goldfish.girl

Dawn, I'm so pleased you replied with a similar story. I do worry that when I say these things, it will upset others. I don't want to drift off topic but I think there is a point I needed to make. Leaving work hasn't changed how well I am but I can now stop when the fatigue related issues hit me. Before, I had to finish work, then collapse & be useless at home for weeks at a time. Now I can stop and only be useless for a day or two before I start again. I don't expect any less of myself than I did while I was working, I just have the opportunity to stop before I make it worse for longer......... I was terrified when I left my job & started the medical retirement process - how would I pay my rent, how would I afford food or heating etc, etc, etc. It hasn't been easy but the bottom line is, I am not homeless, I am not starving, I am very often cold as the heating is only on when my son is home,big jumpers, woolly socks for Scotlands prolonged winters I do more home cooking with cheaper ingredients adding in healthy extras. For me the decision was, keep knocking myself out with a job my brain could no longer do & become more & more ill as time went on or change my lifestyle & financial expectations. My wage was the only wage coming in so these terrifying thoughts were all too real. It wasn't about cutting out treats, it was cutting out basic living needs. Luckily I can't drive far so that's the petrol bill slashed too. All of our situations on BTG are very different. I can only share my own personal experience & encourage others who are struggling with being at work to consider the options in a realistic way bearing in mind that leaving work doesn't miraculously make you 'better' Michelle xx

Hi Gazzer I was never told I had to inform DVLA, only told by someone in the hospital that I couldn't drive for 3 months. My GP told me after 6 weeks that there was no reason that I shouldn't drive. It is incredibly hard to know or follow the rules when we aren't told what they actually are!! I don't know what to suggest as I lost my licence about 3 years later due to suspected epilepsy & had an unbelievable fight on my hands to get it back months after I'd been cleared of having post stroke epilepsy. According to DVLA it would have been returned sooner had I surrendered it voluntarily??? It was already with them as I had applied for a renewal photo licence as mine had expired at the same time as the epilepsy issue arose. Hard to surrender a licence that is already with them Incidentally I kept my car on the road during that time & the insurance company were not concerned that I was 'banned' from driving, they were aware that I, personally, was not driving the car but a named driver on the policy was. When I got my licence back, the insurers were again unconcerned that my licence had been revoked as long as I had a letter from DVLA confirming that I was now able to drive. The rules are really quite hard to make sense of I'm interested to read Sami's post about the 5 years on rule as I am 5 years on in July & it would be good to be told by the insurers that the SAH is no longer applicable. Although my insurance premium has never gone up & I have told them since I got back on the road, I always take the name of the person I spoke to & the date we spoke as I get a bit panicky at the thought of the insurance company trying to declare ignorance should I ever need to make a claim. Interestingly, I had to pay a huge premium on travel insurance last year but this year the questions were 'was the SAH caused by an aneurysm? Was the aneurysm successfully treated by coiling/clipping'? And that's it.....no extra charges applied. I'm starting to see a bright side to being a few years along the recovery road Michelle x

I have to pop back in to add....... Even leaving work does not (for me anyway, others will be different) change the level of fatigue or muscle pain when you try to do normal life stuff. It is still there just without the salary I hope that will help those of you still struggling at work to keep going. Not working hasn't changed things and the biggest plus is that if your brain function still works well enough to do your previous job, you are doing well It's not easy but you are doing it. A huge well done to all who have managed this! Michelle xx

Hi Mary, The fatigue is a constant thing for me although I do occasionally get short breaks from it now where I can go without a nap in the afternoon for a few days at a time. Not often but it's an improvement all the same. Yes, anything physical like gardening even for a ridiculously short amount of time causes pain that is often more debilitating than the fatigue. I can have a rest day & feel better fatigue wise the next day but the muscle pain continues for several days. The biggest physical pain I've had recently was after a shopping trip - 30 minute train ride each way, maybe 3 shops & lunch out, so not a massive trip but the pain was everywhere for days afterwards. There really hadn't been any heavy lifting or similar involved on that occasion. Michelle xx

