Daffodil

Headphones are a great idea , I couldnt sleep without those or ear plugs whilst in hospital. That's a caring nurse to think of that. There are always more good eggs than bad.

Sleep well.

Hi Jimble.

I had my SAH in march but still often experience pain in my lower back . The explanation offered to me is that any trace of blood in the spinal fluid aggravates the nerve endings there . Not sure if that's the case , someone else may have a different view. I find alternating an ice pack then a heat pack helps my pain. Someone rubbing it better is nice too but it usually means I've been upright for too long and I need to rest. It's very early days for you so if youre worried you should check in with your neuro team to be safe. Stay well.

Daff

Karen.

Poor you. Poor jimmy. This is shocking and cant go on.

There's good advic here already from Paul, Michelle and penny. Definatly try PALs they should Be able to help here.

In the NHS standards http://www.nhs.uk/NHSEngland/NSF/Pages/Nationalstrokestrategy.aspx for stroke care it says 'people with stroke need to be treated by a skilled and competent workforce.' ....hmmm

I think you must go back to the sister and detail your experiences and justified concern. Write it all down before you go as its easy to forget when you are there or be intimidated. make it clear you are not someone who will tolerate this any longer.You will need to badger them, shame them if needed, remind them of their duty of care and I, like paul would report it to the director of nursing. A call to the press office to talk of a "friend at the daily mail " interested in pictures of this care might seem underhand but willmake them pay attention...

I had times when I had parents and in laws all battling against shoddy nursing. Some are amazing, some are not. I know Its the last thing you want to do right now but take heart, you are not alone and this is a battle worth fighting.

the phrase "in a minute" sends shivers down my spine , it often never came, so you wait, and wait, and I was lucky that most times I could rally against the system myself, hard though that was. For Jimmy he can't right now , no wnder the poor chap takes his clothes off. Its his way of saying will someone please pay attention. so keep on telling them you expect, no demand, of their care standards. He can't tell them and they're obviously not watching to see what he's trying to communicate in actions.

Huge hug. Good luck

Vanessa, nausea, vertigo, headaches comes for me when my brain is experiencing low pressure within the ventricles. (I know this because of my experience with setting shunt controls and LP s and going lowpressure which reminded me of when I had it post SAH ) i believe it's quite common to get this low pressure feeling post SAH as the ventricles are over draining because of the blood in them and the changes in their size as they adjust but you probably understand the biology better than me.

Anyhow I digress. My super duper pressure doctor says drink coffee...yes coffee, my shunt team says drink coke whenever i have had lowpressure. Not sure if anyon else has been told this but it was common practice at my hospital , in fact you could tell who was having low pressure by the drinks on their side table :lol:Either way I know this does help me. Obviously I'm not recommending caffeine if you have high BP. Ive also had cyclazine for extreme nausea.

That's a good thing to hear Karen. Enjoy your day with jimmy, hope he catches your positive vibe and teases you some more. best wishes for a good day.

Hi Ceekay

Great to meet you virtually. I'm glad to hear you're doing ok but tke it easy. My temper was awful but improving a bit now. Dawn is right, headway are excellent, or look for some other support. Don't accept the , 'you're alright ' cut loose discharge.

I have found so much comfort and support here. I hope you do too.

Daff x

Dawn. Big hug. So that's pretty rubbish to be in the middle of this but please dont worry.

Long post reply from me on on this one.I would say that the letter they have written is for their benefit not yours , they are coverin themselves in case they needed to demonstrate further down the line that they are doing all they can to protect you. It is probably is written in a slghtly misguided , impersonal and restrictive manner, these things can often be which is so sad and unnecessary. Don't take it personally but do write down and date anything if you feel that your condition is being used to impede your work progress.

Firstly the ear plugs, Liz is entitled to her opinion but frankly she's justnbeing ignorant. Disability rights say 'Disabled can also include disabilities that are only apparent in the workplace. An example of this might be where you started work and found that your eyesight was affected by computer screens but had not noticed this problem before you started work.' so trust me you can justify use. I suggest just making sure that people know why and when you are wearing them, maybe put a sign on your desk saying, my ear plugs are In so please tap my shoulder. They certainly don't stop you working , they probably give you more focus.

On the phasing of the training, my best advice is to go with this plan and smile. It wont take forever and then you will know how to do it all again and won't need to ask. I might seem illogical to have to hand things off out of order but if that's how they want to structure it then be agreeable.

Dawn please remember that no one there will want you to fail, it may seem like that at times but the majority will want to help you. They like, respect and value you but are tip toeing. Liz may want your job but I want doesn't get!! Your team know you can do this! Hang in there and pm me if you want. X

Hi Stephanie, I had my SAH the month after you and share some of your frustration at the pace I currently move at. Its really hard making that adjustment and acceptance and i cant say Im there yet. But wow, aren't we just amazing being here, walking, talking, laughing , loving.

