HeatherH New member

[HeatherH]

Hi All

 

My 17 year old daughter had SAH on 19th January - a great shock to us all! She had surgery and fantastic care in hospital and was home after 2 weeks. She is recovering well but as you can imagine, at 17, she is finding the tiredness and recovery process infuriating. Her friends have been amazing, but are understandably getting on with their lives - studying, socialising, 18th birthday parties......... I'm sure you remember what it was like!

 

My daughter feels she is missing out so much, she was determined she would finish her A levels and go to university in September but last weekend she came to realise she has missed so much she will need to redo this year and aim for university next year. This has been so hard for her, she has always been a grade A student, working hard to achieve her goals, we have had lots of tears this week! As her mam, I am there to support her, a year in your life is so small, but at 17 you don't see that -maybe when she's older she will understand.

 

It's difficult for me to know how she is feeling, is her tiredness teenage laziness (she never liked getting up before!) or is it SAH recovery? How much do I push her? How can I make things better?

 

We go to the SAH support group at the hospital monthly which has been a great help for both of us, listening to others and discussing problems makes you realise you are not alone. This site has also helped in my understanding - I knew nothing about SAH before January, thank you

[Super Mario]

Welcome to BTG Heather.

 

Firstly the fatigue is a leftover from the SAH not teenage idleness. It will do no good to push her as the brain takes time to heal, her body will tell her when enough is enough and she must listen to it.

Make sure she drinks plenty of water as keeping hydrated really helps the resultant headaches.

 

You will find her recovery has setbacks, 2 steps forward and one back so it is very important that she takes baby steps.

It will be heart breaking for her that she is missing out on all the things her friends are doing but her time will come, difficult to make a teenager understand that.

 

She has age on her side and all you can do is support her the best you can.

[Macca]

Hi Heather,

 

Welcome to BTG.

 

After her SAH, the tiredness isn't tiredness -it's fatigue and there is a big difference.  No she isn't lazy, after what she has just gone through, her body will take a long time to fully recover.

 

Please don't push her at all, she needs to take things in her own time and being under pressure will almost certainly set her back.  She needs support not pressure, she needs to take her foot off the gas!  She may well have been a Grade A student, but her priorities have suddenly changed as a result of this SAH.  Her No.1 priority is to recover.

 

A brain injury is about as serious as you can get.  Forget studies until she is a lot better and stronger.   Often with SAH short term memory is affected and if she tries to study with that problem she will make herself worry because she isn't retaining what she is trying to learn.  Please take that pressure off her.  She can study later if need be but not at a hell for leather pace.

 

Working hard is a no-no at the moment.  Let her get better.  You owe her that, she has probably been working hard to please other people as much as herself, probably too hard.  Now is the time to ease up or she will suffer setback after setback.  Getting back to 'normal' whatever that is, is a long slow process and you, and everyone around her, need to recognise that.

 

The injury she has is deep seated and not visible to the naked eye.  It is easy for people to mistake that for being better and fully recovered.  She will take a long time to recover, please allow her the space to do so.  I am not being critical, but those of us who have been there know how difficult this is for your girl.

 

Being young will undoubtedly help her in the long run but pressure is, in my opinion, one of the last things she needs right now.

 

She's come through a tough time, let's make the future a little easier for her - please.  I know this sounds blunt, but she's precious and deserves nursing and nurturing until the rose blossoms again!

 

Best wishes and please keep posting and let us know how she is getting on.  I wish you both the very best of luck.

 

Macca

[kempse]

Hi Heather and welcome to BTG.  I'm truly sorry to hear your daughter has experienced a sah at such a young age, I'm not surprised there have been a few tears this week, it must be frustrating for her and equally for you not knowing what to do for the best.

 

Regardless of her age, she will no doubt need time for her brain to heal and I'm guessing that studying hard will not give it the best chance it needs - what is best for the brain is rest.  I hope her school is on board here to help her. Although not for the same reasons, my own daughter is just finishing her first year at uni, whereas all her peers are all just finishing their 2nd year.

 

Although she was apprehensive about starting a year later, it has worked out just fine and I'm sure your daughter will find the same if that is indeed what she decides to do.   I believe there is support for most things at uni and the socialising and parties just goes on and on, so she wouldn't miss too many and could perhaps join in as and when she feels up to it, starting off with the odd hour or two and build from there. 

