It is 5.55am and I have been awake a while now, you know the scenario. Can’t stop your mind buzzing around all those thoughts that won’t go away.
I’m not in a good place at the mo. Probably should be back on the citalopram.
I’m so good at giving out the advice about how a little help when your brain isn’t functioning properly is fine , but of course I can’t action on it myself at times.
Over these last 7 years I have hovered here chipping in and hopefully helping some people cope with their”new” lives, still forever hopeful that I will get back to me. But with each year that passes I can’t help but think that that elusive 5% or 10% that I’m missing is just out of my grasp!
I’m not after pity just understanding of the frustrations I/ we live with daily. My husband has to put up with so much from me, I see his frustrations daily coping with how our lives have changed and I could weep. In fact this last week I have wept, many times, I could weep again now but that won’t change anything.
Last night I met up with old work colleagues, not seen for 3 years, and it was fantastic, except. The pub we were in was so noisy, I missed a lot of conversation. I could only have one drink because of the effects of alcohol and also volume of liquid I was consuming and the continence issues, the subsequent fatigue, getting home in the dark ( god bless my friend’s husband for being the taxi) and the fact that once it gets to 7pm at night I’m usually checking the time and wishing it was bedtime. It brought it home to me again, big time, how this was now my life.
I have fought back to near normal intellectual capacity, it’s the physical issues I struggle with now.
I say near normal intellectual capacity, I’m fooling myself, I can only sustain that for about 4 hours and if I have to concentrate hard and talk too, the speech goes, I can’t find my words and the brain fog descends. So, I tend to sit back and listen and deal with the frustration of not letting it all out like I used to. I’m sure you know what I mean.
I can’t dance and be that outgoing person I once was. The frustration is the worst, but deep down I am angry with myself as if I should have stopped this happening or overcome it by now. I hear you saying that I need counselling, been there done that. I know what I should do, how I should deal with it, the counsellor said I was dealing with it brilliantly, that I knew all the answers and she couldn’t help me any more. Except, deep, deep down I wasn’t dealing with it brilliantly, it bubbles below the surface.
Tonight it has surfaced and I am sorry, I just had to let it out.
My journal wasn’t working for me, no-one reads it but me and I needed someone to ‘hear’ me tonight.
So, again, I am sorry, but thank you whoever reads this. Thank you for being there, I can sleep again now and all those demons have been put to rest for a little while again.
I will be able to get up in the morning and be that person the family want me to be again for a while.
And all I will say to all of you out there, life is hard and we have been dealt one of the cruellest blows but we are capable of living through this, we are all amazing. I just wish I had a magic wand that I could wave and wipe it all away for us all.
Goodnight, or rather Good morning.
Love to all
Janet
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Kirk5w7
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I can't give you all the usual cliches and platitudes as I'm sure you've heard them all many times. Suffice it to say that I really don't think you are patting yourself on the back hard enough. You are putting yourself out there despite everything that you have been through and indeed, go through every day of your life. And they are things that would bring your average everyday healthy person to their knees.
No, you're never going to be the 'old' you again but the new you does pretty damn well considering. I know that's not enough, it isn't for myself either. I miss the drinks, I miss driving, I miss fitness, I miss having a memory, I miss not being a fat git, I miss a lot, but it changes nothing, sadly. However, you do just fine and really should be proud of what you achieve every single day. Yes, it's an achievement, never forget that, give yourself a mental pat on the back and march on proudly.
Thanks Andy, for everything, without the friends i have throughr here it would be do much harder. And mostly i can deal withit, i “own” it, i think they say now. Its just every so often it rears up and bites me, and i have to let it all out again. But they hanjs for listening and understanding.
Morning, I do hope you feel better this morning . Personally I think you are wonderful. Keep going and like me hoping for the next day to be better . Shona 🤗🏴❤️
I suppose everyone has coping mechanisms that work for them as individuals.
