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Hello everyone, hope everyone is doing 'ok' at the very least. 

Today is a bad day for me, headache wise. I think I am starting to get used to the daily headaches, and complain about them less (much to everyones delight I'm sure) 
However some days they are quite crippling! Today is one of those days. The pain is all down the right side of my head and behind my ear. Hasn't reached my neck yet, i'm sure it will. 

These are the headaches that worry me, stress me out and knock me for 6! 
I question them, is it normal? Should I tell someone? If I should tell someone then who? There isn't really anyone I can just pick up the phone to......... 

I think one of the worse things about all this is the misunderstanding. It's invisible isn't it... 
No-one can see the pain in our head, hear the noise in our ears or feel the frustration and anxiety we feel.

My family are more 'on board' at the moment, but only after a major hissy fit on my part last weekend. I went into meltdown mode good and proper. Since then, they're trying just a little bit harder. Now to get people outside of my home to 'get it' a bit more. 

I hate going out for fear of seeing people I know. I can't cope with the questions and the statements saying "Wow, you look great, you've recovered so well" Blah, blah, blah....... 

They mean well of course, but I want to be able to look into their eyes and get them to see inside my head, but I can't so it's a case of suck it up buttercup. Deal with it, haha. 

My head is pounding, the screen is hurting my eyes, so as soon as my daughters tutor has left the building, this old girl is off for a sleep...... 
Take care everyone. Much love. 

Deb. xx

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Hi Deb

 

Sorry to hear you are having such a bad day, it's hard to deal with especially as other people jut don't 'get it'. Glad your family are a bit more on board now and sad to hear that it took a 'hissy fit' to get their attention. I know how that feels :(.

 

Is there a Nurse Specialist as the hospital you were treated that you could speak to? A lot of the Neuro units have such a person who you can call up and discuss problems you are having, such as your headaches. It may be worthwhile giving the hospital a call to see if there is such a person. The other option is to call Headway who I believe have trained nurses you can speak to.

 

How are things with your daughter now? I hope you are still getting lots of support for her.

 

Hope you managed to get a sleep and that you are feeling a bit better later. We are all here for you so keep coming back and we'll help all we can, even if it is by just understanding and 'getting it'.

 

Take care

 

Clare xx

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Hi Debs,

 

Have you had stress recently,  as when my family tell me there tales of woe's since SAH I cannot take their problems, and then I get a bad head and I mean all stressed out and teary.  I have to tell them I cannot take it.

 

Hope you feel better soon and all what Clare said xx

 

Many times I've had a good rant on here and just putting it down makes me feel better.  Sometimes I have  typed with tears falling.

 

Get head sorted and to know it is a headache and nothing else will calm your fears and no fears, no stress !!

 

Good luck and hope headaches go, but see someone who knows about headaches and understands you ie speak to someone who knows your history xxx Good luck

                                                                                      

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Hi Deb

Sorrry you're having a bad day, No consolation I know, but me too.Im waiting for the good one that should follow, been waiting a few days though! Apart from everything we've all been through and continue to live with, I really don't think this winter weather helps with mood. Grey and gloomy are not conducive to lifting our spirits.

 

lI know what you mean about going out and seeing people,because you look the same, they assume you're fully recovered(if only!) I sometimes think I'm in  danger of becoming a recluse.

Its lovely you have your family for support now, sorry there are no answers in this post, just wanted to let you know youre not the only one?Good days will be here soon.

Jan xx

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Thank you all for your replies. It really helps to have some feedback from others who understand instead of just a bit of head nodding. 

There is a neuro nurse I can speak to, but I have to email her and wait for her to get back to me, which can take days or even weeks at one point, so it seems a bit pointless when I need to just know there and then. Will consider headway next time though. 

