going backwards

[Furtherout]

is it normal after a period of plateauing to go backwards ? My husband had his TBI nearly a year ago - he has improved over the months but about 6 weeks ago seemed to go backwards - I expected a plateau but his mood, volatility and desire to be alone has got so much worse recently 😢

[TaIaV]

You might consider if the change in seasons is part of the issue. My husband started waking up in a bad mood about then. Based on various suggestions I have 1) started to get him to bed 1/2 hour earlier, 2) moved his anti anxiety medication to the night so that he is waking up with half the daily dose effectiveness ahead of him, and 3) bought one of the Carex lamps for Season affective Disorder and put it on while he eats breakfast. He is in a much better mood. I think that the light is a major factor. The manufacturers recommend that you consult with your doctor before trying it.

Best of luck.

[TreesMTBI in reply to TaIaV]

Yes Furtherout, and TalaV, I would second this about the light: also might want to get your husbands’ vitamin d levels checked as well, as this dips considerably during winter months as low levels can affect mood and things.

Tx

[Leaf100]

Hi Furtherout,

Although from a medical point of view, it's best to consult Headway to be on the safe side, I have a few things for your consideration.

Has he been trying to up his game and do more? Is he sleeping as much? Have there been a lot of changes in either where you live, how you have things arranged, or what programs he is or isn't doing?

Often what happens is the person has some healing, and then, the next layer of the onion shows up, and while they are processing that, it can appear they are going backwards.

Also ,anything that really takes a lot of processing can also make it appear the person is going backwards, but they really aren't. They can be overtired, the weather can be very changeable (yes, the body and brain work hard to adjust to changes in weather with a bi than it did before- even regulation of blood pressure from sitting to standing can take longer). The person can be trying things that are more taxing to the brain.

Doing too much (for them) can also be the culprit. I know for myself, when I over do it, the symptoms flair. Grief can also do it (it's like having another brain in jury on top of the one you have). And, when someone is coming to terms with their life being completely different, about how they react and respond to things - there is definitely grief involved.

At such times I find it best to go back to basics - encourage him to eat properly, get some fresh air and mild exercise that doesn't wear him out, and take care of the sleep thing as best he can. (Sleep when he can, sleeping is when the healing happens. And insomnia is not uncommon. There are sleep tips here on the thread somewhere if you search for them - it's a popular topic of conversation.)

In general, days that look and feel backwards don't last forever. If you observe with curiosity and make some notes, you may be able to find a correlation between them and things in the environment or things that are going on in general. All this info may help him manage better, and also be of some comfort to you (he isn't getting worse! he just played too long with the cat!) and will also help you to manage the calendar - like an activity day, a rest day - oh this activity means 2 rest days... whatever.

Curiosity and observation can help a lot, actually . And do get info from Headway. Reading about general things people tend to experience and related coping strategies can go a long way. Of course your husband has to see in them what works for him, and what may apply - because he is the only one who knows for sure. Just the same, have had people point things out to me along the way, because the penny hadn't dropped - it may have taken me awhile to see it myself, but I did get there.

He's so lucky to have you in his corner.

And, do remember to ask Headway what help is there for you - in terms of materials, family support groups, etc. You need some tlc and care, too. So, don't forget your self in this equation.

Keep us posted.

Leaf

[Furtherout in reply to Leaf100]

Thankyou so much- I will call Headway again it is comin g up to the anniversary of his accident (Christmas Eve!) and I think that is playing on both our minds .

[Leaf100 in reply to Furtherout]

Yes. Anniversary upheaval is a thing for sure.

[Mhelpsme]

I don’t think there’s a definitive answer as everyone is different, but my TBI was in May ‘22 and whenever I thought I was progressing , I’d have a crash. My doctors said that it wasn’t a clear run and that I would have ‘dips’ (their term) when I felt like I was regressing.

It’s taken over two years to feel like I’m becoming stable. I know my issues and I try to manage each day in order to overcome them. This way it has less impact on me and those around me. My biggest hurdle was accepting that I had to do this. I was angry and kept trying to be like I was before the accident, then I’d get more angry and frustrated when I failed. I felt that others didn’t understand what I was dealing with as well as the pain that I was getting.

All I can try to advise is below. Hopefully this will help 🤷‍♀️?

Does your GP surgery have a Wellness Team? Clinical people who work alongside the GPs to help with mental health issues. I cannot thank my lady enough in helping me come to terms with everything. I had weekly sessions for over two months.