After my initial shunt replacement 2 months ago, I am hospitalised for a third time, due to infection and having to have old drainage tubes removed from my neck.
In isolation, this would and does make me very frustrated, as I wait for blood culture's to determine what cocktail I need.
My frustrations are real and yet put into immediate perspective here in the Neuro Hospital.
I suspect just about all of those in here would trade places with me in a heartbeat. I am self caring, need only to be hooked up to a drip once a day and have no issues with my new shunt.
Yes, it is very sad to see the predicament of those around me, but as reminder of how fortunate I am to have so few post op issues and the minimal impact of the hydrocephalus I have lived with for 54 years, being here is valuable in keeping my `blip' in perspective, especially when I'm feeling fed up and am just eager to get my life back on track. I am blessed to have that goal and opportunity.
Thank you Froggiefrog. I am so sorry you are eduring another hospital stay. I too am grateful tgat i have recovered so well, i may seem a little ungrateful with my recent posting. But no.
I too am sobered when i think of the outcome they painted to my husband and family at the time. I have worked hard to ensure that i remain the best i can be. Its just..........
So jeep on with the poems, your ability to compose those is a gift and they lift my days and probably do the same for others too.
...it's just that every day you tell yourself time and time again that "it could be worse", you again agree after some body else tells you that "it could be worse". "It could be worse" we all know that but "it could be worse", in that instant is a dismissal of how deeply hurt I am in that short second of the fact that "it could be worse" just isn't enough sometimes. I am SICK of that being the only mantra I have to live by these days and on days when I can't rise above, I'm bloody allowed to feel sorry for myself because the rest of the time I'm filling my own head with so much positivity, I could poop out a unicorn eating a cupcake on a rainbow!! Let me have my pity party because it'll be short lived then I'll move on to the next inspirational slogan like I always do but until then...
I knew there were more than just me feeling this way. Im so sorry, i know those feelings.
I would love to wake up one day and not have the reminder of my issues. They are there every day , all year. Never let up. Some days better than others but....
They are better this year than 18 months ago because of Pregabalin prescribed by my rehab consultant, i see him once a year, he is good enough to keep me in his clinic.
I suppose i should appreciate being better than i was.
You are definitely not alone. I'm just coming out of a two week "overdone it" pity party. The point is I'm coming out of it. I hear you, it is incredibly difficult to get some peace, the only escape I get is sleep when I can stay under. My heart goes out to you so much 💓 I'm only eleven months into this chaos...you're years.
After "you look fine", "you look good" I find "it could be worse" one of the most god damn insensitive things to say. Dismisses instantly the physical and mental pain you are suffering and have suffered through. "Oh no, you broke your leg...awk sure it could be worse" "oh no you lost your job...yea it could be worse".
I'm guilty, I've said it to myself many times when I feel I need reminding of perspective but as I said (I just realised) we are dismissing our own pain by trying to compare our pain to others. We can't. I wouldn't dream of pretending to know what you are going through (or belittle it) but whose to say your experience deserves to be ranked higher than my own for suffering and that I should be thankful that it is?? Do you compare yourself to someone who is prettier or supposedly has a better life than you? I sure as hell don't!! So why in the hell should we do it when we need a "reality check" about how good we've got it?! My life has crumbled over the last eleven months but I'm still somehow working, I'm still getting my ass out of bed every day and most importantly I'm still alive to try, that's the reality check I should be giving myself not forcing guilt onto myself because someone has it worse than me. It's a forkin cop out and I've just told myself off. I'm allowed to feel my pain, I'm allowed to let it out, I'm allowed to cry and get frustrated because this stuff is bloody hard. We shouldn't be burying our pain with "it could be worse" just because someone has terminal cancer. Yes, I'm not gonna shout it from the rooftops but our suffering is real, it matters too. It matters to us and it's damn important to acknowledge and process it no matter how many times we have to do it. If you're forgetful like me I'll be reliving these episodes for the rest of my life because I keep forgetting about them.
