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Hi All,

 

So here I am coming up on 2 years ago having my SAH followed by vasospasm.   Quick recap...8 days ICU 2 weeks rehab then home..ended up in rehab because I couldn't sit up due to core weakness...balance was also off, somewhat better but still a bit off... I have some vestibular issue which probably contributes to my balance. The core weakness seemed good enough I guess.

 

So I recently attempted another round of 6 weeks of Physical therapy which began for back pain and quickly came back to my core weakness.  The core weakness seems to be contributing to my back pain..

 

Anyone with this going on?  I don't really feel any difference in strength after 8 weeks of exercise.  I will be getting an injection to try to help my back pain and been referred back to neuro.   Truth I really didn't even want to open this up again and look at it but am going to do my best. 

 

Any thoughts or experiences? 

 

Thanks

Jean

 

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Hi Jean,

 

My core and balance post SAH was dreadful, i had lost all muscle tone, massive amount of strength and weight and I used to just topple over and also had lots of unexplained back pain. My answer was two and a half years afterwards I got a puppy...not maybe the best plan I know but I already had a older dog in the house but one which was quite happy if I didn’t walk him, much happier to snuggle up on sofa, whereas puppy meant I had to do daily long walks, if not twice. 

 

I ‘engaged’ my core when walking and always took my stick , even then I used to fall, so much that both my dogs know that if 8 drop the lead they have to stand still ... it became a training point but I built my stamina, my core, my distance and it’s been massive therapy. Also it helps to just give me quiet brain time. 

 

I cant do hard high energy exercise, swimming is tricky , yoga out now for any inverted moves so walking has been brilliant. 

 

So much so that last last year I tried paddle boarding and guess what? I can do it and that’s great for core, and if I get tired I can sit or kneel...so massive progress on that front. 

 

Just in the last month i have I have stopped taking my stick on my daily walks unless I feel wobbly and I probably now walk 3 miles each day ...But that’s 7 years since my event...some days I am still off , and can’t go as far but progress is still to be found. 

 

Hope you find what works works for you . Be curious and don’t look in the ordinary places for what helps. Walking can lead you to some amazing views. 

 

Take care

daff x 

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Hi Daffodil,

 

Thank you so much for the words of encouragement.  I feel like I am doing well but I do know the topple over feeling.  I am so encouraged by the fact you are still improving and still working on improving.  I get stuck sometimes....some days....I know I need to keep going and working on it...The good weather will help.

 

A dog is great as they have to go out rain or shine haha...I live near a pond and am hoping to see the owls that are reported living there, a bit of a bird geek I am :)

 

Thank you again...I tell myself everyday "I am a survivor"  

xxJean

 

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Hi Jean,

 

I was bed bound for so long I had core problems, still do.  I was told I'd never walk again.

 

Started taking 2 steps now up to 500/600 yards then back aches,  I went swimming  but I could only swim under water as botty floated to top .

Not being flippant but it was good to stand where the water squirts out and hit my back ..was heaven.

 

Used to hang on and kick legs out which helped also.

 

I saw a comment on somewhere a man said he had to stand for a while and my back ached reading  it. 

 

My aim is to walk around a supermarket as I have to go in chair for long walks ..Good luck and never give up we will do it no matter what others say. I was really written off by my BI Team by a man saying to me "what makes you think you will walk again"  Ever wanted to say rude words to them lol.

 

But it helped as I wanted to prove him wrong and you must prove all doubters that the human spirit can do what it likes.. See you have helped me as I'm getting off my bum and a walk around the garden xxx got 2 seats if back goes  xxxxx 

 

Good luck Jean and remember you can do it  xxxxxxx

 

 

 

 

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Thanks Win,

 

I will keep up the fight and I know I am lucky as I can get up and move about and even go to work a few days a week...Sometimes I pay a price for it but...worth it to be living my life...Actually have a vacation planned next month...I always get a bit nervous when I go away but I will go..and I will have some fun :)

 

Your recovery is so inspirational and the good humor you share with us all, well I love it...

Who ever said to you "what makes you think you can walk again" perhaps is in the wrong occupation.  Hope is what gets us all up in the morning, it is what makes the a rainy day bearable...because we hope it will be a good day and that the sun will come out...