A dear friend said to me ," if you had broken your leg in three places you wouldn't expect to be up ballroom dancing so just be more patient with your healing". Hard for me to hear but advice I am trying to heed. Our brains need plenty of downtime, quiet and rest cos so they're busy running the rest of the body ship at the same time as trying to heal and repair itself. We just need to gve it time honey. You're not alone. The bed building will come!! XX

I wish you al the best and I hope today is a better day. Daff

Hi Karen. what a scary and sad time it is right now for you and your husband. He sounds a very determined man whose trying to wrestle control back any way he can, not easy I imagine to be around as a witness but im sure it will be an asset in his recovery. I watched a fellow stoke survivor pull put their own catheter and brain drain and we do some pretty odd things in the early days; his brain and body is trying to deal with a ischemic and hemorrhagic stroke so there's a hell of a battle going on there. Are the hospital supporting you and him? Definatly call Headway if you havent already. They can offer you some great advice and reassurance with their nurse led helpline. also there is a charity called Different Strokes which supports younger stroke victims and their families. They can offer more practical help after you leave hospital.

Iim sure there will be others on site who will share more experience which will help you but There is book written by the wife of the singer Edwyn Collins ( he sang 'never known a girl like you before'), who had a SAH with some similar impact to what you describe with your husband. (I wanted to read it to understand what my husband was and is going through after my SAH and coiling) . it helped me appreciate the partners view of this situation and it may offer you some reassurance and hope. It's called falling and laughing by grace maxwell.

My very best wishes to you both. I hope things improve in the coming weeks

Thank you team BTG for sharing and advising on this one, it's hUGELY helpful . Will definatly chat to teachers. Love, blessings and best wishes to you and all your amazing offspring whatever their ages.

I used to love multi tasking too. Well maybe that's not entirely true, think It just became my habit, my adrenaline rush. If I wasn't racing about then I felt restless, nervous energy. Since the SAH I just can't do it, in fact dont want to for how it makes me feel. I still write a list of things I want to get done but I don't start one whilst in the middle of the other which makes me more focussed on the task in hand. Im not back at work yet but When I get there this single focus will be a different approach for me but probably a new skill, just one I never spent any time at perfecting before. A much loved family member keeps reminding me 'that was then, this Is now', I am finding comfort in that. No one can take away what you have done previously but now is the time, the chance, to find out what you can do today. Take your time at work, be kind to your new working self.

Vanessa I love the avatar. Elizabeth Corday was my favourite doctor in ER.

Fellow mums and dads I have a question for you. How did you help your children deal with the impact an SAH has on family life?

My two are under 10 but old enough for us to have told them the truth the whole journey so far. Not in a scary , full gory detail way, but honestly and not giving false reassurance. They have a strong family network.

I have seen them show anger that it happened, frustration that we can't do what we used to, sadness and shed lots of tears and I have felt all of these are good and natural responses and just tried to support and cuddle and love as best I can. I have noticed recently though more fearfulness sits in them., they look at me with doubt. If I have a bad day they immediately think that might mean hospital, or an ambulance. If I talk to them about it the say its all ok but their eyes say different. The last few nights both have woken and climbed into bed with me. Thats a lot of bodies in bed which exhausts me but I don't want to not comfort them when they obviously need it. Is time the best healer on this one?

I think they are dealing with the enormity of the situation and change pretty well but it would be good to know how others have fared and what has helped.

Daff x

Maria Ross wrote 'rebooting my brain' and it's the only book I've read to date about SAH , I found it inspiring

Anyhow for today , 21 st september you can get it free if you have a kindle.

http://www.bafsupport.org/forum/topic/show?id=4863831%3ATopic%3A190263

Vanessa, what an achievement qualifying as a doctor, that's really amazing and shows a inner determination that will no doubt help you as you recover.

I'm six months in and finding little rhyme or reason to how my recovery goes. I felt great in the early days, no doubt exalted to still be here, but now as the impact of my SAH has revealed itself my days are slower and altered to what was my previous normal. My advice is listen to your body, your brain and take the scenic route to recovery. No point trying to rush as it will remind you if you take things too fast too soon. Take care. Daff x

I realised something had changed in my filter in hospital when i challenged a bullying, ignorant and racist woman who was subjecting us all to her opinions and told her to " shut the f up". I may have thought it previously but would never have said it loud. But I have always steered clear of energy stealers and even more so these days, ive none spare to give.

