I post and give advice, one of the latest is on denial. Under the surface I am so much in denial!!!!
The Barons Walk brought it back to me big time. I am so striving to be back to me, the old me.
Don’t get me wrong I can live with the new me, I’m not that far removed from the old me, it’s the physical changes I’m having trouble with.
I may have had similar problems without the brain injury, who knows, I will never know, it just happens to have coincided.
The biggest problem I’ve got, and I will have had it anyway, is, I’m 65. Everywhere we are bombarded with how we must safeguard our health for the future, the implication is it’s all downhill from now on. And that’s without brain injury.
My problem is , I think, the brain injury exacerbated the problem. The ageing happened at a pace. I wasn’t ready for it, it happened almost overnight.
Self analysis, I’m renowned for it, my counsellor said I’d already done her work for her!, I’d already thought it all out. Doesn’t help really because I want someone to fix it for me. I’m going to be disappointed aren’t I? It can’t be fixed, well it can by me accepting things.
I have a little to grasp onto, after my last appointment with the neurologist I’ve thought my questions and his answers through and my biggest problem is my posture I think. I’m fine lying down, it’s when I have to raise and hold my head up, hence why the pregabalin works. It’s all to do with that now, maybe I need a chiropractor to look at the alignment of my spine and in particular my neck. That’s my next pursuit of the Holy Grail.
Enough of these ramblings though, you don’t need all this. I. Off now to wash clothes and iron, and do the garden, try to bring myself back to earth.
Thanks for “listening”.
Janet x
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Kirk5w7
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It's so lovely to see you in your photo. So much better than just knowing you as your username or even just your first name. Often try to picture what people on here might be like .... but now I feel I know you much better!! Yes a crazy ramble from me! I am not very far behind you in age. I too can give responses on here or the Meningitis Now forum but don't always take what I say on board for myself! I 'aged' drastically and suddenly as a consequence of my life threatening illness and have developed other conditions since e.g fibromyalgia ...... in denial too about this being 'me' now and am still in search of being 'fixed'. Not found the professional yet who can do that ...... I used to be young for my age and I want that back! Very well done to you though Janet for walking the walk with the Baron.
Thank you Caroline, it truly was brilliant I just wanted more, I want to be able to do days like that regularly, not planning for weeks before then popping the painkillers all day just to keep going, then the “wipe out” the following day. I suppose that’s an improvement, without the pregabalin it would have been a 3 day wipe out.
I’m learning to manage me, it’s just taking too long, I need someone to say, “this will work”.
You are FAR to hard on yourself! You do remarkably well.
I'll be brutally honest and PLEASE listen. You are a 65 year old woman who is 'recovering' from SEVERE brain illness who travelled to another city last weekend in order to walk a marathon and completed 18 miles of it. I repeat,
18 MILES!!
Fitter and far younger folk (the group who left before us) actually quit at the halfway point, 13 miles. The only reason I completed the full 26 miles is due to the fact that I've been walking with the Baroness for years, even completed a marathon once before, as you know. However, now, I'm utterly knackered, my feet are red raw with blisters, but I'm hugely proud of what I/we achieved. And so, my dear, should you.
I know, Andy, I know but and there it is again. BUT.
As time passes, it doesnt help.
Its a mindset, my mindset, only I can change it.
Itll settle again for a while i know it will.
But i promise you this Ill achieve that 26 miles one day, ive even got my eye on the Great North swim, hmmmmm!
Id never have even contemplated any of this without the brain injury, so what’s all this about🤪 I am officially a lunatic, that BI must have knocked a few screws loose.
Oh wow Janet 18 miles!! I walk my dogs everyday but since my brain illness I couldn't have managed that much!! Before though ........ I was always on the go!!
Im struggling to figure out the point of the ramble (if only you could see the confused look on my face)?
Your age? The fact you cant do as much as you could? ways you could improve yourself? having no future?
As Andy said take pride in the fact that you got further than the younger group.
