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Sallios

Six months down the line and struggling

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I’m just six months from SAH. At first I was so grateful to be alive (I still am of course) that I was determined that nothing was going to get me down and be grateful for every day.

 

Trouble is gradually every day life and problems build over time as they always do. Now I’m becoming so conscious that I can’t do what I used to do.

 

I used to be a driven personality never stopping always determined to get things done straight away etc not wanting to waste a moment.  (I also run a business.) Maybe being driven was why I had the SAH? Now I can’t be bothered. I’ve lost my mojo.

 

I never used to sit round watching telly but everything now seems such a massive effort. I still try to walk every day though but I have to make myself get out. I know I’ll never be the same again and really shouldn’t compare the old me to who I am now but just now I’m finding it hard not to feel as if I’m living in a box.

 

Living with the fear and the constant don’t do this and that in case something goes wrong. My confidence which used to be so good is gradually eeking away. Not helped by silly things being said like my

mum asking my son if I was OK to use the coffee machine in the kitchen.

 

I don’t like this feeling so I finally made an appointment to see my GP. I don’t hold out much hope as generally I’ve found that GPs don’t know much about SAH and only tend to give platitudes. 
 

Sorry to rant on. It’s just where I’m at at the moment. 
I’ve had almost back to back virus since the beginning of December and the one I currently have has such a bad cough that I’ve been scaring myself thinking I’ll burst something. Does anyone know if SAH messes up your immune system?

 

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Hey there

 

After my SAH I went through exactly the same things as you're going through now.

 

I was depressed because I couldn't do all the things I could do before - also ran (and still do) a business with my husband - now I also work full time in a very busy school office. I'm in 14 years post SAH in August.

 

I also found that when I was feeling so low, my immune system went to pot and I got more coughs and colds in the first year after than I'd had in the previous decade.  Coughing now still gives me headache and its the worst part of having a bug.

 

The biggest battle you'll face right now, beside the fear, is letting go of the old you and accepting the new you.  You may have limitations that you didn't have before and it's probably driving you mad, which isn't helping with your state of mind.  Don't be offended by someone asking if you're Ok to use something that could potentially hurt you - my husband ran my baths for me for over a year as I couldn't gauge the temperature of the water very well and could have easily got into a scalding hot bath.

 

I have the privilege of seeing this from both sides - my husband had a motorcycle accident 4 1/2 years ago that left him with a mild brain injury.  He was very active before - played football 4 times a week, was always pottering around doing something.  After he, like you, did nothing but sit and watch the TV for months. 

 

I was the same as your mum and wouldn't let him do anything that involved using anything like the kettle, the oven etc - not only in case he hurt himself but also in case he forgot he'd put them on.  She's worried that's all - show her you can use it.  Get out of the chair and go and put it on!

 

Be kind to yourself, you (and all of us on here) have had a near death experience that will have an effect on us no matter how severe the bleed.

 

Someone once said to me "Only you can let you be depressed" - someone on here described him as my living angel - ironically enough he passed last year from a brain bleed.

 

Continue to "make" yourself get up and do something - make the walk a little longer each day, for instance.  Fresh air and exercise will help keep you healthy and help your body fight off infection.

 

Put the coffee machine on before anyone else does or asks.  Take back a little bit of your independence each day, there's only you that can do it.

 

If the feeling down continues, make an appointment to see your GP and asked to be referred to a therapist.  I did, and it was the best thing I ever did.  I'd go so far to say that the therapist and this site went a very a long way to saving my sanity and my life.

 

 

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Dear Skippy

Thanks so much for taking the time to reply. It’s reassuring to know that others either feel or have felt the same way. 
 

Working through the cards we’ve been dealt is tough but it’s good to have the support on here and the most important thing is we are still alive. 
 

Thanks

 

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Hi there

 

I think its  a common thing I mean its our brains that have been effected cant stick a plaster on it and say there-there..

 

I am SO pleased you've made an appointment with your GP maybe you could see about councelling such as Headway hear great things about Headway or councelling in general.

 

Think Sami has said it all really so good luck with the GP just say what you've said here tell it as it is...

and rant away we all know and understand.

 

take care.

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Hi Sallios,

 

Six months is still very early.  Time is the biggest healer.  it was two years before I started feeling even the slightest bit better.

 

Take the time to reappraise what you can and can't do.  You will revise it as you improve.  Change has happened suddenly when previously it would have happened gradually with age. You can't turn the clock back but you can start to do things your way and control the future.

 

Have a go at starting to think in a positive way. When things seem a bit negative, turn the flip side and think of it that way.  It will start to allow you to deal with the changes. What you do will be in a different way - not better or worse - just different.  There's nothing wrong with that!

 

Don't beat yourself up about this, what you have dealt with is an ordeal that you have survived, so pat yourself on the back and start living in a more positive way. That is the best way to pay back the medical team that gave you a second chance, and the family and friends that supported you and continue to do.

 

Good luck,

 

Macca

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Hi Sallios,

Very good thoughts from all those writing before me...To repeat Macca 6 months is still very early...

 

I think what happened to me was thinking some how this brain injury was going to be like a bad flu....in other words felt horrid but with in a few weeks maybe a month I would be back in the pink...but our brains heal and reroute and it takes time as many here will tell you.

 

I often see that I am still healing when I think back to last Christmas or last summer and realize that hey I was better this year...I will hit my 3 year mark end of April...and yes I continue to improve and I in my 60's so perhaps it is even slower for me (I don't know)...

