donnamarie Posted March 1, 2011 Share Posted March 1, 2011 Has anyone here recovered 100% if not what problems do you deal with daily?? I feel that everyone i no thinks im 100% because i look ok but i no im not they just think that if you give them antidepressent all willbe better. ps just been nosey has i hadmy medical form completed and says i have no problems but this is from a doctor i have never met:shock: Quote Link to comment Share on other sites More sharing options...
Gill C Posted March 1, 2011 Share Posted March 1, 2011 I would say I am about 85% recovered, it's my eye &my fatigue/headaches that are the main problem.personally i don't think it's possible to be 100% recovered from any major trauma to the brain but thats me! I had my medical & aslo scored 0 on it although when I filled my ESA form in with the help of the CAB I scored 15 points by about half way through. Having talked a bout depression at Headway today we came to the conclusion that depression needs therapy to get to the root cause of the problem but as the NHS si so strapped for cash it's just cheaper & easier to prescribe anti d's. They do work but they aren't the answer to every ones depression in my opinion. Quote Link to comment Share on other sites More sharing options...
garyolly Posted March 1, 2011 Share Posted March 1, 2011 I don't think that anyone will recover 100%. My last appointment was with a Dr that i'd never met. He gave me a total clean bill of health, yet i'd already got another appointment for an angio because i've been having problems. I think that our only hope is to achieve a new "normality" and just go with what weve got. Quote Link to comment Share on other sites More sharing options...
donnamarie Posted March 1, 2011 Author Share Posted March 1, 2011 I personally dont think anyone can recover 100% either. the form the doctor filled in was 6 pages long all about me and my SAH if i had any problem etc etc im not really a swearer but if i typed what i was thinging about them there would be alot of blanks long story short the form say there nothing wrong with me (i wish) im 27 and would love to be out partying etc working so i have money and enjoying life :devil::devil::devil::devil::devil::devil::mad2::mad2: Quote Link to comment Share on other sites More sharing options...
Mary Leyshon Posted March 1, 2011 Share Posted March 1, 2011 Has anyone here recovered 100%if not what problems do you deal with daily?? I feel that everyone i no thinks im 100% because i look ok but i no im not they just think that if you give them antidepressent all willbe better. ps just been nosey has i hadmy medical form completed and says i have no problems but this is from a doctor i have never met:shock: I had a SAH in 1990 (clipped) and a third nerve palsy/aneurysm clipped in 1997 - still haven't recovered - I look fine - it's emotionally I suffer - depression and anxiety and mood swings. Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 1, 2011 Share Posted March 1, 2011 It's really tough to have an invisible injury isn't it??!!!! I want to put a big bandage around my head sometimes! I know people mean well when they say 'you look great!' and some days I agree with them. But most of the time when I catch glimpses in the mirror I see a sad, sick, tired, pale girl. Donna, lots of members say we never go back to who we were. Because we've had a life changing event. I think some of my sadness is grieving for the person I was. At some point I have to figure out who I am now. That's hard to do when we are tired all the time! Sandi K. Quote Link to comment Share on other sites More sharing options...
maggie Posted March 1, 2011 Share Posted March 1, 2011 I don't think we can ever fully recover, but I honestly believe we can be as good as if not better. Just different! It takes courage to face up to the changes in us after what we have been through. I was in denial for a long time after my SAH but that in itself was a kind of protection until I was ready to accept the new me and work with it! Quote Link to comment Share on other sites More sharing options...
