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Realisation . . Is this it?


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I am very nearly 2years  post Sah. I'm experiencing some tearful down days at the moment I think because of the many stories and articles I've read and comments from my physio a while ago,It's kind of hit me this week that where I am now could be as good as it gets and I'm finding that hard to deal with

 

I'll try to explain;I have left side weakness with severe lack of sensation in my hand and numbness in my leg. My physio told me that that is the last thing to regain or that the feeling may never come back.I still do my exercises and balance exercises because my balance isn't too good either.My optician told me that nothing can be done for the homonymous hemianopia.

 

You're probably thinking 'Jan, these people know their stuff so just accept it' Therein lies the problem, I don't want to accept that this is me now. I know that I've come through this a lot better off than many, so why do I find this so difficult to accept?

 

My life changed to the point it is unrecognisable.I need to love this life and start living it. Thing is, I'm not sure how

Are these feelings normal? Has anyone else gone through this? Any advice would be great

Jan xx

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Jan I was still inpoving at 3/4 year mark, using my own things all I can say is like we say to others 2yrs really your early in the recovery I was just like you at that point...

 

I'd say the feeling are normal (or what is normal) Jan have you had or been offered councelling if not I think maybe that's the road to go down.

 

I was unlucky to have to go into rehab, but lucky enough that the councelling was there for me although now I don't remember a thing about it but it helped at the time...

 

sending you cyber hugs.

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hi jan

 

im sorry you seem to be having a down day  and im sorry that somebody has rained on your parade by being insensitive and unfeeling

 

could I suggest that you take their comments with a pinch of salt.  a lot of improvements are down to the person affected i.e. you.

 

time is a great healer and with your determination I think that you will do more in the future and not be aware of the improvements you may make as the time goes on and then you can say I've proved you wrong. so bad day yes but you are doing whatever you can and that's what matters.  have you though of asking for a second opinion re the eye?

 

If you can see if your gp would refer you to the QE hospital in Birmingham I know it might be a trip but if you don't ask you don't get so to speak.  just wishing you a happier day and lots of virtual hugs and cuddles  xx paul

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Jan,

 

I was like you, I was told what I couldn't do and some days I feel horrid but other days I feel great.

 

I do not know what to say to you but on down days I try and do what makes me happy, it is hard but I call on all the memories of my happy days.

Sometimes it works others it doesn't so on those days I go and have a nice sleep. 

 

I do hope you can come out of it as we are told all different things. So be a stubborn mule and say to self, "Huh they don't know me"

 

Now lets hear you sing and see you smile ...come on you can do it xxxx  There is a song there but I'll sing it when you feel happier xxx

 

Now early night and remember it is okay to have off days xxxx  Tomorrow or next day might be better now smile xxx

Love ya Jan and do not get so low come on here and talk about it if need be xxx

God bless xxxx

 

 

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Physio no need to say anymore they think they know everything mine told me you never had a sah just a little aneurysm I took my notes haven't even tried to count all the pages there is lots xxx

 

I was improving six seven years later and still am 15yrs later so never listen to what they say xxx

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Jan,  I send you prayers, love and a sincere hope for patience.  I haven't been down your road, but I know that you seem to be the type of person who can fight through anything.  I hope things continue to improve and that you feel better about your future.

 

Chris

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Jan, I can only say that this year, I'll be 12 years on, post SAH. I shall also be 55 in August. Every year, since the SAH, I've experienced better recovery .... I've been going through the menopause as well...and still having the drop in hormones.

 

It's a tough road to travel, but I've done more this year, than I've ever done post SAH, so take heart!

 

2 years ago, I finally went to the Docs and got anti-depressants for my anxiety (I'm still on them) ... I also had stuff going on in my personal life. I struggled. I just wish that I had accepted help earlier and life since, has been a lot better and on a much more even keel.... 

 

I've also had balance problems and still do at certain times .... go and speak to your GP and be honest with him/her ... I've always felt that for me, the two year stage, was the starting point in my recovery.... figuring it out and discovering that I was living in a body and brain, that didn't feel like me.

 

I rarely post on the site now, but I know how important mental health is ... please go and see your GP.... I wish that I hadn't been quite so stubborn, there's help out there and I hope that you guys won't leave it as long as me, to seek it. xx

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Sorry to hear you're feeling low Jan I believe no medic really knows the depth of the brain and the recovery it can make so never give up hope that things will improve.  Counselling helped me as I have said before, they helped me express my anger, reframe and just having someone external who is not emotionally involved was really useful.  You have come a long way and you are bound to grieve for the old life you would not be normal.  I am sure you will progress or gain more acceptance of the new you.  

