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jo b

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I am a very active mum of 3 two of which being 3 yr old twins. I am very horsey, own 4 horses and ride/compete etc. I was struck down with a sah on the 7th of nov 2011. Came from nowhere while i was giving the twins their tea. After 2 attempts of calling an ambulance myself with them saying that nhs direct will call back of which they didn't i finaly called nhs direct myself who got the ambulance. felt really really awfull but didn't know how serious it was. Anyway to cut a long story short after angios etc had a crainiotomy on the 10th of nov. Was in hospital for over a month and in more pain than i could ever imagine. Now at home and still suffer with constant bad head. although has improved lots, so much so that i have cut down a lot of the pain relief. I am not one to take loads of medicine unless i have to. Maybe that's the wrong thing to do - don't know. trying to take it easy is v hard in our household. How does everyone else do it... And yes i am shattered all the time , grumpy and bad tempered and can't sleep v well. Apart from all the family stuff, horses are my life also and i couldn't bear the thought of not riding etc. Would love to hear from others on how long does it take to feel normal ish again and able to do the things that you used to do.

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Yes . they have helped loads. But i am strongwilled and probably too stubborn for my own good. I find it v hard to not do as much as i can. Have you fully recovered, and how long did it take? thanks jo

Edited by jo b
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That made me laugh Jo - sounds a bit like me! I have to say though, being stubborn & strong willed will only help you to get better as you'll never quit trying!

In the early days the best thing you can do for yourself is rest as much as you can & accept all the help that is offered, (easier to give that advice than it ever was to take it!!!). There's plenty time to be stubborn again when you feel a little better :wink:

Take care

Michelle

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Hi Jo

Welcome to the site and to the family.

Give yourself time hun - you're only a couple of months into recovery. One thing I (and many others here) learned, is not to rush it. Taking baby steps will lead to great leaps - running before you can walk may lead to stumbling.

Everyone recovers at different rates and, to be honest, for me it was staying mentally stimulated rather than physically that stopped me getting too down about things. I found that wordsearches and crosswords helped a great deal, but make sure that you physically rest as much as you can, get plenty of fluid and above all else, listen to your body.

The stubborness will help a great deal, so please don't change that. My hubby has often told me that my being stubborn was the reason I got through so well. Also the ability to keep your sense of humour and laugh at yourself now and again will be a great help. Let others help though ( feel free to lose the stubborness there :lol:). My doc told me to look at the brain hem recovery as taking at least 6 times longer than a broke leg - but like I said, we're all different and I think it also depends on which kind of surgery you've had. I was coiled so there were no physical effects to heal of the surgery, but the headaches were hard to deal with and also letting go of who I was and accepting who'd I'd become. I still have down days (this weekend especially) but I know I've done the hard bit by surviving.

Sorry, I'm rambling, I just remember how it felt over five years ago being so desperate to do what I could do before - the only advice is as I said before - listen to your body and take baby steps at first.

Looking forward to going through your recovery with you - we're always here.

Take care of you

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Hi Jo,

Welcome to BTG.

Don't give up hope yet - I had my sah on 8th Nov (3 years ago) and certainly would not have felt up to much the following Jan.

I also have 3 kids although they were a bit older when I had mine, (my youngest had just turned 8 ) but it has been hard work - no time in which to recover in peace! Not sure how I've done it, but I have and I'm sure you will too - just don't try to do too much too soon - it's so easy to be tempted, but may set you back - your brain needs to recover.

Wishing you all the best,

Sarah

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Welcome Jo, I am also stubborn and strong willed. AND I always think I am fully recovered when I have a pain free day. I had mine on Sept. 16th 2011. I also had suffered a stroke and later found out I had a small brain tumor. I am 54 ( I just read this and I am NOT 54 but I am 52 LOL) & I have other pain issue prior but what I can say is you must rest. I was so proud that I worked my regular work week for the first time last week and by the time I got off Saturday afternoon I have felt like the bolts holding my head to my skull are all loose, when I inhale I am dizzy so all day today I made myself to lay down, had a massage and rested more. I feel better now but you must really rest. I have to actually be flat on my back. I just wean off pain meds and started on anti seizure medications. I started having migraines everyday about a month or so after the SAH. I also just stood up one day and broke my foot prior to that one month mark. I had to tell myself that it was Gods little way of making me SLOW DOWN! The most help I have gotten has been through the reading the post on this site. Good Luck, be patience with yourself. I am so thankful I am not worse than I am and that is how I have to look at all of this. I certainly understand your situation is much different with little ones, as all our situations are different in so many ways. One thing I do see we all need is patience, drink your water and rest. Good luck. mary

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Hi Jo welcome to btg. Rest when you need to drink plenty of water and except the help offered. I am very stubborn also my neurosurgeon laughed and told my family how stubborn I was. Chat soon got to take my son to school in a bit. Jess.xxx

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Hi Jo,

Take it easy and relax when poss...easier said than done !!!!.. you have been through a lot ...so try and think happy thoughts

and sing it helped me !!!!!.....We are all different....I was in hospital from late July 09 to Dec 09 ..