Sandi K Posted March 1, 2011 Share Posted March 1, 2011 Nicely put Maggie. I like it! Quote Link to comment Share on other sites More sharing options...
winter Posted March 1, 2011 Share Posted March 1, 2011 I'm now 13 mo. post SAH. I have days where I do feel 100% - then I am reminded by problems with words, phrasing, headaches and fatigue, emotions, etc... I'm just not like I used to be. I guess this is me now. Frustrating as it it, I have to keep going. Sometimes I don't want to! Having to repeatedly explain to others why I''m like this is getting old. Even my daughter, who has been so patient and loving, gets annoyed when I' not getting something or having trouble with words. While I am still on meds for depression and anxiety (and they have been very helpful), I still have issues in these areas. Had a great weekend filled with lots of fun and activity. I felt 100% NORMAL. Even posted (bragged ) about no after affects. Shoot, thought I got away with it - today I am extemely tired and having headaches, teary and just don't feel well! Seems to catch up with me a few days later.... At least I did have a wonderful time with friends and family! I do know I am able to do so much more now than even 4 months ago. So, realistically - I've made a lot of progress. Must come to terms with the facts that this may be as good as it gets. If it gets even better with more time, I'll take it Hang in there sweetie. Sending big hugs(((()))) Carolyn Quote Link to comment Share on other sites More sharing options...
myratas Posted March 1, 2011 Share Posted March 1, 2011 I don't think that we can be 100% better, having a SAH is quite traumatic. When I had my SAH in 2008 I was left with many problems, ie balance, nausea and a weak left leg, I just had to get on with it but I knew I can never be the same person, before the SAH, I was fairly active in everything, after the SAH I remember how people use to see me when I was outside and felt sorry for me because after 10 minutes or so I would be extremely tired. I hardly had time to get over the first SAH then my second surgery last year really bought me down both physically and mentally, I still suffer from left side weakness on my leg and also my arm now, before the second operation I could at least walk but now I have to use a wheelchair if I am to go for longer periods outside. I have to agree with Maggie, it does take a lot of courage to accept the changes, I know I had to twice over, I keep giving myself talks about staying positive but I have to be honest, it's not very easy, I don't like my new life at the moment, I am grateful to be here but the quality of life for me has changed drastically. Sorry to be honest about it, but that's how it is in my life but on the other hand it may not be for some others, I say embrace the new you and come to terms with it as I am dearly trying to do so with mine. We are all survivors and unique. Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted March 1, 2011 Share Posted March 1, 2011 The short answer to your question is that I have not recovered 100%. These are my daily challenges:- Physical I used to be a marathon runner and train with an ex marine in the gym. I now jog at a pace that walkers overtake me(!) My ‘weight training’ includes a home DVD and I use two baked bean tins as dumbbells! (Thank god I have a sense of humour.) I suffer with insomnia, which can be chronic. Blood pressure can be high. Emotional/ Mental My personality has changed, making it difficult for me to retain friendships with those who knew me before my SAH. I don’t like busy, loud environments and I need to be accompanied if I do visit such places. My parents have to organise all appointments on my behalf because I get into a muddle and/or become stressed when trying to plan things. The slightest change to my routine can throw me into a panic. I need to know in advance how the week ahead is going to pan out and I don’t cope well if plans change. I don’t like spontaneous arrangements. I have a poor memory and carry a diary with me always. Contributing to social groups is difficult because I can’t guarantee that I am going to remember what I am talking about and I can ‘digress.’ This has affected my confidence. Psychological The changes to my physical health and emotional/ mental health have been difficult to cope with. I am seeing a Neuro Psychologist to help me deal with events. People can’t see these problems, but I know they exist because I feel them. I no longer tell people that I am recovering from a SAH. This implies to people that I will somehow get better some day and they have a false expectation of my abilities. I now tell people that I have a permanent brain injury. I feel that this reinforces to people that they need to be mindful of what I can or cannot do and that it is always going to be this way. I am slowly becoming proud of my brain injury. Whilst it makes life very difficult, on occasions, I look upon how I am adapting and coping and see it as an achievement. It is important that we are assertive about our brain injuries, because people will force their own social patterns upon us otherwise. It is tiring to continuously have to tell some people what you can or can’t do; but the alternative is to go along with what others think we can do, and that is no longer an option for me. Regarding the doctor that assessed you as having ‘no problems,’ was s/he anything to do with benefits? Lynne Quote Link to comment Share on other sites More sharing options...
