Hi from Matthew

[darxterone]

Hi Everyone,

 

I have perused this site ever since my SAH occurred on August 14, 2016, but have never introduced myself or participated in any discussions.

 

My story is I was home by myself as my wife was spending time with her grandmother and I was doing my business on the toilet and then out of nowhere it felt like something popped and like someone had just taken a sledgehammer to the back of my head. As the minutes went on I knew something was wrong. My face and arms were becoming numb and I could barely form words or move. Thankfully I called the cops as I knew something wasn't right and could barely speak but thankfully got my address out. I then passed out and didn't regain consciousness until 10 days later.

 

From what my family told me, the doctors couldn't figure out what was wrong with me and the first week in the ICU I was close to death. I had my last rites read to me although I wasn't conscious. 

 

Somehow, someway I finally regained consciousness after 10 days and slowly recovered the next 4 days before finally being released.

 

I want to go into more detail about my recovery, but I don't want to make this a super long post.

 

Being 3 months away from my 4yr anniversary, my biggest question/concern right now is my fatigue. Is this a common residual affect for someone going on 4 years post SAH? I often get tired after work and in the late afternoon and taking a nap helps me get my energy back. The problem though is my wife hates my need to nap. She does not believe that my fatigue/tiredness is from my SAH, she thinks I am just lazy and trying to avoid my family. We have a 3 and 1yr old so it's very tough for both of us, but my wife doesn't think it's fair that I take naps and she gets stuck with the kids.

 

I have tried to talk about it with her, but my naps pretty much enrages her and often leads to us fighting. I am trying to get her to understand that my fatigue could be related to my SAH, but I want to see if others are still experiencing this years post SAH. Just now when I told her I was writing this post she mockingly said "Oh, are you looking for emotional support cause your a big baby?"

 

Please, help me with understanding why I feel this way and how I can talk to my wife about it.

 

Thanks for listening,

 

Matthew

 

 

[subzero]

Hello Matthew and welcome as a member of BTG.

Also glad that you have been finding the site helpful in the years following your SAH.

 

Our members will make every effort to support and encourage both you and your wife.  

 

Firstly well done almost four years on. SAH really does have a life changing impact on the whole family.

 

Perhaps you could provide more information about your progress in the early months. We are here to listen and dont worry about how long it takes.

 

For example how was your employment affected?

 

With a very young family, does your wife stay at home or has she employment too?

 

SAH recovery is quite unique and everyone has many issues to contend with. I am sure you will tell us where your challenges have been.

 

From your comments, you highlight the frustrations which both you and your wife are experiencing.

Please both understand that this is not uncommon 

 

Your wife wants you back to your former self, and so do you... but you know she doesn't understand what SAH has done to you and you are upset because she doesn't seem to understand.  

 

It would be very helpful if like you, she could join the site ...we have a Carers Forum and even reading all forums would help her appreciation of how difficult things are for you.

 

It is important that you both try and talk this over in a constructive way.

Ask her to share all her concerns about your progress...and then you too tell her how you really are.

 

She needs to understand the reasons behind your fatigue and tiredness.

 

Please keep asking and we will do our best to help you both better understand your recovery issues.

 

 

Subs

 

 

 

 

[Skippy]

Hi Matthew

 

Completely agree with what Subs has said.  It's extremely hard for both parties as they are on opposite sides of the fence.

 

I can understand the fatigue thing too - I'm 14 yrs post SAH this year and I still get fatigued after a full day at work - especially if it's been busy.  I work in a primary school office, so I'm not walking 1000s of steps a day either.  

 

Your wife should definitely take a look on this forum - she doesn't have to create an account you can let her see through yours.

 

Please keep in touch and let us know how you progress - you'll glean a lot of information and comfort from this site.

[Super Mario]

Hi Matthew, great replies above. 

Has the need for the naps been consistent since you SAH or has it diminished then come back with a vengeance?

If it has reappeared  more than what it had settled to then I suggest you get the need to nap more frequently than you did investigated.

It is so easy to blame the SAH for everything that happens later and that is not always the case.

 

[ClareM]

Hi Matthew

 

I am 5 years post bleed and still sometimes hit a wall with the fatigue. It's worse after a busy day at work, not physical work but when I have to use my brain, particularly if a lot of multi-tasking is involved. 

 

It would probably help if your wife could read others experiences, so if she could look at the site it may be beneficial. Also do you maybe need to take a look at your working hours - do you need to reduce? If financially possible it may be worth considering, plus it would give you more time with your kids. Maybe worth thinking about, I've gone down from 41 hours per week to 21 - big drop over many years but something I should have done years ago.

 

Take good care 

Clare xx

[SarahLou]

Hi Matthew,

A huge warm welcome to BTG

Some great advise from others so far.

Firstly well done on posting this, it couldn’t have been easy.

As others have already said I think it would be a great idea for your wife to look in on this amazing site.

 

It’s almost 10 years since my SAH.

And sadly yes, fatigue still gets me bad. I had a career change after my SAH, now only working 21 hours a week. I’ve also tried changing my shifts/work days to see what works best. I now do my hours spread over four days with a rest day on Wednesdays.