As long as I get the chance to get up again tomorrow I'll practice my gratitude as "normal" and accept that I don't need to be thankful for what I don't have, I'll just be thankful for what I do have that's plenty.
I'm sorry I had NO IDEA that was in my head but gee whizz it feels good to get it out 🤓 💞
Im so glad you got it out because when i really examine how i feel its on a par.
There ive said it now, and i dont feel guilty because i have a right to feel how i feel.
Like you say i wont be shouting it from the rooftops but its there and to stay sane i have to let it out.
Hence my journals, i have 3 now that are full of my writings from the wee small hours. They are painful to read at times should anyone want to read them but they are truthful. And, they help maintain my sanity and also help me paint on that coping exterior.
But this week i had to share my thoughts, validate them. Its been a while since i did it.
Yes!! Some, in fact most days we are able to stick our masks on and get on with it but in those times that we can't our pain does need validating, not ignoring it has to be acknowledged and catalogued so we can get back to painting the smile on and head off back towards sanity.
Thank you for allowing me to be the most fluid I've been in months 💕 I hope today is easier for you and you find some peace and contentment xx
Oh sweetie..... I'm with you on all points. But my son reminded me the other day of all the positives and it gave me food for thought. I know it's easy spouting that old adage 'There's always someone worse off' but it's SO relevant in getting our circumstances into perspective.
I often ruminate about the isolation and loss of achievement in our daily lives and the lack of credibility after a lifetime of making a few differences here and there. And FUN.....whatever happened to FUN ! 😯
Then I realised that I was valuing my existence through past eyes...…...otherwise known as ignoring my own advice re. acceptance. And I took a long, withering look at myself and saw how privileged I actually am.
I have a warm comfortable home (unlike so many) and enough income to feel safe and to provide for life's essentials (unlike so many) and I can choose what I fancy doing on any given day (within reason & unlike so many) and I have a caring, loving family only 10 mins away......
I suppose I'm counting my blessings which is a dreadful cliché, and an irritating one for those feeling down and miserable.
But I was suddenly hit by a dose of guilt over the many times I've been bored with sitting around too much or cooking again or same-old-same-old TV when there really are human beings living in horrific conditions who'd give everything they have to swap places with me.
It's corny Janet, but it's my faithful back-up for hauling my sorry backside back towards sanity...…..and it's truthfully all I've got.
I'm so sorry you're struggling m'love. I just hope you'll find some way or some 'thing' to help you climb back upwards again before too long ; I find the darkening nights play a massive part on my mood and will probably spend most of winter yearning for Spring.
Thanks Eileen, i manage all that a lot of the time, but the one about theres always someone worse off. My thoughts when i hear that is but that is their life and this is mine. Selfish i know, but ive put the whole of me into this one and i was hoping to reap the benefits. And, i know i will but...... you know.
A bit of poor me creeping in but that brave face does slip sometimes and im no saint.
Like you say its that time of year again, just a wee bit early this year.
And its been a bit of a full on year, i need some R&R. I’ll try and factor it in before Xmas descends.
Take care
P.S. by the way Jenny said thank you for the card it was so thoughtful, her hip op is on 15th Oct😄
Ill see if we can get over to you before then, she cant manage Victoria Station the walk to the platform is too long.
We're all allowed to be honest about how we feel and if that means 'Poor me' content then I say go for it Janet. And If we can't offload here then we're stuffed aren't we. I just wish I had the wherewithal to drive over there with cream cakes & hugs (really wish we could all meet up and just get sozzled ..………..but maybe in another life 🥴)
So three weeks to go for Jenny's op. God I hope this'll be her last ordeal before getting her life back, and I'll be really rooting for her. I'll send a Best wishes card just before her surgery.
I hope you can grit your teeth whilst waiting out this low period and come out the other side as painlessly as possible. You know where I am if you need to vent !
