After our trip to york for weekend it hit home to mark how tired he is. Even the train journey took it out of him. We didn't go far we were in bed watching emmerdale for 7 Friday night which was fine with me. Saturday we went on the sightseeing bus right outside the hotel got back watched rugby and i booked us into restaurant in hotel for tea. I saw the signs and really felt for him. He knew how he was feeling and tried to put a brave face on. He eventually said sunday morning waiting for the train home how sorry he was for being so boring.
Of course i just hugged him and said you've never been boring and you've no idea what being with you means to me. The realisation is kicking in now i think which is hard to see. The woman sat next to me on the bench put her hand on mine once I'd calmed mark down and just smiled at me. I'll never forget that or our trip to york . I had a wobble yesterday when mark was very down i stupidly said how lucky he was. He said am i lucky? I won't be saying that again one day i hope he says it to me. Xx
Written by
debbie36a
To view profiles and participate in discussions please or .
Oh, Debbie, I feel for you. It's a long road, and there's no real consistency in the support for either the brain-injured, or their carers. I hope you know you have a massive network of support on here, that we're all at different places, and have different perspectives on the journey, but we're held together by that common theme of 'getting through.'
I'm six months post-haemorrhage, with more surgery likely next year. In the early stages, 'The Outside World' was very, very draining, there's so much stimulus for a healing brain to process, sometimes it's overwhelming. I'm managing the 'drain' factor by only doing what I need to do, even if that seems a bit odd to observers. I'm in a tricky situation, being married-on-paper, I've told the husband a million and one times just to get on with HIS life, and not worry about mine, but he still thinks nothing of a trip to McDonalds. I can't do that any more, the shrieky kids, and the fluorescent lighting are bad enough, without the fact that the husband chews with his mouth open, and makes me want to punch him in the face.
I say it a lot, how lucky I am, because I know just how bad I could have been.
I'm lucky to have survived and have any quality of life at all, and I remember that every day.
It could have been so much worse.
So I do count myself lucky, lucky I have the husband , family and friends I do.
Plus I've met a lot of lovely people through this forum, so , yes I am lucky.
Long may the positivity continue, ther will be many more trips like the York one.
Our cruise last year helped me realise there was a future out there for us.
Best wishes. Janet xxx
We are in the middle of exactly the same thing. Friday hubby had a trustee meeting so long drive, long meeting, long drive to mum in law for the weekend. Yesterday we went to a national trust place and he spent the day saying he was fine, then didn't sleep all night as seriously fatigued. Today going home later than planned as have to meet son at train station and times have changed. Therefore hubby will be tired, grumpy but says he had a lovely day yesterday.
I have learnt that where ever possible to ensure hubby only does something on alternate days, this includes travel as it totally exhausts him. I also try to go self catering now too as it gives us more flexibility to work around hubby's needs. Meals out tend to be lunchtime rather than teatime and on occasions I have suggested I need to lie down quietly with a book so hubby doesn't feel guilty that he needs to take a break. It's all trial and lots of error, but sometimes we get it right.
Sounds like you did have some good times away, focus on that and perhaps next time you can have a few more days a way so you can plan it slightly more to suit what your husband needs. Good luck. Xx
Morning - I guess everyone's definition of "lucky" is different and changes from moment to moment perhaps ? Not sure I'd count myself as lucky if I think about a lot of things that have happened in my life ( won't divulge everything here) - but then if I reconsider and count my blessings then some of it could be counted as being "lucky" . I think with BI this is all heightened and confused from time to time ( so I try not to think and just plod on). We don't choose to have BI - so that isn't being lucky - it may be lucky that we survive - and those of us going through recovery / rehab generally have to put so much effort into it that it's SO exhausting - how can any of that be lucky ?? It's all effort ...... Even thinking back to my kids - many people tell me how lucky I am to have two bright intelligent boys - well, yes, but that wasn't just luck either - it was giving up a lot of my life and being very strict about certain things which has helped steer them in the right directions. Not much of it was left to "luck" .
Best dash and sorry if that hasn't answered / helped your situation. At least he is lucky to have you around still .My partner of 18 years kissed me goodbye at a&E never to be seen again since last October - but then maybe that WAS lucky ..... he perhaps couldn't have coped with the whole situation and made it more tricky rehab wise ......
