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recovery setback -driving and supermarkets


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Hi Elaine,

What you're experiencing isn't abnormal, as quite a few of us have experienced the same....I have. I think that it can be sensory overload, lights, sounds etc and a bit of anxiety thrown into the mix at the same time. A supermarket experience isn't good at the best of times, so I now tend to shop about three times a week, rather than doing a large shop. I also always take a list with me now, so I can get in and out fairly quickly. I also use a smaller supermarket now and I cope better with it, as it's not so busy and I know where everything is. I've had the same problem with driving..think that it's all the head turning, plus concentration.

I had a third nerve palsy which affected my sight and still have some residual double vision when I look up and to the far extremes. I've found it difficult coping with very bright lights too and in the initial years post SAH you would find me walking around the supermarket with sunglasses on. Scanning all of the items on a supermarket shelf was also hard and it still is for me ... 9 weeks on from your SAH is very early days into recovery and you will see improvement. I was told that the blood draining from the brain after the bleed can take up to 3 months to go, so that could explain the neck stiffness, as it drains down the spinal cord and can irritate nerve endings.

Are you sure that you're not overdoing things? I would imagine that you are able to do a lot more now than you could in the first few weeks after the SAH, it's probably that you're just wanting to get back to normal quicker than your brain will allow you and it's rebelling against you and may be a sign that you need to rest up ... not sure whether you've seen the following thread re: SAH Recovery Video, but it may be of help - http://www.behindthegray.net/vbulletin/showthread.php?7023-Patient-Experiences-of-SAH-Video

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Hi Elaine! Welcome to BTG - great place to be, lots of information and support here. You were quite brave to get out there and try the market and driving alone!!! Especially so early in recovery. I think what you're experiencing is normal. I would check with your dr. about looking up and the connection w/stiff neck, but that kind of thing occurred with me as well. I was (and still am to a degree) sensitive to lights, noises, crowds. My neuro told me it was ok to go back to work, drive, etc... after 1 month of being home. Found this was way too much for me. Prior to driving, I did go into stores a few times with my daughter and husband. Not pleasant experiences! It was way to much stimulation from so many different things - think my brain couldn't process everything all at once. It seemed people were just popping out at me from no where and trying to find items at the same time was near impossible then. Same kind of thing happened when I first started driving - didn't go it alone, I was afraid to and in retrospect, glad I had someone with me. I did ok, but it was very hard to concentrate on the task at hand! Driving requires multi-tasking and I felt like I was in a different world when behind the wheel - kind of like a video game or something. I pushed myself with all of it as I wanted and felt I neede to be back to work. Was very tired, slept a lot, had weird feelings in my head, headaches, dizziness, emotional, on and on. All very normal after effects, I learned later through this site!

When you feel you are shutting down, it's your brain telling you to slow down, rest and give yourself some time to heal. Drinking 3 liters of water a day was advised and truly does help. Sleep as much as you need.

Looking forward to hearing more from you!

Take care,

Carolyn

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Hi Elaine!

It's early days for you and your brain wants quiet and rest and time to heal. Driving is still one of things that tires me out most. If you think about it there is a lot going on for your brain. Cars coming at you, veering around corners, cars coming up behind you, beside you, red, green lights, pedestrians, bicycles. It's a lot to take in. Throw in some unexpected road construction and detours and I'll get a headache for sure. Too much fast thinking.

If you can, take some time now to rest. Welcome to BTG and read everything you can. There is lots of experience here.

Sandi K.

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Hi Elaine

Warm welcome to the site....

You are very early in recovery and yes its quite normal took me long time to shop in a supermarket on my own.

I dont drive so did have to rely on people to ferry me about in the early days...tho being able to drive after 9wks is pretty good.

Really dont over do it or that wall will keep appearing in front of you....(thats what I call the fatuge my invisiable wall)

take care rest, drink plenty liquids, and listen when your body tells you to slow down....

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Hi Elaine,

Welcome to BTG .....I have always worn sunglasses even when not needed ...hides the bags and red eyes !! lol

I cannot remember my 1st year so cannot help you...but do not let it beat you....it could be a form of fear or tensing up...

So try and keep calm and good luck ....keep smiling and treat yourself to somthing nice x (Chocs are good )

Love

WinB143

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Hello Elaine,

Welcome to BTG.

I had my SAH nearly a yr ago,clipped. I remember being at about your stage in recovery, thought I felt ok, thought I'd fold the laundry.literally that's all I did,fold laundry. Luckily my hub phoned and knew something was wrong as I couldn't put a sentence together. He came straight home from work to find me totally out of it,screaming in pain that my head hurt and that I couldnt see properly. He called the neuro ward straight away and talked things through with them. I had done too much and my brain had gone into shut down. I was in a lot of pain and literally had to sleep it off. I learnt then that I had to take things slowly. I still get very drained when I do too much. you really do need to listen to your body.

I also suffered, and still do sometimes in supermarkets. I only go early in the mornings. Crowds and lots of noise are also a problem.

I don't drive so can't comment on that!

Have you read 'a letter from your brain' ? It's in inspiration on the home page, ive recommended people read it a few times and your'll understand why when you read it.

Wishing you all the best in your recovery. Take things slow and don't be so hard on yourself.

