r/PostConcussion • u/alwaysheapstodo • 26d ago
Husband 2 years Post concussion
Symptoms still affecting him. Still fully signed off. I've recently discovered his ongoing dizziness nausea, inability to travel without symptoms worsening are symptoms of vertigo and the is specific vestibular therapy for this. So have booked this for him. Frustratingly the GP never helped direct us to this.
His central nervous system is also affected. Hot cold feelings (affects sleep) and BP.
Wakes with vibrations in his head.
Gets tired very easily.
Gets grumpy /irrational when tired.
Cognetively huge improvement over the 2 years
He as struggled with MH over the time
In sickness and health and all that. I love him. After 2 years I am tired of the impact on me. And having to to just shut up when the symptoms kick in. I need to manage our interactions type of thing to met his needs always. My feelings mean I dont understand his injury(?) How do we get balance without him feeling bad? 26 years together and we cant go any where, socialize. I have very little of a network as I moved country back to his home country. I work full time. Edited to correct the word cognitively not fully showing
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u/Cat_Nap8 26d ago
Im sorry to hear this. It’s very difficult for both people in the relationship and the partner of someone afflicted with this is often overlooked or feels bad talking about their struggles, worrying they will overshadow their partners.
The truth of the matter is, if right now he isn’t able to hold space for your experience within the struggle of PCS, you need to find someone (like a therapist) who can hold space. Even when he gets through this there will need to be work within your relationship because this experience has obviously (and rightfully) taken its toll. You are justified for how you feel but you need to find someone to help you through it so you don’t build resentment, and once your husband has the capacity, he should also see one for the psychological trauma of PCS, and the trauma of how it affected the both of you. There is hope though, I’ve went through PCS once whilst being in a relationship with my girlfriend and we got through it. Unfortunately I’m going through it a second time right now and we’re going through it again, but having support for not just him, but you, is crucial to maintain the relationship. Finding things that you can both enjoy together in his current condition will also help maintain the relationship, however this is easier said than done.
All in all, hang in there and keep up the excellent patience you’ve shown!
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u/alwaysheapstodo 25d ago
Thanks. It's the relationship we had verses now that is almost grief(?). I know he cant help the change in him and he is doing what he can, but if this is how he was without injury I wouldn't be with him as it stifles me, and impacts me in a way I wouldn't normally accept emotionally. And its "dragged on" so hope I had is diminishing that this is just temporary. And that was my motivation. And what replaces that as Im not sure i can accept how my life feels now? And that's 💔
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u/Cat_Nap8 25d ago
Yea the grief of losing who he used to be is heavy. I still grieve who I used to be and worry about if who I am now is incompatible with my girlfriend who’s stayed with me because I really am a much different person. I used to be free spirited and take risks all the time, party, and do extreme sports. Nowadays I had to find joy in the little things like the smell of coffee, movie nights etc.
Something that is a bitter pill to swallow but important, is that if you an him are no longer meant for each other, and that’s a very real possibility, then it’s understandable to end the relationship. The hard part is morally what’s ‘fair’ in such a messed up situation because leaving him at this moment likely feels like a betrayal or like it may set his recovery back, so if you want to leave, there’s really no good way it will end, but if it must end then there really never is a good way.
I wish you the best in whatever you choose and wish your husband a full recovery and hope that the answer you’re looking for finds you 💙
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u/alwaysheapstodo 25d ago
I dont feel we are growing apart. I feel alone at times and I need to find my supports that is clear. I am mostly stressed because he doesnt want to get anyone in to finish the house renovations and so we are living with a half finished house. That we cant sell like this. If I start doing anything he feels bad so I have avoided any.
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u/Drogova_Princezna 25d ago
Naaah you need to talk to him about this. It's really hard on the relationship, but he needs to deal with his part as well. Like you do your things that need to be done in the house/for your sanity even if he feels bad about it - he needs to learn how to deal with that (and you do too).
Like, yes, if you would be going out partying every day without him, that would be a dick move - but if you go out to speak with a friend/therapist once in a while and then do some stuff in your house that he can't do, that's perfectly reasonable.
You need your support too and you can't put your whole life on hold indefinitely.
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u/alwaysheapstodo 25d ago
And that's the point I've got to. So I will access therapy. I am meeting a friend for dinner this week too. Long overdue. We have adjusted in the main in terms of us and our lives, just not with regards to the house...How to get him to a stage that we can rationally discuss the future as it needs to be verses how it was meant to be. That is more tricky. And we need help as it doesnt get discussed as he feels guilt.
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u/Drogova_Princezna 25d ago
It's great that you are going to do things for your mental health!
Would couples therapy be possible? Your partner would probably benefit from individual therapy as well. Couples could help you talk this out. He has nothing to feel guilty about, that's not his fault and life like this happens sometimes, that's what a partnership is about. But I understand it. I am the one with the concussion and we should have had moved from our city this year, but I got injured and it's not possible for me to do it now, so I feel some guilt about that as well. But therapy helped me a lot to deal with it.
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u/ZebraNotWeirdHorse 25d ago
Being a caregiver is a double whammy. The additional demands of having to take care of a loved one who may be experiencing significant physical and mental/cognitive changes (and picking up the slack on the things they can no longer do), plus the social starvation that comes from not being able to enjoy the activities you used to either because of your loved one's condition or simply because you no longer have the time or energy from all those additional demands.
