Valentines Day: Hello again everybody Is anybody... - Headway

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Valentines Day

Julesgettingthere profile image

Hello again everybody

Is anybody else out there feeling the same as me today ? Would make me feel better if it weren't just me.

I am sitting here with ear plugs in because I am struggling to smile at my husband at the correct points when he tries to be nice.

I feel so false - one part wants to run, another wants to tear down walls, at the same time I have a huge desire to create something, something through painting or drawing.

I am getting glimpses of my reflection in the computer screen as I type this and I don't recognise the ugly woman looking back. My hair is falling out and the face looks old and sour.

I keep getting a second wind and trying to get back onto the road to who I was before the accident, but I am so down at the moment I am struggling these days to understand what the point is when there is nothing left and the new I have I don't recognise or like.

I know that there will be plenty of people out there that are further down the road than me after a head injury, mine was 5 years ago. What is the next stage to what is happening to my brain ? Any advice would go a long way to soothe at the moment.

Jules

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Julesgettingthere profile image
Julesgettingthere
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20 Replies
angelite profile image
angelite

Hi Jules,

Sorry to hear you are so down.

It is difficult to say what lies ahead in terms of brain recovery - we are all affected in different areas and heal at our own rates. I am only 3 years down the road from original illness ( suspected Encephalitis/ possible MS ) and made good progress but a recent relapse has added some new challenges to work with.

You mention that your hair is falling out - have you had Thyroid tests ?

Do you paint or draw, Jules ?

I used to love art in my youth but life got busy and it got forgotten . These days, I struggle to apply myself to detailed/ fine motor work but still love the idea : )

I like to get creative in my garden instead - can't wait for the better weather : )

Angela x

Julesgettingthere profile image
Julesgettingthere in reply to angelite

Hi Angela

Really nice to hear from you.

I seem to collect everything ready to produce a painting or sewing piece but either never finish it or am so disappointed with others reactions to it i end up destroying it.

My hair started falling out while i was in hospital and has continued to do so, but much worse recently. I am not eating and suspect its my own fault.

I am at a loss why or what i am struggling for today.Some things that are gone things that make you you like your face dont come back. But then i am wondering why we all try so hard at anything anyway, even in my previous life now when i look back.

Do you get a desire to find something you are still good at - or are you still able to produce something you value ? I guess its your gardening.

jules

moo196 profile image
moo196 in reply to Julesgettingthere

Hi, too tired to write much but wondered if cooking might be a possible creative thing ?? I know it helped me tremendously as just had to follow instructions .....and had something nice at end of it (better I eat, better I feel too).-alsr, wish someone had mentioned painting by numbers or colouring book....I'm now part of a choir which is so helpful on many levels......living on one's own has positives and negatives too. Hope you saw some sunshine today x

Julesgettingthere profile image
Julesgettingthere in reply to moo196

Hi moo

I have burnt 2 cookers and 2 microwaves - i forget i am cooking something. I did try because i thought it would relax me and following recipes would help with cognitive but i got in such a mess - it was like 'some mothers do have them' ! On a serious note tho, too dangerous.

I do have a feeling i might like to go to church but my husband will not go and i am too shy to go alone. i am wondering if my brain is questioning faith.

Yes saw the sun today - hope you did too

Jules

x

moo196 profile image
moo196 in reply to Julesgettingthere

Ah, shame about the cooking...Maybe you could do it with some supervision?? I guess we are all at different stages...know I had to use timers :-)

Maybe you could contact church and ask someone to accompany you ? I'm sure they would :-)

Julesgettingthere profile image
Julesgettingthere in reply to moo196

Hello again Moo

asked a little old lady who came to my door posting leaflets about her church for information on how its done. She offered to meet me there but i haven't found the courage yet. I hope i do go one day.

I am lucky enough to have a NHS OT who visits me to help me concentrate on staying in employment. Today is the first day i started my 'Activities List'. I have a list detailing each hour of the working day notes what topic i should be doing and for how long. It sounds horrid but it has helped me today from becoming distracted and i feel i have maybe progressed a little with something. Its now just before four o'clock so the list says i should be starting my work for the animal shelter i work for - so i have deviated for the first time today for a quick chat with you !

Jules

moo196 profile image
moo196 in reply to Julesgettingthere

:-) get back to work !

Glad you had a word with church lady - maybe she will visit again ... ?