I suppose what I am saying is luck can be seen from all sorts of angles and with BI your hubby will be experiencing all sorts of emotions ....... Good luck and plod on !!
There have been times when I would have said the same as your hubby,especially in the early years. I'm more able to see the positives these days although that can change in an instant depending on circumstance.
I feel like I survived a brain injury in the first 8 years, then I learned to live with my brain injury, I hope in future to say I did xyz despite my brain injury.
It was the consultant who first said those words to me and I think I just stared at him. It wasn't 'til months later that I began to appreciate how much worse it might have been.
I'm still quite 'iffy' about it though when anyone says 'OMG you've been so lucky' considering what I've lost/how it's changed me. But then I know of others left with terrible disabilities, like my pal Geoff who died this year, and I start to 'get it'.
I'm so happy to see that you and Mark are sharing happier times, albeit with some lifestyle changes. And he is lucky Debbie ; in having you, but please don't tell him that !
It takes a while to gauge what someone's limits are after BI, but it looks like the two of you are working very well together.
So glad you were able to have this time away, even if on a toned down scale ,activity wise. As you so rightly say, you had time together, with only yourselves to suit, which is so precious : )
That was a lovely moment with the lady sitting next to you - such a kind, understanding gesture.
You are quite right - we are not boring ! We just do things in bursts followed by rest periods ( or total zonk outs, depending on how much we overdo ! )
Do I feel lucky ? You bet ! Unfortunate for getting a rare illness in the first place, yet the experience has really broadened my perspective and taught me so much about myself and others. I am massively relieved that my various body systems calmed down and allowed me to return to reasonable function after the first 6 months - although it takes a lot to run this new ship, I have learned new ways to work with the problems I have left. I accept that some of this may be long term and that is okay with me : ) It is not always as well accepted by some other folk but my body and brain go at their own pace now and no amount of other people's expectations is going to alter that !
Life is slower now, less frantic, more relaxed.I have physical/cognitive limits. So periods of major activity need to be planned for, followed by a period of recuperation time. I find it makes the special occasions all the more precious as they are no longer taken for granted and have to be paid for in fatigue !
Life is still good, if you are willing to compromise : )
Hi Debbie. Lovely to hear you got to spend some special time together.
Lucky is a hard word to hear when you are still grieving for the old you, the old life, the 'way things were' and it can take an awfully long time to reach the point where you see things from that perspective.....some people, it has to be acknowledged, never do.
The fluctuating nature of symptoms doesn't exactly help...you seem to be trundling along fine, then exactly as Roger says, suddenly you find you seem to have 'burned up what brain you have' (powerful description btw Roger); this means you end up on this yo-yo of 'hey, it's going to be pretty much like it was'-'no, it isn't like it was at all'-'heye, it's going to be pretty much....' etc. That is, I think, what takes the time.
You aren't just making the adjustment to a position of not being able to do what you used to do, you are making the adjustment to not being able to do some stuff, and perhaps being able to do other stuff, depending on symptoms/weather/previous activity/other people/environment/what day of the week it is and what you had for breakfast (ok maybe not the last 2, but it is so random it feels like it). It is simply not that clear cut. How do you adjust to a moving target?? That is what is so very hard for those involved - and I am including the carers in this as well as the individual themselves.
Feeling lucky - I say I have been blessed - creeps in over time. I was never in mortal danger (or at least not until recently when they discovered the aneurysm but that is by the by). So I wasn't able to think...well I am lucky I made it through. I have always been very aware that I don't feel 'lucky' that I am not more severely afflicted with my particular problem. That, after all, is a factor of the randomness of chaos, nothing more.
But I am blessed, as I am sure Mark is, with the things which make life feel good, worthwhile, and positive: those who love and care for me, those who support me medically and professionally, and in the quality of life I now have, given my changed circumstances. 'Counting your blessings' has long been a saying - turns out it is true and I hope Mark will in time know his blessings, and come to a sort of peace with what has happened to him, too.
He is clearly blessed to have you in his life, that is a given.
