SAH - Waiting for that "day"

Hey lovely humans,

I hope you are all well and smiling :)

Does anyone ever feel like they are waiting for that day to wake up and feel "normal".

I'm post 4 months from a SAH and feel like I'm just counting down the days till I feel some normality.

Do things get better in time or do we just learn how to cope with what we have got?

Balance and double/blurry vision are the 2 main issues I have.

Has anyone got any advice?

Thanking you all!

xx

30 Replies

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  • You just get use to it and find ways to accommodate it you don't wake up and go back to your "old self", not something that works for me will work for you

    I am 16 years on

  • Thanks for you reply Bex!

    I guess we are all different when it comes to a tbi. I think it's so important to have positive feedback. It's nice to have something to aim towards during recovery 😘

    I hope you are having a lovely day! xx

  • A bit of both in that you do continue to improve normally for a while, and you also get used to the new you!

    Some things you do have to work at, I saw a Nero physio and I worked hard, I had no faith that it would work but I was going to give it good shot!

    Much to my cynicism I had a massive improvement don't get me wrong my vestibular system is still fried, but as long as I'm rested it's light etc it works well I can even ice skate, though not to hot on escalators or gravel, and the less said about tube trains the better!

  • Ah I guess I need to be patient then πŸ™ˆ I've been trying gym but it's super difficult... especially when my vision is terrible!

    Uh oh... I'm expected to commute up to London for my job in the next upcoming months :S god knows how that will go down! I'm sure with some practice I could nail it 😏

    xx

  • May well have different damage, to the balance system. I rely heavily on my sight for my balance, so double vision would render me fairly stuffed, I got stuck in a city park once on way to work, which was darker than I anticipated and though I could stand, I couldn't walk further nor walk back, what should of been a 5 min short cut, took 30 mins to extricate myself!

    Every ones is different I can skate/bike etc but don't much enjoy public transport to extent try everything see what works or not!

  • I'd contact Remploy for advice wrt work - invaluable help to me when I needed them.

    Also have you been on touch with your local community neuro rehab team ? They may have good advice :-)

  • It's so scary not knowing what my future recovery progress holds πŸ˜– it's all a waiting game!

    Oh wow! I'm so impressed that you can skate and ride a bike! I think I'd be all over the place on skates or wheels! The frustrating thing is I use to love running... now my legs just don't know what to do. So now a wobbly walk is as good as it gets!

    Maybe I should give the trains a go before I actually start work again.

    I'm wondering If balance can be worked on? Is it possible to retrain our brain to balance 😏

    xx

  • My balance improved massively with input from the Nero physo, the phase they use is neuroplacity i.e. Training/learning to use different parts of the brain to do a old task.

  • Probably....how about some yoga type exercises?

  • I was thinking about yoga πŸ€— I may give it a go x

  • lucyjenarog before my brain i worked with adults with learning and mental health issues, i was once asked " when i die will i be normal " ? which started me thinking what is normal.

    now what was normal to me then is no longer normal to me now, im on a new journey exciting but scary at the same time, you must feel the same about your sight.

    push hard to get it sorted, good luck and welcome to the club

    steve x

  • Hey!

    Thank you so much for your reply!

    You are so right! What is normal aye... everyone's perception of normal Is different.

    I know I'm still the same person prior to my accident but I'm having difficulty coping with the balance/eyesight issue. I pray that these are mendable 🀞🏽

    Lucy

    xx

  • Hi, I suffered a SAH nearly 14 years ago now and I found that it was a slow process but got there in the end. The one thing that got to me more than anything was the Frustration and we've all heard the - Patience is a Virtue thing!! Well I don't think I had any ha ha. It can be slow but every little step in improvement is a cause for huge excitement. My balance was pretty poor but it got better over time. I just felt I didn't have time to wait for anything. Looking back i could have saved myself so much anxiety and stress if I had just let nature take it's course rather than get frustrated with the situation and really trying to run before I could walk!! I know we all have to keep trying to move on but sometimes trying to move too quickly can hold you back!!

  • Hey Lynda,

    These are such reassuring words to hear! I'm so glad there was light at the end of the tunnel for you! Did you do any physio to help with your balance?

