Recovery?

[JayKay]

OOh Lynne - I love it!! It's gonna be my get-out-of-jail card for the rest of my life, I feel.... ha ha.

Nessie - I'm sure Headway would send you one. If they don't, get someone here to get one for you. I was trying to find out if there was one in French for my mum to carry because of her aphasia, but I haven't found one yet. I might translate it and make one for her. I have some little self-laminating cards that are credit card sized....

[Sandi K]

I'm only 3 and a half months post PM-NASAH and I already have moments where I feel 100% but those moments can be devastating. I know I should look at them like each time I have them they will get longer and it's a good sign. But instead it's like a peek at my old self and I resent the symptoms when they creep back in. Also, when I'm feeling good I have that awful guilt from not being at work. At least when I'm symptomatic I know why I'm home and I pay attention to my recovery. Am I nuts ?

I'm still believing I will recover. But... Im accepting that I will be different. Its still early days but honestly, I can't see myself ever going back to the same pace as before. I look back in awe at that person. I can't believe how much I could coordinate in one go. No wonder my brain yelled STOP and blew up. I'm wondering if I can return to my old job and just do it differently. I don't know if I'm strong enough for that, people have expectations and it's so easy to try and meet those expectations. We do have to be more assertive but that takes some of our precious energy.

Sandi K.

[Nessie]

But instead it's like a peek at my old self and I resent the symptoms when they creep back in. Also, when I'm feeling good I have that awful guilt from not being at work. At least when I'm symptomatic I know why I'm home and I pay attention to my recovery. Am I nuts ?

Sandi K.

O how I recognise this!!

(also trying out the quote button. see if it works!?)

[goldfish.girl]

Hi Donnamarie,

I found this site almost 2yrs after my SAH and I remember asking the same question. Ialso remember thinking how bad it was for other people and 'knowing' it wouldn't be as hard for me.....

After the first few months I thought 'phew I have been so lucky' (and compared to others I really have been) but it has taken me nearly 3 yrs to understand that being lucky is not the same as being how I was.

Your question is an indication that you are starting to realise that you are not as you were - I think that's part of the early process of acceptance - I hated that word for so long as I had no intention of accepting it and every intention of getting back to how I was before this happened. To my shame - I even believed that people posting on here were playing on it and milking it - I now know that I should probably have been shot for thinking this as they had just reached a point of acceptance that I wasn't ready to acknowledge at that point (denial). You will become better in a different format is my belief. Love, Michelle xx

[goldfish.girl]

I'd also like to add - LYNN I love your replies to this!!!! A 'sorry I punched you in the face card' is much needed - where do I get one:lol:

[Sandi K]

I guess we can all feel lucky for lots of reasons. The first is that we survived at all. My doctor asked me today if I was grieving and yes I am. I'm grieving for my old self, the new self survived and I'm not ready to get to know her yet. After that we can feel lucky for different things, any of us can see something that is 'worse' for someone else. That same thing may not feel worse to us when we have it ourselves. I'm a typical type A overachiever who sees illness as failure and weakness... Boy have I been learning a lot. Being sick is out of my control, not a failure.

My GP says I will recover but it will take 2 years. I've learned from this forum that you can't put time limits on it. Saying '2 years' just means it will take time. And I'm certain I won't be the same person I was when 2 years is past. This is the first time in my working life (15 years old first job) where I've had to rest and not tax my brain. It's giving me time to think about what I was doing. It was all about the job for me. I climbed the ladder of success and was the boss. My ego still wants that, but if I go back to it the terms will have to be different. I need to take care of myself and find that balance that people talk about.

Sandi K.

[winter]

We are all lucky to be alive, but no, it doesn't negate our feelings of inadequacy, depression, anxiety, etc... in the mean time. I also feel badly for feeling badly when I know there are many others who are suffering so much more. Even though I know I shouldn't feel that way! None of us asked to get sick - that was out of our control.

Loved Lynne's "punch you in the face" remark Thank God for a great sense of humor, right??? I'm glad I can laugh at myself most of the time. Usually it's after the fact, but eventually find the humor

I understand about not wanting people to know as it does seem to carry a stigma and I certainly don't want another's sympathy! I do want to feel that I'm understood in certain situations (family, friends, co-workers) though. Maybe the more I say it - I have a brain injury, I'll become more accepting of my new self? Recently I was explaining something to my son and was having trouble getting some of the words out. He asked me what was wrong with me and I said I have some brain damage, son. His reply was, "No you don't!" Guess we have some denial going on there, too!