Feel like I could run a truth booth at the fair...roll up , roll up and ask me what I really think!! Hey Mary we could do it together!

Hi , a friend sent me the link to this TED talk today which I watched and I found the experience of an SaH from a neuroanatomist really interesting ( even though i found the real brain bit was a tad freaky). TED have some great and short videos.

I can see from searching BTG that other members found the same video a few years back so just bumping it up the forum.

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Hi Kris, I'm not back at work yet. I was in the process of starting to plan a gradual return when hydrocephalus came back, so now in recovery from that operation and getting used to shunt so I'm not where you are yet but can empathise.

The longer I am away from work the more doubt that creeps in that I could ever do what I did. I seriously doubt I would have the energy and attention to expend on it that I once did or that I wold even want to. But thats enough about me.

You have a very specialised vocation and a skill set that organisations would be so keen to tap into. How about starting back in something in patient advocacy or working with a charity like penny suggests. Charity work often leads to finding permanent roles that value your skills but that operate at slightly less intensity than the commercial world.

I'm sure whatever you choose to do you will find a pace that works for you. Daff x

Dawn. You could do without this added hassle couldnt you. Defnately kep a record of it? Do you have written agreement of the adjustments you need? If not it might be worth getting that in place and checking its still suitable as you take on more. There are plenty of Products available cheaply that will alert you to a phone ringing

http://www.actiononhearingloss.org.uk/shop/telecommunication/telephone-alerters.aspx

So really no issue there to worry about.

I would remind her that you are focussed on finding the best ways to do your job but that it is early days and will take understanding and adjustments from both sides. It's not personal, it's just ignorance.

Don't lose sight of how well you are doing. Enjoy your day off.

Hi Bev. Hope today is a better day. I can't remember the first days post SAH which is fortunate but I do get anxiety on my hellish days or when the pain or symptoms remind me of my hospital time. I have two young children and the worry about the effect this has on them is hard to manage sometimes. I'm doing two things to help me cope. First I'm having some NLP counselling which is helping me to talk about it without feeling I'm burdening my family more. The second is I'm learning mindful meditation.

Both are helping me slowly come to terms with my life changing event, what I have witnessed and experienced. It's really early days but For example I woke up ths morning feeling dizzy and anxious(hate this feeling). The kids just wanted to play. I just wanted to hide. I did some deep breathing and managed to play, so a small success.

I know some of what you are going through, i can't know how you feel but are here to vent when you need it.

Take care. X

Hi Stephen. Be kind and gentle with yourself in these early recovery days. I found the adrenalin of being alive and recognising i was still mostly myself masked my fatigue and the massive shock the brain and body went through and i probably did too much. My advice is plenty of rest and water. I'm six months on post SAH and coiling but had another complication which mean I'm still off work but My consultant said 3 months is the earliest he had seen a return to work post SAH. You will know what's best for you and be vigilant for how you feel each day and what effects it. I keep a diary so I can work out what situations are better than others for managing tiredness. I'm sad it happened to you, mad they didn't spot it, but glad you're doing well. Daff

Kel, thats super, really helpful. Thanks for posting that thread. Knowing about the Liquid paracetamol is good too as I had to have that previously when I went high pressure. They're going to keep me in one night cos I only recently had shunt. Glad your results are all good. X

Hi all, I've got the date for my first cerebral angiogram check post my ruptured SAH coiling back in March. I've had the angio before when I had the coiling but was so out of it last time i want to ask you what can I expect?

Will I feel rotton afterwards? Does the dye thing feel perculiar? Any angio top tips? Does it take long? Should I bikini wax!!

The outcome I am hoping for is that my coiling is looking pristine and lovely , that my shunt shows its best side on the pictures and my baby unruptured anneurism is sitting pretty.

After this they say I should be able to revert to MRI scans if all ok. Is that standard?

Thanks for any shared experience, advice.

Daff

Yep Penny the shunt tubing is underneath but I lost a lot of weight like goldsh girls son so it's quite visible over my collar bone and running behind my ear but I know that'll improve. The shunt itself i can do a combover of sorts but not to bothered. Now I'm not having the pressure extremes my appetite is returning and the nausea diminishing and It's been a good day, Hardly any dizziness even with the hot weather. Burr hole is interesting as it acts like a babies fontanelle and I now if I'm low or high. Thanks for lifting me up. Glad I found you.

Thank you Win, Paul and Sarah. I have had a much happier weekend just talking to you all through ths site and hearing your advice. My rather mad haircut and horrible piping from the shunt is an excuse to wear hats which I love to do and I will try and sing more Win. Crying I can do rather well already but know that i feels better when i have a good old sob. So far so good on this shunt setting, maybe ths one is my magic number. Enjoy the sun everyone.