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sallym25

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Everything posted by sallym25

  1. Gary, I just looked back and, yes, there are people who have claimed successfully for this. Hope it goes smoothly for you too. Sally xx
  2. Hello Gary, I do remember someone posting about this in the past. Unfortunately, I can't remember how it was going for them at the time. I will do a search and if I can find it, will let you know. Sally xx
  3. Hi Donna, Yes it definitely varies. I only had one follow up chat with the neuro psychologist at 3 months and one with the surgeons assistant at 6 months. I have had regular 6 monthly ones with the opthalmologist as my eyesight has a permanent deficit now. I do think though, that, because I accepted all that without insisting on being seen more often, It has gone against me when trying to claim benefits. I'd much rather not have to be claiming but know I have some cognitive problems which, I now need to have verified for my appeal cases. So now I have had to request appointments. I now think, the more you get to see them the better. Good luck. Sally xx
  4. Jane, "It's not even been a month yet!" . this sentence, in my opinion, is the one that stands out most in your post today. It's far too early for anyone to expect your husband to "come to terms" with whats happened to him. It will take much much longer before he is even able to understand what they have done to his head, then he will have to deal with how he is affected by it. In time, one by one, he will accept all these issues and he will understand what a great support you have been for him. I expect, like me, he will come to the conclusion that he can never repay you for that. Hopefully, his frustrations will pass soon, but, all this is normal and his emotions will be heightened for some time yet. It really brings home the meanings of the age old sayings like "emotional rollercoaster" and other similar Quotations. give him a bit more time. I know it's areal struggle, but, he doesn't realise this yet. He will though. Be sure of that. Take care of yourself too though. Thats really important. How would he get through it without you? Please keep us up to date with his progress. Thinking of you and wishing you the very best. Sally xxx
  5. Hello Anne, Sorry I haven't been in contact with you before, especially as we live within a reasonable distance of each other. After reading Karens reply to you, I tried to look back on your posts to catch up with you. I haven't been able to read them all, but I do hope it wasn't your friend Sandras' partner who passed. That would make me query his treatment over the last while. You said , it's coming up to an anniversary of your SAH. I beleive we all use these dates to 'measure' ourselves. I think this is something we should try to avoid doing and, at present, I've been convincing myself, 'this is it... this is me forever now'. After reading one of your postings and another , which was posted this week, I have been given hope that things will still improve. I am wondering, did you tell your new employer of your SAH before taking your job? If people are exeptionally nice without that knowledge, That would make me teary too. I think we just appreciate things more after experiencing 'near death'. Sorry to put it like that, but I'm often lost for the right words. I know what I want to say, but can't satisfy myself with my choice of phrasing. I'm guessing you didn't tell them, and I applied for a job yesterday without disclosing that info too. The reason for this is , we don't want special treatment, we want to be 'normal' .But, We only upset ourselves, if we feel we're getting it wrong. Don't beat yourself up because of a slight default. You have obviously done amazingly well to get the job and manage for so long without any troubles. Hope I can do that too. Your little cry can only be a good sign that you appreciate how human nature is sometimes a really good thing. Isn't it great to be aware of that? So many people are not. It's not their fault. But, I believe, It's a lesson we all will learn, one way or another. Don't be embarrassed, be proud of what you've achieved already. Take care, Sally xxx
  6. Sorry Sonia and Paul , but I have to disagree with sending it before the finish date. Two months ago thats exactly what I did. It was due for enewal in December. Last month I got a reply informing me My renewal was unsuccessful, AND they had changed their last decision and stopped it with immediate effect on 13th October. Certainly, I didn't have any new issues to report, and I would think that should make a big difference, however if you are still in receipt of it at this moment, I would advise waiting a little longer. Sally xx
  7. Thank you all for your replies. It's really all so confusing. Ern, My DLA is finished now and although I have requested an appeal pack I'm not sure I should qualify for that as I don't need constant supervision any more. I do have real concentration issues and need more time learning to compensate for the blind side, both of which I think would put me at a disadvantage in many employments, and am not sure if DLA is designed for people in that situation. I wonder if it's only meant for those with mobility and safety problems. I tried to claim the working tax credits and the council tax rebates last year and was refused both. I just dont understand how they can expect me to suddenly fall from earning £300pw to struggling by on £65. There has to be something else surely? Johns wages are over £100pw so that's the carers thing out too. Penny, I will get him to have a look into the pension credit thing tomorrow. Thanks for your help. Ihave also been told that there is someone out there who can do some sort of benefits assesment on me. I will be trying to follow that up too. Will let you all know how it goes. Sally x