donnamarie Posted March 1, 2011 Author Share Posted March 1, 2011 Sort of it is to do with income protection/life cover it was a doctor from my surgery that filled in it but i have an appointment in the morning so going to speak to my doctor im just trying to get helpwith bills etc Regarding the doctor that assessed you as having ‘no problems,’ was s/he anything to do with benefits? Lynne I have accepted that i wont be 100% again which means giving up my job as i will never beable to return(havent told them yet) and find something new that im able to do ???? nearly 10months since SAH and still having real bad problem with headaches (since start) anyone no any mircale jobs??:confused: donna ps lyn i could of typed out the problem u have as my own but i struggle to say what im thinking or even to write it down when my mind wants to go blank i can do nothing about .... Quote Link to comment Share on other sites More sharing options...
Nessie Posted March 1, 2011 Share Posted March 1, 2011 Lynne, you wrote down almost my daily things! especially the planning part. not because I can't plan, but the stress and panic that overtake me are gigantic. My sister helps me with that. or my husband. but him being a scot, most things involving dutch healthcare are way over his head. Aside from the things Lynne mentioned my problems ( 9 months post SAH) are very much on the sensory input side. smells, noice, sight, tastes, and light. If it were up to me the world would be dark and quiet. There is progression there.. or so i'd like to think. But this week is a schoolholiday.. the neighbours kids are playing outside ( about 6 of them) and I have to grond my teeth to not be the neighbour that shouts at them.. we are planning to move to a village in stead of this busy city suburbia. Quote Link to comment Share on other sites More sharing options...
Nessie Posted March 1, 2011 Share Posted March 1, 2011 also Lynne, the fact you tell people you have a brain injury is something I will think about. It makes a lot of sense! Quote Link to comment Share on other sites More sharing options...
Skippy Posted March 1, 2011 Share Posted March 1, 2011 Evening all There are days when I think I have recovered 100% but other days not. I do know however that physically yes I have recovered 100% but mentall/emotionally no but I do know that it's a bout 99.9999% there. From the very start I've been determined that my SAH would not affect my life any more than it really had to and I feel that I've achieved that - I refuse to believe that I cannot recover 100% from this and (according to my husband:roll:) it's this stubborness that has helped me recover so well - I was back at work 3 weeks after my SAH and have been working full time for at least two or three years now - my SAH was in 2006. I only suffer occasionally from headaches - but I used to get them a lot more before my SAH Quote Link to comment Share on other sites More sharing options...
JayKay Posted March 2, 2011 Share Posted March 2, 2011 Yup - what the others have said!! Lynne has put it very eloquently, and winter is at about the same time in her recovery as me and I feel the same as her. I think Lynne's completely correct: telling people you're "recovering" from an SAH makes them think you're ok, or will be. I don't know if I ever will be. I'm certainly not able to go back to my old job. Some days I do think I'm in denial - I think I'm 100% fine, nothing wrong with me, boy was I lucky to get through THAT ok.... and then I come crashing down. AGAIN. It happens all the time, even though I have had neuro-psych and OT help with pacing. Yesterday I had to see the GP and I was a bit tearful because the boyfriend and I had had a bit of a do the night before. The boyf reckons I've changed, and I reckon I haven't: it sometimes leads to tension, which we've never had in our 12 years together Anyway, I was at the GPs and I started crying, and he said "do you think you might be a bit depressed?". Well, I'm on Prozac, so I would expect not to be, don't you think? He is very supportive but still, he just asked if I was pacing myself. Then I went to get my medicine, and I got so muddled up with the prescriptions that I ended up whipping out my Headway "I'm a survivor of a brain injury card" and the pharmacist was very gentle with me That's the second time I've used it, and it's been great. (I didn't join Headway, but called them and they sent me two cards for free). Anyway, it's brain injury awareness week in the UK from 9th to 15th May and there is an event called Hats for Headway that I want to arrange at my local community centre. You can download a poster about it on that page. Just thought I'd pass it on Quote Link to comment Share on other sites More sharing options...
Nessie Posted March 2, 2011 Share Posted March 2, 2011 Just out of curiosity jen, what kind of card is it and what do you use it for? Quote Link to comment Share on other sites More sharing options...
