a little rant

[AntiNMDAWarriorWife]

I’ve got to vent and this is the only appropriate place to do it.

Bit of context first; Husband is in recovery from anti NMDA encephalitis/ ABI with various other health complaints and whilst recovery is happening, it’s very slow especially after his relapse earlier in the year.

BUT it drives me absolutely insane when people who have a 5 minute (if that) convo with him say ‘oh he’s doing so well!’ or ‘he’s almost back to himself!’ because NO. He’s not!

- he still has an entirely different personality.

- they don’t see how that tiny interaction wears him out to the point he’ll sleep as soon as he’s home.

- they don’t see the tears we have daily at the moment as he’s becoming more aware of what happened to him and what he’s lost.

- they don’t see the anger and resentment he has towards me because I’m able to drive, work etc; do things he can’t do (at the moment - as I keep reminding him)

It’s half 6 in the morning, I’ve just walked the dog alone in the pitch black which hubby wouldn’t have dreamed of letting me do alone prior to all this, I’ll wait several hours for him to wake up, I’ll have done all the housework ready (he has quirks now too - no ‘bits’ on the floor), I’ll make sure he’s had his tablets, I’ll have to check he’s changed into clean clothes, I’ll have to remind him to brush his teeth - this list goes on and on. Every single day.

So no, he’s not doing as well as you think after your very limited interaction with him.

I’m sorry - maybe I’m being unreasonable but I’m so frustrated with it all!

[SJTJ]

I feel your frustration!! People just don’t understand the complexity of it all.. I’ve given up using my energy explaining to people, who will not make any difference to our daily lives. Keep your circle small and reach out to people that will understand your situation.. Stay Strong!! X

[mucky1]

Hi my husband is recovering from a severe brain injury which happened 5 years ago.I have the same people see & speak to him for a short while then tell me hes back to hos old self !!

But like your husband he is not , he's a totally different man, but he doesn't think there is anything wrong with him !

I've been through a lot of heartache like you, but I now try to look after myself, do things for me, go out with friends even holiday be myself.

I used to feel very guilty but you have look after yourself & your mental health.

Is your husband safe to leave ?

It does sound like you need a break to recharge your batteries.

People don't see what goes on behind closed doors, but they haven't had to deal with the things you have.

Please take care of yourself there are others in the same situation who know how you feel and some times we all need a good rant to make us feel better.

Take care of yourself

[Charlie15 in reply to mucky1]

I feel for you am in same boat husband had a tbi in July 21 he’s a different man I married he needs 24 hr care and I said exactly the same to my daughter you go to apps and it’s like he’s doing well try this try that and my wording was it’s alright all the professionals who work head injury patients but try and do it for a few days and it would be a different story it’s so draining on us he wakes from 4 every morning 😢😢😢 I just run on coffees . He’s waiting for a nose op so he can’t get full benefit from Sleep apnea monitor all I get told when he has op his sleep may improve.

[Freespirit86]

I Can really relate to what you have said. My husband had brain. Surgery 2 years ago , they mask things in front of people but behind close doors they so different and difficult to live with the constant high and low mood that doesn't just change daily it changes hourly. If you ever need to vent I'm here .

[Teazymaid]

I’m in a very different place to you but as far as others not having a clue I’m slowly trying to understand this and I’m nearly 4 yrs past my tbi .. I know how difficult/ different I am and I’m no longer in denial just trying to except it . I’m not sure why my husband is still here and I don’t think he did as much as you are doing …

m so pleased you share your feelings on here as we all understand how life has changed beyond belief ..

I can only recommend seeking counselling for you both , together and individually .there is pathways through this and people who can help .. talk with your GP , go private , read books , talk on here , seek counselling and all of this will help with what you are dealing with and your husband to also get rehab and learn to except/ understand the new him .

No one will have a clue what you are both going through . It still does my head in when people say to me how well I am yet they dont see me struggling with simple tasks daily .. and im getting good at finding new ways of doing things .. I have had to go private for lots of things .. as the nhs I’m my area is virtually non existent with neuro and rehab ..

I am going to stop as all you may get from me is negative and that’s not what I want to do .. get help , others will never have a clue and talk to your GP or email them as I do know as 10min appointment is impossible to get out what is in your head ..invisible health problems as the worse to deal with 🥴 Sue x

[Leaf100]

Call Headway and talk to them, see if you can get some help or counselling at minimum..You can't do it all, and certainly not long-term. It is exhausting.

I have a mtbi and also cared years for an elderly parent - who had a good brain - just the body was the issue.

I could.not have coped at all otherwise. It's exhausting even when you get cooperation.

You need help- anyone in this situation does.

I understand you may not feel you have the time (been there) and you really need to start looking around before you hit the wall over it.

Giant virtual Leaf

[WonderingWanda]

I really feel for you, it sounds like you are having a bit of a time at the moment. It will pass I know but if it helps to vent then you go on and do it.

I think that people want to seem encouraging and look for the good as they are basically uncomfortable with talking about difficult topics like disabilities. It’s their failing.

I am able to appear normal and that is the only time I go out and engage with people so they all think I am fine. Only my partner sees the whole thing for what it is. I am grateful for her daily and say so.

It must be frustrating if your husband doesn’t yet have the insight to know how it’s affected you. Just give it time. You can only do your best and you can only do things for him because you want to do them and not because you want to have it acknowledged. If you start resenting doing things then it will grow and become a negative drain on you until it makes you ill.

Make sure you take time for yourself and do things for yourself too.

One day he may notice but maybe he won’t. It’s like caring for someone with dementia and totally unsung.

[Nemo24]

My heart sank reading your piece above. Life got turned upside down when I had my brain injury. Like your husband I daily deal with similar issues, but not on his scale. Also have no visible scars, lumps or bumps to make the injury visible. Have been lucky to have supportive family and friends. Some old ones and some new. Made through two charities, Headway and Silverlining. Now taken up a photography group and been drawing. New pastimes 🙂

I hope you are getting some support too. Look after yourselves.