  8. Hi folks,I'm hoping to get myself more clued up with what benefits are out there. At present the only ones I'm aware of are ESA and DLA. I'm really feeling the pinch at the moment and with christmas on the horizon, it's really getting to me. When I left the hospital in July 09, my sister very kindly dealt with all the financial stuff for both my hubby and I. I was awarded ESA for a short period which they then raised for some reason ( unknown to me at present) to approx £90 per week. Some weeks later I successfully applied for DLA, which they said I would have till Dec 2010. Unfortunately when I attended the ESA medical assesment in April this year, It was decided I no longer qualified for this benefit. I immediately appealed against this decision (still awaiting the outcome of that)and they reinstated the lower rate £65 pending a new decision. I recently received a form to re apply for the DLA, as it was due to end in December. Thinking, the sooner I reapply the less hassle there will be in the changeover dates, I asked the Welfare Rights to fill it for me, which they dutifully did. I then had a letter in return informing me that, not only would I not be getting it next year, but they had changed their last decision and it was stopped immediately. That was a month ago now and I'm really struggling financially now. I feel totally pressurised into applying for proper full time employment but remain unconvinced that I could actually manage it on a regular basis. Does anyone know of any other benefits I might be entitled to, and do you think it would help if I requested some form of cognitive testing. I knnow I have some cognitive faults but find them so hard to explain to these medical people. I'm always left feeling like I'm begging for things and I really hate that. Sorry this is so long and drawn out. Sally x
  9. Hi ' flooded the bathroom last week, again. Am just realising that things are "different" now, but "different" doesn't always mean worse! Time can make us understand that sometimes change is for the better. sally x
  10. Hello James, Welcome to the site. It's a very good forum. Someone can always help. I had my SAH 16 months ago. I do have the strange fuzzy head feeling all the time, and never sleep operation side down. I havent had the cold water feeling though and as Jess suggested, I too could only recommend a visit to the doctor. Hope he can see you soon in order to give you peace of mind. Sally x
  11. Thanks Kath, I hope to do it regular now and will have the 140 figure stuck in my brain now. sally xx
  12. Sorry guys, mrs slow coach here. Just looked at that link Keith. It's so much esier now. And my reading was 'ideal'. x
  13. Ok, Thanks Gary. Still confusing to me though! Will ask my doc to give me some ranges for upper and lower ones to check for. x
  14. Hi Jo, I'm glad you brought this thread to my attention today, as I hadn't noticed it before. I have developed pins and needles in my left hand ( little finger and ring finger only). Like Paris' partner, It started around six months from SAH time. It was sporadic at first but over time, has become constant. I have now seen my dr who has referred me for a Conductive Nerve Test. I hope this will show some sort of nerve blockage in order to rule out any head related issues. Am keeping my fingers crossed. Thanks again. Sally x PS. I hope Paris can call back in and update us on how her partner got on.
  15. Hi Jo, The last couple of years must've been so hard for you to deal with. Hopefully now you've found us here you will be calling in more often and I'm sure it will help you to have people to chat to about it all. It has definately helped me realise I'm not the only one dealing with such hard times. I'm quite amazed to discover so many people have gone through it, and how many more, will still have to!. The human race seems to be a bit ignorant unless it is happening to us personally. Most of us seem to have had no idea what an SAH even was till it "slapped us in the face". I look forward to hearing all about you. Sally xx
  16. Hello, I have a blood pressure monitor at home. I have just tried it out and it reads 114 over 71. I have tried to read the manual which came with it but have not managed to work out how to tell if it's normal or not. Why are there 2 lots of numbers rather than just the one? Does anyone know what these two numbers are relating to? If it were to read one really high niumber and one very low how would I know which is good. eg. 400 over 25 or the complete opposite of 85 over 200. Anyone cllued up on this? Sally xx
  17. Hi Julie, Welcome to the site. Have had a quick look on your update page. How great that you are able to read back on it . I'm sure it must really help you to realise how far you've come with your recovery. I will be read through it gradually in order to catch up with how you are now. Hope you will call in again and I look forward to getting to know you better. Best wishes Sally x
  18. Hi Karen, I'm not aware of anyone in my family suffering from one. I think I must be just the blacksheep.
  19. Hi Angela, Great news for you and Mark. Nice romantic night out in order I think. Hope he is feeling up to it. Sally xx
  20. Hi Tracy, Hang on in there. It will get better. (()) xxxx
  21. Hi Stuart, Welcome to the site. I'm regularly confused by the many different reasons for members haemorrhages. Will need to look yours up now too. I'm sure the doctors will have explained it all to you. I hope your appoointment goes well next Monday and you feel positive about the outcome. I'm sure you will be worrying until it's all over, try to remember.. these guys know their stuff. We BTGers are living proof of that. You're so very lucky to have come through all this so far and feel as well as you do. Hopefully you will be exactly the same post op too and the ppeace of mind from knowing you have lowered the risk of major incidents in the future will help with your recovery lots. I hope you will come ask about anything that bothers you as someone always comes back with reassurance. (best site in the world). Looking forward to hearing more from you. Best wishes Sally xx
  22. I worried over that one too back in june. Had no problem. Have a brill time. Sally xx
  23. Hello Grace, Welcome to the site. I'm sure you will be glad you joined. Everyone is very helpful and any questions you have will almost certainly relate to someone who will offer support. How awful for you to have had to have two clipping ops. I can't imagine how awful that must have been for you. I was depressed enough after only one. You do sound like you're coping well with it too. Well done for that. Hope you will continue to be so positive as your recovery progresses. It's still very early days for you. Take care, rest plenty and look after yourself. I hope we will hear more from you again soon. Sally xx
  24. Hello Kath, Welcome to the site. Oh I do hope you wont be bombarded by lots of questions from us. It will be nice to hear from someone who has seen a range of patients and their different outcomes after haemorrhages. It's a real shame you girls don't often get to see the end results of all your patients. You all do a totally invaluable job for the likes of myself. I am told that I personally was an absolute horror for the staff to cope with during the aftermath of my craniotomy. I can never make up for my bad behaviour. I do hope you are aware of how sorry we feel for these things in the following months and years. without people like you, a lot of us would not be here today. Thank you for all you do. Sally xxx
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