Maybe set yourself small achievable goals to do everyday to give you a little perk boost? (like you I need to take my own advice)
ifs its your age your struggling with getting older, we all have to go though the same process.
If its how you looks try new clothes or make up?
if its the fact you feel no one will help you, I am in the same boat I have had to go though the entire trauma of side effects from pregablin on my own and nearly lost my job over it, it has knocked my confidence and self esteem, i feel like I am stuck in a rut, my flat is a mess, I never thought I would the words I want to commit suicide would enter my mind and I still have no help I just plod along I still get frustrated and annoyed at myself, I feel I may be single for the rest of my life but I am trying to pick myself up no matter how hard or slow it takes me I have faith that I will get there eventually what I try and do is tell myself I have been though worse and survived (telling myself other people are going though worse doesn't help) everything is in your control to change it
I knit, crochet, make jewellery, go for walks I cant be still.
My main problem now is i have too much time but i am trying to fill it with audio books now. I used to read such a lot even during my luch break when i was at work. Unfortunately i find it hard to complete a book now, i cant remember the plot and characters! So, audio books are the way, much easier to go back and listen to a chapter again.
Thank you for replying, Im off now for an amble round the park then a listen to my latest book .
I do that when I read, don't stress over it , why do you have to much time (its not a bad thing) you can do volunteer work? if you lived closer I would invite you to the craft group I run if your on fb your more than happy to join are you working on anything at the moment?
I suppose it’s because I no longer work I’ve worked full time from the age of 25 up until around 50 when I dropped down to3 or 4 days a week( zero hours contract but I could choose how many days I did). Even through producing 2 of my 4 children.
I can’t help feeling that doing nothing is time wasting, for me I haven’t a problem if others don’t do all the time, but I have to. I’d probably make an interesting subject for a psychiatrist, who knows where this stems from, but my sister is just the same!!!!
All you are experiencing is the downside of being over analytical and self critical.
It hits us harder when we have prepared as much as we possibly can thinking that means we can miss the wipe out .
Age is not what defines you.
On a more personal level I wouldn't recommend chiropractics but would favour physiotherapy for posture.
My reasoning for that is that chiropractics is done to you whereas physiotherapy is you doing the work and giving your body , brain and muscles the chance to learn what they should be doing.
Try looking into neurophysiotherapy.
I hope you enjoyed your audio book in the park and , just as an aside, 18 miles!!!!! And in this weather that we are so very unused to. Cudos to you and all who too part.
Thanks Random, I know I think and analyse too much at times, but I’ve always done, it would be hard to stop now. My friend and I walked her dog in the park, and I had a quiet half hour with my “book”, much as I like this weather a couple of days respite wouldn’t go amiss, now.
And as to the chiropractors, I’ve already dismissed that and looking at neurophysio as a possibility.
But that’ll be a little down the line, we have along weekend coming up in Berlin soon.
I'm fine sitting with a compression bandage on my wrist and having a smashing time.
It's my own fault I should know by now that when I say "ouch" I should stop and check myself over. Still haven't learned that one!
Now that a hectic(for me) first half of the year is over I can get back to routine and avoid any damage.
Fortunately the wrist is not broken just nearly everything I've touched for the last week. Plates cups glasses you name it it has gone to the floor. Fortunately the knife missed my foot or that could have been fun!
It’s acceptance that is important as you are are aware. That does not come easily though. I cannot accept my mental issues but I do now accept my physical issues. Physical problems are easier to compensate , Physio etc. I have had help with my mental issues for many years with no success. This site is really helping me realising I am not alone. There is chance for improvement. I am 54. Not how I envisaged spending my old age but we have to accept and like the new us. I have been like this for 22 years. There is help for your physical problems. It’s hard work thinking you can do something as you alway used to now you need assistance to achieve it. You have got a many more years to live try and enjoy.
Thank you Mufc, I know all of this, indeed I’ve said it to others. I’ll get there, and much as I like this weather it’s just a little too relentless at the mo.
But, onwards and upwards, tomorrow is another day and all that!