Ah well... hopefully time will help and acceptance will come sooner than later!

[RB-R]

I'm only 3 and a half months post PM-NASAH and I already have moments where I feel 100% but those moments can be devastating. I know I should look at them like each time I have them they will get longer and it's a good sign. But instead it's like a peek at my old self and I resent the symptoms when they creep back in. Also, when I'm feeling good I have that awful guilt from not being at work. At least when I'm symptomatic I know why I'm home and I pay attention to my recovery. Am I nuts ?

I'm still believing I will recover. But... Im accepting that I will be different. Its still early days but honestly, I can't see myself ever going back to the same pace as before. I look back in awe at that person. I can't believe how much I could coordinate in one go. No wonder my brain yelled STOP and blew up. I'm wondering if I can return to my old job and just do it differently. I don't know if I'm strong enough for that, people have expectations and it's so easy to try and meet those expectations. We do have to be more assertive but that takes some of our precious energy.

Sandi K.

Hiya Sandi, well that is just how i feel and im 8.5months on now. When i have a good day it can upset me remembering how good i can be then im just waiting to feel bad again because i know its coming. I to went through the grieving stage . My couseller said this is all good as we have to grieve that person as we are not the same person anymore even if we make a full recovery.

[anneec]

Hello everyone

Very interesting comments here, recognise myself in a lot of it.

Some people think I am back to 100% as I look the same as pre-SAH, those that know me better know I am not. My twin sister looks at me and says " I think you need a rest " and I think oh yes she's right, how did she know that? Even my boss has changed my hours at his instigation as he had noticed I was working too long to suit me. Correct, but I wonder if perhaps a flag pops out of my head and says shes had enough now.

I am nearly 4 years on and am now 85%?? (guess really ) of how I was. Hard to put a figure on it. Some days I have very good days, others I have what I describe as a "quiet" day to recover from doing too much the day before!

I have ongoing problems with near vision for detailed things ( ironic as I was an Optometrist for 30 years helping folk achieve their best possible vision).

Ongoing giddiness and tiredness which has improved a lot but still catches me out, I find I have adapted so I make allowances for it and work around it .

I have some cognitive problems which I have discovered along the way which make life interesting at times.

I also have no multi-tasking ability now whereas I was very good at it before. I think this is one of the worst aspects for me. In work if people ask me lots of questions at the same time as I am doing a till transaction for example I have to laugh and say I can't mulit-task and occasionally chaps have then made some over-cheeky ( I can cope with cheeky but not over-cheeky if you follow me) remark I do say I used to be able to do it but I have had a brain haemorrhage! That shuts them up and makes them much more amenable to waiting a minute for me to deal with them!

On the positive side I am much more laid-back than I ever was, and suffer few headaches now, where I have had migraines since teens , very badly at times I seem just occasionally to have the visual effects but no headache to follow, good!

I too don't cope with things as well as before. I am hoping to move house shortly, everyone please cross fingers for me, I have had one sale fall through, this one is very good so far, but quite honestly I don't know how I will do it. Haven't said that to anyone in my real life! Sister and loads of friends are all going to help me but still can't imagine it all happening. Will have to go with the flow. Moving nearer to friend and family to a smaller house.

Some of you mentioned medical reports, I was refused a report saying I was permanently affected by the SAH, filled in by the Specialist early on , the trouble is I think no-one really knows how each of us will recover. He said to me at the time it would take 2 years to get to "full" recovery. This meant my mortgage was not paid off by the insurers I had, so I had to take my occupational pension very early to have my lump sum to pay off the mortgage, as I haven't been able to return to my proper job. I found moneywise things were very tricky and even now are only OK. Enough of that but I am sure some others of you are in the same boat. All part of the new me.

I do find reading all your threads etc a big help, sometimes think I shouldn't be looking at the website as I am better, but come back to it and find something relevant. Bit of an essay I am afraid.

New me is a different me but better in some ways and has a simpler, less complicated life which I think in the long run is for the good.

Hope something in this lot is of interest to someone out there

Best wishes Anne

PS Seem to be lots of Annes on the site, something to do with annies?, I'm a non annie-Anne .

[Liz D]

Hi Anne

I can identify with a lot of what you say. I'm 2 years post SAH and whilst still improving, improvement is a slower pace.