    I think I'm being too impatient! I'm 4 months post SAH so I have a way to go. I think I'm putting too much pressure on myself to perform how I use to. I feel trapped inside a body that can't do what I want it to haha.

    thank you so much for your reply xx

  • I too have double vision and balance issues but they do get better with time, in fact the only time I notice any double vision is when I remember I have it :)

    So stay positive and practice balance exercises and you will sooner or later get there.

  • Aww thank you so much Jacqui!

    I'm so determined to get through this :)

    It's an exciting/scary journey!

    I hope you are well today 😘

    xx

  • No actually I didn't my balance problems were down to the fluid crystalising in me ears. I was about a year before I was fully functioning in that department. My biggest problems were memory and concentration based. I had been married for 25 years and I actually asked my husband - Are you sure I'm married to you?? This is a standing joke now. I thought my daughter was a care worker who I found to be really caring and kind so the situation was quite unique to say the least. I had a chance of seeing my husband and daughter like they were total strangers to me. I watched a TV programme where Professor Winston was doing a documentary on school children been really bright but not been able to concentrate to he put these children on Omega 3 capsules just one a day and their concentration improved beyond belief so my husband went to the chemist and bought me a months supply. The difference in both memory and concentration was absolutely AMAZING!!!! I forgot things more or less as soon as I'd been told so I had a writing pad and pen with me ALL the time and within two weeks the pad and pen had gone. I could retain information nearly as well as before the bleed. I know in my case those fish oil capsules moved me on at a rapid rate and did me far more good than any of the other drugs I had been prescribed but that was just me. I know there is nothing harmful or chemical in them but the results were incredible. I had good days and bad days like everyone else but I do have a fighting spirit which I think really helps and I'm the sort of person that would never give up even though there were days that I found really tough. I did so well and now I have been diagnosed with a rather large Brain Aneurysm that needs intervention so Brain Surgery. I did feel at first - ALL that struggle and now I'm back to where I started and will be back to square one?? I had all the normal WHY ME stuff. Now I'm in a place where I just think - I've lost far too much time in my life and now I can't live my life how I would want to live it (No flights at all) so I want to get this surgery listed (Hopefully in July) get it done and start on the recovery period which will get me to where I want to be. It was a huge shock I can't deny that and it has affected my family terribly - At the moment they are wanting to Baby Sit me which I won't stand for. It's taken me far too long to gain my total independence which I will defend fiercely. I think they both think they are going to come in and find a chalk outline like you see on TV where they have removed a body from ha ha. I go back to Hull Royal Infirmary on the 24th June and see when my surgery is going to happen? I was really frightened when I was first told as this surgery is quite serious and my Consultant told me that ALL Aneurysm Surgery like mine memory problems are an issue?? I've already been and bought several jars of Omega 3 capsules ready for after my op. At least I have been there before so this time I am prepared and I know now I definitely won't be trying to rush things or make things happen that aren't possible. I know how difficult the after effects are and it's a fine line between you trying and then been disappointed which rocks your mental state. I used to go outside (I do live with no neighbours ha ha) and start shouting purely out of frustration - How STUPID ARE YOU?? ha ha. I was told at later appointments with my Neurologist that this was a really GOOD thing to do as he saw it as dealing with the frustrations at a regular interval rather than storing it and it getting you down a lot more seriously later down the line. It is really difficult though as no two people are the same and what works for one may not work for another. My best advice to you is to always TRY but not beat yourself up when you don't get where you want to be but just think there is always another day!!

  • Gotchaaaa! Is there any medication for helping with the crystals in the ears?

    For your memory have you tried the app "peak". I use it everyday to practice my memory skills. It's fun too ;) It seems to keep me focused.

    Aww it sounds like your family has been great support!

    So I have taken your advice and bought some omega 3 tablets! Plus I ate lots of salmon today ;)

    Please may you keep me posted about your surgery. I really hope all goes well. I'm sending all of my luck and love. You will be in good hands! ❀️

    xx

  • Hope all goes well on 24th June and that your op takes place without more delay.