Glad to hear there has been so much prigress, and wishing you both happy days ahead x
To all care givers, thank you for all you do for those of us making our new life in spite of our brain injuries. You all deserve so much more than you're getting out of the deal. I have a feel for what it might be like as a care giver for one with a brain injury, as about ten years before my brain injury my wife had a grand mal seizure and her recovery was a bit like a brain injury and I was the care giver. I remember it really didn't matter about the things I needed to do for her while she recovered. I was just glad to have her still with me. Now she is my care giver and does a wonderful job. I just wish I was more capable of letting her know this more often. I'm still working on the acceptance part of the new life. Yes the "lucky" word really sets me off too and with virtually no filtering, it triggers a real outburst for me. How I currently relate to lucky is "I'm lucky to now live life with a whole new set of limitations and challenges I didn't have before, plus have many things I can no longer do." Sorry for the rant. Thanks for listening or I guess more accurately reading this.
Just thought about this a little over last couple of days and reminded myself of that story telling game we sometimes used to play where each sentence had to begin alternately with " fortunately" then " unfortunately" ..... think that's how I explain some of my feelings ..... " unfortunately I got this illness" " fortunately I live in Cambridge" " unfortunately it was the weekend they were doing the changeover to computerisation" " fortunately though my condition is extemely rare , there was someone/expertise there on Monday who diagnosed me correctly" " unfortunately my partner of 18 years left me at A&E without even saying goodbye" " fortunately I have good friends" etc etc etc ...... I think the BI was confusing enough and recovery complicated enough without the relationship issue ( which I am not coping with very well as you may have guessed/noticed) .... I do think it must be very difficult for care givers - but hang on in there if you can and know that you are doing a great job...
Your post really made me think. So many people have said to me after my accident how luck I was and that I could have been dead... I don't really believe in luck because I replied that if I was lucky it wouldn't have happened in the first place and I have my own faith and just that day it was sent to test me.
I get really tired and it can come on quickly but the signs are there as you noticed them with Mark. This Saturday they were there and I tried to ignor them as I do, (Duracell bunny again) but had to rest, felt awful on Sunday but again ignored them then had tho have 2 naps in the day. Feel bright as a button today though and did all last week, I just have to read the signs and act on them. Im the same as I don't want to miss out on anything and try to steam through but I'm learning that I must accept this stuff and adapt to it. Im sure he feels boring but it appears you have a very very strong relationship and thats fantastic. My wife and kids are finding it difficult but they do accept it, its just when I'm really brain fatigued I'm boring and don't want to do a lot which is so unlike me. Im sure the old me will come back at some point.
We all have our own journeys and I love learning from other peoples experiences here as I know I'm not alone in the BI world. Thank you for your post and God Bless. XX N
Hiya Debbie, do U find that his mood changes in the afternoon cos he starts getting tired ???
Assuming this is the case, Get him t try a 20 minute nap in the afternoon, about 2ish or whenever his mood starts to falter.
It refreshes you no end but make sure it's no longer than 25 minutes cos U go into a second much deeper stage of sleep, 20 I find to be ideal.
Everyone I've mentioned it to, if it's done properly, even if it's simply a case of keeping your eyes closed without falling asleep, totally relaxing, a 20 minute nap will do wonders.
It's as good, if not better than a couple of hours nap.
Even a 6 minute nap is good but that doesn't last as long before U start feeling drained again.
If I don't have one myself I start getting sleepy & groggy by about 7 o'clock, but those 20 minutes'll keep me happy & going til about 11 - 12 (a more normal time t fall asleep).
Hopefully this also means he'll have a more restful & refreshing sleep during the night because he goes to sleep properly later than if he goes t sleep early.
Get him t give it a go. Most people are quite pessimistic to start with, but it has made a massive difference to me & several other people on the site ;o)
Hi yes it's worse in afternoon. At weekends and im not working we will do something until lunchtime come home and i get mark to rest for an hour. I've found if i close my eyes he has a little half hour nap which does make a big difference then we can do something else until early evening. Walking shopping etc.
He does try t9 have little naps whilst I'm at work. My daughters have told me. But of course he's just resting his eyes 😊
He can get abit cross when i insist we do things then rest a while as hes always been so active but it makes sense and im tough skinned 💪 thank you for posting this.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Short term memory loss
Medical term needed...?
Short Term Memory Issues
Long Term Neuropathic Pain
He's coming home in a couple weeks. 9 months after BI