People who didn't know me before the SAH are very surprised when I tell them what I've been through. It makes me smile because I wonder what they make of my now little deficits! I'm sooo much more laid back now. I never get that 'Monday morning feeling', every day is just another day to be enjoyed. I can no longer multi task and my famiy are now used to me asking them to wait until I finish what I am doing. Even at work, I finish one task before going on to another. But I am told by colleagues (I'm in a new job post SAH) that I am very organised and can get through work very quickly. I know that prior to the SAH I could work at a furius rate! I walk away from any possible conflict but still can gently stick up for myself.

My husband will now tell me that I'm getting tired, he can see the signs. I also keep telling people that I'm a bit dyslexic now and forget how to spell loads of words. Yet hubby was a bit surprised when he saw a draft of a letter I'd done a few weeks ago and the mistakes I'd made.

I have gone through the grieving process and am now at peace with the 'new me'. I absolutely agree with you when you say "New me is a different me but better in some ways and has a simpler, less complicated life which I think in the long run is for the good."

I worked in a dental practice for 11 years and we had a patient that had a severe stroke. He couldn't walk and lost the power of speech. Through a lot of hard work and support he learned to walk again but even after a lot of therapy still couldn't speak. 6 years after the stroke his speech started to come back, it took about a year for him to be understood clearly but he got there!

[Happydawn]

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.

The problem with this condition is there is nothing visually to see and that what people go on, that you look alright. I think you get better each day and everybodies recovery is different, it depends on how bad your SAH was. These stupid tests they do have nothing to do with your emotional state and at the end of the day its' not like breaking a limb. I was advised to have the happy pills as well and I refused. I didn't get counselling either. Just enjoy every day.

[donnamarie]

just wanted to say a big thank you to everyone who replied donna:-D:-D:-D:biggrin::biggrin::redface:

[JayKay]

No thank YOU Donna for allowing us to talk about this - reading what everyone has said is brilliant. So many of you have described me to a T! I can't multitask any more either and I was an Executive Assistant for 30 years - multitasking was second nature to me. And that's just the start of it....

Anyway, thank you everyone. Big hugs and KEEP POSITIVE!

[Lin-lin]

This has been a very interesting thread.

For my part, I do not feel that I have an option other than to tell people I have a brain injury, although fat lot of good it does me sometimes!

I will share with you an incident which happened to me tonight at a meeting, as an example of how infuriating living with a brain injury can be.

Since January, I have worked very hard to maintain attending the meetings. (It’s to do with politics, so I won’t bore you with the details!)

It has been very difficult for me to try and sustain the extra evening out, but I mange, just.

People at the meetings often expect me to involve myself in local issues, over and above a limit which is comfortable. I always refuse and try to explain my situation.

Tonight, a person at the meeting told me to do something this weekend, instead of asking me. I have noticed that this person has misunderstood my pace before, and so my emotions were in ‘last straw’ territory tonight.

Outwardly, I remained passive and just listened.

Inwardly, I felt a massive panic. I knew that what was expected of me was too much, and additionally, I was trying to process the spontaneous nature of the request. I simply cannot cope with being ‘shocked’ in this way. I need time to ‘come round’ to an idea.

I walked away from the meeting very upset, as is typical when a person feels out of control of events.

When situations like this happen, there can be a tendency to blame ourselves. I have run through a lot of emotions tonight. I have blamed myself for my ‘weakness’ and my ‘inability’ to cope.

I can also develop anger towards others and ‘blame’ them for what I perceive as their unfairness towards me.

My boyfriend has helped me to see the matter clearer. He views it as a miscommunication, with neither me, nor the other party having done anything wrong. The other person at the meeting and I, are simply not understanding one another.

I am confident that I can resolve this and I know that the other person at the meeting genuinely has no comprehension of what my life is like. But it is so exhausting banging the same drum, over and over again.

As for quantifying the percentage of my recovery; I do not look at it mathematically. To give a figure which is below 100% implies that something is deficient and not ‘whole.’

That’s all I can say, is that I try 100%. It is for this reason that I feel upset when people demand more, because I am giving it my all already.

I feel like that game, Buckaroo. Bit by bit, things get placed upon me, but then if the pressure is too much, the slightest thing can make me buck and I throw everything off!

