All change again

[Mum of five]

Hi all, I hope you are all well?

I am like a bad penny that disappears then returns once in a blue moon to try and make sense of my own muddled mind through everyone else's experience/advice

I am struggling to make sense of my current level of "togetherness". I am two and a half years post blip so not a new member but in the last six months or so my mental state has confounded me.

I have big holes appearing in my long term memory as well as my appalling short term. I forgot where the saucepans were the other day but they haven't moved for years. I couldn't remember a birthday ( that's a major anomaly for me). I forgot father's day for my father in law but bought presents for my husband from our children. I am becoming word blind, my spelling is shocking as is my grammar.

 

My balance is shot and I have the attention span of a gnat that's just hit your windscreen at 70mph but more importantly to me I am devoid of all fluffiness. I feel nothing, long conversations bore me, little to no empathy. In a nutshell I spend my days being scratchy.

I'm not a bad person and I don't believe I genuinely mean to be a battle axe but I just can't help it.

In myself I feel great. It's like I am two people I'm happy and content but only when I am left alone.

I hope someone can relate to this and share their thoughts because I'm stumped and have fast disappearing enthusiasm to sort it out.

Dearest Win....I have tried singing but even thats not doing its thing

Any suggestions will be gladly received

M.O.F
X

[Carolynusa]

Hi mum of five:

You sound a lot like me. I am older than you and my sah is also about 2 years out.

 

I know what it's like to feel so crazy with your memory. If someone asks me to bring coffee I am more likely to show up with a potato!

I have always been a very proud word person. Typing, spelling, reading, etc. Nobody could ever beat me at scrabble .now I am finding I have to ask my son how to spell a word or so.

Geez!

 

I wobble around the house also but seem to be better on a straight surface, I.e. sidewalk.

Here's a difference! I hate my short term memory but love my long term. The most amazing things will pop out of my mind from years ago!

I am happier alone myself. I feel more positive that way. You are not alone in that.

 

I certainly don't believe you are a bad person OR a battleaxe. You are just a little different than you were before sah.

Have you talked to a neurosurgeon about your feelings? I did and took a 3-hour test to check my memory. That would have been great except I forgot to go back for results!

 

Take good care

Try a doctor

Don't beat yourself up

Carolyn ✌✌

[Chelle C]

Hi Mum of Five,

 

You are not alone with some of the things you describe, I am 2 years post SAH,

 

I have big problems with short term memory, my attention span is like yours.

 

I find myself going in the cutlery drawer for my dogs food, ridiculous I know but

it happens.

 

I can be mid sentence and suddenly my words have gone, very frustrating and

in the presence of strangers It can be a little embarrassing.

 

I also have big issues with my balance, I still have to use my crutches when it is

really bad, I often wonder if people think I might be drunk when I`m really wobbly.

 

I don`t like being alone for long periods of time, I think that stems from the fact I

was alone when my SAH happened, but I do enjoy being on my own sometimes.

As long as I have something to do.

 

Like Carolyn said you are not a bad person or a battleaxe, It`s just the new you, 

 

The new person you have become can take a bit of getting used to,

 

I`m still finding my emotions all over the place, I was never a hard person but I

get upset at the silliest of things now.

 

Maybe Carolyn is right, have a try at talking to someone about how you are feeling,

it might be just the thing to help with some of what you are going through.

 

What ever you decide I wish you well,

 

Love & Best wishes

Michelle xx

[Winb143]

Hi Mum,

 

I went to get my Daughter a card for her birthday and she had it June 16th, I just got confused for a split second it was my brother I needed the card for  ha ha. his birthday is in July.  !!

 

We get times when under pressure to things,  and we say things that come out a little wrong.

 

I know I am okay but my family  sometimes make it worse, as before it was a slip of the tongue but since Bleed it is me and I sometimes want to tell them, not to question my decisions.  Good luck Mum of 5 xxx

 

Love

Win xxxxxx

[Macca]

Hi,

 

Keep a diary with important dates in it and look at it every day.  Put post it notes around the house as reminders to yourself and write things down when they are on your mind.  Don't try to remember them as you will surely forget - I know I do. 

