Fed up

[Shon48]

Fed up that I don’t feel I’m progressing as I should . Fed up with the numbness in my face . Fed up that I can’t eat because everything tastes awful. Fed up with the dizziness/woozy feeling . Fed up because my walking isn’t getting better despite trying hard . Just fed up with myself . Lots of questions to ask in December when I have the follow up appointment .

[Kathykathy]

Sorry you feel as you do been there many times and time is so hard to accept as one of the healing elements.Good luck getting answers to your questions I'm still waiting for mine 3 years on !!!! I meditate/guided visualisations every day and you can find some inner peace there to accept the now which is so difficult with its pains and frustrations but it has been a literal life saver for me, good luck

[Shon48 in reply to Kathykathy]

Thank you Kathy

I’m sorry you still aren’t getting the answers you want to hear . I can’t bear the thought of three years feeling like this. I’m on audible books now as I can’t focus on reading , a great passion of mine. Even writing this is beginning to go off .

Good luck and thank you for answering.

Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[steve55 in reply to Shon48]

i had my stroke 6yrs 9mnths ago im reading a book i started then and mean started, every time i pick it up i have to start from the beginning, but thats the new me on a new journey.

it took me a long time to accept i was a different person,but as soon as i managed to do that, i wouldnt say things were fine because i have behaviour issues due to my brain injury, but i didnt torture myself about the way i was.

here for you anytime

steve

[Shon48 in reply to steve55]

Thank you Steve . I don’t like me now , too much of a change but I’ll try and get used to her . If I just get rid of this dizziness/wooziness I could cope . Don’t care if I need help for the daily delights and using a walker to get about just want everything to be motionless. As I’ve said , I’m sure it’s too soon for me , too impatient

Nearly seven years —crikey . I always loved books but can’t focus on them now so started on audible which is one step forward I suppose . I wish you lots of good improvements . Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[steve55 in reply to Shon48]

the dizziness is it there all the time or can you be doing something and pow everything just starts to spin? thats what happened to me and eventually that changed to vacant epilepsy.

go and see your doc, i cant remember what its called, maybe someone on here could help, but its not vertigo ( found it, it could menieres disease ). look up the symptoms of both.

good luck

steve

[Shon48 in reply to steve55]

Thank you Steve. The dizziness is there all the time if I’m on my feet . If I’m sitting or lying in bed ( most days just now) I’m fine and plan what I could do then I get up and bounce off walls . Haven’t fallen for a while 🤞🏼 I go to the neurologist on the 13th December so this will be my first question . Horrible , I sympathise totally .

Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[steve55 in reply to Shon48]

there is a way to control it, but i cant remember how, check it out on the pc.

steve

[paxo05]

What can I say?

Do I assure you everything will be fine?

Honestly I haven't a clue as my bi was due to a rta.

So all I can do is be honest. Getting fed up is a common feature of a bi. This is not to belittle this feeling. "Pull yourself together" Oh if it was only so easy.

Just keep in there and recognise the low days and accept them for what they are....low days... This then surely means you are due a better day tomorrow. Take it one step at a time enjoy the good days and grumble and curse the low days.

Vent on this forum , We are all here for you. I hope you get the answer you seek.

Pax

[Shon48 in reply to paxo05]

Every day wake up and say thank you but this last wee while I’ve felt miserable with the “beast in the Heid” . If I could just get past the dizziness/ woozy feeling I would be more than thankful. The new me I don’t particularly like. Dr google keeps telling people that they should be over their aneurysm in a few days if it hasn’t ruptured and back at work after two or three weeks . Complete tosh and I know we shouldn’t Google it but I’m sure everybody has . It’s too soon for me , I know but having been such an active person and now need help most of the time I’m fed up with myself . It seems such a long time until 13th December. If I need another procedure this year I’ll scream 😱. Each one leaves me worse each time . Forgive me for ranting as I know a 28mm unruptured Aneurysm is rather large .maybe I’ll be told how to deal with the dizziness which would be great .

Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[paxo05 in reply to Shon48]

Dr Google should be struck off. Apparently just taking anti depresion tablets lift your mood and you should be cured.

Then again because I sustained hardly any broken bones during my rta I should have been back at work within the year.

Nineteen years and counting and payed employment has become a dream.

