Almost Four Years on

[Pat]

In November it will be four years after my suberachnoid brain heamorage.  I still get quite tired  and really surprised and shocked at how much stuff from my past I've actually forgotten. I still get headaches quite a lot and feel like sometimes it's like taking one step forward and two steps back.  Just as I feel I've had a good few days I have a few days when I really feel out of it and still get pains in my head and other parts of my body.  Is this all normal I thought I'd be feeling lots better by now almost four years in ?  Any help/advice would be appreciated 

[Skippy]

Hi Pat

 

Sorry to hear that your recovery is not going as well as you'd like.  Unfortunately we are all very different in our recovery rates and lasting affects.  Have you seen your GP/Specialist recently to discuss your concerns?  

 

You don't say in your update whether you are back at working/working or if so how many hours a week etc.

 

The advice would be the same as usual though; plenty of water, listen to your body and rest when you can. 

 

Definitely make an appointment to see your GP/Specialist to see if there is anything they can suggest.

[Pat]

Hi thanks for replying.  I haven't gone back to work. I spoke to the neurologist and she said the strange pains I get is my brain recovering she said the brain sends out electric shocks to the body which is all part of the recovery and not to worry.  I do rest when I can.  I find it all very frustrating as I don't do poorly but thankful to be here.   Hope you are well. 

[Skippy]

I know how you feel.  My husband tells me that it was my pure stubbornness that got me through the first few years, and I'm inclined to agree.  

 

I'm eleven years on later this month and I still get the occasional sharp stabbing pain in the head - and bearing in mind that all messages sent to the body from the brain are electrical, it stands to reason to that we're going to feel something whilst its recovering.  The one piece of comfort I take though, is that the brain itself cannot feel pain - it doesn't have pain receptors like the rest of the body, so pains we are feeling are from the messages going to the brain from those parts of the body that can feel pain.

 

If you're frustrated and tense, this will also cause headaches as the muscles contract around the skull causing the pain - I know its not easy, but do try to relax as much as you can.  

 

I know that Win on here talks about singing, but it is scientifically proven to relieve stress and, believe it or not, help the brain to recover as singing releases feel good hormones which in turn makes you feel good.  It also helps rewire the brain apparently as by singing along to a song that you know stimulates the memory into action as you are recalling the words.  So even though our Winnie may not have the best singing voice (her words, not mine ) - it does actually help distress, relax and help your brain.

[Winb143]

Hi Pat,

 

I agree with Skippy as I am Win the singer of happy songs lol xx

 

When I had my SAH/Bleed I was told "No Stress"  now we all know life is filled with stress and worries, so I wondered how to alleviate that. 

 

I found singing my brothers songs stopped me getting too uptight,  but that is me only and for others it may differ .

I also found a smile helped as I read somewhere when you truly smile sadness stops ....so I'll try anything !! 

 

See Doc if really worried, as it is always best to see Doc as he/she can put mind at ease.

 

Good luck Pat and welcome to BTG hope you feel better soon and maybe one day see you in Green room xx

 

Win xxxxxxxxxxx  (Who has had many strange heads since bleed)

 

 

[Pat]

Aw thanks that helps.  I'm not so much frustrated and tense in an axious way but more expect to be feeling better if you know what I mean, hard to explain.  Just when I feel I've turned a corner I have a bad few days again.  When we go out with friends and do things it really tires me out the next day.   I've come on so far though compared to when it first happened and I do push myself to do things otherwise I don't think I'd do anything and am getting stronger, like you said it will take time.

 

Sounds like you're doing well, well done and thanks for replying to me it helps knowing there's someone to chat to on here as I couldn't find any help from anywhere else.  It's a brilliant site.   I'll try the singing and let you know.  Keep in touch and if ever you need to chat you know where I am.  Thanks X 

 

Thanks Win 

[Winb143]

You just keep as happy as you can Pat, and this is a good place to give vent to your feelings

 

We have all been through it so at least we know how we are feeling and a trouble shared is a trouble halved.

 

Good luck and chin up and I'll keep my 2 up.  I had 3 but been on a diet ha xx

 

If you see a chubby old dear with a stupid grin on her face and singing songs  say "Hi Win" ha ha xxxxx

 

[Daffodil]

Hi Pat,

 

its a funny thing to be a few years further down down from our bleeds as in the early years it was the struggle of overcoming pain, limits and barriers that took our focus. As we gradually knocked down some of those barriers or rebuilt paths we then find ourselves a little lost. The world as we used to navigate is different place to use now, the things we did effortlessly drain our battery packs fast or worse we know our enjoyment of them is less as this brain just doesn't process it all as fast or as well. 

 

I talk about about trade offs now. If I am going to do something that I know will use a lot of energy I try to reduce down my activity a little before and plan to do the same after, even then I can still end up in a darkened room but I think it's worth it, those busy times are important. 

 

When i go to the pub it's hard. I am still quite noise sensitive and dealing with Background noise as well as following conversation means I have to take regular ' loo breaks' or step outside and there are some Places just won' t go to anymore as they are too echoey. I scan places now, 'where's the speakers' ' is there a quiet spot' and I am happy to ask for a quieter table or put in my ear plugs if needed. 

 

I plug in lots of buffers between things, I don't race from one thing to the next but pause and take moments as and when I need them and I make no apology for that. 

 

I still get surprised by what effects me and if I am honest I still battle with my ego of what I think I should be able to do five plus years on using what I used to do as a comparison. My ego still gets me into pickles which means I end up using way to much energy way to fast. So when I don't listen to that and instead approach everything with a bit more consideration and self kindness then things are better. 

 

But singing does work wonders ?