 

Sharon x

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Jan, I am sorry you are going through such a low period, like Sharon said don't give up hope that you won't improve any further, I was in a similar position as you after my bleed, I had left sided weakness, was in a wheelchair for a while, then on to crutches, I had physio and at no time did she ever say to me it won't get any better than it is now.

She also gave me exercises to do to improve my balance, they helped a bit but I still have issues with that

 

Please don't let these people put seeds of doubt in your mind, I don't think they quite realise the impact negativity can have on a person who has suffered SAH do they even understand what we have gone through both mentally and physically, I wouldn't have thought so.

Jan, please go and speak to your GP, ask for some counselling it is right what Sharon said, being able to talk to someone who is not emotionally involved does allow you to express everything you are feeling, don't suffer in silence.

I know it helped me a lot, I can remember going to see my GP and I walked in, sat down and just cried and cried I was totally inconsolable and she just said let it all out, that's when I had counselling, please try it.

 

Don't forget Jan, you have my number and you can ring me anytime you want to, you know you are welcome at caravan anytime also, maybe a break would do you good.

Sending you lots of love & hugs

Love

Michelle xx 

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Thank you all so much for taking the time to reply to my post.You are the only people with an understanding of how I'm feeling. As I mentioned in a recent post, there is no support or understanding from family. John and I feel very alone at times. Thank goodness we have each other. Without BTG I honestly don't know where e'd be.

 

Louise, I had counselling last year,it did help at the time 

 

Paul, I have an appointment with my GP on 13th June, I will be asking for a referral,, mind you, I'm not holding my breath, my surgery don't like spending money and my doctor seems to have little knowledge of Sah.

 

Anyway, today is a new day and the sun is shining

Thank you all again. Can we adopt you all as our family? ( I don't moan all the time, I promise, I'll try to find a couple of pics to prove this!!!!)

 

Jan xx

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Jan - we are your family hun - we're all here to listen, advise and laugh together.  

 

Look forward to your wedding - it'll give you something to stay positive for...and remember, those you can't be bothered are not worth bothering about.

 

Sending you much love and many hugs xxxx

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Jan,

 

My OT's told my hubby to put me in a home as I cried every time they come near me.  Remember at this stage I had raging Hydrocephalus and guess I was a pain to them.

 

See in my own mind as watery as it was in that stage,  I didn't like them ha ha.  I have always been an awkward moo lol.

 

So I fought them as I knew they did not like me.  To give me a balloon to tap into air was not a help to me.  My Husband was disgusted by them and he is the quiet one.

 

So come on here and glad to hear you are happier today xxx xxx  Mumbles cuss words at whoever upsets you xxxx

 

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Jan so sorry you are feeling so down at the moment, I hope the words of others on BTG have helped a little. We do all care and understand which is the nice thing about this site.

 

Talking really does help and talking to someone who is not linked to you in any way other than to listen is best. I am lucky that my neuro psychologist has been really good at letting me talk. She often tries to come up with ideas to make life easier even if they are a bit of a telling off sometiimes (I know I am my own worst enemy).

 

You have done really well in your recovery but possibly it's been hard to accept the new you. I know I am only beginning to accept that now and I have not had the physical problems you are experiencing.

 

Take care and remember we are all here for when you need a rant.

 

Clare xx

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Hello Jan, I am sure you will agree from the responses, that you are valued as a member of the BTG family.

 

Twelve months since you shared your first post with us, and since then you have brought your own personality to the site. Always willing to support others, and not frightened to really open up about your own fears and and struggles post SAH.

During that time you have been trying to cope with life in a different way and also challenging SAH because of how it has dealt a nasty hand to parts of your life.

 

As a carer I don`t fully know how devastating that can feel, however since I joined BTG 2 1/2 years ago and have read most of the posts since then, I do know that you are indeed not alone. When Winnie pointed me to this site in December 2014, Mrs Subs was 3 years on from her SAH, and for that time we had not faced up to the fact that our lives were not back to `normal`. We had been told when she was discharged that everything had been fixed ...the coiling was a success ..... goodbye. 

 

So BTG helped our recovery emensly when I shared our story. With help and encouragement from many members and Mods in their posts,  and for some by PM,  after 3 1/2  years Mrs Subs and I found we were understanding each other and SAH,  knowing that we were not alone in our challenges to rebuild our changed lives.

As others have said .....progress is still being made, and for us too 6 years down the line.

