Feel a mess today

Evening everyone I've been struggling after a seizure with left side of my face. I had a visit from my gp today, it always feels me with dread what will they say, will they want to push me to go into hospital. I replied to a post yesterday regarding the nhs. My experiences have been so bad with my local hosp and with a lot of consultants I have come into contact with. Equally gp surgeries I have had, have mad errors in my records, not updating info or a lack of care. I should have said yest its taken me 32yrs to find a good surgery, and 7yrs of missing vital care and support. But this surgery does show that they care, and have recognised that I've tried to cope on my own. Im struggling with my facial muscles but also eating is getting worse. I eat and then my stomach does not like it. I am a determined person and I know I'm a fighter, lord knows I've had to be. I hope any posts or replies to posts help people, if I can support someone or offer advice or an opinion it makes me feel useful. :-) :-)

22 Replies

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  • Hi angelfish, hope your feeling a little better, I feel such a fraud when I hear what other people are going through, you are obviously a very strong lady and this is what gets you through. I'm glad you've got good medical support, I work in a care home and trying to get gp visits are a nightmare, stay strong and take care xx

  • Hey there, never feel a fraud, remember we are all different so it's ok to say that things are not so good or bad.....xxxx

  • I totally agree we all have levels of problems to deal with and they can be a lot for us. For me when I hear that someone is having a harder time it gives me a reality check and I tell myself off for ever feeling sorry for myself. Your problems will be a big thing for you and your job isn't easy and I imagine to be stressful

  • Hey there Angelfish... I have epilepsy also and a similar experience of the NHS sad to say.

    Just sending you a bit of support there xxxxx

  • Thanks TiredNan they've checked and I don't have epilepsy mine come from two neuro conditions that clash with each other, although they have got me on gabapentine I'm on the highest dose (I rattle) thank you so much for your support, I hope your keeping well xx

  • oops I am always misreading things so sorry .

    I hope this GP of yours keeps good for you... thanks for asking i had a bit of a ty=urn yesterday but ok today.

    Lol! i rattle also with I suppose we could always join one of those Mexican bands where they have those things you shake... lost the word for them lol! xx

  • thatshould say "turn" but my fingers arent working so well today... I can tap it out in morse code perhaps???/:)

  • I'm on your wavelength :-)

  • Lol sounds good to me we can shake rattle but maybe not roll lol

  • Thinking of you Angie. Hope you're feeling more settled now and that tomorrow will be a better day. xxx

  • Thanks Cat xx I think its going to take time and rest to bounce back from this damage. Our bodies can be cruel they're amazing but also cruel. May sound sad but I'm wearing my new pj's and new duvet and makes me feel relaxed :-)

  • you need to be as compassionate and nurturing as you possibly can. When I'm in one of these states I buy myself a small plant or a bunch of flowers, light a scented candle, put some lovely classical music on, become recluse, meditate and chill. There's no telling how long I will need til I come out on the other side, of my cfs, bum day (o'h did I say bum, sorry!), or feel ready to take on the world. All the while looking perfectly normal, such is life with a brain injury! Grrrrrrrrrrr! Hang on to Hope Angel, you'll feel fine again soon. x

  • Thanks swedishblue I'll bounce back all be it a bit slower, the bum things ok lol I said to someone last night to pull their big girls pants up lol

  • Not sad at all m'love ; there's something very comforting about new bedding and nightwear ................. a sort of fresh start ! Nice to think of you, all comfy & cosy. :-/ x

  • Hi Angie,

    Am sorry that you have not been feeling the best.

    There is nothing wrong with treating yourself to new pj's and bedding when feeling down.

    Hope you are ok today and got a good night's sleep.

    I am pretty sure that Coco is getting lots of cuddles and giving you plenty of tlc.

    take care xx

  • Hi Clara

    I did enjoy my new things, and you are so right I have been cuddling Coco. It was funny when the dr was here she was trying to get into the drs bag, and then she came and sat on my lap. She is very protective of me bless her. Last week when I had the nurse here she tried to drag the nurse bp cuff across the bed lol. At the moment I go to bed late and wake up thinking its later and its early, so I'm watching James Bond, Spectre Daniel Craig :-) :-)

  • Coco is a character!🐶

    Hope you get better with each new day. xx

  • Hello Angel, Jules here.

    You have been really supportive of me, you are an incredible woman.

    I do the 'new Pjs and bedding' sometimes when i am low - it must be a girl thing eh ?

    (i have probably just upset all the boys on the forum now !)

    Anyway, just to say i am thinking of you and hope you are out in the garden in the sunshine right now feeling on the mend

    Kindest

    Jules

    x

  • Hi Jules I'd like to see if some guys corrected you on the pjs and duvet lol. I'm ok hun I haven't been outside I've been cocooned under my duvet asleep. I'm a great believer in sleeps a good healer when your feeling rough :-) how are you doing today x

  • Hi there

    Well if the weather is like it is here in Newcastle on Tyne then its worth a look outside -nice to see colours instead of breeze block grey isnt it.

    I dont know how i am really - nothing to worry about Angel - but im on edge.

    Im doing something i havent done, i think in a couple years - i am painting things around the house mat white. I am only 5.5 tall and cant stretch both arms far so you can imagine the decore is a little 'odd' looking. It started last night. He just seems to be ignoring it... not sure if thats funny or not.

    I have just got him to remove a load of furniture i no longer want in the house - i really cant stand clutter at the moment - its like 'noise' too much noise. It makes me feel boxed in. Again he said nothing just move the stuff into the garage. (I have made sue there is still a bed for mum when she arrives Thursday!).

    It will pass -always does. o you do anything similar ?

    Regarding Pjs and guys - do they call them that even? ! I know that guys must want to retreat from life like we do - (with or without a head injury somedays its all you can do) but do they retreat to under a quilt ,,i dont know - maybe they think ifthey did it would appear they are soft. If i were a bloke i wouldnt care.

    I sleep in the living room now have done for about 3 years. So i usually have a dalmation and 4 cats sunder the quilt with me (yep we have a huge sofa with a cover on).

    Jules

    x

  • Hey Jules we sound so much alike, I can't ignore things. I can't cope with lots of things around I have to have things organised then my brain feels calm. My partner (a geordie boy) is a bit more chaotic. As he has a brain injury which is more severe than mine I've tried to get him to sort through things as he gets agitated and confused when he's trying to find anything. It might be a bloke thing but he always thinks I know where everything is. I have been repainting the inside of the house and improving things aswell. I notice things that need doing where as he doesn't, I don't know if your other half is the same. I found it hard work and pain later, but at the time I found it therapeutic. I love coming up with ideas for the interior. I found my brain wasn't going into overdrive when it was sorted. I think the men and pj's they either would keep it to themselves, go in their sheds or whatever they like to get involved in. For me fresh bedding pj's and my dog Coco on my lap and I'm happy xx

  • Hi angelfish28.32yrs find dotor God. I'm same 6yrs my dotors let me get in this state. I find out my self wat I got .then gave me a tablet for it .6yrs of burning brain.its fried me brain. I've only got one dotor that read it y I was there .he's only.one I got .but he don't no to .so good luck .hope u get well soon 😊

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