 

Hope you enjoyed your garden walk and thank you for the words of encouragement...needing them xxx

Jean

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Jean, like you I have problems with various things. Locally we have a group called going steady 

 

It's a chair based exercise group, at 57 I'm the youngest. We do these exercises and at first they seem way too easy to look at.

 

Oh how wrong was I. But, given it's only and hour doing this, it really increased my abilities to be stronger in stance and balance.

 

Being able to sit down and exercise was brilliant. We use the exercise bands of differing resistances. I'm now on black.

 

With these bands you can do so much, stretching, pulling and many more of the core exercises to strengthen your tummy, arms and legs.

 

You can also use them in a rolled up tube to help with your gripping too. Although these bands are only 5 feet long they do wonders for your body.

 

Give your local rehab unit a call and ask if there are such groups in your area?

 

Secondly and much more fun is exercise in a swimming pool, it's a lot harder to fall over and cause injuries.

 

Water resistance is surprisingly good at core repairing and strengthening too, combining both may offer a very nice end result. 

 

The nice thing about both of these is it appears to be a lazy way to exercise but take my word it's not, but I feel great after 36 weeks!

 

Mike

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Hi All,

 

Update on my Neuro visit.  I went to a different doctor than the doctors that had been treating me initially as my insurance leaves me with a large out of pocket balance.  I figured this was more follow up with questions about my core strength and increasing numbness / tingling on what I thought was not my stroke injured side.

 

This doctor was thorough, getting all the records from my first hospital, making the visit worthwhile.  

I was floored with the information he gave me.I thought I had bleeding on my right side affecting my left...he told me it was written in my record I had bleeding on both sides, explaining why I have so many crazy symptoms on the other side of my body.  Geez, I was thinking I had another issue going on like Parkinson perhaps, it was making me very worried.

 

He also told me to keep taking amitriptyline which he says helps with these symptoms I have, only 10mg.  I was trying to wean off.  I felt very foolish not knowing what happened to me...wanted to cry and I am not easy to cry.  Of course he didn't make much comment as to why I hadn't been given better information (probably wouldn't have remembered) but my husband would have.  

 

Soooo anyway, i am happy that I know what is going on...always better to know right?   

Still exercising for core strength, seems the same...Had the steroid shot for my back, ouch, hoping that helps and moving on.  So glad to be able to come here tonight at 3:10 am and vent....

 

xx

Jean

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Hi Swishy,

 

Sorry that that your appointment wasn't as routine as you'd thought it would be and I hope that the new information helps you more than anything.

 

Good luck with the core strengthening and digesting the news,

 

Sarah

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Hi Jean :) 

 

So pleased your different Doctor was so thorough and even though it has floored you, understandably, it's good to know exactly what has gone on and have it explained properly to you.

 

Please dont feel foolish not knowing what had happened to you xx I think they only tell you so much. My notes went missing, so had to pay to get copies of everything. When my husband and i read through the notes, like you, there was so much we had not been told about.

 

Great news you are sooo happy knowing what is going on and hope it has taken away some of the worries. Ouch!!!  indeed for the steroid injection in your back, really hope it helps you with moving on.

 

Jean, bless you, hope you can now get some sleep and peace of mind, thank you for sharing. You are very much part of our BTG family xx

 

Take care

Love Tina xx

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Aww thank you both for your responses...I feel like you all have been so supportive for me and so many others.....this is a family I would have never dreamed I would be part of...I am so thankful for having searched you out.

xx❤️

Jean

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Ironically its a family nobody really wants to have to be a part of but that's what makes us all the more special :D

 

Glad that you have had the answers to so many of your questions and have been given more information.  My GP told me that my aneursym was 2cm!!!  It was actually the clot around it that was 2cm the anni itself was less than a CM so it's always worth talking to that certain someone who can give you the correct information.

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 Listen to all on here Jean as some days I come on feeling doom and gloom and I realise how lucky we are.

 

Just to have a site like this to let off steam and tell your worries and shed a few tears even while typing,  It is a great site  and I can tell them about my smells  lol xxxx 

 

Glad all went well with you and Doc was good.  Notes at the ready also Wow!!  He sounds impressive.  