Also it may help if you told your GP how you’re feeling, so you could have this help as well. It’s not just the patient dealing with a new life, it effects those closest to them also. My husband came close to leaving me because he said life was a rollercoaster. One minute I was nice, the next I was being nasty to him and going off on my own. He’s since told me since that he put a tracker on my phone so he knew where I was at all times and often sat and cried.

Fatigue is a killer. When tired everything is worse (emotions, pain, mood swings). So your husband will need to “pace” himself. He’ll only know through experience what he can do before the fatigue gets too bad. I had a Fatigue Diary which I got from “Brain & Shine”. This helped me.

I won’t sugarcoat it, it’s a long hard road, but it does smooth out.

[Furtherout in reply to Mhelpsme]

Thankyou so much for your response - it just helps sometimes to not feel quite so alone . I am having some counselling but my husband refuses to engage with anything now - he even makes me cancel all his follow up appointments for scans etc . I think he is still in some form of denial and I am trying to learn to just let him ‘be’

[Mhelpsme in reply to Furtherout]

Sounds very difficult for you. I’m sorry for you as I know how I hurt my husband.

I’m glad you’re having counselling, it does help… if the person you’re talking to understands, but brain injuries seem to be a grey area in the medical profession.

Have you tried telling your GP that your husband is refusing further appointments? Maybe he/she could do something??

My acceptance didn’t come until I was told in the hospital that two Years was viewed in the medical world as the limit where the body’s healing has gone as far as it can. They did say it may be different for brain injuries, but 🤷‍♀️

After that conversation I realised that was it. I was what I was. I had to accept it and move on.

Stay strong. I know it’s hard for you and I wish there was more I could do to help you.

[Leaf100 in reply to Mhelpsme]

Just to clarify, the fastest healing with bi happens in the first 3 years or so.And past that, you still make progress - yes. You have to keep trying and taking on challenges as you can manage. And you still keep making progress.

I am not saying there may not be some residual issues

I was told by a very well respected and internationally trained neuro psychiatrist that healing keeps happening.

A lot of docs just don't know ant better.

I am 16 years out and I am.still improving.

I feel a lot of the issue is they don't understand this and basically they aren't offering many therapies that actually have a major impact. We just aren't getting ehat we need, and have to stable around ourselves trying to find things that work.

Leaf

[Mhelpsme in reply to Leaf100]

Thanks for this info. That’s really cheered me up. It’ll be three years next May so I’m still in the early stages of healing then. ☺️

It’s great to know that healing continues over the years. My main trouble of my short term memory, it causes all sorts of issues and I feel so relieved that this may get better over time.

I’ve only just had my first Neuro assessment and have to go back in the new year for cognitive tests. I’ll ask them about the healing then.

Thanks again Leaf, you’ve made an old girl very happy. 😊😊

[Leaf100 in reply to Mhelpsme]

I am so glad, MHelpsme. And who knows, maybe your memory will be like mine - there is no problem with it, it's just when I get tired it doesn't get stored in the first place. Ya, so I still write things down and it works way better when I keep life simple. It's a good reminder... 😉

[Mhelpsme]

☺️

[Ideogram]

I can't speak for him, but I'm a year out now and feeling rubbish at the moment. Work is often busy in the run up to Christmas, social/other stuff can be busy, and the weather/darkness means you can't get out and about so much in the evenings - potentially affecting sleep and also making it harder to switch off from work. I go from hours on a screen working to hours watching TV in the evening. Staying stressed the whole time definitely exacerbates fatigue and symptoms for me. Plus this is the time of year to catch bugs that make you feel worse too.

If it's a year out, and he's comparing to last year, it may also be making him feel low - thinking about himself 'before' and also thinking about the things at Christmas/going into a NY that he can't do this year. It's a time for a lot of reflecting.

This is ultimately all supposition though, so best to ask him if you can (and if he knows), and support him in cutting out all the unnecessary stuff and expectations, so home can be as calm and relaxing as possible. A partner or friend who's willing to just cuddle on the sofa and stroke your hair with all the lights and noise turned down low is worth their weight in gold with this.

[TBI-wife]

Hi, gosh, I thought I'd written this! Just going through exactly the same with my husband. It's not helped that the other sides insurance has put a hold on all the rehab. Its really sent him backwards, the arguments are a nightmare and trying to balance him and our almost teenager is awful. I'm sick of having to peacemake and try to find middle ground when I feel like I've had as much trauma this past 15 months since the accident. Haven't got much help other than to say you're not alone, I know that's helped me. Deep breaths and look after yourself too!