There was always the likelihood that once the walk was over I’d have to replace it with something, just got to get my thinking cap on now.
Hi there Janet, it is amazing how hard we are on ourselves isn't it. My hubby has an ABI from 20yrs ago and 5 years ago I had breast cancer. We both have come to accept our 'new norms' and live a good life within them, as you clearly do. But.... I am always looking for more rather than accepting the good of now. I had some sessions with a phsycologist and came away with the following check-ins when I feel I'm not doing well.
Am I doing my best? Is there really more to be done?
How much better can I really be?
Can I explain what the gap I am trying to achieve?
So whats the problem/gap - is there really one?
Reflect on the Serenity Prayer - Grant me the serenity to accept the things I cannot change,
Courage to change the things I can, And wisdom to know the difference.
I use these and it helps me realise how good life is. I do mindfulness regularly (rather more intermittently when I need it!) and as soon as feel the fog in my head when emotions/activity levels hijack my brain I focus on the breathing/be mindful.
Accepting our 'new norms' is a tough one and role modelling to others even harder. It feels to me like your making a great job of it, with the occasional quite 'normal' human lapse. Enjoy life and have fun.
That feels like your writing about me , I’m 18 months in and waiting to return to me , but accepting that is not going to happen is the hard bit . We are alive and reasonably able many don’t make it this far xx
I had a brain tumor (size of a baseball (american... not brit) 6 months ago, titanium patch about 10cm diameter over the temple, constant bloody, (not effen (as anglophile american, i try to avoid the F word, with use of the word, "bloody") and I just turned 60, it's like I have been just dropped back on earth, and I don't really know how i got to this website, and your post, but somehow, it has been really useful for me to look at what is going on in my life right now, and I just wanted to say, even though it's kind of a cliche, thanks for sharing this, Ms. Kirk5w7...
When I am sharing my thoughts I am always hard on myself, mostly it’s me awake in the middle of the night, but I always hope that what I write can be found useful by someone. Musings such as this one shows that it is fine to not be positive all the time. Always looking on the bright side or cup half full all the time is exhausting.
Anyhow my cup often becomes half empty!
Again, welcome, come back and visit whenever you feel the need.
Janet x
Well done on completing your 18 mile walk!
Your eloquent musings sprinkled with gentle humour, clearly depict how it really is to be living with an abi.
Thanks Claire, I think this relentless heat is getting to me now, i prayed for a shower of rain, just a small one because im not greedy, last Sunday to spur me onwards on the walk to no avail. And i forgot to water the new plants in the gard b last night, must get up and onto my t now .
This heat is killing me...one of the downsides of living in the middle of London and I would kill for even the whiff of a sea breeze but I popped on here and your post was there at the top of the list... and how nice to see your face .
I will of course agree with the others that you are being hard on yourself... but of course you know that already, just as you know there is no quick or easy fix for any of this stuff.
Next month will be the 12th anniversary of my humpty dumpty day (when I sustained my TBI). It sort of seems unreal still (even after all these years) and I am continually shocked when I see my reflection in the mirror. Thanks to the memory issues, my brain expects to see the me of that day 12 years ago and does not compute the "now me" at all....Its like "how the hell did that crazy old lady get in my bathroom" ;0 Of course that is not helped by the fact that on Humpty day I was a slim forty something brunette with a neat angled bob and now I am at least 20lbs overweight and have a mane of wild grey curls.... but despite the passing years I refuse to be old. I simply will not do it and nobody can make me LOL
Thanks i forget, i thonk i will constantly chase that young for 59 year old that i used to be. I dodnt get the chance to grow old gracefully, it was foisted on me. Ah well , here we are and “what are you to do”. I rang my daughter one morning from rehab saying “ i cant do this” to which she replied” youve got no choice Mum, best get on with it” . So i did, and i am.
I still hate looking in the mirror, but ive started a strict record everything you eat diet, and ive lost 1 pound in a the first week , im hoping this will continue, i should reach my goal next January according to my fit bit app!!!!