Like probably all other members, we have also had to face issues with work...family...and `friends`.... (as if SAH recovery wasn`t bad enough!! :angry:)

 

It`s ironic that sometimes when you want family to be close and understanding, they can be so distant. The relationships you so badly want to be right are sometimes the most awkward and challenging. Be proud of who you are and the relationship you have with John. Let no one from the outside change that.

 

Jan, I do hope you take on board the advice from your friends on BTG, and seek help through your GP to get the kind of therapy/ medication that will help you through this. As Sami says, your wedding later this year must be a great opportunity to look to the future with that new commitment to your `soul mate`  John..... and of course your BTG friends raising all their glasses to your future. :)

 

 

Subs 

 

 

 

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Hi Jan,

 

We all have our ups and downs don't we?

 

I think the best way to deal with this is to set context.  You say yourself it's a new day and the sun is shining - Exactly!  That is the key.  You have a new day to look forward to.  Some people don't.  You still have the opportunity to do many things with your life.

 

Subconsciously, I think you are still yearning for the yesteryou!  Sadly, it is gone for now and although you are a couple of years down the line that is still early in recovery terms from a brain injury.  You can see from what some of the others have said that they are still improving several years down the line and continue to do so.  You have to work with what you have, not what you had.

 

If you dwell on the past, it will drag you down.  What you must focus on is the here and now - and the future!  Don't let your imagination run away with you.  When you feel these down moments coming on, that is when you must talk to someone and open up to them. 

 

I would also advocate keeping active and doing the things you can do, being productive and turning your negatives into positives.  Yes, it can be upsetting at times, but if you have limitations, fight them to overcome them, by adapting, using aides, anything, to beat the problem.  Then you say to it - 'There, you can't beat me!'  Then look in the mirror, smile and tell yourself  'See, I did it!''

 

Jan, you have helped so many people on here by your positivity.  Sometimes it is hard to keep it going, but you will.  I know you have much to look forwards to in your life.  Many opportunities will come your way, you just have to look for them and grab them with both hands.

 

Tomorrow is a new day, treat it as a man and grab it by the b&*^%!!!!!  I hope that has made you smile.  Congratulations, that's the start of a great new day for you!  Don't be down, we're are all here for you and rooting for you.  We are here when you need us, don't forget that.

 

Good luck Jan - love your life, it's the only one we have and we have to make the most of it.  It still has lots to offer you!

 

Macca

 

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Hey Jan, lots of great responses and I know you are just seeking some reassurance and that I think is absolutely normal for the two year mark, I hope I can can add something. 

 

At that time point I had put much of the horror and pain behind me that it was probably only then that I did start to take full stock and realise what my new landscape may actually look like and grieve a little for what was lost. But that said it has constantly changed, shifted and improved since then too and that's ok too so it's not a static thing, it's just not as rapid change

 

As an example for you, yesterday I got back from a weeks holiday with my kids and although I am wiped out from the effort of it I had great holiday in the new style of Daffodil. . Now I find holidays really hard these days if I'm honest , all that travel and change of routine and the first time I did it post SAH it was dreadful. I just couldn't do anything I would typically  have done,I was exhausted and every pain filled me and the family with dread but we just kept on trying a little more and testing possibilities and each time it has got easier and I have found a little stretch in the limits of what I can do at that moment and I have learnt more to notice my signs to rest so I find I need less of it. Does that make sense? . Yes by the Time I get to the passport hall on the way home I am a little broken , my balance has completely gone, I need my stick and I know I'll need the afternoon in bed but finding that way through to still do things that make your heart sing is worth it. 

 

A friend who also happens to be neurophysiologist gave me some great advice. She said you now have a different set of traffic signals and timings and have to know when it's worth going through an amber but to always heed a red light and never run that and it's advice I listen to and remind myself of on the days when I know I push it. So 'is this it' ?, no never in my eyes but your playing field is different so find, explore and be curious about new ways to play and make the best of each day and just be kind in the process especially when the day may be harder.  You're doing so well Jan. We all are! X

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Thank you so very much for all your kind words, thoughts and advice,I can't explain how much you all mean to me. Thank you for always being here for me.

Jan xx

Ps.    Macca you did make me smile ?x

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A Trip to BTG is vital for me, it lets me know when down I have here to turn to and it is our lifeline.  When Hubby has time off I pop on quickly ..very quickly.

 

This is the best site I have been on that you can give vent and we all sort of understand.   Like today Washed hair showered and stink of bleach.   Drives me bananas really but I wont go on about it xx already have xx

 

Keep going Jan and have a good Wed/Thurs and Friday, as today is nearly over  for me as need a sleep xx

 

Love to you All

 

Win xxxxx

 

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