I tried to sleep, but between the phones ringing for appointments for my daughter and the door knocking to deliver parcels, I gave up. I took some painkilers, made myself a cuppa and sat in the quiet with my christmas lights on while my daughter slept instead. It's helped a little :) 

Claire and Win to answer your questions regarding stress and my daughter, they are one and the same really. She is still really struggling at the moment, which I find really stressful. We're looking forward to a couple of weeks off over christmas, both from her tutoring and her endless appointments with various people, so really hoping for some down time for us all. 
 

Sorry to hear you are also struggling Jan. Hope things improve for you soon. I think you're right about the weather though, it definitely doesn't help. I love cold, crisp, frosty mornings with sunny afternoons, but the grey, cloudy days are quite depressing. Hoping we'll get a bit of snow at some point this winter, I love it. But there'll be no sliding down mountains on black sacks for me this time, i'll just watch instead :) 

Thank you once again for your invaluable support. 

Take care.
Deb. xx

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Debs,

 

Weather can make your head feel bad as me and Daffs have spoken about it,  I call it my barometer head and when the weather is overcast the pressure builds up and you feel like your head will go again.   Still see/speak to someone in case and even if it puts your mind at rest, you will have peace of mind.

 

Good luck and hope head feels better soon xx

Love

Win xx 

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Debs, firstly my apologies as I have completely missed your posts until now...I have just read your introduction and GP post and then this one. Sorry it's been such a hard time and Well lovely lady you may need to turn the activity dials down if you can at all and just go right back to basics of being kind to self.

 

The horrid effects of stress that canny Win mentions is correct. I have a theory that the chemicals induced when we are stressed are not tolerated very well in our new corrupted state. The brain can't process or filter the effects as well and everything gets magnified and feels dreadful, and then we worry, which is horrid too and a vicious circle happens. So when that happens you need to slow it down, stop, sing, rest, be still and you know what maybe invite your daughter or whomever you are with at the moment to join you in that stillness. It won't hurt them . 

 

the weather affects my energy and pains levels shockingly. I blame the fact I can't read half the posts on here at the moment on the fact that my energy bank this time of year drops even lower than its shockingly low levels of normal making it harder for me  to be able to keep up with what I can normally manage. So I have to adjust my patterns and I think possibly you might need to also.

 

Rest when your daughter rests, don't fill it with things you feel you should do, ask  people for more help with cooking or chores if you're trying to do all that, freeze meals, do whatever it takes to allow you to find a balance that works today, and tomorrow adjust again, keep observing and noticing and adapting. 

 

for most of us this adjusted grey matter just doesn't bounce right back and allow us what it used to, I think joining your daughter with the regular meals and rests might be a good idea, and maybe that's something positive right? you can help and encourage each other to both get to a steady state and regain health for both of you in your recoveries. Do it together, 

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Hi Deb. Sorry to hear you are struggling at the moment, I hope the headache improved. I too get headaches & tinnitus, which gradually get worse the more tired or stressed I get. My daughter is severely disabled & I'm her full time carer. Sometimes she sleeps well & other times I can be up 2-3 times a night. It can be very draining. Luckily most days I get a break when she's at school, but as you know there's always something to do -especially with Christmas coming up!

 

I have finally realised though that rest is best...you desperately need time for yourself doing whatever relaxes you. My hubby came home early & found me napping the other day & I felt guilty!! Even though i'd been rushing around all day. Its hard to accept we're not the superwomen we used to be, but I think once we learn to accept it the happier we can be. I hope you get a little 'you time' soon & that you all can have a lovely Christmas together. Take care?

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Hi Deb

 

Sorry to hear things aren't too good you shouldn't have to struggle - have you seen your GP or the Neuro department don't suffer with it hun.

 

Emailing a neuro nurse that isn't replying is no good at all another one of those system things that makes my blood boil...

 

Yep if your stressed that could make the headaches a lot, lot worse, are you keeping well hydrated another factor with the headachs...

 

I hope you manage to find some relief, take care and try to find time to rest I know its hard...

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