OK, I'm going to peep over the wall here & say that I don't do paid work any more, just voluntary work one morning a week & wait to be shot down I started in Nov last year & finally, finally felt like I'd got to know how the staff along with building a rapport with the clients & equipment used to help them take part in the activity I help with. Last month one of the staff changed as well as a new client joining the group & I lost my footing.I really struggled as I had it kind of worked out after 5 months and any change was going to be hard to deal with. This month I can see how that change, whilst different is a positive thing in many ways. Today, the activity I help out with had to be cancelled at the last minute & I was given the choice of staying anyway or leaving with their apologies for not letting me know sooner. I wanted to stay, I love learning what else takes place there. I was asked to take the chair exercise activity with a client. Oh My Goodness, it was a folder with instructions & diagrams, using left & right side. I almost fell off my own chair. I can not do instructions, diagrams, left and right without a pause to think about it, maps etc and that shone through BUT I did do it, yes, badly, but I had help from another member of staff (maybe after she watched my effort & thought she'd really better step in ) It was hard, it was confusing, it was scary and it was very different but I KNOW that I can do better at it if I am given the chance to practice. I really could not do my old job, admin, but I know that I can do my new voluntary post with time & patience from the staff I volunteer for. I know I was getting there (until the goal posts moved today!!) There is no pressure to perform and support if I need it. There is time to learn slowly, time to get to know the people I am working with & what they are capable of too. Obviously, with paid employment you could not expect this special treatment & patience from others as you are paid to do the job you applied for. But it is good, I enjoy it & being involved again makes me happy. I have no idea how I will cope financially when the benefits goal posts change AGAIN but I know what my learning ability is and I think I've proved myself in the meantime. Oh, and I have a tent somewhere

Thank you LinLin. It was the title .My 'Year' Off that put me off but sounds like it would still be well worth a read? It took me two years to realise that I needed to be 'off' at all I will ask at my local library rather than buy it I think. Thank you for highlighting it as worth reading Michelle xx

Thanks Lin-Lin, I haven't heard of this one but might look it up if you think it's more relevant a few years down the line. Is it more about dealing with things that have become a permanent issue rather than the recovery early on? I think there is less information available for long term effects (but maybe I just haven't looked hard enough or in the right places?) Michelle xx

Hi Karen, I'm an 'oldie' but I did buy this book a couple of years ago (David, I ordered it from Amazon). I still haven't read it all. It was easy to follow the experiences of others but I found a lot of the factual statistics a bit too confusing. My brain likes everything to be very simple or I get put off. Now that you have reminded me about it I might take another look sometime. Michelle xx

Hi David, I seem to have said something in my post that has mislead a few of you on here....I'm so sorry, it wasn't intentional I don't manage the heavy work YET!! But never say never, maybe I will again one day? I understand what you are saying about DLA/SSI. I don't live in the best part of town but, interestingly, my house used to be on the outskirts of the town in the countryside.Unfortunately as I was only 22 when I moved in I hated the silence & isolation. Over the last few years there has been intensive building of new housing estates next to me. Ironically, I now crave the silence I hated when I was younger!! The new builds are now the more expensive part of town & the noise disturbance, litter, minor crime & vandalism has risen with the new builds No massive point to this post other than that if I was still working I would move in a flash so even 'better' areas have their problem families. Hopefully you will find what works for you in your own situation. Keep smiling Michelle xx

Hi Rachel, I think the answer may depend on the consultant you ask. My auntie and myself have both had SAH but the surgeon who operated on me said they wouldn't screen my children unless there were 2 first degree relatives affected by SAH. However, my sister was offered screening (in a different part of the UK) and my older son has also been told he can be screened but has chosen not to for now. I think the issue is that sometimes they can find something that they may not be able to treat or that is too risky to treat & obviously that would be a difficult situation to face. I'm pleased to see there is a study being done on this & am going to have a peep at the link above. Michelle x