SarahLou Xx

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Hi and welcome

you are indeed doing quitea lot so soon after your op

I wasn't coiled infact was NASAH but I too could stand all the colours and words in a supermarket. The very very bright lights and the high stacked shelves made my brain cry out for peace and quiet and I found it really disturbing.

My husband used to take me for little trips and gradually built the stamina and tolerance back up

Six months later I was fine with it but when overtired I still have trouble with visual and aural overload

On another point though have you had DVLA clearance to drive already/ I was months before they wrote and said I could drive again and that was after the neurosurgeon completed the paperwork.

If you havent told DVLA be aware that you could void your insurance if you do have a bump and havent declared your SAH

Sorry to be a merchant of doom but it is worth getting taxis or lifts off family and friends in the early days till all clear with DVLA

all the best

Di

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Hi Elaine,

Welcome to BTG. I had my PMSAH on June 17th, I am coming up to 9 weeks along myself.

I can't even imagine going into a store these days. Just thinking about it makes me anxious. Being around that many people, trying to process the sensory information, and making decisions! Yikes, decisions and I don't mix well these days.

I do drive these days, but I live on a small island with a population of 1000 people. We have about 5 stop signs and no stop lights anywhere on the island. Any driving here is bucolic country driving. I have to drive myself into the nearest town next week for a test. That means contending with all the Sandi outlined above...I anticipate that Sunday evening is going to include an anticipatory anxiety freak-out before Monday's driving.

I'm just trying to say...go easy on yourself.

The folks here are full of wisdom about what this road to recovery looks like. It is worthwhile to listen to them.

I have had to deal with myown frustrations and expectations. I have compared myself to how I was pre-bleed and every time I come up lacking with a burning desire to prove that I can get back to that, and soon. This has only led me to more frustration and exhaustion.

As it was said on another thread, compare yourself to how you were when you came home from the hospital and you will see how much better you are doing each day...even the set back days.

Drink the 3 litres of water, walk every day, go easy on yourself, watch the video Karen linked to, read the letter from your brain, know that you are on a normal recovery journey from an abnormal occurrence, and carry earplugs with you everywhere (that's what I do and I have been so grateful so many times...mind you, I have a 2 year old so loud noise is part of my daily reality).

You are not alone in these experiences...we can all identify.

Riane

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Hi Di,

Re: informing the DVLA, that's a very good point to mention, as anyone that's had a SAH needs to do so .... they also need to contact their insurance company and inform them too. I haven't heard of any insurance company increasing car insurance premiums after a SAH, as long as you've been declared fit to drive by the DVLA then they haven't got any cause to do so. If anyone hasn't contacted the DVLA, then here's the link that you need to click on for more information - then go to Subarachnoid haemorrhage and download the form. http://www.direct.gov.uk/en/Motoring/DriverLicensing/MedicalRulesForDrivers/MedicalA-Z/index.htm?indexChar=S

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Hi Elaine

I can identify with what you are saying.

I had my SAH 11/12/09, and was coiled 18/12/09 (due to misdiagnosis and then incompetence in taking down the details correctly at the hospital, putting my SAH date as 15/12/09…). I was in hospital a total of 10 days and then home for Christmas Day :-)

I got my licence back 18/02/10 (although I didn’t send my actual licence off, so I didn’t have to wait to get it back again ;) I just waited for the okay letter). I done a few short drives with my mum initially and then short drives on my own. I did try to go food shopping on my own but found it such an assault on my senses that I ended up ensuring I had someone with me during the first couple of months. I couldn't do it all myself, and didn't have the energy when I got home to carry the bags up to my flat!

I still find it quite tiring now, but that is on top of full-time work, gym, etc… but the lights in some of the supermarkets are overwhelming enough without factoring in crowds and noise.

One suggestion is that you could try ordering bulky dry goods online and getting them delivered, then you could find a smaller supermarket which you can take a short drive to, to pick up fresh produce? If you break it down into more achievable targets and work your way up (over months if need be) to the bigger busier store. Not that you ever have to even go back to the big brash busy store! You can write it off completely if you so wish.

As Riane suggested it is best to now compare yourself to how you were when you came home from the hospital, rather than trying to compare with how you were pre-SAH, as that is an unrealistic comparison. Your body has been through too much to compare back to the pre-SAH you.

It took me a good few months before I realised how far I had come, and how well I had recovered.

I recall at the start that it was enough in a day for me to get out of bed. Then that worked up to getting out of bed, having a shower and changing my pj’s! Then to having the shower and changing into normal clothes, with actually having to decide what to wear also… :shocked:

It is all about re-learning what you can do and what your limits are. You could keep a diary too, to help look back on how you were, how you felt and what you were able to do; to make the comparison to today. And you may not notice things over a day or week, but over a month or two.

Try to drink your 3 litres of water each day to help limit headaches, switch to decaf tea/coffee if you can, as this can help also, and allow yourself time to heal.

Take care

Kel x

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Kel you are so right.

Elaine, I remember the baby steps Kel describes. Having a shower was the main event of the day which wiped me out. Then having a shower and getting dressed. Then adding in a chiro appointment and so on. I actually remember the day I was building up to just walking downstairs to the kitchen. Remembering I would have to walk back up....

Go slow Elaine. Don't rush it. Be kind to yourself. Care for yourself.

Sandi K.

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