Then back in to have shunt fitted in August 2010 for hydrocephelus !! I did not remember a thing until I had shunt fitted...apart from arguing with OT's and calling them witches ..lol .....Well My daughter told me this arghhhhhhh

They said I would never walk again and I should be put in home ..Thank Goodness for my hubby and daughter telling them...

No Way !!!

I am getting better every day... I don't overdo it apart from shopping and having coffee out (decaff)

Anyway Jo...Keep happy and smiling and Good Luck

Regards

WinB143 xx call me limpy ..lol

Edited by Winb143
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Hi Jo

Welcome to BTG! :biggrin:

It is a good start that you have now found us, and can get answers and support for the many questions you no doubt have.

As others have said, lots of water and rest. Grab some quiet time as often as you can, shut your eyes and relax. Even now, 2 years on, I get in from work and have at least 10 mins quiet time, and driving home from work I usually have a calmer radio station on these days or nothing at all... It all helps to relax the brain and allow it some time to recharge.

At the moment your brain is wanting the quiet time to heal itself, and that must be very difficult to fit in with your family.

I also stopped drinking so much caffeine. I only have caffeine occassionally now and I believe that has helped reduce headaches. I take my own decaf teabags to work and round to friends, so that I can still enjoy a cuppa but not feel so dehyrated afterwards.

I have read on here before that people have used the V-Pillow to help have a good nights sleep, and I never did buy one myself but apparently they are really good. I have a lavender pillow spray that I used a lot in the early days as I found it calming, and still use it now and again. It can also help to keep a notebook by your bed to write out the things that are troubling you, to help clear your mind for sleep - I have used that in the past too...

Good luck with your continued recovery.

Take care

Kel x

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Hi Jo and a big welcome to BTG, a fantastic lil family of 'head cases' !!!!

You're doing so well with it being so early on in your recovery, and with such young kiddies too.

My daughter was 10 when my brain got re arranged,she's 12 now.

She's been fantastic, I'm very lucky. She knows when I'm exhausted, lays me down, puts a blanket over me.

Although she does know fully well how to have a mega strop, slam doors and stomp around!!

As others have said, the main piece of advice is to really just learn to listen to your body, rest when you need to. Don't push yourself too hard and end up pushing your recovery back. Drink plenty of water. Any help youre offered with looking after the kids, shopping, housework etc take it, snap their hand off at offers of help as quick as you can!!

Have patience and understanding with yourself.

I wish you well with your recovery.

Take care and keep smiling,

SarahLou Xx

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Hi Jo, warm welcome to the site....

you are early in your recovery, all good adivce listen to your body dont push to much or you'll pay, drink plenty of liquids....& he!he! Sarahlou is so right any offer of help 'grab it'

take care

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Hi. thank you for all your posts. I know i should and need to rest. But it's almost impossible in this house. My family all live some distance away, and my other half has to work. Luckily the twins are now going to nursery a bit more. Theres also my daughter, I find it hard as i don't want the children missing out the things they normaly do. Also having horses doesn't help. Am i stupid battling on..... will it hamper my recovery? I do still have a constant bad head sometimes better than other. and get tired. but not as bad as it was....... Horses are my life and i just want to get back to them and riding.... does anyone else ride horses .... if so how long before they were able to get back to riding?

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Hi Jo....A warm welcome on a chilly winter's day!

I don't ride but my daughter rides and we keep Buzz in livery.

We bought Buzz in Sussex three months after my sah. He is a fine gentleman, safe and virtually bomb proof - I think he senses my brain injury, and acts very calmly around me, and this is why the deal was sealed...we bought him! I do think horses are psychic, so have you noticed any change in the way they act toward you?

In view of your sah (craniotomy) taking place in November, it is better not to rush things; and how are you going to wear a hat on those suture scars? It is absolutely great to get out in to the fresh air to feed and groom them, but sadly, not to be on horseback quite yet. There is an article I read yesterday - in the January edition of Psychologies magazine - about a woman who had a bad riding accident that caused a small mid-brain bleed. It didn't mention how soon she returned to riding, but when she did, it was cautiously and slowly. Have you any friends/acquaintances (in the horsey world) who could step in to help? Or could you put them in to short time livery; trouble is this can be expensive.