 

With five children you will no doubt have many things on your mind so don't beat yourself up about it, just do things such as I suggest to help yourself.  It's as much about managing yourself as about memory.

 

One last thing - tell your hubby and your children, sincerely, that you love them, it will brighten your day, - and theirs!

 

Good luck,

 

Macca

[SarahLou]

Hi Mum Of Five,

Yep, yep, yep, I totally get how you are feeling!

In August it will be six years since SAH rocked my world.

I often still feel like it's one step forward and two steps back in the world of living with a brain injury.
And that is what we do. Live with a brain injury. So please try not to be so hard on yourself, remember how far you've come.

In April I referred myself back to my Neuro Nurse Specialist because of issues I've been having.
My long term memory is fine, my short term not good but in recent months my 'missing memory gaps' have been increasing.

 

I sometimes really have to concentrate hard to follow a conversation. Fatigue floors me. I have visual migraines every day. My balance has got worse. I am almost all out of strength and fight.

 

However, I had a good long chat with the nurse, we discussed everything that's been going on in my life. She said it's perfectly normal for SAH survivors to go through months of coping ok and to then face struggles. She went through my scans with me, explained things in more detail so I had better understanding of my brain injury.

She has spoken to my surgeon, my latest scans re-assessed, and due to increased symptoms I am being referred back to a Neurologist.
So my advice is if you've ever any concerns that this is out of your 'normal' then get things checked.

I also like to be alone, it's very important that I get my 'me' time, and that's ok, my family understand that.

I'm sure that being a mum of five means you rarely get that! You really do need to have quiet time for your brain to be able to calm down, remember we can not filter things (multiple conversations/noise levels/different visuals) the way we used to. Your brain works much harder to work around the areas that were damaged.

Life is all about making memories, so make some good ones with your family and friends, ok so you may need to look at photos to jog your memory of those memories!!

As lovely Macca advises use post-it notes, diaries and calenders , I don't know where I'd be without all of mine!

Take care and keep smiling, and we will continue to encourage you to sing!!

SarahLou Xx

[Daffodil]

Dear MOF. You have some great advice from Macca and Sarah Lou and others already which I hope helps you. The first step though is to give yourself a break and not be so hard on yourself and then See if you can make some small changes and create some new habits that might help your brain with its efforts.

 

The fact that took me a little getting used to is my brain just can't absorb and process the way it used to and I was going to have to take steps to protect myself in that and change how I might have done things.

 

You talk about being cranky and that is easily my biggest sign that I am in need of extra 'quiet solitude' , that's and losing or muddling words. What comes next is my balance goes and I literally will be in the floor so I do well to not ignore them.

 

I call this time my reboot moments and my girls are quick to tell me and then I take myself off, sit quietly with no other distractions and just be still a while. I personally practice mindfulness meditation but maybe find something that works for you to help just quiet things down. If it's really bad then I just have to stop everything and sleep and I don't rail against that now as I know it's the only thing that will work.

 

Pacing is something to be learnt. I hate the word, I rebel against what it means and what I have lost but without pacing myself daily then I actually can't do half the things I now do. Slow things down, do them one at a time, plenty of breaks in between. Ask people to have patience or for help. Explain you can do something but only after you have had a time out.

 

If you have just done something that takes cognitive effort then take a moment to pause before you go onto the next. If there is big emotional upsets or worries then pace yourself even more as these are energy drainers.

 

All that said I then still have days like you describe where everything slows, words gets lost, balance is gone but they pass but like Sarah lou do get checked out if things are deterioating. You're no battle axe you're just adjusting to life with a wounded brain.

[Louise]

Hi there

 

Yes can relate, but maybe since you've noticed a change maybe go speak with your GP, tell them..

 

I find writing things down dates and stuff (that's for birthdays's etc), pots and pans, well can't help there.