 

For the first few years my head pains, temple pressure and fatigue floored me. Then I listened to advise from Super Mario and saw my GP as I felt this just could not all be SAH aftermath, and it wasn’t. I was diagnosed with other health conditions. Tough ones to learn to live with on top of SAH, but the diagnoses gave me understanding.

 

For me it was all about learning to adapt, adjust, pace and planning.

I had to stop comparing myself to who I was before my SAH  and accept who I was now, to remember how far I’d come since my brain got re-arranged.

I was never going to be the same as I was and that’s ok, I’m happy with that. I believe I’m a better person now, I have more patience, understanding and empathy. I don’t worry about the things I can’t change, I don’t waste my ‘spoons’ 

 

Yes, I still get fatigue but you do learn to accept that, kind of!

 

My best bit of advise is for you to read ‘A Letter From Your Brain’ and to look up ‘The Spoon Theory’ , it truly is the best way to describe to others what life is like after SAH. I still refer to them now and I still have copies of them on my bedroom wall, they keep me grounded when I’m being too tough on myself.

 

Have patience and understanding with yourself Matthew, you will get there.

We are the lucky ones.

 

Take Care,

 

SarahLou.. Xx

 

 

[Macca]

Hi Matthew,

 

Fatigue is a common bugbear with most of us. Brain injuries are different from any other conditions because the brain is your body's control box!  Nearly four years isn't that long in brain recovery times. Everyone is different and some take longer than others. I' m nearly ten years out and I still suffer with fatigue and i know I always will. The brain seems to take longer to repair than other parts of the body.

 

You may well recover, but it will take a long time.  What you need to do is adapt to how you are now.  Resting well is as important as working well.

You wife probably does not understand because she has never suffered a SAH herself and it is always difficult to explain to someone who isn't 'in the know.' It isn't her fault, it's just the way it is. 

 

Perhaps learn to adapt and take the kids from her when you are feeling well and up to it, even if it isn't absolutely necessary at the time. Have fun with them, teach them, go out with them and let your wife have some 'me' time. 

 

There is no law that says she has to have the kids all the time because 'she's the woman.'  Share the load with her, but do it when you are able and do it because you want to.  Being a parent is a two person job, so chip in when you can.  Offer to do it rather than be told to do it - they are your kids too, and Mums do a terrific job. 

 

Your wife probably had her hands full when she was supporting you when you were really ill. For her, it seems like she feels it is still going on and she needs some relief. And you need to have some sympathy with that view.

 

The biggest thing, though, is to talk to your wife.  Show her this site, as others have suggested, so she can get a better insight. I'm just telling it like it is. Some days you can do more than on others.  Don't use your condition as an excuse not to do things because you don't feel like it, because people see through that. You don't do it because you really can't on that day.  It's difficult, but in taking care of your kids, talk to them too, so that they understand what is wrong with you also.  Remember Frank Carson, the comedian - "It's the way you tell -em."

 

You have to be the new you, not the old you.  Your old brain is in the photo album with your old photos. Your new brain is in you now, with changes made that make you do things differently now, not better or worse, just differently.  Adapt, Matthew, don't let your visions of yesteryear torture your todays. 

 

Adapt and get on with life in the best way that you can, in the present.  Just do it a little differently than you used to.  Changes have happened suddenly so accept that and change the way you approach things before they change you.  Approach the battle on the same team, a united front, not fighting from different corners, from where you will end up slugging it out with each other.

 

 Look at life's road signs and navigate together.

 

Good luck,

 

Macca

[Doonhamer]

Hi Matthew

 

Yes we definitely have fatigue, and people experience it differently. 

For me, I forced a full working day by sleeping at home for 12 hours.  Now I have no job (contract ended) and my pattern is different.  I did a lot of physical work this morning and came down with a migraine.  I'm still worried about not being full-strength and I think that's why I got the migraine itself.

Sleeping is good!

 

Fiona x

[Majella]

I so like the use of the word "shutdown". That's exactly what fatigue looks like in me.

[Daffodil]

Fatigue Is so different to anything , it’s hard to explain unless you know it as we all do. It can creep up on you, then bang you find yourself losing words,balance,  cognitive function, appetite , the list is long and inglorious. It’s hard for families to witness  and they can often just want it to go away after time passes. ‘You’re better now right?’ ‘ you’re back at work why do you need to rest so much’ or the one that used to kill me each time , ‘ why are you always too tired to play?’

 

I can only say educate the entire family. Let them know this rest, this complete lock away from stimulation is like you placing yourself on a phone charger. Thing is you can’t ever reach 100% but when you are in that red zone of charge then there is a real risk of switching off...explain it like that, they’ve all experienced the phone suddenly shutting down , it does it to protect the battery charge, that’s what we need to do with our fatigue. Keep our batteries charged, don’t run low and make sure we power down regularly 

 

I'm 8 yrs on now, fatigue massively improved, or maybe better managed and known but my now older daughters are the first to spot if I’m too tired, I’ll be irritable and have no focus or recall, and will just tell me straight ‘ mum go lie down’ . 

 

Good luck . Don’t beat yourself up, you are doing the best you can. And you will play, do more , it’s just a time game.