Louise Posted March 2, 2011 Share Posted March 2, 2011 I suffered mine in 1999 then Meningitis in Feb 2000 have I recovered 100% no, but I knew from the start that I was never going too. But its ok because in those years I have accepted who I am. Jen, I have one of those cards I find then very useful when people see someone thats ok... Thanks for the info for 9-15May will have a look.... Quote Link to comment Share on other sites More sharing options...
winter Posted March 2, 2011 Share Posted March 2, 2011 Morning folks. What everyone has said certainly hits home with me as well. Since I was laid off at December's end, I have been struggling with many things - and not getting anywhere. I do try to stay positive, but as Myra said, it's not always easy to do. Don't remember getting in line for the roller coaster again Think I'm still in a bit of denial... I have, on several different occasions, told people I have brain damage - only to get the sad puppy dog eyes from them and then they stopped talking to me at all! Maybe I'll get someof those T-shirts that say, "I have brain damage, what's your excuse?" Maybe with more time, I'll get to the full acceptance stage. I'm working on it. I have to say, I do admire all of you! So thankful for BTG and everyone here supporting one another. Carolyn Quote Link to comment Share on other sites More sharing options...
JayKay Posted March 2, 2011 Share Posted March 2, 2011 Just out of curiosity jen, what kind of card is it and what do you use it for? I just blogged about it, with a picture - if you are interested! It's just useful to have on you in case you get flustered, or can't speak or whatever.. See here Quote Link to comment Share on other sites More sharing options...
JayKay Posted March 2, 2011 Share Posted March 2, 2011 (edited) Morning folks. What everyone has said certainly hits home with me as well. Since I was laid off at December's end, I have been struggling with many things - and not getting anywhere. I do try to stay positive, but as Myra said, it's not always easy to do. Don't remember getting in line for the roller coaster again Think I'm still in a bit of denial... I have, on several different occasions, told people I have brain damage - only to get the sad puppy dog eyes from them and then they stopped talking to me at all! Maybe I'll get someof those T-shirts that say, "I have brain damage, what's your excuse?" Maybe with more time, I'll get to the full acceptance stage. I'm working on it. I have to say, I do admire all of you! So thankful for BTG and everyone here supporting one another. Carolyn I've said "I'm brain damaged" in front of someone at the hospital I know - can't remember if it was a nurse or doctor, but they gently corrected me: "I have a brain injury". It sounds better!! Edited March 2, 2011 by JayKay typo Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted March 2, 2011 Share Posted March 2, 2011 I’ve ordered one of those cards. It will be my ‘get out of jail free’ card for every future social faux pas. “Sorry I punched you in the face, but I have a brain injury…..” (JOKE!!) Lynne Quote Link to comment Share on other sites More sharing options...
KelBel Posted March 2, 2011 Share Posted March 2, 2011 I’ve ordered one of those cards. It will be my ‘get out of jail free’ card for every future social faux pas.“Sorry I punched you in the face, but I have a brain injury…..” (JOKE!!) Lynne ooh you are terrible Lynne but you are right!! :lol: I have ordered mine too, as a stand-by should I need it. I do have the odd occasion where it could come in useful... Well done for reminding us again Jen - I have been meaning to order one for the past year now, since it was mentioned before kel x Quote Link to comment Share on other sites More sharing options...
lawla Posted March 2, 2011 Share Posted March 2, 2011 hi, i'm 16 months post op and still strugle with head pain and anxiety and yes mood swings. I become a very emotional person.I think i'm 80% recovered but then yes we do crash. Quote Link to comment Share on other sites More sharing options...
Nessie Posted March 2, 2011 Share Posted March 2, 2011 The card looks very handy! Could have used one last month when they gave me the wrong pills at the pharmacy and I completely broke down... I wonder if they would send one to me in NL. (never seen or heard of an equivalent in dutch and not creative enough to make one myself) Quote Link to comment Share on other sites More sharing options...
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