 

But for your own peace of mind I'd get it checked out..

[Mum of five]

Thank you to everyone, I will probably go to my gp but I think it will be the classic answer, reduce your stress levels.

 

My hubby still has severe depression so is very hard to deal with, he now also spends most of his time in a wheelchair due to a spinal cord accident last year.

 

My beautiful boys help all they can but two are just about to enter their gcse year, one is autistic so needs constant attention and the other two are just trying to be children......not easy in our house. Ultimately it's too much for their young shoulders.

 

Stress or not it'll still be there next week,month or year so without trying to sound like a hero you get up each morning and just get on with it.

This, I think, is possibly just a bad run but I will get it checked as I have taken another slight step backwards since opening this post.

If nothing else I will get ten minutes peace in the docs waiting room

[Super Mario]

Two steps forward and one back is normal in recovery from a SAH. It does get better over time. I know it must be very difficult for you to find that quiet time for yourself but you really do need it even if it means things slide at home a little. Better for that to happen and you continue making those baby steps forward.

 

I feel you are trying to do too much, have you anyone who could take some of the weight off your shoulders for a while?

[Mum of five]

Thank you super. Unfortunately not, all our relatives live a long way from us, plus they are very small/ elderly in numbers.

 

As for friends, I have the two best ones in the world both arriving at my bedside within hours of admission but again it's long distance 100+ miles. I rant and bless them they keep me sane so I have emotional support but physical is down to me.

 

I used to get help from my husband but the effect on his mental state his physical circumstances has had mean I am at the bottom of the pile and more often than not am the butt of all his frustration. With his mind being more debilitating than his back it makes for some challenging days.

 

I will as always close my eyes, count to ten and try and smile.

Just a bit of a double whammy at the mo. Once I'm back on track all will be OK again. It'll just take me more energy, brain power and stamina for a while.

 

Thank you again

M.O.F

XXXX

[Super Mario]

Just another thought. As you are a carer for your husband ask a carer's assessment from Social Services. They may well have suggestions to make life a little easier for you or may well be able to put help in place.

 

Contact Adult Care at your County Council. There is no shame in asking for help even if it is for the short term.

[Winb143]

Whatever happens try and keep positive thoughts, when I get down I feel worse and you with Children must also feel it 5 x over

 

All I can say is Good luck and try and remain positive xx

 

Keep yourself Well as you are needed xx

 

All the Best Mum xxx

 

Win xxx

[Louise]

On 6/27/2016 at 8:16 AM, Super Mario said:

Just another thought. As you are a carer for your husband ask a carer's assessment from Social Services. They may well have suggestions to make life a little easier for you or may well be able to put help in place.

 

Contact Adult Care at your County Council. There is no shame in asking for help even if it is for the short term.

 

Great advice there..

[kpaggett]

Hi there,

I am almost 5 years post 'Blip'.  My memory was really bad for a bit and then it improved with work.  It was strange to me since my bleed had been in a brain location not associated with memory.  Yet, there it was.

 

Now it is generally good with unpredictable moments of horridness.  I wish I could tell when it was going to fail, but I can't so I try and just take steps to have a back up like notes or husband, etc. I used to have an above average memory, so there you go.

 

Don't get me started with spelling!  I was always a bad speller, but now I'm like back in grade school with my spelling.  I have no idea why I reverted to my initial ways, but it really is like I'm a kid again trying to figure out which words break the rules, etc.  I also leave out letters of one word only to put them into the next, so I have a lot of editing to do now.

 

Things started to get better when I recognized them, did something proactive, and then let it go.  Your body/mind can only do what it can.  You can train it all you want, but in the end, it decides what it wants to do and you can't really control that one.

 

Hope you find some ways to work on those acrobatics.

~Kris

[Carolynusa]

Hello Mum of Five

I have been thinking about you and wanted to check in and say hello.

Hope things have improved for you and your family.