Oh my goodness Sarah Lou - I have no tips on the garden apart from veggies in pots, My Dad & ex do the heavy stuff like cutting the grass & hedges. I think I misled you - sorry xx My final days at work were also 3 full time days per week. They went from full time to 6 hours a day with breaks in between i.e Tues, Wed & Fri. Then, with a fab boss,amazingly supportive work mates & 3 days of 6 hours with an hour off to swim at lunch time included in the 6 'working hours'.....sometimes this will be the answer for people post SAH, sometimes it won't. Knowing when to give in, accept it & the financial hardship it brings is the only answer to get a balance. Never an easy choice for anyone but it is ok for me, for now. I'm happy with less financially, socially etc and benefit from having more time to give my son. Not every day as some days are still tired, grumpy & unreasonable on my behalf but so much less so than when I tried to be single wonder mum, house keeper, garden queen, carer & sole earner after SAH...... We have less but are emotionally happier, I can't put a price on that. Even my pride in myself has changed as the social 'normal' towards people claiming benefits has changed. There are people who have never worked & never faced such adversity, the only difference is I am proud of what I did before & what I try to do now....and what I hope to achieve in the future, even if it is 'only' to have been a great mum to a child with an equally life changing brain condition. I'm happy with that, I've done well & had a few comments over the last week about being able to go abroad with my son this year when I don't 'work'. I don't use his DLA for daily living, it's paid to help make life easier for him & give him some happy & normal times that his peers take for granted each & every day - like having friends to call on & hang out with. He doesn't have that so this will be his happy,normal time and I refuse to feel ashamed of being entitled to that particular benefit. I accept that when he grows up & leaves home life will be even harder for me financially, if I could change things and work, I'd be doing that already I know it sounds harsh but sometimes the choice is money or quality of life. We all have to choose what works for us individually. Michelle xx

Fantastic news Daff I know the feeling of having your freedom given back to you so, so well. Mine was 8 months ago after a 16 month episode. I cried buckets with relief, then cried again at the thought of getting behind the wheel - I was so scared!! My first trip was to the beach (where else? I had missed it more than I can say). I was shaking with nerves, sure I couldn't do it any more. My confidence was shattered by being forced off the road in the first place.... Sensible choice to go for a short trip first. You will quickly build up from that once you see that you can still do it. Sometimes I even overtake tractors now if there's a long, clear road ahead Enjoy the drive this evening! Michelle xx

I have to agree with Dawn that pacing yourself while working is incredibly hard. You don't get to rest when you need to and you know you are heading for a crash if you don't. Workwise, I am not the best person to offer advice as it never got to a stage where I could pace myself as needed to have any sort of work/life balance (even after 2 years back at work - it just didn't work out for me). Others who are now back at work will have better advice to offer in that situation. I did feel some sadness but mostly huge relief when I was medically retired. I thought I could rest now & it would all be ok. Unfortunately, for me personally, it is still neither easy or OK but using the methods I mentioned earlier make it better for me as someone who is at home full time (albeit with many other responsibilities attached). I hope I'm not going too far off topic here, but in response to Mary & David and the gardening theme, I am also trying to 'pace' myself in this area too. This year I am using pots for many of my veggies. I have bought tattie sacks so I don't have to dig for potatoes when they are ready & my carrots will be in pots too. Last year I almost wiped myself out permanently digging up potatoes but was pleased with my haul, then my dad dug my veggie patch over & turned up 3 more bags full of them It's another pacing method that I hope will help me keep going with growing my own veg Michelle xx

Rachel, sometimes there just aren't any words I can think of to help others. I am so sorry you are going through this and can only say, please try to find comfort in that your mum didn't suffer any pain when this happened, it was clearly very quick. I understand how awful that must be for those of you left behind, but for your mum, that was a blessing. The pain & sickness when an SAH strikes is incredibly horrible & it's a good thing that she was spared that as her outcome was not good due to the severity of her bleed. I know you will wish that she had been given the chance of surgery and it would absolutely have been done if there had been any chance at all for your mum. She has done an amazing thing by donating her organs to save other lives & make them better. Small comfort for you in your sadness right now but hopefully one day you will take comfort from that too. As has already been said, there really is no rhyme or reason between how some people survive & others don't. It isn't fair & you have every right to feel angry & confused by this. Try to be there for each other through this absolutely horrific time, I'm sure you mum would have wanted you all to support each other & share all your happy & funny memories of her together. Michelle xxx