[Pat]

Thanks Daffodil everything you have said is exactly how I feel.   I try not to let all this get me down so as not to let it get the better of me and don't miss out on family and friends gatherings and try and rest before I do fun things and certainly have to rest afterwards.   It is getting easier  but like you said it's surprising as to how much it takes out of you the things we did before without a thought.  I don't think I'll ever feel like the before me again but I try not to let it stop me or beat me.   Sounds like you are the same as me and battle through it.   Thanks for messaging me. Keep in touch and if ever you want to chat I'm here X  pat 

[Pat]

Thanks Win I'll certainly keep my chin up and well done to you for dropping a chin size ?  This is a brilliant site I'm so glad I found it., it's helped me a lot.  I'm getting there and it's brilliant to have others to chat to having been through the same thing.    I mentioned the singing to my husband and he said to tell you that it won't help me because I never knew the words before my heamorage so I won't know them now. Cheeky thing ?   Ha ha. Take good care. Keep in touch X 

[Macca]

Hi Pat,

 

Six and a half years on, I find I have to manage my good times to get the things done that I need to, and then rest and rest properly.  It is now about time management and realising that I am thankful to still be here and that all I have to do now is be a bit more organised than I was before.

 

Look forwards not back, the positives not the negatives, the ups not the downs - half full, not half empty.  Look at what you can do, not what you can't.  Things could be worse and even now all this time later, I still feel that I am improving.

 

As the song says 'Always look on the bright side of life.'

 

Full of clichés, I know, but it's how I deal with it all.

 

Good luck,

 

Macca

 

 

[Pat]

Hi Macca nice to hear from you, I'm getting there. Just seems sometimes  to be one step forward and two back but I try not to let it stop me doing things and rest when I need to.   Just still surprised sometimes how things make me so tired almost four years in.   I am improving though and like you say just so grateful to be here.    Keep in touch and if ever you need to chat you know where I am X pat 

[PJ-ND]

Oh my gosh this is me right now! My ego is completely getting in the way of taking care of myself! I want to be like I was. I don't want to take advantage of accommodations being made for me at work because I don't want to seem weak or be like I am demanding what I don't have a right to. I am 7 months out and I keep thinking everyone thinks I should be normal again. After reading this I think it is ME thinking I need to be normal again and not admitting I need help so I don't take help offered.

 

ugh! This is so hard. I have the noise issue but I have quit walking out of meetings or chaotic settings. I have spent a lot of time on this site tonight. I am being reminded of so many things. I am used to be super woman not wimpy woman. Very hard to make the transition and killing my brain because of my own stubbornness! Why have I been my own worst enemy? Pushing until I collapse is the norm for me and it is literally kicking me down and making things worse. Good grief I have so much to figure out about myself!

[Skippy]

Hey there

 

Believe it or not how you reacting is normal.  We all had to get used to the "new" us and asking for help etc.  I felt the same - I was super woman and then felt like I had kryptonite hanging around my neck for a good couple of years after.

 

I'm 11 years in this month and it has got easier with each passing year - the only thing I don't do now that I used to do is step aerobics three times a week as my head can't cope with it - all the jumping makes my head vibrate too much.

 

I've been told by various family members that my stubbornness is one thing that got me through and I agree - its like training, each day I pushed myself that little bit further until my brain was used to it and then I pushed a little more until it got used to it again and so on.

 

The other thing I did learn is that it's OK to swallow your pride and ask for help - that takes a stronger person, not a weaker one.

 

Keep pushing, just so not so much in one go xx

[Daffodil]

PJ. At the start there was so much I couldn't do beyond even the physical limits,. I couldn't be in a crowded room and by crowd read more than five people. Car journeys reduced me to tears of pain as did trains , I couldn't read a book or watch tV , loud noise wired me so much, but I was determine, read stubborn, that I would would find and explore new ways to get back to some things and figure out what I could enjoy. 

 

As time passed that's what I've done, explored and found my new ways of being and many are not as before, and some I have consigned to my rubbish bin of having tried it and it's not worth the brain drain ( big crowd events, fast trains, drinking to name just three ) 

 

It is a hard but normal reaction I think to listen to that ego to want to be all you were before but like any moment in history that is gone , we have to make peace with that and At the same time realise that the internal commentator we all have is probably the origin for Some of the greatest pressure and expectations in recovery  . . We are born into a world that typically measures success by what you do, how well you do it, often how fast or competent you are at a task and then throw into that mix the noise, pace and landscape of chaos you are often trying to juggle doing it. Then put brain injury into that mix. It's a big ouch of running into a brick  wall to be honest and pushing through often has harsh brain drain feelings and impacts which we all know are truly awful. But what do can we do? Sami S advice of not too much too fast Is best heeded. 

 

None of us advocate doing nothing at all or stopping putting yourself out there  but you have to find a new rythmn and pace that works for you , tailored to your limits, you effects and that will probably  keep changing for a while yet much like the rythmn of life. I went back to work after almost 16 months against advice because I wanted to know what I could do and explore that as far as I could take it and yes it is hard saying to people you need to step out of a situation  , or you can't do something but you have to measure any progress from a post bleed setting and see how far you have come and still are travelling.

 

Yes I might want to do something NOW but it doesn't  mean  I can or even that I should, I have to find the way to do it if it's the right thing to do ...I tell my kids that all the time.! Also then again most people I find are extraordinarily nice and kind about my story and When i tell them what's happened they don't expect me to just do things the same way  and in fact are often surprised at how 'normal' i may appear. 

 

So Pj, Pat and all others struggling with that force of ego, do keep asking yourself what is right for you in any given moment , right now is what matters and you are the judge of it and no one is going to pin a medal on you for doing more than is possible brain and energy wise because you will pay the toll, no one else. So be kind and considerate to self in doing what is truly ok by you .In the long run your brain will thank you for and I think it allows a gentler way to build your resilience and learn the new you.

 

evolution the SAH way!