I found more things we have in common! Cats, for one. Then...I have a son who is bipolar/schizo affective. He
will be 30 next month. He currently lives with us and can have strong bouts of depression. Kind of changes the whole atmosphere in the home, doesn't it?

I had a brother-in-law that was hurt badly at work. He was depressed for a year or so but he came back. I hope this is the same with your husband.

You certainly have a lot on your shoulders but it seems you are strong enough to deal with it, even if it's hard. I know that's easy to say but try to believe it. Try telling yourself over and over each day, "I can do this...."

I think you are great! I'm sure your family does too.

One funny thing to help cheer you up before I go: I came into my room to write this to you..and ran into a wall !

Take care
Carolyn ✌

[Mum of five]

Hi all, an update.

 

Following several suggestions i finally had a vague chat with my doctors receptionist last week about my broken down state.........four hours later following two different health care assessments I was back in hospital. Seems my laid back thought process on my current disintegration wasn't shared by anyone else. 

 

Lots of tests, ct, mri and plenty of tears ( I hadn't realised just how bad things were until they started the fine motor tests ) later I was finally allowed home three days later with the consultants telephone number with the "threat" that if i didn't call should I take a turn he would hunt me down ( lovely man honestly) and the promise of a follow up appointment in a couple of weeks.

 

My appointment is 28th of this month. On the plus side I am not showing any significant increase in damage to my brain albeit there is some advancement nor do I have any tumours or lesions which is wonderful news. 

 

On the not so glorious side I have intension tremors, ataxia, weakness in my left side and something else beginning with d ( I had about maxed out by this time) there is currently still no improvement in my symptoms which is not what the consultant was hoping for but I am ever hopeful that it will be just another annoying speed hump on my journey through this wilderness. 

 

As with everyone else on this site we adjust to our lot and carry on life so that is what I shall continue to do. If the 28th brings another hurdle then I shall have to learn to jump higher. Metaphorically speaking of course I'd look a right numpty trying to jump when walking in a straight line is akin to finding golden eggs.

 

Thank you to everyone, you are, with your words of support single handedly keeping me sane by providing an outlet for me ( hubby in another black hole) to air my concerns/ winge/ smile etc etc etc

 

Mum

Xxxxx

 

Carolyn ........thank you thank you thank you. Your reply really made me smile from the inside. It's obviously not just me that miffed someone upstairs ( only waiting on the lightening bolts now) but the last paragraph made me laugh so loudly and not much stirs that hidden emotion anymore. Xxxxxx

 

As someone said a person with depression is normally the one who could light up a room when they entered but who can also cast the darkest cloud. It's been four years now and my cloud keeps fighting to shine. X

[Winb143]

Mum,

 

Well done for getting somewhere at long last, and Carolyn is good at making us smile, inside and out.

 

Perhaps although you didn't want to cry it must have done you good to get an understanding Consultant xx

 

Be Well and think of Carolyn as she is a Tonic  xxxx  You'll find your golden egg soon, Good luck MOF xxxxx

[Louise]

Hey there,

 

Wow! but good for you going getting it checked out, if you don't ask you don't know...

 

Sending you every positive vibe for 28th, if I lived near you I'd come hold your hand..

 

Take care

[Mum of five]

Louise

 

That is quite possibly the nicest thing anyone has ever offered to do for me.

 

Thank you xxxxxxxx

 

PS hate to admit it but you bought a lump to my throat and a tear to my eye

X

 

 

 

[UK442]

Dear Mum of five,

 

Lots of good advice here.

Thought I would add a little tip for you, one that I have just started about 2 weeks ago.

Zen Breathing exercises

 

I am still going 3.5 years later.

This is actually my first post.

Though I feel like an older member, because I have been visiting for over 2 years.

 

Kept meaning to post my story or something over and over again.

This is so hard just writing this now.

Filling up already, I can hardly see the screen.

 

Best of luck for the 28th.

 

Hope you can try the Zen. Two minutes a day is all it takes.

