DawnS

Sorry, I wasn't intending to add to the list of worries. It's just that the MIND course is brilliant for any anxiety not just panic attacks, sorry for not making myself clear x

Hiya Kerry, do you have a MIND in your area? The reason I ask is that years and years ago, I suffered with panic-attacks. I attended an 'anxiety management' course at MIND. It's basically cognitive behavioural therapy where you are encouraged to recognise and challenge your own thought process. You can self-refer I think. It actually solved my panic-attack problem. I still get a bit anxious now and then especially since I had sah but I can control it much better now as I recognise when it's getting excessive and can control it, I haven't had an actual panic attack in 8 years. Dawn x

I have some goods news!!! I received a letter at the weekend regarding my payments towards Headway. Although I have declared Andy's wages, Social Services have only taken my own income into account. My own income is ESA only and so I am not expected to contribute towards attending Headway. The letter also states that my services cost £101 per week, I attend Headway for 2 days, so it's little wonder a contribution is an option to be assessed for all.

Hiya Linsey, I don't have any help or advice I am afraid, but i am very sorry you are unwell. Do you have contact with a neurologist? What is your GP's opinion on the changes that are happening to you? This is a brilliant site and you will find lots of support here, perhaps someone more knowledgeable will come along shortly. Dawn x

Hiya David, I've been reading this thread with interest. Isn't it funny how no matter how ill we are, we still go out of our way to make sure we don't upset the most rude, ignorant people in our lives. It must be seriously drummed into us because we are happy to be ill and uncomfortable despite a narrow miss with death so as to not hurt someone elses feelings. How odd. I hope you get this sorted out soon, I know it's not easy to speak out, even more so when it falls on deaf ears. Dawn x

Hi Cath, I had an MRA a few months ago. As the others have said, it's noisy but not painful. They do give you ear muffs, but if you have your own earplugs i would recommend using those in addition. The angiogram was done through my arm as Louise has said, so I didn't have to lie flat for hours afterwards. When you are there, try to find out how you will get your results and when it will be. I didn't see anyone on the day (except the radiologist of course) and it was 5 weeks before I was sent a letter. Hope you get on ok, come back and let us know. Dawn x

Yes, it came as a bit of a nasty shock to me too! The thing is, when I first started this process, I was feeling quite low and very lonely. I have now become used to occupying my own time and am not in need in quite the same way. Of course if the funding appears, I will attend! Karen, thanks very much for fixing the quote!

If my assessment shows that Andy earns enough for me to pay a contribution, this has to be paid directly by me out of my ESA funds, or Andy's wages. If the assessment shows that between us our income is not sufficient, then they will fund me over and above the ESA. I have no idea what I do so wrong when trying to use a quote! Sorry, as this now makes no sense!

Isn't it a shame that the things we all see as huge achievements such as dressing, walking etc are seen as 'proof' that we are all 'fine'? Thank goodness we can come to BTG to share our achievements and still have them recognised as such!

I've been told by several different people that attending Headway costs £55 per person per day. So I guess it's not so surprising that they need me to be funded or that the government would expect me to pay a contribution. I wonder how far they think their ESA pay out actually goes. As usual with the assessment form, the only things counted are rent or mortgage and council tax. Presumeably the people who make up the rulings have never had to pay water rates, electricity, phone, t.v licence or buy food and petrol But if like you say Gill, the sessions are to be about £3 then that's perfectly acceptable, but £15-£20 per session was mentioned to me. When you factor in petrol on top, plus poor Andy having to take holiday from work if I'm not back driving by then....it doesn't quite seem quite worth it somehow. Sorry if i seem like a whinge-bag!

I have a social worker at last! He came to visit me last week regarding attending Headway. He seems like a very nice, slightly nervous chap. I have now had to fill in a form to see if I have to pay a contribution towards attending Headway. i am sure that this is standard fare these days, but i had no idea that joining a support group would be so much hard work. Did anyone else go through all this to get to Headway?

Hiya Donna, i occasionally get so dizzy i have to lie down. I was told this means I've been physically overdoing it. This is a habit of mine, I think I'm in denial about the sah right now and have a tendency to soldier on as if nothing has happened to me. I have almost constant neck/shoulder pain which often keeps me awake, i find a massage helps significantly. As for the monthly issue, I do not have this because of the contraceptive pill I take. There is only one which suits me because combined pills give me furious headaches. I hope you feel better soon. Dawn x

Hiya Tom, i had my 6 month check in Feb and although I had an angiogram, they did it through my arm not my leg and so I didn't have to stay there for hours afterwards. I was allowed straight home. Are you going to see your consultant? I only saw the radiologist and he didn't really speak english, so no real discussion there. It might be worth giving the hospital a call to check what will actually happen, I got all het up about my check and nothing happened...nothing at all. I'm not trying to burst your bubble, I just don't want you to be as disappointed as I was! Hope it goes well, will you pop back later with an update? Dawn x

A 'learned behaviour'? Wow, insulting! Wouldn't it be wonderful if doctors could get their head out of their behinds and listen? I know I didn't go to university for a decade, but that doesn't mean I know nothing about my own illness. My GP doesn't seem to think that my sleep problems are actually an issue and I suppose compared to the sah itself, they are not. But he could at least pretend to care or at least write me out a prescription for some serious sleep meds What are they going to test your blood for? Have they checked Thyroid function etc? What about diabetes? (It's just a thought). I really hope you get somewhere with this, how frustrating for you to go through it all once more. Dawn x

