Little up date: So husband still doing well. Though... - Headway

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Little up date

New_beginning profile image
13 Replies

So husband still doing well. Though had to reach out to his consultant recently his fatigue when he has these illnesses mainly throat infections/tonsillitis wipes him out to point balance dodgy this happens 6-8 times a year average 2wks each episode. I have been monitoring since 2nd year as we're now 3.5years. So consultant exploring with physio/OT. I don't know if milestone asking for help, but we know he needs support aids at these times now to bring reassurance to both of us. It isn't just early stage, it appears this is it when illnesses occur. This I feel is positive maybe we're both reaching a milestone asking for support.

Daughter age 5 she's loving 6wks holiday I'm using lots of annual leave to spend time with her, and using carers leave for my husband's headway sessions. It's done me good staying away from toxic workplace.

Now ladies and gentlemen our son passed his A Levels and received his welcome letter from University today. Our son youngest being a July baby had his GCSEs at 14 nearing 15 though which took place 2020 at nasty stage during really early days of TBI. He done well, he stayed on 2yrs at 6th form and persistent doing his studies whilst our family dealing with gritty stuff. But our son now passed A levels and starts university next month.

My whole fear has been impact on kids now my son recently turned 18 and despite all the obstacles he still managed to stick to his education

Oh last time we had new addition to family our little Frug, we are smittend with her. But yesterday husband and daughter came home with lizard we called her Camilla she's a leopard Gecko. Not my thing but husband and kids like it.

Were busy/hectic family but just me still juggling work and care to husband and our 5yr old (she has app next month ref trauma mimicking autism so now putting energy in to her support as husband and son ticking over nicely.

We still do our daily routine and structure from day 1 when husband home, it really has helped reaching this family functioning; living life best we can working with TBI, but the unwell episodes disrupts are in going daily progress.

Thanks for reading I just wanted to share good news in our son

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New_beginning profile image
New_beginning
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13 Replies
ksws profile image
ksws

Congratulations to your son NB and to you too.!! 🎉. The fact that he managed this is down to you, you have brought your family through the toughest of times and look at the results 👌. X

ABIfamily profile image
ABIfamily

Wonderful news about your son's exams and uni place! Congratulations x

Jodac8 profile image
Jodac8

Well done you I'm so happy for you I can remember all the dark times you've had to get where you are now.Congratulations to the teenager you must be so proud of him and be proud of yourself too for making all this happen 👍

cat3 profile image
cat3

Great news Nb... It seems we're all agreed that any good fortune in your family results from the tireless devotion of the wife and mother !

But credit to your boy for keeping up with studies throughout the worst of times ; no easy feat for sure.

I hope your man's recuring illnesses are given extra scrutiny, giving you both at least more peace of mind and hopefully better understanding and treatment.

Hope you find time for some personal TLC m'love.... Cat x

New_beginning profile image
New_beginning in reply to cat3

Well since exhaustion scare my body burnt out feb, I had session of b12, I'm eating, I take daily supplements and wait for it I have reached 8st (3years if 7st and under ) was physical sign I was unwell to even a stranger I've managed to keep on for a month now. My hair grown thicker too. I still have lots of other stresses but 6mths of working towards health been good. No time for exercise at the moment still but I'm plodding along with life demands and you know what I keep quiet life, but my family do cause drama I e husband 😂

cat3 profile image
cat3 in reply to New_beginning

Keep doing what you're doing Nb ; you're amazing..... x

ored13 profile image
ored13

This is AWESOME!!!!!!!!

And really really well done on moving getting into uni!!! Not easy, esspecially adding to the fact that home life can just be different to what his peers will have/ are experiencing. Great news all 'round 🥳🥳🥳🥳👏🏽👏🏽👏🏽👏🏽👏🏽

Painting-girl profile image
Painting-girl

You've done brilliantly juggling everything NB - keep on keeping on. Congrats to you son and you on the university place! Lovely to see your update too.

I obviously only had MTBI, but I notice that viruses knock me out for longer than I would expect these days , seems to strike when I've been overdoing things, and then it's hard to recover. Wonder if anyone else finds this?

New_beginning profile image
New_beginning in reply to Painting-girl

Yes his unwell episodes do correspond when he's over doing but also appears a combination of severity of unwell episodes. I'm not going to deny, if I wasn't so confident in meeting his needs and knowing his symptoms he's most be likely to be admitted to hospital each time if GP actually seen him as they as not specialist and not experienced with every minute of TBI. The impact of severity of fatigue has now caused alarm for wheelchair to be used on unwell episodes and even going out accessing community to prevent. Part of me feels it was the inevitable and possibly 6th sense reason we called out for support knowing we can't sustain much longer and was getting iffy trying to beat the odds or trying to prove reports wrong. We have follow up on wheelchair route again this month. I don't feel sad, I feel we have to now follow recommendations, as scared everything we have tried to achieve might be undone and whatever lies ahead for us is slowed down x

Silkwood20 profile image
Silkwood20

What a journey it has been for you all! You have just kept going through such extreme times and difficulties. You must look back and see how different a person you are from all this. You are a much stronger woman (and family) now.. It's great you are sharing this, others will be given hope by reading it...That's such good news about your son, delighted for you all. And your lovely little daughter, sounds like is going on well too.

God Bless and keep on going!!

Bichou73 profile image
Bichou73

I am so pleased for you. My husband had a TBI 3 years ago. He has been home 18 months and we have tried to cope with a 24 hour care package and me as a second carer. It seems that you may have had less outside help than me but you have stayed positive. I also am suffering from burnout and are addressing ways to combat it. Well done and all the best for the future. Another similarity in your story some very good À level results for my granddaughter. By the way what sort of seesions do Headway provide when your carers are on leave please?

New_beginning profile image
New_beginning in reply to Bichou73

Hello. Headway sessions provide different activities and enablement sessions, maybe give them a call. My husband started June 2022, we was left with no support for first 2.5years (clinical team would do frequent check ins with us at home). I used all resources from speech and language, clinical team and put all theories into practice with own holistic approach for whole family. Lol it has been rigid, but has provided solid predictability. I've yet to even have carers assessment, or meet actual carers, yes I've had 3x burnouts since his TBI , it's horrible. But I have no support so unable to rest so really can't afford to be ill or massively exhausted. All the best

Nanapal profile image
Nanapal

Really pleased to read your update. Brilliant news for your son so well deserved and congratulations to him. Your post re yourself and your family has so much positivity which is a reflection on how well you as a wife and mother have kept going despite many setbacks.

Very best wishes to you all.

Take care Nanapal. x

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