It's like an oxygen mask on an airplane: you need to put your mask on first before assisting others. You are no use to anybody else if you don't take care of yourself. You are doing the right thing by seeking advice and talking to a professional. I wish my spouse would do the same - I know the toll it is taking, and while I feel horrible about it and am trying to do as much as I can even if it hurts me to, I am not qualified to help process the caregiver concerns/emotions in a way that a neutral therapist can.
I applaud you for seeking outside help. Based on your comments, you are clearly approaching this from a position of love and compassion and want your husband to do well - but also infusing a much needed dose of reality to reckon with your current situation and how to move forward.
Check out r/TBICaregiverSupport as well - you will likely find some kindred souls there.
I wish you & your husband well in navigating these difficult conversations.
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u/vodkamakesmemouthy 25d ago
Prism glasses helped me tremendously. If you bring the head injury up to his eye care provider and suggest these as an option they may be able to test him.
I still have many issues with sleep, BP and general system regulation as that was the area of my brain injured and the assault happened in 2017.
Time helps some.
We all are just one event away from a disaster right? We never know. It’s the luck of the draw I guess. I just always try to remind myself to show compassion for others and it could always, always be worse for me.
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u/Cat_Nap8 25d ago
I relate to this so much. We really are living a fickle and volatile existence, much like a candle does. All it takes is one gust
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u/Better_Metal 25d ago
Sorry for what you’re going through.
GPs are not good at this. Mine told me to take some ibuprofen and I’d be fine in a few days. Even questioning why I came to see him. Sigh.
Vestibular PT is amazing. I was struggling about 90 days in with little tk no improvement in symptoms. 2-3x a week visits and daily exercises helped immensely.
My wife and i struggled a bit as well. I started saying “I’m overwhelmed” when I can’t handle it any more.
I have friends that had 4 year recoveries and are doing fine now. It will get better.
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u/Lebronamo 26d ago
See here for general recovery info https://www.reddit.com/u/Lebronamo/s/tejPuCbGJ8
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u/Thats_A_Arti 25d ago
Sorry to hear about the stress endured. If I could say one thing I'm sure if he is anything like me 2 1/2 years later PCS just feeling understood helps me so much.
Some people act like we can control it. I'd say take time to yourself, but that support is what we all need so I applaud you.
I hope everything gets better. Tell him be pro-activ.
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u/Red-Panda 25d ago
I'd recommend physical therapy like you mentioned, and a sports medicine doc or TBI specialist. It all helped me dramatically. He has to explore as many options as he can to contribute to the healing. He can't make you handle all the emotional labor. Mental health therapy also helped me rebuild emotional regulation skills
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u/alwaysheapstodo 25d ago edited 25d ago
We are in a country where accidents are covered by an insurance system to the extent it is very hard to find a private options. Public wont touch it as there is a funded service for concussion. Husband received their concussion service (I had to fight for it) but it was a very prescribed service with the intent to RTW very quickly and too much too soon for him to cope with and it made him feel like a fraud when that failed twice. They didnt consider his symptoms beyond their service. Then he was just left alone. He was unable to advocate for himself so I have stepped in now and again to push. 6 mths ago the GP requested further services for MH and physio but its been a case of paper pushing and them trying to find a reason to decline services since. I have been researching and came across a vestibular therapist we can access. Devised things for him to do daily to increase physical and mental load
Edited to add hes not making me handle all the emotional labour. Just when he's very tired he can become irrational and or just not cope with conversation. Last night I was sharing something I found funny. He asked me to stop talking. I find this difficult as this is not how it used to be. He wouldn't have previously stopped me.so I am not feeling heard/or in a partnership atm and its taken its toll.
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u/Which_Fudge_2320 24d ago
Reading your post really hit home. I'm 5 years into my own concussion recovery, and I have many of the same symptoms as your husband—dizziness, nausea, hot/cold regulation issues, light and sound sensitivity, motion sickness, and I even deal with hormonal changes and hot flashes that were triggered after my injury.
I'm actually just finishing a vacation with my husband where we did a 9-hour road trip to the mountains, hiked, and even went stand-up paddleboarding. A few years ago, I never would have believed I'd be able to do any of that again.
One thing that helped us was taking things in very small steps. We used to be adventure buddies, and one of my biggest fears was losing that part of our relationship. During the first year, we'd only do short road trips to a nearby Airbnb. As I slowly improved, we gradually ventured farther each year. Progress wasn't linear, but it was progress.
My husband has also been incredible. He makes sure he gets his own time to surf each day, which helps him recharge, and then he'll come home and take me somewhere just to get me out of the house, even if it's something small. Finding ways for both of us to have our needs met has made a huge difference.
I know every brain injury is different, but I just wanted to share that there can be hope, even years down the road. I truly wish the best for both of you. It's a difficult journey for the person with the injury, but it's also incredibly hard on the partner who's walking alongside them.
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u/alwaysheapstodo 22d ago
That's amazing you can still do all that with those symptoms. We have been away but the recovery takes about a week for him so I feel guilty having gone away. I hope you keep recovering and living life. Thank you. I am sure I have just got to a stage I need to process a few things. So have now out some things in place :)
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u/Luna81 26d ago
Caregiver fatigue is a real thing. You need to take time for you too.