I just re-read your post and realised I'd missed the main point which was the social element. Of course you came down like a ton of bricks after spending time with former colleagues !
I'm from a large family (grandmother had 10 children, all of whom have extensive families) so there's often a marriage/anniversary/funeral to attend. And I dread the receptions because of the mental acrobatics needed and the loud music making it impossible to hear of be heard without shouting.
Last one I went to left me with a banging head, sore throat from shouting, and palpitations from the sheer physical exhaustion. It would've been so good seeing relatives I'm fond of but never see, if only we could have talked in some depth rather than screaming over the deafening music. I'm always first to leave and NEVER dance.
Compare this to pre-bi when I 'circulated' and talked to everyone (think we shouted into each other's ears) and danced my feet off, I'm really a shadow of who I was then...…..and it's upsetting to reflect on.
But pre-bi, we were also just that bit younger...…….. and the alcohol was a great boost to the performance.
So I get it m'love, I really do. And that's why I've become fairly reclusive of late...….so I don't have people in high spirits with loads to say reminding me of 'normal' and I can be (almost) contented with neighbours, family and one-to-ones as companions.
It's an irretractable problem isn't it Janet. We should be proud of how we handle it most of the time. YOU 👀should be proud ! xxx
I read your post. It reminded me of a habit I have got into. I record all supplements and medication that I take along with weight, notable pain and sleep patterns, any particular special diet or digestion issues. Its like a diary but without the sentiment, just facts.
Anyhow, I noticed that you wrote you had cried a lot recently. In the early days, my emotional brain centre was in overdrive and tears were a regular occurrence. Nowadays, when I cry I go straight to my diary of events, and look at any possible patterns as to what might be causing it. I then treat it like a pain in the leg. I disassociate with the tears in a short meditation either during a walk or just sitting or lying down but actively using my mind to come back to a neutral place.
Here is the secret. If you can't neutralise it with your mind, it is a real hormonal chemical imbalance that needs addressing. There are various serotonin and sleep enhancers I have mentioned in posts before. Mail me if you want to discuss.
Often times, I can neutralise the negative feeling and feedback my brain gives by doing another activity be it walking, gardening, meditation, sleep, eat or shower.
By default now, when something negative comes along, I call it out and acknowledge it, I actually say it out loud to make it real, say to the body, thank you for the message about something negative, I go into auto mode and attempt one of the above list to trick myself into forgetting, not hard to do : ) If it remains, it requires a chemical intervention.
Perhaps your tears are telling you that something more serious needs addressing in brain chemistry. You mentioned it yourself in your third paragraph.
Trust yourself. Listen to yourself. Act. Love yourself. You only have one body. Because you are worth it!
Thank you so much, wise words indeed, I will action on them. I am better than I was but this dreary rain isn’t helping, looks like it has set in for the day again.
Hi Janet. Gosh where do I start. SO much of what you say resonates with me. I am thinking maybe cultivate a new hobby or interest that will consume you. I have felt the same way as you. I had my operation 14 months ago. By comparison I am picking my situation was mild compared with all you lovely people. I had a chronic haematoma that grew insidiously and finally burr hole surgery. They called it an amazing recovery but where is the yardstick? I didt even know who did my surgery. two young registrars proudly claimed the job. The consultant barely acknowledged me. I had clearance a month after the operation. I left fulltime work and have been part time in different jobs ever since.
I am now confused. I live in NZ and want to come over the Europe again as I used to come over every 2 or 3 years.
I am scared to travel long haul though I am told it will be OK. Every little niggle terrifies me but I soldier on. I guess we all feel th same way.
So Janet, how lovely that you have a supportive family. I have friends who have sort of dropped off and a partner who did the same though I dont think I am any different. maybe I am.
Where to from here? I think i too need a new passion in life. I think we have to live life to the max if we can.
So janet. I completely understand your predicament. I wsh there was a magical resolution.