 

The one thing that we older sahers have found is that it's too easy to feel ok, do too much and then suffer the consequences and feel exhausted for a few days unable to do much at all.  I think a lot of it will be trial and error, but try not to let her get too disheartened, things do and will improve, albeit slower than she would like.

 

I wish you both well,

Sarah

[Daffodil]

Hi heather and a big hello to your daughter too, what a brave young lady she has been since January. I can't imagine trying to process everything I felt post SAH at her age on top of the pressures that each typical young person brings to bear on themselves to fit in with their crowd, to be part of everything that is going on and not miss out on anything. She will be feeling the frustration of that and pretty crummy to boot but Sah recovery is all about learning how to adapt and adjust and if she can manage that now it will stand her in good stead for the future.

Hard though it is to adjust to her changes to plans she has an opportunity to think and act a little differently to her friends for a while maybe, can you help her see the positive in a chance to forge a slightly different path, take a different route and who knows where that may lead. Yes it might not have been the initial plan to go later to uni but if she is absolutely set on keeping her ordinal goals then she will find a way to do that regardless post sah, she will learn her new style of study, her way of managing tiredness.

I don't have much advice on what to do to make things better, my girls are yet to reach teen years so not much experience to draw on but I think you should encourage her to have the confidence to do what she feels is right at a pace that isn't putting her under strain. Also I think a little bit of fun and experiencing completely different things might be good and a way to distract from the pressure of school, uni etc , being left behind until she gets her stamina back, so maybe all bets are off for this year for all of you and use it to plan and do things together that are simple , wonderful and that make you smile.

I am going to use the example of Stephen's story as way to change how you live in the face of unwelcome adversity and challenge, I am sure you are familiar with that courageous lad who raised all the money for teenage cancer trust before his untimely death. His view was to positively live life , experience the weird And wonderful and help others.

 

I drew inspiration from his attitude when I was ill. When I could do very little and was frustrated at being unable to work, look after my kids like I wanted to or just get anywhere I sat at home and devised some simple fundraising ideas that I could do from my comfy chair and just that one small act helped me feel purposeful and was just one of many cogs in my rehab. It wasn't what I'd planned but I guess I was trying to make lemonade! Just trying to illustrate that there are many things she can do , it doesn't have to be done in a traditional way and that can bring unexpected joy and reward.

My very best wishes to you all.

[Skippy]

Heather - to put this into perspective - a broken leg takes approx six weeks in plaster to heal - time that by six again and you have a rough estimate as to how long it can take the brain to even begin to heal let alone completely recover.  She must  rest and drink plenty of water to help her brain recover - otherwise it's like expecting a car to run without petrol and a gearbox to work without oil - it will ultimately burn out  - let her recover at her own pace.  Just be there with support and love - its such a young age to be devastated by something so tragic xx

[Tina]

Hi Heather a very warm welcome to you and your daughter

 

I can't imagine being able to cope at such a young age as your Daughter and also yourself as her Mum with such a huge life changing event, bless you both xx

 

Its really good to read that you and your daughter are attending a support group monthly and that BTG has helped with your understanding. I also knew nothing of SAH before mine until my husband found this forum recommended by another survivor Yasmin. The warm friendly support here was an absolute Godsend to me and my family and as you say you don't feel so alone. A huge thank you to Karen Hyder for creating BTG. So many of us come out of hospital with little or no information on what to expect in recovery.

 

Super Mario, Macca, Sarah, Daff and Sami have given some great advice. It is very hard for anyone to completely understand how an SAH survivor is feeling and what they are going through emotionally mentally and physically. Your whole world has been turned upside down and inside out ! Because you look ok on the outside everyone just expects you to be ok.

 

Wishing you, your daughter and family well. Things will get better   as the others have said, it just takes time that cant be rushed. Keep doing what you are doing being there for her with love patience and support.

 

Glad you found us and look forward to hearing more from you.

Take care

Tina xx

[HeatherH]

Thank you for your kind words, I knew from the beginning that university in September was unlikely but Rebecca had to realise that for herself and come to terms with what has happened. She is still keen to try to do some of her exams this year and the school has been really good, offering 1:1 sessions and home visits (even for the exams if she gets that far). I don't put pressure on her to study, she asks for her books and we read together, discussing the topics she finds interesting- I've learned a lot from her about A level psychology and sociology!

