisers will be silently seen for exactly what they are I think you win!! Michelle x

Hi Liz, Sorry I don't know if that means your shunt is adjustable or not?? My son's shunt isn't adjustable, just drains continuously. I've only just read this thread but thought I'd comment that he did have stomach pains for quite some time after his shunt was fitted but that doesn't happen now. Hopefully it will also be something that settles over time for you too. Thank you for the link about 'shunt cards' Penny. I clicked on the link to see about ordering one for my son, should he become unwell when I am not with him. Unfortunately they are only available to people in England, N. Ireland or Wales - not in Scotland for some bizarre reason Michelle x

Hi, I have no advice on medications, only a GP or consultant can advise the way forward on that. But, it's important for Gary to know that at 8 weeks into recovery - there is enormous improvement to come! It's easy to look back & see this, harder to see it when you are in that time & desperate to be well again. I think almost everyone on BTG could confirm that at 8 weeks you are so far from being well but that, with time & patience, what you can do at that early stage is multiplied massively as time goes on. If Gary can learn to accept that for now he is not well but that this is a temporary situation & allow himself to go with that & rest for a bit longer he will see improvements. 'Temporary' is the word to remember, it IS going to get better than it is right now. Always keep that in mind so that you can both keep your spirits up. Michelle x

Penny, thank you for highlighting that link - I hadn't seen it before. Louise I feel your frustration. It is a total nightmare with calls to the Benefits people I was one of the few lucky people who got ESA in the support group without an appeal - although I only got £10 a week for about a year. I get more now but about half the current rate as I receive Carers Allowance for looking after my son. It is an exhausting process to apply for these benefits but I agree with Pennys' advice about Welfare Rights input, they can pick up on things that to us have become 'the way it is' but to an experienced eye are a problem that limits your ability to be able to work. They are contactable through the local council in this part of Scotland (back of beyond ) and possibly in your area too? Just when you think you have it all sorted the new PIP will come into place, ignoring an indefinite award of benefits for a permanent injury or illness......so another battle may lie ahead for us all. I expect it will be even harder to be understood when that takes over Keep smiling Louise! Michelle xx

Hi Eve, I remember being very off my food while I was in hospital. I had no appetite at all & was mostly just too tired to eat. Hopefully things will improve over the next few days. Incidentally my son also had a brain operation 2 years ago, for a different reason & also would not eat for quite some time. He managed simple things like yoghurt or custard which often made him sick afterwards, unfortunately but at least he was eating a little. Have the hospital already tried foods like this? (I'm guessing they know what they are doing & have probably tried this already but thought it worth a mention, just in case). The visits back & forth to hospital along with the very uncomfortable chairs for visitors to sit on can really take their toll. Try to look after yourself too & have some rest as much as you can in the circumstances. Michelle

Hi Gwylim That's good info for people to know. I was told in May last year that DVLA had a backlog of at least 2 months. It's disgraceful that they still have not cleared that backlog & people are still waiting for confirmation from DVLA after doctors declare them fit to drive. Especially so for those whose jobs depend on them getting their licence back. People end up losing their jobs as their sick leave has gone on for too long whilst DVLA take their own sweet time to even look at a report that clears that person to drive again. I agree with Bagpuss that the rules do not make sense. I was advised not to drive in January 2011 as I 'may' be epileptic, in May 2011 DVLA sent me a letter saying I could no longer drive from the 22 May 2011 - four months later!!! Luckily, I was not having seizures as I could have driven for all those months, risking others lives as well as my own...... There are two massive problems here: The lack of correct information given to patients & their families at the time of SAH over the legal aspects of driving after a brain injury/operation And the length of time it takes the DVLA to act on information they receive from health professionals. It is often the case that one Dr passes the buck to another at a different hospital/GP surgery as none of them want to be implicated in the 'fit to drive' decision in case something goes wrong. This system needs a massive shake up to accurately keep everyone informed & ensure safety on the roads.

Mary, I am 100% behind you on the amount of fatigue & pain in comparison to how much we have achieved. It is ridiculous to be so sore & tired for soooo long after a relatively minor amount of physical effort What I can achieve physically now is nowhere near what I used to do & possibly have a minor muscle ache but I keep getting told that this level of fatigue or muscle pain is not what would be expected so long after SAH?????? As you know I am almost 5 years on & this issue is still the same. There are times I want to cry my eyes out & scream at the unfairness of it all....but, hmmm, that would just make me more tired mentally I think it would help if doctors agreed that my levels are much reduced by SAH, rather than claim it cannot possibly still be related as this makes me mad & upset at myself - as if I am just not trying hard enough. I really could not try harder & this far on, it's my family & friends who can see this while I'm still declaring that I'm fine, I can do a bit more (in the garden, mentally with other issues). They know I need to stop, I know I need to just finish this last thing.....and then BAM!!! They were right.........grrrr (luckily they are never brave enough to say 'I told you so' ). Mental exertion makes me fatigued only but even that can take a couple of days to recover from. Physical exertion can wipe me out for a week!! It's interesting to me to know how many others suffer physical exhaustion after only mental tasks - I find that can also cause muscle aches & pains for no identifiable reason. I didn't run about, lift, tug or pull but the fatigue can make EVERYTHING sore, achey & stiff. Is this something other members find too? Obviously I would expect the muscle fatigue to happen after a spell in the garden or similar but, after a day of catching public transport, being somewhere on time, just things that require organising thoughts & time can cause physical pain too???