This post will likely be a little bit of a ramble but I’m feeling low at the moment and just wanted to write some things down, and perhaps this is an audience that will understand a little better than my friends (who think I’ve fully recovered because I look normal on sight).
I had a SAH in December 2022 (aged 39) – I don’t remember any of Christmas / New Year and after a month in hospital was released, although ended up back in hospital just a few weeks later to have a shunt fitted. The next few months I was on ‘standby’ really until my shunt settings were altered at an appointment in April 2023 and I started to be able to communicate better.
Aside from losing my job, and receiving zero medical attention, the remainder of 2023 generally saw improvements and I was able to do some running in November 2023 and return to my main hobby (going to concerts).
I got a new job in January 2024 and was hoping for a new year, new start. However, especially in the last month or so, I’ve been struggling massively with a combination of fatigue/ anxiety / financial pressure, and I guess, loneliness.
I have two children (separated) who I see every other weekend. This Saturday and Sunday we were in London and after trying to keep up with them walking at schoolkids pace I am knackered. I had to stop running in January – originally, I thought it was too much alcohol around Christmas (be lying to say I don’t drink too much) but my legs are too weak – I am slow getting up off a chair and a bit wooden in my steps for the first 20-30 seconds but then can find a normal stride (until I encounter steps).
My shunt incursion wound never healed properly and a hernia appeared over the summer, so this week I finally got to my GP to get them to look – I’ve got high BP since being in hospital. I got a referral for that, but she wants to refer me to a mental health doctor.
I don’t know if I am depressed or not, I am trying to take stock of my new world whilst trying to keep as much of my identity as possible – I guess my identity does generally involve unhealthy lifestyle which I was previously able to counter by running a lot. Something I no longer can, so I’ve put on a lot of weight and completely lost all confidence as a result.
I do have some close friends but I don’t want to burden them anymore, I’ve already done that enough over the past year or so.
I guess I’m just fed up with being called ‘lucky’ and want to have something go right. Is that selfish?
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MorrisDay
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I understand being fed up with being called lucky. you are aware at this point how fatal an SAH is. morris day you’re life will never be what it was. seeking a mental health professional right now is very wise. you have new limitations and a completely different normal which is I am sorry to say very diminished from your life prior to the SAH. bother your friends and see which ones support you or drift away. you may want to change your consumption of alcohol now as well that doesn’t go well with the condition you are in now.
find as much support wherever you can. focus on the children they will need you always and vice versa. you do not have to sacrifice your identity but you may have to adapt. I’m here if you ever run out of support you cannot make me tired of the same story as I will understand, I have not had an SAH but have TBI. hang in there. you’ve got lots of life left to live.
Give Headway a call (number posted to your right) and get info from them about your constion, coping strategies , and some names to ask to be referred to in your area - a neuro psychiatrist if you can get one. Don't freak about the psychiatrist part - they are trainfvyo be an MD, a psychiatrist, and a brain doc as well, so they know what symptom comes from where and can be super handy.
At minimum you need a gp on side and a brain injury literate counselor.
If you are having trouble finding people in your area ask a lawyer who does car accident law - not to retain him but because he will have ideas of docs you can get to who will help you.
What you are feeling is perfectly normal under the circumstances - and yes, you still need people in your corner. Most regular gp's don't have much of a clue about brain injury. They only get something like 15 minutes on cracked skulls. (I'm.exaggerating and not far off.)
We are also here and will listen anytime.
Lots of different experiences here and caring advice for you to try for fit.
We don't judge. We know this is not a club anyone would want to join and we've all had enough of the j word from.rhe outside world.
And you may nit be depressed so much as you are very fatigued all the time, and depending where you injury is it can impact your emotions . Indeed many are angry or irritable, especially in the beginning, and others have emotional changes and are now naturally more flat.
Hi MorrisDay, sorry you’re having to go through all this but you’re on the right track coming on here.
I absolutely understand where you’re coming from (as sadly the rest of us on here mostly do).
Firstly, I would take the offer of some mental health support, that’s been a lifeline for me, to help work through the changes to me and my life rather than bottle it all up, and it also gives a different perspective to it all and helps you find ways to deal with all this stuff.
I consider it an important step to trying to find a way through and onwards with your life.
Also, I would speak to Headway 0808 800 2244 or take a look at their website headway.org.uk.
The lady I spoke with was the first person ever that I’d spoken to properly about my accident and she was a really good listening ear and gave such good solid advice, even helping me to navigate getting what I needed from my GP and healthcare generally.
Friendships are difficult to maintain even at the best of times but most especially after you’ve made the original recovery from injury and look ‘normal’. If you’re able and feel up to it, try to have a honest, even blunt conversation with one or any of them about how you feel, those that might be receptive or able to - Headway may be able to help with how to tackle that, what you could say etc. I’ve realised it’s important to try maintain these connections, as hard as it is sometimes, but you might and hopefully will find that they don’t even realise you’re going through this and actually want to be supportive but just don’t know how. I think a good counsellor could help you with that, working out how friends can support you practically or otherwise.