Try and look at the smaller picture. Take everyday as it comes. Keep trying different things to improve your life. Most may fail but that just means your one step closer to finding something that works.

It may work , Its worth a go .

All the best

Pax

[Shon48 in reply to paxo05]

I’m trying hard to do things but the vision and wooziness curb my attempts. Either I fall over or I’m vomiting , not a pretty sight lol . Thank goodness my husband is a retired nurse so he has been a great help to me . I think I have a cheek moaning after the length of time you have had to suffer .

Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[paxo05 in reply to Shon48]

Moan away and never feel guilty. The hardest time I felt was soon after my bi as I was feeling lost with all that was happening.

Time may not be a healer but it lets you adjust to a new life.

I get headache that feel crippling but don't feel off balance and woozy so my heart goes out to you.

Over the years I have come to the conclusion no one's disability is better or worse than each other's. Its just different, your own disability impacts your life . How others cope is their own personal battle that we may have an insight into but will never no it's full impact.

[Mufc]

I am 21 years on with my tbi and things are still improving. So as you have been told I am sure it is a long process. I think it is important you accept and like the new you. I am only just beginning to, my husband had to divorce me a few months ago for me to realise I have a life which I can get on with. May not be what I like but I am alive and can accept my life now.

Try to accept and improve.

Mufc

[Shon48 in reply to Mufc]

It’s hard though isn’t it and 21 years I’ll be 76 . I honestly don’t want to live whatever is left of my life , like this . I’m not planning anything bad but if the neurologist says this will pass I might just feel better and like me again . Too soon , I know but each procedure has made me worse . Better days coming I hope 🤞🏼

Thank you , Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Mufc]

It is important that we are positive we are ?? Lucky enough to survive so maybe what they learn about us can help survivors in the future. I’m an ex nurse.😃😃

[Shon48 in reply to Mufc]

I hope it helps others . My Aneurysm was in such an awkward place that two neurologists were asking over the world in what to do after the coiling, stent and artery occluded. Nobody had an answer except for a German Professor who , although he had no stats , thought another stent placed would perhaps work otherwise I was a dead duck . Must have worked as I’m still here after three months . I’m being used for training purposes now ( fame at last ) . So the neurologists and myself are on a learning curve . . Fingers crossed it gets better ....

[Mufc]

Nice to read something that makes me smile cannot say why but probably to realise so am not alone. Do you live by yourself ? My husband has just divorced me as he says he cannot cope any more. I think he just wants 1/2 of my care money🤨

[Shon48 in reply to Mufc]

No I live with my husband of 44years and my daughter who suffers from m.e . They are both a great help and my daughter does as much as she can while dealing with her own illness . I’m sorry to read about your divorce , it’s hard for people to adjust to this different person living with them . I am 65 on the 5th so I don’t get care allowance . I doubt if I could manage on my own yet . Early days . I need to calm the beast first lol . What a life . Shona 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Cornishwaves247]

Hi,

Your not alone with the fed up feeling. I’m completely fed up with my situation. I’ve just turned 38 and have no independence. I can walk assisted but not independently, the back of my brain feels like the air bubble within a spirit level. Always going off balance which throws me off balance and my vision is impaired to name a few. I am only 17 months on from my bleed which was in the cerebellum, I am hopeful for some improvements though 😊 I stay positive and although each day is a struggle I live it the best I can. I know its hard but you are doing so well. You have made it this far so no reason why you can’t keep progressing. It’s just mega slow... and for me it’s to slow as I’m quite an outdoors person. But I haven’t given up hope. There will be light at the end of this tunnel. I think having a positive mental attitude goes well in your favour. As hard as it gets you have to flip it into a positive. Easier said then done, I know. Stay positive and rant as much as you like, I do at times

[Shon48 in reply to Cornishwaves247]

Thank you . It’s certainly not as easy as they say and from everybody who is on this forum I have a long way to go . You are so young too , I feel for you . I want to do so much but can’t because of the balance issues like you . This beast has certainly changed my life and attitude . I beat cancer so I’ll just wait till the beast settles down now. Thank you for your encouragement and I hope you get loads better too .

Shona 🏴󠁧󠁢󠁳󠁣󠁴󠁿🤗