We’ll see, cant see me stickinng to it that long, 1200 calories a day isnt a lot😬
Hopefully itll cool off soon, ive watched the temp down there every day and its pretty grim i must admit.
Ah, Janet, I think we've both said before how similar we are in some respects.
Self-awareness is a double-edged sword, and both of us are canny enough to be able to work around our deficits to a mostly-functional level. The downside to that being that our 'now' functionality doesn't match the 'then', and sometimes we're reminded of it by the strangest of things. I liken those moments to smelling a familiar scent, that reminds you of someone who has died, that huge galloping wave of emotion for someone that's not 'there' any more. (I still might arrange a wake and funeral for my 'old' self... My Dad's half-Irish, wakes can be the most raucous of bonding/release celebrations.)
The ex used to say 'You can only wee with the willy you've got', but in slightly less family-friendly terminology, and both you and I have a tendency to get a bit 'Adrian Mole' from time to time. When we're not 'getting on with it', and accepting that the 'thing' is as it is, and isn't going to miraculously change overnight, we do the self-analysis thing. (Yes, my counsellor said I'd already done everything he could do for me, and the neuro-psych said she'd print out the strategies that I was already using to show to other healthcare professionals. The mental health team triage lady gave me some very strange looks when I answered her questions using complex/professional terminology. "You seem to know an awful lot, to say you've never been allocated MH support." "I know it, I don't consistently apply it, I used to be 'one of you' near enough.")
I'm going to be blunt. I don't believe either of us really are hypocrites. All of us have peaks and troughs, I know I tend to self-censor, and not post on here when I'm in a low phase, because each and every one of us is dealing with our own issues, I choose not to post when I'm feeling anxious, or helpless, or just generally less-than. I'll come on here when I'm in more stable phases, and dispense the cheery advice about strategies that help me, or my tedious 'welcome aboard!' waffle for newbies, but throwing out those positive messages doesn't mean I never have negative phases. Human beings are not linear, show me a person who is always tip-top Mary Poppins positive, and I'll be tempted to look for the flap in their back, where the batteries go.
I'd question that you're 'in denial', my understanding is that you're getting on as best you can with the resources you have available. I have 'blips' when I try to be what I was, then realise I'm being an idiot, and have to shout my son to help me, because I'm trapped inside a tipped-over plastic greenhouse. I also have instances of calling myself a ridiculous ginger goat, because I've climbed on something and can't figure out how to get back down.
We're all bobbing along, trying to find the route that suits us best, there's no 'one size fits all', and it's damned certain there's no instruction book. I have periods of mourning for my brain in a way that I've never mourned for my 25-inch waist, or hair that wasn't so full of 'cobwebs', because the brain-change wasn't expected.
18 miles? I am SO in awe of that, I genuinely don't think I would make it that far. That's a very impressive physical achievement, BUT your self-awareness is also a very impressive cognitive achievement, without knowing who/what you are now, you could potentially place yourself or others at risk of harm. It's OK to have off-days, we all do, having off-days doesn't mean we can't try to help others when we're having better days.
Thank you do much for those words of support it is so good to know someone “gets me”.
I used to be a member of mensa, i think you are only the second person ive ever told outside the family, with an IQ if 148 so am mortified that my brain doesnt function” normally”. Silly i know but it defines me, and personally id rather be the self analytical and critical me than not.
I go cold sometimes when i think of what might have been.
And i do mean it when i say i will fo it at least once. I have to to orive i am still here and in charge of my body and life.
Janet x
Id resume the decorating but even being 2 rungs up a ladder scares me witless much less climbing on anything else, although i did venture onto a large block of limestone they have in my local park “because i used to as a child” i didnt jump off it though my husband had to help me down!!!!
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Enjoy Berlin. Best.
but I popped on here and your post was there at the top of the list... and how nice to see your face . 
Found something that helps a little with fatigue 
Lost & Found: What Brain Injury Survivors Want You to Know - Part 2
Strangers 
Autism and brain injury