I guess this shows I need to manage people better. I can’t change, but they can, so I guess the onus is on them! Otherwise, I’m going to ‘buck’ off!!

Lynne

[donnamarie]

I feel like that game, Buckaroo. Bit by bit, things get placed upon me, but then if the pressure is too much, the slightest thing can make me buck and I throw everything off!

I guess this shows I need to manage people better. I can’t change, but they can, so I guess the onus is on them! Otherwise, I’m going to ‘buck’ off!!

Lynne

lynne this is how i feel alot of the time i hope you get the matter sorted out ok with the other person at the meeting

take care donna

[Louise]

I've been through all that I find I'm very upfront with people now (case of had too) if they cant understand then its my job to tell them that I cant do something, cant understand something fatuge ect. Sometimes I use the card form Headway but thats only been on one or two occasions.

I have to say this is def something that the old me would not do but now I wll..I have gained determination and stamana...

it took a long time to accept the 'new person Id become' but now I kind of like her, ok so I cant multi task, I dont have lots of things going at the one time but hey we only do that because we have to, now I dont have to...

I dont think we should dwell on the person we were, the things we cant do, but welcome the person we are now....

I guess this shows I need to manage people better. I can’t change, but they can

Guess tho as much as You cant change neither can They!!!!

[Leo]

I've been through all that I find I'm very upfront with people now (case of had too) if they cant understand then its my job to tell them that I cant do something, cant understand something fatuge ect. Sometimes I use the card form Headway but thats only been on one or two occasions.

I have to say this is def something that the old me would not do but now I wll..I have gained determination and stamana...

it took a long time to accept the 'new person Id become' but now I kind of like her, ok so I cant multi task, I dont have lots of things going at the one time but hey we only do that because we have to, now I dont have to...

I dont think we should dwell on the person we were, the things we cant do, but welcome the person we are now....

Guess tho as much as You cant change neither can They!!!!

Hi Louise,

What card from Headway? I think I may need some!

Thanks,

Leonie

[JayKay]

Hi Louise,

What card from Headway? I think I may need some!

Thanks,

Leonie

Leonie - see my blog post here, to get an idea of what it is. I just phoned them and they sent me two cards.

Lynne is so articulate, as always!! This miscommunication you described happens to me and is really getting on my nerves; my partner, who I love dearly and who I know loves me, has been finding it very hard. I know he knows "intellectually" that I've had a huge life changing event, but he does seem to find it hard when I don't react the way I used to or when I forget stuff.... I feel like he doesn't understand me and he feels like I'm not sympathetic to things he's going through. After 12 years it's like we are on different planets and we were SO in tune before. So, yes, it's tough, but I insist on keeping the channels of communication open, and I cry sometimes, but we seem to be getting there. The thing is, if this is what it's like with my partner of 12 years, then no wonder it's hard communicating with other people!

Sorry, I've rambled. What was the thread about again??!

[Leo]

Leonie - see my blog post here, to get an idea of what it is. I just phoned them and they sent me two cards.

Lynne is so articulate, as always!! This miscommunication you described happens to me and is really getting on my nerves; my partner, who I love dearly and who I know loves me, has been finding it very hard. I know he knows "intellectually" that I've had a huge life changing event, but he does seem to find it hard when I don't react the way I used to or when I forget stuff.... I feel like he doesn't understand me and he feels like I'm not sympathetic to things he's going through. After 12 years it's like we are on different planets and we were SO in tune before. So, yes, it's tough, but I insist on keeping the channels of communication open, and I cry sometimes, but we seem to be getting there. The thing is, if this is what it's like with my partner of 12 years, then no wonder it's hard communicating with other people!

Sorry, I've rambled. What was the thread about again??!

Thank you! I have had a really bad few weeks and only just came back to BTG.

[Kazroz]

I have found this thread really useful

Sometimes measuring our recovery is so hard. It seems different for everyone-The specialness of the human brain I suppose.

I knew I was very unlucky but also very very lucky to survive but am struggling with not being like I was before!!!

I have now according to a specialist developed epilepsy due to the scarring on the brain. He says that if I only have one seizure a month that will be good!!!!

Struggling to come to terms with this, had only spent one morning back at work

All of this means that recovery is a long process I think and this thread has helped me realise that. I also think counselling is a good idea if only to come to terms with who you are now!!

Everyone around me has been fantastic and I am very grateful, it is my own inadequacies I now have to come to terms with

Karen x