 

For me, her recovery is the most important but I don't want to stop her doing what she wants - her body tells her when she has done too much and she knows now that she has to have lots of rest and quiet time, I take my lead from her.

 

On a positive side, we have become even closer than we were before, I have taken time off work to care for her so we spend most of our time together. We have comforted each other, laughed together, cried together, she is my best friend and I only want her to be the wonderful person she is.
If it was up to me I would keep her at home forever, but I know she has dreams and I will always be there to support her.

 

Little steps each day, we can see how much she is improving week by week, she has been out with friends a couple of times during the holidays; she knows she has to maybe do things a little differently now - parties, loud music and flashing lights are out for now, but enjoying a lazy afternoon with friends on the beach or in the park is good, as long as the sun keeps shining!
Heather x

[Mandy Wright]

Heather, welcome to BTG although I wish the circumstances were different for you. I love your post above where you describe how your relationship with your daughter has developed. I wish you both a long lazy summer together as she continues to improve.

Mandy x

[SarahLou]

Hello Heather,

A warm welcome to BTG.

It sounds like you have a very stong willed young lady at your side, well done to her for wanting to pick up those books and for you both to be studying together!

Recovery journey after SAH is all about baby steps.

It's great that she has good support from the school, her friends and her family and support groups.

I wish Rebecca well in her recovery.

Take care,

SarahLou Xx

[Skippy]

Heather, its wonderful that through this tragic event you and your daughter have grown closer.  My SAH pretty much had the same affect on the relationship I have with my dad - I was 35.  I wish Heather well in her recovery and her strong will will get her through this - according to my hubby, I got through so well because I'm stubborn!  Strength of character and a good sense of humour are definitely two attributes worth having at a time like this.

 

Sending you and your family lots of love

[momo]

Hello Heather sorry to hear this has happened to your daughter.  SAH can affect any age group even babies.  So glad she seems to be doing well.  As for Uni maybe if she just thinks of it as a year out, many teenagers take a year out before Uni and I think that it can be a good thing.

 

Also if she could concentrate on something she is interested in a hobby anything to get through this year. Maybe the University could help by supplying some course notes etc just to keep her interested then she will be fully informed when she finally starts this course.

 

All in good time though.

 

Most of all she must rest when she feels tired. I remember a consultant telling me that sleep was the best thing for this.  It can be a long recovery but we are all different.

 

Sending good wishes your way.

[Louise]

Hi Heather, warm welcome glad you found us.

 

Some very good replies not a lot to add..

 

I so wished my Mum had been there during my recovery, it must be terrible but she does seem strong willed and learning what you can and cant do helps, we all have days when we feel like a child and this gets us down but I always say tomorrow will be better, easier today is just a glitch.

It does get better, easier, and your daughter is young and that is definitely on her side...

 

wishing you both all the very best... take care and look after Yourself because without the strength of carers we wouldn't make the recovery we do...

[Winb143]

Hello Heather and Daughter,

 

Uni will be there once you get better, my Surgeon said to me "No Stress" he said stress is bad for us so passing it on.

 

Listen to your Mum she wouldn't steer you wrong, you 2 are best pals, like me and my daughter but we can have some tantrums !! lol

 

I wish you both all the best and remember listen to your body and head !!

 

Ditto to what's already been said.  Now when ready go and live your life to the full but not before.

 

Good luck to the Pair of You xxx

 

WinB143 xx xx

[Carolynusa]

Hello Heather and Wonderful Daughter!  So glad you found this site.  The people on BTG have a lot of experience and knowledge either as survivors or carers.  My SAH was in June 2014 and I was so scared when I got home.  I found this site and began reading posts that helped me understand that what was happening to me was common to injury.  You and your daughter will meet some great people here that will help both of you feel better about recovery and help to make you both realize you are not alone which is a common feeling for a survivor I think.  

 

So sorry your daughter had to experience this at such a young age - or any age for that matter.  She sounds like a wonderful young girl.  She is in need of a break for a little while and will be much the better for it.  I agree with what was said above.  Rest and water, etc.  

 

In regards to getting closer, I had the same thing happen with my sons.  One of them was by my bedside every day of my 6-1/2 week hospital stay.  He would bring me chocolates (Win's favorite) and a deck of cards.  He even learned how to play gin with me - never would before.  He still watches me every day and thinks I don't notice, but I do.  So glad you both are able to experience that closeness.