Take care

kx

angelite profile image
angelite in reply to Julesgettingthere

Oh Jules, the comment about not eating worries me. Do you simply find you have no appetite ? I have experienced this at times and end up on Ready Brek as a bland, easy to make necessity - it is hard to get excited about putting a meal together when your appetite centre does not work. I am a bit underweight . I also take multi vitamins/ minerals to ensure my body gets what it needs. I find I am most interested in food a week before my period, the rest of the time I am rather lacklustre about it ! Ensure Plus and other types of substitute meal drinks might be useful ? GP can prescribe bulk doses as to buy individually is very expensive. There are both savoury and sweet flavours.

nutridrinks.co.uk/ensure-plus

I too have gathered craft materials in a box but not yet done anything with them. As I said, the thought appeals but the dedication is lacking !

I think you should paint and sew for your own enjoyment and not worry about what other's think, if you have enjoyed the process and like the result. It's your own individual style which makes it special. Now that we have a section for art/craft on Headway, it's always nice to see what other's have created : )

Yes, I have the desire to prove to myself that I can still accomplish things but have realised that sometimes I have to adjust the way and length of time required to get results - enjoyment is a big part of it - if I am forcing myself rather than wanting to it is time to leave it until I feel more refreshed/enthusiastic or it turns into a chore ( and life is full of necessary chores already ! ) I don't feel that I'm particularly great at any one thing but can do a reasonable job on a few things DIY wise so that'll do me !

We can't do much about the ageing process but I fully intend to grow old disgracefully and still enjoy putting on nice clothes and having a bit of a dance ( albeit with stick ). I hope you are able to get out and about and still enjoy some activities - I love live music and hunt down all sorts of gig genres on the internet to see if price and locality is a possible ! : )

Angela x

Julesgettingthere profile image
Julesgettingthere in reply to angelite

Hi Angela

Just read your reply - lifted me, i know we all seem to have similar problems, but its comforting to be reminded its not just me here.

I dont have an appetite at all. My sugar intake is sky high tho. seem to have increased it in the many cups of coffee i drink. Getting thinner all the time doesn't go well with getting older i know, but eating really feels so wrong at the moment. I will talk to the GP about supplements as i have a few in the drawer and i do remember them being expensive.

I work only part time now and all of it from home. It still feels very alien to me - cant settle.

I didn't know they did art on Headway now would love to be involved or at least see what others are up to - but i am not clever at computers now and will probably have problems locating it - is it easy ?

Really enjoyed chatting to you - sometimes it takes me a while before i reply because i have stayed away from my laptop, sorry for that. Company much appreciated.

Have a nice night

Jules

angelite profile image
angelite in reply to Julesgettingthere

Hi Jules,

If you click on Posts to get to the main page, on your right is a heading 'Topics'. Towards the bottom is a poems/art /photos section where you can post your own or view others.

I am not remotely technical minded so cannot help with how to post a photo/picture but I'm sure if you put a post up asking how ,someone would come to your rescue ! : )

Take care,

Angela x

Julesgettingthere profile image
Julesgettingthere in reply to angelite

Thanks Angela

I will have a go

Jules

randomphantoms profile image
randomphantoms

Hi Jules

Recognising that incredible double urge to destroy and create.

Why not do it. Once I told my hubby I needed to smash something. He duly obliged by presenting me with a sledgehammer and a hard drive from an old computer.

He did tell me to take them outside. I did and set about releasing the frustration. It worked. Unfortunately I also smashed a step in the garden.

As for creating give anything you can think of a try and keep the sledgehammer on standby.

Having tried and failed miserably at colouring in and knitting I found crochet. I am slow but have made useful things and it feels good. On that point take pictures to remind you of what you achieve and it shows you getting better at your hobby with practice.

Whatever you do remember that you are doing it for you. At the moment I seem to be going through a sod it/them phase.

Honestly though if this feeling has lasted a while maybe you could consider counselling to help make peace with the you post bi .

Love n hugs

Xoxo

Julesgettingthere profile image
Julesgettingthere in reply to randomphantoms

Hi Random

I loved the computer and sledgehammer comment - honestly, each day i get nearer doing it.

Jules

cat3 profile image
cat3

I love gardening ; I swear it's what keeps me sane, and the rewards never fail, year after year. It's my private space where no one ever interferes but, when in full bloom, is appreciated by so many people which makes it even more worthwhile.

I enjoy crosswords, online solitaire & jigsaws when not reading. My eyesight's poor owing to cataracts so I've treated myself to a Kindle, which of course magnifies the print to any desired size.

And for special occasions I write poetry, either in blank greeting cards or typed across an enlarged photo of the recipient, then printed out and framed.

It's interesting you've mentioned 'Valentine's Day' Jules ; sort of suggesting that there's an element of what I call 'Occasion Blues'...........when life just doesn't measure up to the occasion one bit. I can identify with that m'dear, though I've lowered my expectations to nil these past few years anyway !