 

Now relax and have a rest , oh did you tell him about my core weakness lol j/k as always like to finish on a happy note xxxx Smile xxxx

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Thank you all for just the supportive words I needed...even in the middle of the night :)  Feeling better as I take this in realizing I do want to understand what happened.  In reading that I am not alone in not getting the full correct news I have to remind myself that this is a complex thing we share here and we are all lucky to be here and also have had some great medical teams to thank for it.   

 

I am off to a vacation in Mexico early next month so I will...I must...get back to my happy packing and listening to some fun Spanish music which always makes me happy...

 

xx

Jean

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Best wishes Jean.  I have bulging disks in my back and am always told to work on core strength too.  Doesn't seem to help much.  I just have to avoid jarring it and sometimes I still get taken down by something small. like bending to tie a shoelace.  The two things that helped me the most was losing weight and using an inversion table to stretch the back out.

 

Feel better and stay happy!

 

Chris

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Swimming is a great way to help strengthen your core. In my early day I spent a lot of time in water. Why? It takes all of your weight off of your body, allowing you to have some pain free moments.

 

I use a pool that is about 35m long, I pretend to run, literally. So instead of swimming you're in the upright position, it's a little harder to do but boy it worked for me.

 

More benefits are that you can't fall over in the water so to speak. Use a flotation aid to give you some support too. Start slowly then build up doing a whole width at first then a length.

 

If you find it helps, why not join the aqua-exercice group? It's from there you can join the gym again super slow starts..

 

If you want to know what happened with you on your night ask for a copy of your medical records. You'll get them and can read everything from them as well as keeping you informed.

 

Mike

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Hi Mike,

 

Thanks so much for reaching out to me :)  I can look at my medical records on line and I did spend a great deal of time trying to research it the first 6  to 12 months after my events...I don't think my head was clear enough at that point to take it all in...The records include every MRI, every blood test, everything from my 1st hospital admit, through my days in intensive care and then on to my 2 weeks in rehab...I do have it on my mind to try to go through it again, perhaps making notes (perhaps a timeline) it seems a bit overwhelming for me when I think about it...I must get to it..  

 

Ah the exercise thing...all good advice for sure...I did swim (well exercised in water)...did it for my neck as I have 3 herniated discs in my neck...I don't know that it did anything for my neck but it was good for the rest of me haha...trouble being I am not close to where I could afford the pool access ..also working the 3 shifts a week that I do takes most out of me...

 

I am on my feet throughout my shift and often walking up and down hallways in and out of patients rooms...  hmmm maybe some excuses here haha...I continue to do the exercises PT showed me and I think there is perhaps a bit of improvement...I don't feel like I might fall over when picking up something off the floor...

 

I think perhaps I am in a bit of a rut at this point...I do what is expected and will accept invites for lunch etc, even went to Mexico...but truth I am pushing myself, I would like to say no....sort of feel I have lost some of my zest for life...makes me sad as I was the one always thinking of taking a trip planning a get together...I wonder if my friends notice?   My husband knows, I think my kids do as well...not sure...anyway...thank you again Mike, we all have our mountains to climb...some days bigger than others...

 

Jean

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Jean, I know about that missing ‘Zest’  and I don’t think it’s all that unusual to hit a rut especially when something else drains your energy.

 

Over this last year since my mum passed   I feel I’m doing so much to just get through the day and that whilst every day feels fortunate to be here that there is a lot of just getting through it. My pacing is hard to juggle teen kids, working, home and somedays there’s nothing left to be honest and I’ve certainly not felt that joyful whilst learning to adapt to my grief and accommodate the addition and toll of that. 

 

My only advice is keep looking and exploring at what brings you some peace, some happiness, some joy. Be curious to new things, It’s there but it may be found in very different places to that where you found it prior to SAH. Exercise and strong core is best found through walking and maybe incorporate stretches for arms etc whilst on shift?  

 

I have also found my new found love of gardening also helps my balance, when I started post bleed I would often end up lying in the bed so to speak. Now I rarely fall but I make sure I have plenty of flowers so at least I can stop and smell the roses if I do . 

 

X

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I've checked my sites that I use very often for information. In my usual search engine I typed in 

'armchair exercises' I changed the search method to videos. Very similar to what I was taught by my instructor.

 

Having spent 26 weeks rehabilitating I found them very easy on my body. I also use an exercise band to as it adds tension, but is generally gentle on you.