You have enough on your plate with looking after three children...heavens, it's amazing you've coped this far! Small steps all the way I'm afraid to say!

Edited by Anya
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  • 1 month later...

Hi.... Well been having to push myself as family life and young children does doesnt run on it's own. so pushed myself even more and have started riding again. must admit push myself too much sometimes and pay for it for a few days after. but oh so good to get on my horses again. gives me some sort of sanity back for a short while. I know it could be not good if i were to get thrown but i think i just had to do it or it would get harder to get back on the longer i leave it. would love to hear from anyone else that has gone back to something they love no matter what. sports ,horse riding etc. I mean is it ok to exercise. Run jogging etc....

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Jo am I correct that it is just 3 months into your recovery?

Ok I went back to double check that. I am 5 months out and the thought of bouncing scares me to death, I am not ready to try it yet.

I did not have to have any surgery but I was told I had just as much trauma as if I did I have a procedure done and it takes 3 months for that to heal plus dealing with your own side effects. What does your Dr. say?

I too would like that exact date of being well.

Good luck and glad you are continueing to improve. YOU MUSt take it easy and rest & drink your water or your headaches will be worse.

Edited by MaryB
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Hi Jo

i had my SAH last Sept so am still in early days of recovery - but like you with a young family to keep in check its difficult to stay still!!

My sport was boxing - and was told it was a no-no! i have however returned to the ring but just training - went back for the first time 2 weeks ago and it felt fab to put gloves on again and 'gently' spa! My trainer is brilliant though and makes sure I don't over do things. I think competative fighting will be out but some pad and bag work in the gym is satisfying - as is being back in the gym exercising - having spent 3 months sat on my bum doing not a lot depression set in and was so eager to get back into a training routine that I begged my doctor to give me the all clear to return :)

Luckily I have great friends who train with me and ensure I don't over things.

Just listen to your body and keep drinking the water .....

:)

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Another newbie here. I don't ride, but my sports are downhill skiing, cycling, golf and gym workouts, so I was pretty active pre-SAH. I am missing those activities plus my Friday night curling. I was told different things by all the all the different doctors that saw me in the hospital. Nothing other than walking for minimum of three months. Some said do what you feel up to, others said no activity for at least six months, and another said no strenuous activity for at least a year. so?? What advice do you listen to? The little voice in your head. I discovered through the physiotherapist that I was guarding my neck and head by limiting movement. She asked me why I was guarding and causing all kinds of additional balance issues plus tension pain. I said I was having pain from the residual blood draining and breaking down but also was scared of moving my head should another bleed occur. Well, not likely she told me. Ok then. I am doing exercises to correct this and feel so much better already... I plan to take up fly fishing this year. It is theraputic for breast cancer patients too, which I am. I guess what I'm saying is do what you feel is right for you. Maybe see a chance to experience something new that you've always wanted to try. Give it a go, but listen to your body and inner voice. Don't let the fear rule you the way I was muscle/head guarding.

Above all, believe and have confidence that you will get better. Really.

Sue

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Hi All:

Jo I would say to take it easy as best you can. It is still early. I am at 6 months and don't feel ready for a whole lot of exercise just yet.

Mary- Can you ask the NS about lifting and how much. I struggle with the groceries and how much to lift as well as at the gym. My NS told me 6 months but I don't really feel all that strong yet. Funny thing about list of questions for the NS. I saw him twice and had a list of ?'s both times. He didnt like it too much and pawned me off to the pain clinic. Thanks Doc!

Sue- Funny you mention about the guarding the head and neck. I did that for my first three months. I felt alot of tension and weakness in my head and neck and felt if I turned too much that my head was gonna fall off! The neuro told me to relax and move normal and it went away after a couple more weeks.

Let us know how it goes Mary!

Regards,

David

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I haven't worried about lifting stuff but I know my neuro said not to weight lift straight away when I joined the gym. I swam once I got the all clear but soon found myself too tired to do all the other stuff so I stopped going swimming. I know I need to do something so I plan to walk every day increasing it each day.

I still guard my head & am scared stiff of banging my head at any time. The snowy weather scared me solid as I didn't want to slip & fall backwards. I have skidded a few times in the house but I always protect my head. I know my clips are secure but its the thought of what could happen to my skull where the staples were!! Good to know I'm not the only one though!!

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