 

keep an eye on her so she doesn't try to overdo it.  That time will come.  She's young and strong I think.  

Please keep checking back in with updates.  I will be thinking of you both every day.  Be well - both of you.  

Carolynusa 

[Chelle C]

Hi heather

So sorry to hear about your daughter, at any age it is a difficult situation to deal with but at 17 years old she is going to feel like she is

missing out on lots of things and that is very sad, it is a shame about her A levels but you are right her recovery is the most important

thing right now.  she sounds like a very sensible girl.

 

With your love and support she will get there I`m sure, she seems to be doing all the right things especially listening to her body

make sure she has plenty of rest, plenty of water and with all the love from you she will get there.

 

I live in county Durham not far from you, I`m 10 months since my SAH this site has helped me a lot and I am sure you will both benefit from the support and advice given here,

 

I wish both you and Rebecca all the very best on you recovery journey

Best wishes Michelle x

[HeatherH]

Hi All

I just thought it was about time I gave you an update on Rebecca's progress; she is amazing and has made a fantastic recovery, we are so proud of her.

She completed her A levels, albeit a year later, and started university in September. She has moved into a student flat and has made lots of new friends. She is doing really well, managing to keep up with her studies and enjoying student life. 

 

We still attend a monthly support group for SAH, Rebecca now offers advice and support to others who have recently suffered SAH. She still struggles sometimes to cope with the stresses of university life but has coping strategies to help her; the university have been so supportive and work with her to make sure she achieves her goals.

 

The last 2 years have been hard, but she is a determined young lady who won't let what has happened stop her getting where she wants to be.

Best wishes to you all

Heather

[Super Mario]

Heather, thank you very much for coming back here to give us such a positive update. So many members just come and then go and we often wonder how they are faring.

The support your daughter is offering to others will be invaluable to them.

 

This post will give hope and encouragement to others that have suffered a SAH.

 

Well done Rebecca.

Heather, may your daughter continue to go from strength to strength and achieve all she wishes to achieve.

I wish her all the best for her future.

[Chelle C]

Hi Heather,

It's lovely to hear that Rebecca is doing so well, it sounds like she has settled into student life wonderfully, she has managed to achieve a lot during what has been as you say a hard 2 years.

 

I also think it's fantastic that she is giving support to others who have suffered SAH.

 

Well done Rebecca & I wish you all the very best for your future.

Love

Michelle xx 

 

[Winb143]

Well done to you both, you must be proud of your Daughter Heather xx

 

Well done Heathers Daughter Rebecca, Enjoy Student life xx

 

Good luck to you both

 

Win xxxx

[Daffodil]

Well done to all of you. The support you gave her was so Important but she is a determined young woman and I wish her the very best of life's adventures. Lovely she is helping others too xx

[Macca]

Fantastic news Heather, thank you for updating us.  I'm sure this will be an inspiration to others that there is indeed life after SAH!  Well done on supporting her through this.  Don't underestimate the part you played.

 

Best wishes to you all,

 

Macca

[Missy67]

Heather 

I know you and Rebbecca from the support group. 

What a lovely young lady she is.

Hopefully I can make some more sessions but I'm up and running literally, pounding the pavements again and at work full time.

lol Michelle 

[subzero]

Hello Heather, your recent update about Rebecca`s great progress is truly heart warming reading. As a family you have come through so much in  the past 24 months, and seeing how your young daughter has tackled her recovery,  must fill you with so much pride and joy.

 

What a wonderful touch that she is helping others who have suffered from SAH.

 

Please pass on our best wishes to her as she continues to shape her own life, build up her independence at university and get to grips with her studies.

 

Thanks again for keeping in touch.

 

Subs

 

 

[Susan]

Hi Heather

 

I've met you and Rebecca at the support group too back in January, and Rebecca and her dad last November.

 

It's great that Rebecca still attends the group to give advice and support to others.

 

I had my non-aneurysmal SAH back in January 2016 but unfortunately no-one informed me of the support group when I was discharged. I only found out it existed by chance (through an old BTG post!) so did not get to my first meeting until 10 months on from the haemorrhage. It was helpful though as I was really struggling with work at the time and needed to talk to people who understood.

 

I work Tuesdays now so don't get much chance to attend but hope to make it back to a meeting sometime when I have some time off.

 

Missy67 maybe I've met you too?

 

Love

Susie xx