 

Try and have faith that time will make a difference in two different ways...your brain is working to regain and restore everything it can and time also helps accept the things that become part of the new us... I still have a constant feeling of walking on a boat...my hands don't work well with each other making me drop things .... but my head is clearer.... and I now anticipate dropping things with my right hand choosing my left hand more often.

 

Have faith realize those who move things out of our way are trying to recover as much as we are....There lives were turned upside down just as ours were...

 

I did go for some counseling and it was helpful working on breathing through stress and positive thinking....I slip, haha trust me I slip but I am still improving as I said...We are survivors and some days those words feel empty, I know, but each day is a gift...and again we are survivors...

 

My best wishes for better days,

Jean

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Dear all

Don’t know where I should put this but I’ve noticed that the replies I put on my thread thanking those who’ve taken time to write aren’t appearing. I’d hate for anyone to think I’m not grateful for their input. I know entries are moderated but I didn’t think I’d put anything inappropriate. So to all of you who’ve contacted me on the thread I’d like to say a big thank you.

Sally

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Sally

 

hope your doing ok we all know and understand....

 

take care

 

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Hey Sallios

 

Don't worry, you haven't posted anything inappropriate.  Looking at posts that need moderating, I can't see anything from you waiting.  It may be that you hadn't clicked on "submit reply" before posting another response.  We know you appreciate the answers and advice, so don't panic :-) 

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Hi, 

 

Thought I'd share my experience with you.  I am 66years old. I didn't know this at the time but when I had my SAH in 2016, my brother was told I had only a 20% chance of survival. 6 months down the line, I was just about to be released from neuro rehab.

 

I was able to walk about 20 yards but had to stop for rests several times. I was still partially wheelchair bound. This was not acceptable to me. I forced myself to walk at a very slow pace for an hour a day. I fell over a lot.

 

My progress was further hindered when I needed a new hip. 

 

That was then. Now I am walking between 3 and 5 miles daily. I have walked 9 miles a few times. I am back at the gym. I am back in karate. 

 

I still have limitations. Fatigue is a problem at nights. My kicks in karate are appalling. 

 

Nothing comes easy but it can get better with determination. If I may give you some advice or would be - never accept your limitations or they truly become your limitations. The future will be brighter.

 

My sister in law accused me of being too stubborn for my wheelchair. Get stubborn. Get better. 

 

Mike

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Dear Mike

What an achievement well done. Very inspirational. Congratulations on being back at the gym too. 
Thanks for replying 

Sally 

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Wow Mike -Just wow!  I love your attitude, your grit and your perseverance!  Well done indeed sir!

 

Thanks for sharing this, I hope it gives inspiration, I'm sure it does.

 

If anyone reading isn't up to this yet, just bide your time, with the right timing and the determination not to give up, we can all improve I think to our own level. The message here I think is just be the best you can be - but in your own time, it isn't a race!

 

Macca

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Agree with this, you will find new limits sit with you but then stretch them , then stretch them again but it’s a slow thing. But yes be curious about what is possible now, and notice what can you do today that you couldn’t yesterday. It may be the smallest success but count every single one and then push for what else is within reach but importantly without breaking yourself or your spirit.

 

I used to keep a diary about what I had managed to do each day and set little targets too, I would then write what I had done and say how I felt. That list used to include get up and get washed and dressed myself, I remember the first time i managed to ‘self shower’ again...that was a huge moment for me and I appreciate every shower I taken since.

 

I can charts lots of regains in my nearly 8 yrs on but also lots of acceptance of change too...well not quite acceptance if I’m truthful, I still miss my energy and the ability to Be in very loud places but I live in hope.  But progress was not swift and whilst Being able to regain things is amazing and takes a lot of time but some things may forever remain changed, i then like to see what I can then do within those new limits. Always be curious, it can get you to places you never thought.

 

Go steady 

 

 

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Hi Sallios and Mike,

 

Sorry I haven't replied earlier,  Look back not days but months and see how far you have come.

 

When I woke up I was going to die and then I found this site where people laughed about head exploding and I realised there is a life after SAH, also hydrocephalus kept me in cuckooland.   I had a shunt fitted and was back to my old self again.

 

Couldn't walk but I was alive, Came on here sang to everyone even if they were in mid conversation I'd break out in a song.  I was a pain in the butt.

 

Still trying to walk but back goes when I go to far.

 

Any problems share them on here this site is so good for us and even people that do not really understand what we have been through.  So a smile on face and a song running through your head (Happy ones only).  Good to be alive isn't it xxxxxx

 

Both be Well and when down come on here there is always someone to read your post and to know we are not alone is a good feeling  xxxx

 

 

 

 

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Hello Sally!  I meant to write some notes on this before, and I forgot again (!).  

 

So amazing to see what you're saying at 6 months.  I would like to try and imagine at the difference between 6 months and today - which is actually 1 year.  There are huge differences.  Honestly, I could hardly believe it.

 

All the other people posting have been great - what's good and what's bad - everything that we need to cope with.  

 

I won't believe that 1 year is going to be the end of my improvement, this is still going forward.  For you at 6 months, you've got plenty of improvement to go.

 

Now I must go and write my 1 year summary... this was supposed to be today, but I haven't met my deadline? I know I can improve this!!  I must do this over the weekend ;-)

 

Fiona.

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