Just done mine in the greenhouse( my quiet place)

 

So much more I could say, but I am going to press the button now or this post will never get posted.

[Louise]

Sorry I didn't mean to make you cry.

[the quine]

Eureka!!

I have returned to this site hoping to find information/confirmation/reassurance that I am not over-reacting or looking for problems that aren't there - as this is what I know those around me think! I have spent time reading through posts and advice and find this one.

 

MO5....I am truly sorry to hear of your situation & YOU should be proud of all you have been & continue to deal with, humbling indeed!! Furthermore, your original post mentioned so many things that I have been 'struggling' with over the last few years and recognise,.

 

But have been told by my GP that I am depressed, suffering from stress blah, blah, blah but ignoring or not listening to what I feel are my real issues....memory, language hesitation (verbal & written) confrontation fear, social engagement incompetence, utter fatigue and above all else "I am devoid of all fluffiness.

 

I feel nothing, long conversations bore me, little to no empathy" So, I am probably not simply an "attention seeker" (how I've been made to feel!?!)

 

It has been so long since my SAH (2008) & stent (2010) that I no longer believed that this & my mental state could be linked. I have found work more than challenging, my ability to cope deteriorating until I finally left in October 2015, the financial pressures and feelings of failure have plagued me since.

 

My 3 children are now all grown up, happy, secure & working abroad, so I don't have that responsibility but the belief I am not the person I used to be has finally hit home - but how do I explain this without sounding like a 'whining child looking for excuses?' 

 

In conclusion, I would like to thank you for posting so honestly and wish you well for the 28th, hoping you get the answers, support and help you deserve and are entitled to!

 

Your post & this thread has convinced me to tackle my GP again and ask him to take me seriously, so it has helped at least one person.

In fact, I may just copy & take this with me........thank you!!

[subzero]

Hello Jane....thank you for sharing your thoughts again on BTG.

 

It has been a tough eight years for you and I am so glad that you have still kept in touch with BTG.  Great that you have found so much encouragement from this thread started by MO5 and also from the very supportive comments which followed.

 

Wishing you the strength to hold on there and keep rebuilding your life.  You have so much to live for and your experiences will be valuable help for others who are facing the challenges post SAH.

 

Take care

 

 

Subs

 

 

[Louise]

On 7/23/2016 at 0:20 AM, the quine said:

Eureka!!

I have returned to this site hoping to find information/confirmation/reassurance that I am not over-reacting or looking for problems that aren't there - as this is what I know those around me think! I have spent time reading through posts and advice and find this one.

 

MO5....I am truly sorry to hear of your situation & YOU should be proud of all you have been & continue to deal with, humbling indeed!! Furthermore, your original post mentioned so many things that I have been 'struggling' with over the last few years and recognise,.

 

But have been told by my GP that I am depressed, suffering from stress blah, blah, blah but ignoring or not listening to what I feel are my real issues....memory, language hesitation (verbal & written) confrontation fear, social engagement incompetence, utter fatigue and above all else "I am devoid of all fluffiness.

 

I feel nothing, long conversations bore me, little to no empathy" So, I am probably not simply an "attention seeker" (how I've been made to feel!?!)

 

It has been so long since my SAH (2008) & stent (2010) that I no longer believed that this & my mental state could be linked. I have found work more than challenging, my ability to cope deteriorating until I finally left in October 2015, the financial pressures and feelings of failure have plagued me since.

 

My 3 children are now all grown up, happy, secure & working abroad, so I don't have that responsibility but the belief I am not the person I used to be has finally hit home - but how do I explain this without sounding like a 'whining child looking for excuses?' 

 

In conclusion, I would like to thank you for posting so honestly and wish you well for the 28th, hoping you get the answers, support and help you deserve and are entitled to!

 

Your post & this thread has convinced me to tackle my GP again and ask him to take me seriously, so it has helped at least one person.

In fact, I may just copy & take this with me........thank you!!

 

 Good for you go for it.. don't move from the chair till he does take you seriously....