Hi Wem, I can really relate to what you said. I sometimes have times when I feel like I'm better!! As it's been nearly 5 years, I think it's a reasonable expectation? I can do so much, go for days (sometimes even a couple of weeks) when I haven't needed to nap in the afternoon - and I think 'YAY! I think I've finally recovered'. Then I get smacked over the head with pain & fatigue for several days It makes me feel really depressed & hopeless with disappointment when this happens. I'm starting to get better at dealing with it. Yes, it's always going to be disappointing to think your on a roll, then be hit hard hard with a reminder that you are not as great as you thought you were but now I try to keep in mind that the crash will pass & other good days will come along again soon. As for pacing yourself......sigh.....I try really hard to do that. On good days I still try to have a rest even if it's not a nap. I also try to keep my afternoons free as that is my hardest part of the day. If I'm meeting friends or going to the beach etc I always do this in the morning. The problem starts when I have appointments in the afternoon or someone phones or turns up. This messes up my rest time & can affect me for days afterwards. You'll find your own best way to pace yourself over time. We can't always control outside influences on this but having a pacing plan that you can stick to most days is a good starting point. Hope you are feeling a little better again today. Michelle xx

Hi Bev, I do know of one other member who has the same deja vu feelings. Maybe she will see this and chip in. I also believe it is a type of seizure? Good luck with your angio & surgery. It'll be good to have them both over & done with, I'm sure. Michelle x

Hi Win, No, I had nothing sorted before SAH. I was 38, had years ahead of me & those thoughts weren't even a consideration Now, I think what will be, will be & my boys know my wishes are to have my ashes dropped in the dunes at my 2 favourite beaches. Not in the water as I feel panicky just watching people put their heads under water in adverts on tv - I have to be in the dunes, watching the sea when I'm gone My only wish is to be here for the younger one until he's ready to fly the nest. After that I'm happy to take what happens next. I had headaches that I thought were from being dehydrated in the weeks before SAH as it was a hot summer that year but no other warning signs.... I use that experience to make me clear out clothes, make up, bath products etc. I look at clothes & underwear as if I'd want someone to be rooting through it if I wasn't here to stop them And having read your post, I really need to go through it all again - just in case! Michelle xx

Dawn, I wonder if HR would be so keen to publish your story if you copied & posted some of your posts on the back to work thread in the early days of your return to work? Yes, they have done great things since and you have achieved things you thought you might not be able to, very much to your credit but do they really want the 'whole story' or just, as you say, the version that makes the whole company look great? I have found that people speak more politely, with understanding & with compassion when they know rather than slowly. And occasionally, like Sami has said, I get the look of awe at how well I have recovered. Both are nice to have & hear Michelle xx

Hi Matt, This has really struck a chord with me. I have always had a short fuse but only when others deserved my wrath! Since SAH I do blow up over stupid little things and have the foulest mouth ever when I get started. I am always ashamed of myself afterwards but when the button is pushed, I seem to have little control over what I say. I think it would be really helpful to explain to your partner & your children that you know your reaction is not always good, that you will try to contain it but more importantly that you do not mean some of the things you say & do & that you know they do not deserve it. Momentum/Headway are great charities that can supply information booklets to family and some specifically aimed at children to help them understand why you may be different. Also, you are in the very early stages of recovering and things usually do improve over time. Keep talking to people, maybe tell them what you have written here to help them understand that you know you are not quite 'right' yet but that you are looking for ways to make it all better, for yourself & your family. When people understand why you are behaving out of character and realise you feel bad about it, it can help them to deal with it too. Michelle