Just remember there’s always someone on here whenever you need to vent or get some advice or just a friendly nudge in the right direction.
Take care and hope you have some easier days ahead.
By the way, one good friend of mine didn’t know the extent of what I was experiencing until I told them and I thought like you I would over-burden them but actually they don’t see it like that, and are glad I’ve told them. We make a point of talking about all sorts of stuff now, not just the health stuff as I was so worried that was all I talked about.
go and welcome to this group .. this has without a doubt been the best place for me to learn and feel warmth from people who actually do understand and care … you will met some very knowledgeable people on here who dare I say it know more than the Drs 🤪 I would try to get to see a Dr about your decline in tiredness etc as they do need to see you and don’t except no for the answer .. likewise ring Headway s head office and explain to them what you have written on here .. we aren’t medics but every thing you have said does sound familiar in the early days of a head injury which you are still in the early stages … ones again welcome to the group and please keep us updated on what the Drs say .. Sue 😊
I empathise with your message sweetie, i had SAH July 2022, coil n shunt July n August 22. No memory for most of that year prior and most of 14 weeks in hospital either, just snippets of the later. I think it was when the Queen of England passed away n that was on my TV in my room, shame thats my main memory.
I too ramble loads now, and get frustrated when tjose around me say look how far you've come. I am aware of that 1:3 chance of survival but i can't remember alot of initial, so hard to accept at times. I've not smoked for well over 20 years, dont drink much, no drugs n not overweight, so often think what did i do wrong?? I do know cus i was fit from walking my GSD miles n miles that probably saved me.
I went back to work September last year in a college and lots of people presume cus i look well I've bounced back and recovered, so don't worry about it. I wish and i totally get your frustrations, cus i feel them too. Fatigue is shocking atm, so much so i leave work next week, i can't cope with busyness of work, noise, lighting etc. I had photophobia which i still suffer from despite special glasses n earbuds, these both help but dont resolve it.
I had a coil and shunt fitted during my hospital stay and i couldn't wait to get out of hospital, i felt loads better then than i do now. The difference i think is all the cognitive work life everyday throws at us and people dont realise how much this affects us.
I joined a Headway group locally to me, we go bowling the last Saturday of each month and i live for that Saturday, i feel normal with new friends and dont wear a mask like i do for everyone else exvept my husband, who I'm very lucky to say is my gem, bless him. At the Headway group, we laugh, natter and offer support to each other, we all have different injuries and our spouses are welcomed too which is amazing. I'm grateful i found them.
If you do facebook theres a group on there called Brain or Shine with Mark n Jules, their group is do supportive. Mark has a brain injury and Jules is just awesome. Its a private Facebook group, with podcasts and seminars and the xhance to talk too. I love their work, so perhaps check it out.
Reach out anytime you need to, we're all on here to help and offer an 👂 or 🫂 virtually when one is needed.
To start I would 100% agree with the replies above, seek some professional help, especially if you are feeling depressed, don't suffer that alone.
In addition though a few other thoughts. I had my SAH back in 2015 and it took me a good couple of years to find my feet in a new life post ABI. Now we are all different, but by sounds of it you had a rough time with the shunt and getting that set right, that will not have helped your recovery at all. So I guess what I am saying is don't expect too much from yourself all in one go, as someone else said above its early days for you.
I was given what I felt was good advice a few years back, and it was simply put that though (within certain limits/exceptions) we should be able to do all we were able to do pre ABI but, and this is the important thing we may need to think flexibly about how we do those things. Moderation, don't have those blinkers on (I am so guilty with that). Yep we are lucky our brain injuries didn't do for us, but the impact on life going forward is often far from easy to deal with and we obviously don't want things to have changed.
For me exercise is one of those things that I needed to learn to do differently from prior to my ABI. I used to be at the gym, cycling, classes whatever most days, now I have turned that right down. I walk a fair bit and have a moderate 30 min PT gym session once a week, occasionally if fatigue isn't bad I will go out on the bike (but short distances). It took a good few years too to get to that point. So be gentle on yourself.
I wondered if the pressure of a new job, along with with everything else is tiring you out? My lowest moments are usually when I heave done to much and the fatigue is biting particularly hard. Not saying the will be the cure for your depression, but might help to keep an eye on that if you can? Headway OT's can be an amazing source of guidance, help you understand where your limits are now, what triggers your fatigue, how sometimes little tweaks in how we do things can have a significant reward. I know I couldn't have done it without their support.
If I am off the mark apologies, we are all different. Be kind to yourself, recalibrate what you expect at least for now in what you can do. We all know that recovery from an ABI is not like trying to build up physical strength you can't go at it till you are shattered and then sleep it off. Good luck, keep talking, you will get there.
I will follow through with the mental health professional and see where that goes.
I probably am trying to do too much, I guess my difficulties the past few months stem from the fact that I am probably doing slightly less than in Nov/December when I got through it. I imagine the new job is having the difference (I actually think it's the commute / lack of sleep rather than the actual work).
I have to learn to be more patient - not always easy!
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