It's a rotten time of year to keep up any kind of momentum though ; I'm tempted to slope off into hibernation for at least a couple of months around this time, but always look forward to the daffodils & other spring flowers & buds.

Hope you can pluck up some inspiration, maybe when warmer weather returns. It's surprising where it can be found ; I've just read an amazing book about North Korea (of all places) which was almost beyond belief and quite un-put-downable.

It's 'Nothing To Envy : Real Lives In North Korea' by Barbara Demick. It's available from Amazon and can be accessed through tablet or PC.

Hope the replies go some way to bolster you a little Jules. Take care, Cat x :-/

Julesgettingthere profile image
Julesgettingthere in reply to cat3

Hello again Cat

You always seem to be around when i am down - always have sound advice and a shoulder - thank you.

I do look forward to Spring time - i love the idea of all the small hibernating animals awakening.

I have 2 ponds in the garden and spend hours watching the frogs when they are here.

Yes you are right, nothing lives uop to expectations now. Sort of nice to know you feel the same. My mum asked me how i felt about my life and what i had done and i replied without thinking ' i thought or expected there to be more'. its quite shocking how little there is to life when you at last realize.

Sorry cat, dont seem to be able to stop myself moaning these days.

Better tomorrow

jules

Iwona084 profile image
Iwona084

Hi Jules, first of all excuse my english, this is not my first anguage and even though I have no intention to sound strange or straightforward, it often ends like this.

A while ago I have tried colouring books. I really recommend those. There was a time after my SAH, I could not read or write (those are two things I enjoy the most) so I was colouring, it helped me focus and it actually helps to create, maybe it is not painting, but still you surround yourself with colours, and it takes a long time to finish so you can actually plan that for many days, or week.

The second thing is baking! What about sharing some recipes? If you do not have an idea I can always provide you with some. Im sure you can also find this online. Some chocolate muffins, or some beautiful cupcakes that you can actually decorate the way you please, this is also a creative activity, plus the smell of fresh baking in the house is so so pleasing :)

You mentioned your look. I do not know how you look and maybe it will sound stupid, but if you are not happy with your hair change it! Few months ago I was feelling the ugliest person the whole world, I do not even felt like having showers, it still happens but I decided I needed a hairdresser. Maybe try one too, please do not feel offend by that, you need to like your reflection, so try to find a solution, maybe a hairdresser can suggest something or propose a solution.

A while ago I was writing on this forum I would like to have my life back, and I got many answers saying I should create a new life, new goal, new me. It sounded overwhelming then, but now I see what these people meant (thank you Cat!!!).

You have to adjust, but it is still you. There is not another person like you, you are a unique in the whole universe!

What about reading? Can you read? For me reading was always an inspiration. I can recommend some titles, if I know what you like or liked.

And, btw, not everyone is having valentines day, there are countries where you dont celebrate V day.

xxx Iwona

Julesgettingthere profile image
Julesgettingthere in reply to Iwona084

Hi Iwona

You wrote that lovely - English is my first language but i have always struggled with it - even before the accident.

You probably know now i cant use cooking as the fire brigade know me too well now and i cant follow written instruction.

I didnt take offence about your comments regarding changing my hair - you mentioned having problems wanting to shower - i feel the same. I really dont want to be reminded about my body and still have to push myself to do this.

There are so many things people on this site have in common - its comforting.

I know what you mean about 'Cat' - she has picked me up on some very low notes over the last few years. All thre time in the world for her and have never met her

Have a nice night

Jules

Elenor3 profile image
Elenor3

:( Sounds like you're having a really hard time. I can relate to not recognising the person in the reflection. Unfortunately I'm surrounded by photos of myself doing a job I used to do and am no longer doing & I find that really hard. But aren't headphones a great thing? Headphones are my best friend now lol. Advice........it's so hard to stand in someone else's shoes - but I'd say headphones have to come out and go cuddle hubby and tell him why you're so sad. I'm amazed that my partner is still here and it's only been a matter of months with my new behaviours, weeping, unusual psychological outlook, saying inappropriate things, fatigue and general loss of who I was before. We just have to keep trying :) John Lennon said 'Everything will be all right in the end - and if it's not alright.......it's not the end. Wishing you all the best for the future and positive changes to make things better :) x P.S. oh and try L'oreal Revitalift - I don't care if it works or not - it makes me feel like I'm doing something to help lol :)

Julesgettingthere profile image
Julesgettingthere in reply to Elenor3

thanks elenor - odd but i use loreal for the same reason x

Elenor3 profile image
Elenor3 in reply to Julesgettingthere

Lol :) it's better than doing nothing at all - £6:49 in Tesco at the minute x

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