Hiya, I can understand your frustrations when all you want is some answers and you don't get any. I had an aneurysmal sah and was treated by coiling on the NHS. While they did a fantastic job of the emergency issues, there has been nothing since and I have not seen a neurologist since before i left hospital so I can sympathise with having no answers to your questions. I do think you are right about neurologists, they are there to fix the brain and nothing else. This website is fantastic and you will fine lots of inspiration and support here. I hope you get further at your next follow-up. Dawn x

Thanks for the lovely thoughts, you lot really make me smile Well what a day! I've now had my social worker meeting too and as Louise suggested earlier, I reckon a nap is on the cards now! Dawn x

I used to be very good at problem solving but now after sah, my brain just doesn't work that way. I try to apply my brain to the task at hand and it just comes up blank. It's really hard to explain what this is like. Sometimes if I go away and do something else the solution will present itself, but this is rare. I find it really frustrating. I also don't really come up with ideas for things to do because my brain no longer has ideas in that way. There are days when I sit here for hours trying to think of something to occupy my time and then before i know it my partner is back from work and I've achieve nothing. Also, I can no longer 'browse' in shops. I have to have a clear reason for being in a shop and I go in, find the thing I need, buy it and leave. I too look completely fine. Brain fatigue is not like normal tiredness at all and it's not possible to push through it like you can with physical tiredness. As for lists, I often make them and then completely forget doing so. I can take a shopping list out with me and still forget to buy half the stuff on the list. Focussing on any task is something I've had to build up gradually. I couldn't read when I left hospital and my GP told me to try a little each day and that it would eventually come back. Now I can read a book in 2 days like I could before. I couldn't walk any distance when I left hospital but now I can walk for miles. I hadn't realised until very recently that as much as anything this is because I'd been laid up for 3 weeks solid and my muscles had wasted somewhat. It sounds obvious now, but at the time I thought it was because of the bleed and didn't realise I needed to build muscle again. I hope things improve for you both very soon, Dawn x

Well, the dreaded meeting is over and done with. HR and my manager turned up at 08:30 this morning. Andy is doing overtime this morning and is starting work at 10:00 instead of working til midnight so they had to be here early. Andy and I had gone through the report from OH and highlighted all the bits that we didn't agree with. I stated that they must see a huge improvement themselves as it has been about 13 weeks since our last meeting and they agreed. We went through all the bits in the report that I didn't agree with and discussed why I thought it was wrong. HR told me that they have just had a very different meeting to the one they thought they were going to have, so I hope this is a positive thing. They are going to write to my GP for another opinion and at some point I'm to have a new meeting with OH. Maybe I'll sleep tonight?

Thanks for posting that link Momo, how encouraging! My bleed was a grade 4 and it's so good to see that someone with a much worse bleed has come through so well. With my HR meeting looming tomorrow, this has really given me a much-needed boost! Dawn x

I think I have badly misunderstood the reason for Tuesday's meeting, it's not ill-health retirement they want to discuss, it's termination of employment due to capability which I believe is much, much worse. I'm trying to find out stuff about this on the internet, there is a number for ACAS, I think I'll speak to them on Monday. I wish this wasn't going on, I simply can't think of anything else right now. Andy keeps pointing out that until we have the meeting, we don't know for sure exactly what it is that we're worrying about. I know that he's right, but just now I'm like a dog with a bone.

I've not once seen a 'neuro' anything since before I left hospital last Sept. I'll speak to Headway, thanks. I think the problem is that the OH report that has been made was rather negative, it even states that my recovery has been 'slight and slow'. Huh? 8 months ago, I could not walk unaided, I couldn't read and I couldn't remember anything at all. How rude! I will say all of this on Tuesday to HR. It does seem early for them to be doing this, but the OH report states that they cannot see a time in the near future where I might return to work. Er, doh! Of course not, I'm signed off until August, so that's the near future sorted. I hadn't heard of Momentum so I'll look into that too, thanks!

Hi All, I received a letter from HR today, they want to meet with me on tuesday to discuss my OH report and ill-health retirement I have spoken with my GP but she tells me that regardless of her opinion, OH have the final say. Since sah, I can only really hold one thought in my head at a time and OH/retirement is my one thought for now. I'm really struggling to get anything else done because it's all I can think about. I realise of course that I can't physically do anything before tuesday so there is no point in me stressing right this minute. I don't see how this would work, I've only paid into my pension for 3 years. On a more positive note...I have a care manager at last woo hoo! The meeting with him is also Tuesday, so by the end of that day I will feel about dead I should think. Looks like I might get to Headway soon then, it's been 10 weeks since I first called them. Dawn x

Morning All! Kris, that's brilliant news!!! Today is bus-day for me. Once a fortnight I get the bus into town and go to the library. I found out fairly recently that there are two different buses into town, one takes an hour and goes around all the villages (which would be too much for me) and the other only goes to 1 village and takes 25 minutes, much better! i love getting the bus to town as it challenges me in new situations and it gives me a sense of independance while the dvla dither about. The sun is shining too

Hi Carl, I like what you are saying here. I think I would like a badge or something that says 'please don't rush me I have a brain injury'. I really want to accept the new me, but it's just not happening yet. Maybe one day I'll stop striving to be 'me' and realise that I am me actually. As for supermarkets, they should come with a health warning. And 'child-proof' lids should actually be called 'brain injury proof'. And when did bras get so complicated?

A wee update: I've put several of your suggestions to use, including changing the answering phone message. The lenghty phone calls continued. Then last weekend, Nana called on a bad day. After about 40 minutes or so, she said 'you must be sick of the sound of my voice'. So, I finally grew a pair and said 'no Nana, I love talking to you, but I can't cope with these really long phone calls, 20 minutes would suit me better.' And do you know what? Since then, the longest call I've had was 25 minutes, YAY!!! So thank you everyone for your input and for helping me get the guts to finally say something! Dawn x