  • Best to just take each day as it comes. The healing process is slow and as time goes by you will see changes, adapting to a 'new' you. Patience and being positive as best you can is all you can do. From what I have read and been told I will one day again be glad to be alive and will enjoy life again. I think when I get my driving licence back I can be more active especially as now I feel better compared to 6 months ago. It is amazing how things do improve but I have noticed that symptoms like fatigue or apathy do return momentarily. All the best to you and may your healing be steady but sure.

  • Hey lovely!

    Ah that's great news. Yes, staying positive is so important! It helps the recovery process :)

    I'm waiting to drive again too! It's a pain having to rely on my dad to take me places. I feel like a teenager again haha! When do you get your licence back?

    I hope you have a lovely Friday 😘 xx

  • I will re-apply at end of this month and so hopefully I will get the licence some time in August/September.

  • Wohoo! Keep me posted on how it goes. I will have my fingers and toes crossed for you 😘🀞🏽

  • Good luck with the licence but be warned it can take some time. 10 months in my case!

  • 4 years on, my husbands balance is still not good. This means his walking is slow & unsteady, but he can ride a bike with no problems. He struggles with turning to look round so we stick to cycle trails & keep away from main roads.

    We also have his ears syringed on a regular basis,(he wears hearing aids) & find this helps with the dizziness.

    He also does balance exercises most days.

    Stay positive!!

  • Hey :)

    Oh really?! yeah I have a trouble with multi tasking and walking haha! Stairs are very daunting!

    I will keep up my balance exercises. Practice makes perfect :)

    Thank you for your lovely reply xxx

  • I am 2 years on from an SAH. Yes, progress can be slow but sure and it's when you look back you realise just how far you've come. I still feel as if I'm lacking in core strength and hope it will return but balance and coordination is ok. You'll get there!

  • Personally I think after head injury people should retake a driving test. Reactions are slower and your thinking is foggy after (to some degree). I will never drive, I wouldn't risk it.

  • For me the recovery took months. I know it should take years and you can never fully recover. I had to go through physio to get walking which only took under a month. After that I felt I was pretty much back to normal. Few things I needed to do to get completely back to normal but I was back home wasn't in rush for anything to happen.

    First thing finish coming to terms with losing my dog in the accident and get another pup. This was only 2nd time in my life I hadn't had a dog. Honestly I just wanted to love another dog as much as I loved the dog I lost. A month after getting home I was ready for another dog and planned to pick one and agreed in October I would get to pick one. I got home from an occupational appointment to find my mum had got me a mum (actually my nan had brought him) best surprise ever and a big milestone to my recovery. I still just wanted to feel how I did before but it was good to be getting back to normal. I was still a bit unsteady on my feet so would walk far away from my pup in case I lost balance. Managed to take my pup walks, I think I did sort of wish his puppyhood away tho did still enjoy it.

    Neat was driving. I had told DVLA about my head injury went for eyesight test which has always been something I dread. I've always passed it but only just luckily my eyesight hadn't changed so passed it. I was allowed to drive for about 5 month before the DVLA decided I needed driving assessment. It was in area I'd never been let alone driven before so messed up. Now the annoying part I had to stop driving now I couldn't understand how someone can be safe to drive one day then the next they aren't. I had a few lessons to get out of bad habits then retook assessment and passed. I'm still on ESA as I know after being out of work so long I will struggle to find a job.

    Everyone has different recovery stories I've recently started going to a group meeting for people with head injuries and the bloke who set it up has had oppersite side of it to me. His effected his mind and nothing physical and sounds he has had it tougher if anything having to give his job up and fighting depression. Also forgetting basic things that you take for granted knowing like odd numbered houses on one side of road and even on other. He also lost confidence in driving and struggled with concentration. He still says he struggles concentrating on multiple things. I thought he mite be one who is quiet when driving as talking can be a distraction, but today I was with him when he was driving and he was making conversation and fine driving at same time.

  • Hey lovely!

    Thank you for your lovely reply!

    I'm so glad you recovered so quickly ☺️ there is hope hay! I'm 4 months In but still have a few problems left to work on! I'll get there I'm sure ❀️

    I have the same amount of love for dogs like you do! My dog has been my saviour. He gets me out the house and walking.

    Everyone recovers at different rates so you're ever so lucky to have had a speedy one! I'm so happy for you!

    Take care,

    Lucy

    xx

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