 

Reading your records is a way to learn what has happened to you, but asking questions will give you better answers!

 

I have my highs and lows in quick succession, making me feel like I'm a yoyo! How do I get over this? I train my brain in the most different ways possible.

 

Shopping, Arithmetic, studies, posting on various forums, social, legal and informational too.

 

I have routines that are quite restrictive at times, that's until I can complete them repeatedly and safely.

 

I look for crazy ways to occupy my damaged mind so much so I've learnt to retain, retrain and use my brain in a totally different way to what is expected of me, especially at my level of damage. Which is significant by the way.

 

But I admit I love the things I do, I get so much out of life now, much more than I ever thought possible.

 

I'll respond with more information soon as its teatime. My curry calls me... (I cooked it from scratch). This is my way of keeping busy and happy...

 

Michael 

 

 

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1 hour ago, Daffodil said:

I have also found my new found love of gardening also helps my balance, when I started post bleed I would often end up lying in the bed so to speak. Now I rarely fall but I make sure I have plenty of flowers so at least I can stop and smell the roses if I do . 

I've found a love for gardening in the last 18 months as I can't exercise like I used to (gives me a massive headache) so gardening is a fairly light exercise but also very therapeutic.

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The phrase about losing your zest for life really encapsulates how I'm feeling right now, but couldn't vocalise, so thank you for giving me the words.

 

I'm still trying to come to terms with no longer having the ability/stamina for taking part in my old hobbies and although walking/nature watching & photography are replacements they are reliant on good weather (and a husband/friend being willing to do the driving). Combined with a new job that I'm struggling with & a pay cut it all feels too overwhelming.

 

I'm hoping that our forthcoming holiday will help kickstart things but as ever coming on here reassures me that I'm not alone in how I'm feeling, while at the same time feeling sad that others are also struggling.

 

good wishes to all 

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Thank you all and Sarah you are not alone in how you feel...

 

I work hard to keep up beat , I do...but it catches me now and then and drags me down like a rock...Today I went to try and buy myself a couple of summer shirts...it was awful...dressing and undressing, no seat in the dressing room and after 4 articles of clothing I was feeling "very swishy" sweaty and defeated...

I will persist....only life I have and I am going to do my best to march on...

 

Jean

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SarahLS  a word you should take onboard is acceptance. It's an important word for you.

Your old life is now different from the one you now live. Once you accept you are different your mind starts to respond to your new way of life. It took me nearly 8 years to do this.. but boy what a new life I have now....

 

A new word can be restart. Take a few aspects of how you lived before and try to adjust them to how you are now.

I myself was caught in this trap for a very long time. Over the past 18 months my life has blossomed to something that I thought couldn't happen again.

 

Reading some of my posts, I share how I do things each day. I used to drive a lot! 15 times the normal average minimum. (10,000 miles)

 

 

 

Swishy  you say you struggle with changing in a dressing room! Adapt, how? Why not use a camping chair that folds up into not a lot of space? Cost is nominal too. Easy to carry, you can also ask for one to use, shops are required to provide one! Although not many people know this...

 

Second option is a walking stick chair see here  https://www.co-opmobility.co.uk/mobility-aids/walking-sticks/walking-stick-seats/

 

For you my word is determination. Look and improvise. There are many solutions to the many problems that are sent to test us. Just ask and sometimes someone has solved the problem themselves... just a thought here... 

 

Mike 

 

 

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I have  2 words when we are getting over this nasty thing that Docs do not put into practise and it is Human Spirit xxx

 

I think if you can do a little bit (She says sitting in chair) to help yourself and not be deterred by what you have been told you will never do again.

 

Walk,  Always be as was (Hydrocephalus head) Not the same person, put her in home.  All said by OT's who did sweet nothing for me.  

 

Didn't wonder why I couldn't do things just gave up on me.  Didn't look what was stopping me doing normal things good job I remember a poem my Sister taught me when she looked after the elderly and she sang to them. 

 

The poem was  "Crabbit Old Woman"  I cried when she read it to me and every time I read it I think of OT's treating me like that woman makes me angry so remember the Human Spirit "  is what gets us through the  horrid time xxx All be positive as I will one day walk the whole of Sainsburys  what an aim in life  !! ha xxxxx

 

 

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