I scrolled down the page and saw the smile and twinkle in the eyes and thought if she isn't one already, one day she will be a fabulous grandmother. It just radiates that grand motherly warmth.
We all seem to be following that well trodden path and timeline, I am in 7 1/2 years as well and like you made huge improvements from where we started on our journey.
In one sentence you managed to describe what many doctors and specialists fail to understand and what I couldn't put into words. As I mentioned above, we have all improved but fallen short of recovery. It is that gap between recovery and where we are now that is the most painful - that 5 to 10%. I can write a letter and express what I want from the letter. I then give it to my wife to check - there are words missing, repeated words and ones the just don't belong! A good effort but useless and certainly no good to an employer.
It is something deep down in my soul that I feel is missing, Like when you think you have forgotten an appointment and should be doing something but in reality there isn't one but you still wonder. The problem is now, I find it harder to remember the old me
I have long given up on finding "a cure" and much like yourself, I wonder is this it now ? In all the scenario's of my younger year this didn't feature. Although on dream, win the Euromillions and there is a chance we can own a full stocked rabbit farm - a Welsh version of the Playboy mansion with bunnies running around ! Something, tells me, my wife may have a different view
Talking of bunnies, that feeling like we are part of the battery advert but we aren't the ones with the high power batteries that allow us to go and on. The times I have been doing things and at the start mentioned that if I start slurring my speech or looking strange, don't worry I am not having a stroke. Only to be met with a quizzical look and raised eyebrow. Then later when my batteries do go, they are still surprised and can't get over the transformation. Then it is sit down, recharge and carry on.
The problem, is we are in a very closed group where nobody apart from ourselves know what it is like. Recently, my wife had two big bangs on her head about a year apart. A few days after the second one, she gave me a big hug and said "I know now, what you have been going through" it meant quite a lot and I know we are sharing the journey.
Like most blokes, I am useless at expressing feelings but know there are better people on here to help.
All the best.
PS. If you want to practice grand-mothering skills, spoiling unruly kids, baking apple pies for etc. Think there could be a few volunteers on here
Often thought of a forum members meet. There are so many characters on here, I am sure it would be a hoot with all the stories we have to tell. Maybe we should start a thread ?
That post took quite some time to write - but worth it
Walking, literally a sore point for me. I spent years struggling with my left knee and the end of March thinking I am probably going to have to give up my Motability allowance. Then on Easter Saturday, a guy deliberately drove into the van I was driving through some mindless road rage. Wife, dog and myself injured and the van written off.
Like most of us, I had a routine of pottering about in the garden and with the dog filled my days, I haven't been able to do much since the accident. Two weeks ago, I had surgery to my knee to repair accident damage. It is so painful at the moment, I can barely walk on it. Looking at another 6 months of rehab.
Certainly is a roller coaster ride off ups and downs ......
Only a short trip up the motorway from South Wales. Andy can come on his tractor. Cat will arrive like the queen in a carriage or being carried on a couch like the Queen of Sheba by 4 hunks
Thanks about the knee, It doesn't bode well when the consultant says before the surgery that he doesn't think it is going to work but he is going to give it a go .................
I am in NZ but hope to get back to the UK next year. If I miss a forum I'd still like to meet up with some of you. I go to Manchester a bit so can easily go back. The trick will be flying all that way without freaking out, but I intend to.