Hmmmm....Daff, it's taken me a while to think through a reply. I am a few years on and usually only mix with people who don't know about the SAH in very small doses so I hardly ever feel the need to explain any more. I don't usually mention my headaches or balance or confusion to anyone unless I have a really bad day, in which case I will let someone know as I live alone with my son. It makes me feel better for his welfare if someone is aware that I'm worried about feeling unwell that day. I'm lucky that I no longer have to explain a bad day to close family, they can see it for themselves & understand that some days I do not get dressed or go out because I just don't have the energy or I took strong pain killers - although I did have to gently remind my dad this week before we went on a shopping trip that I can't do several shops over several long hours. My dad is a bit old school, hard core about illness, but he 'got it' and the gentle reminder made him change his list of where we had to go in one day without any annoying comments on his part. I did, however, explain the situation to the people I work with when I started voluntary work. The manager left it up to me to decide if I wanted them to know. Very occasionally I find explaining it easier on my morale than knowing people will think I'm really thick if I don't explain it. I actually feel more annoyed now if I have to explain things to strangers. For example, booking my holiday this week, I had to fill out a form about why I need assisstance at the airports. I hate this because I try so hard to be like I used to be. During the conversation with the staff I made a classic 'new brain' stupid error when I thought that all the people on the flight would be staying at the same hotel In these circumstances it's just easier to tell people that I have a brain injury. It did have my parents, son & both members of staff laughing quite a bit!! I like it now when I'm told I look well, it' a compliment. However, if an ATOS doctor told me the same I would instantly be terrified that they don't believe I am not well It's such a difficult thing to explain to anyone who hasn't been through it but try not to take it as a belittlement of how you are feeling, maybe you really do look well at the time it is said. That's a great thing, rocking the looking good thing when you feel like we do inside Michelle xx

Hi Phillip, You are doing incredibly well to be back working 3 days a week so quickly after SAH. My speech is also a problem when I'm tired. It still gets muddled now when I'm tired but nothing like in the early months when, as you say, I was slurring or using the wrong words or even just making up new ones!! It's something that will improve as you continue to get better. The tiredness should improve too as time goes on. You are doing amazingly well, just remember to rest as much as you can when the tiredness hits. Michelle

Hi Tulip, It's so hard to know what to say to someone in this nightmare situation. I'm sorry you & your mum are having to go through this. My only suggestion would be try not to drive yourself mad with worry about how your dad will manage with rehab or how he'll cope at home. If you can try to just focus on the immediate - your dad being well enough to come off the ventilator. The rest can follow later. It's often easier to deal with each step at a time rather than let your mind think too far ahead, that can become overwhelming. I hope there is improvement soon & you and your mum are able to keep each others spirits up while you are waiting. Best wishes to you all. Michelle x

Thanks everyone for the advice/shared experiences Knowing that the common opinion is that Ibuprofen raises blood pressure is enough for me to decide that I will not be taking it, regardless of what any of the many doctors tell me from now on. My BP is already high but controlled by medication although 'spikes' still happen with stress & upset so I will not add anything avoidable in to that. I was just hoping to take something else less debilitating for the pain when paracetamol doesn't work as the prescribed medications I take can't be taken with paracetamol & are also quite debilitating for several hours after I take them. They are also co?di? something dol? based. There are 2, I get confused with them! I know both can cause rebound headaches so I try not to take them but this leaves many days of trying to deal with the pain to limit any rebound pain that the medication causes. Sure there will be an answer at the next appointment as to something I can take to prevent the pain rather than try to put up with it or give in every few days. I appreciate that no-one is qualified to recommend any medications but it was good to hear why a medication may not be prescribed - that was very helpful & made sense to what I already know. Thanks for all the replies. Michelle x

Thank you Sami, I take two medications for high blood pressure so your post makes sense as to why I was told I shouldn't take Ibuprofen if it increases blood pressure. Michelle

Hi Wade, There is some incredibly helpful, non judgemental advice on BTG from 'Teechur' & 'Oceanside Gal' who also has PM/NA SAH & have returned in full/part to their original exercise routines. Give it time for the bleed you can see on the tests to be reabsorbed & you can go back to what you know For now, if it causes pain & pro-longed fatigue, you should listen to what your body is telling you. It won't be forever, you will build up your stamina as & when you are able to. Good luck & please let us all know how it goes for you Michelle