Oh my... I hear your loss... The grief at your sadness at the loss of those parts of you you may not get back. That is a huge realisation of loss and pain and frustration and so yes you are so entitled to voice this and to feel this way in this moment. Accept all those disappointed angry regretful parts of you... And give yourself huge love and admiration for allowing yourself to feel these uncomfortable emotions and expressing yourself so beautifully. I hear your amazing strength... And your exhaustion in being strong for too long. Its so tough to always be strong and I truly empathise with you in this as I feel a similar exhaustion. One thing I would say though you can access counselling many many times and each time for me has allowed me to express and have these unheard parts of me to be truly listened to and respected. Sometimes you need someone to hear you and that gives you the strength to carry on. I hope and pray you find others who can hear you and in that space you also recognise how wonderful you truly are. Thanks for sharing with us all. Xx
Hi Janet. My accident was over 20 years ago and I STILL miss the pre-accident me. I feel that Post-accident me isn't good enough. And I hate the daily fatigue, anxiety & confusion. And having to plan things around my sleeps. I tried many, many antidepressants but I found that they sedated me too much. I'm now on Agomelatine(Valdoxan) and it seems to reduce the anxiety without me feeling like I'm wrapped in cotton wool. I also take Modafinil as required. This gives me a bit more energy when I need it - but I still need my sleeps. Janet, try to score 'little victories' and congratulate yourself when you do. Well done for going out. It is hard isn't it? But you did it. Keep battling Janet x
Hi Janet thanks for sharing. When I see your posts it's like the me I still can't describe. Only we survivors know what it's really like. Thanks again. Take care. Kx
My family tell me i shouldnt spend the time i do on here, that it brings me down. Which can be true sometimes but i find it helps to lift my spirits.
I know some of my posts are when im not at my best but I think it helps to know someone else feels the same.
I think of everyone as friends too, as someone said its like an exclusive club in a way. Not one we’d have chosen to join but im so glad its here for me now.
Very thought provoking stuff and a useful reminder to me that everyone needs their own path and it is not a case of right and wrong.
I have always seen life as an ever changing continuum, so that, and the fact I have had a VP shunt and its replacements since being 6 weeks old means the new and old 'me' issue never arises. I can't trot around a rugby, cricket or football field like I used to...but that's more to do with being a creaky 54 year old than the fact it would be highly inadvisable a week after my latest surgery than anything else !
The fact that I choose self deprecating humour as my weapon of choice does not mean it would be right for everyone. I do not and never will see myself as a victim, which is why never forgetting there are many far worse off than me is of great importance. This does not mean to say some find such perspective unhelpful, or even a source of annoyance, it just emphasises that we are individuals.
I get frustrated sometimes when I see what I believe to be quack notions dressed up as a substitute for proper medicine. A part of me worries that vulnerable people will place faith in something purely out of desperation...but that doesn't mean I don't understand why they are taken in, or that they are ultra defensive about something, regardless of whether it has any proven benefit, tested to the same level of scrutiny as a new drug would be.
Because everything about my wonky head and all attached to it is not a result of trauma, but a congenital condition, there are those who would say my experiences are irrelevant to those whose issues result from different origins . This is a view they are more than welcome to take. What I would say however, is that a 'you wouldn't understand' culture is rarely helpful in my experience...and quite often wrong.
As one of the many devastated and frightened people that you have been generous enough to support in the last year, I just wanted to say thank you. I didn't know the old you - only the "now" you, and found a wise and empathetic soul.
It is human nature to rage against what we have lost. Acceptance is not that easy and I would say that it is probably quite healthy to allow yourself to vent those feelings and acknowledge that it simply isn't fair that you should have given up so much. We meander through our new lives, living with the many awful adjustments that we have to accept and doing a reasonably good job of seeming to cope and accept, but when you come face to face with a reminder of the old life, when everyone else is just getting on with life because nothing has changed, it can feel like a punch in the face. I still have moments of real self pity 15 months after our lives changed and sometimes it can take days to pull out of it- and I don't sound half as reasonable as you.
I don't believe in the "pull yourself together" ethos. Allow yourself to feel angry and frustrated - you are human. But perhaps try not to stay in that dark place for too long. 90% of someone special is still a pretty good deal.
I hope i dont cause anyone to think”Oh no, this goes on for years with no let up” we all know this is for life but i dont let it affect me for too long. That would be to waste the second chance we, my family and I have been given.
Rather i wanted people to know that it is only human to have these ups and downs.
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Next year is the year
We have reached our 2nd Year.
Brain injured son coming up to 8 years. 
