2 months post op wobbles

[Navillus]

Feeling really low today. One way I feel incredibly lucky as got away with both surgeries with very little neurological deficit but starting to notice my memory isn’t as good and becoming frustrated. Feel so tired still. Feel I should be back to me and feel my family all feel I should be. They act like I’m unscathed yet I feel different and still have worries and concerns. Weird occasional pains in my head, itchy scalp, puffy swollen blurred eye, now not happy with look of final Cranioplasty, getting increasing blurred vision in one eye scared it’s gonna effect my driving again so wanna keep quiet but also want it sorted. Feel such pressure to be ok and act ok and be back to 100% but feel far from it. Feel husband and children are tired of it all now! Don’t feel I can talk to anyone.

[malalatete]

Woah! Woah! Hang on a moment there! 2 months after open brain surgery and you are thinking you should be 'back to you' already...?! You had brain surgery, not a broken leg! Your brain is the most complex organ in the body, the control centre for every bit of you, your engine room...and you've had someone in there, fiddling about, taking bits out, putting bits in. You can't surely expect to be up and running around just a few weeks after that! Hysterectomy recovery time -6 weeks. Hernia ditto. Hip operation a few months. That's basic body engineering compared to what you have had. Relax and give yourself time. And tell anyone who doesn't support you in taking time to convalesce, to recover, to readjust to the 'new you' to back off.

Because this is a new you. Being 'back to you' is an idea that you should probably shelve, or bin. Fatigue is to be expected - and continues post recovery (even for years) for many. It can be part and parcel of the neurological deficits. Your eyes may settle, or you may need help with that. Best thing to do is be up front about it and get yourself to an optician. People do drive with some visual defects. It's not a definite that you will lose your licence. But you do need to know that you are officially ok to drive (otherwise you could invalidate your insurance cover). Memory problems are common - even 'normal' -after brain problems and medical intervention. It is unlikely to go away -but there are loads of ways you can adapt and cope with it. Basically though you need time to absorb all this, to come to terms with it, to figure out what life looks like in view of these changes - in short to get to know the 'new you'.

It can't be rushed. It may be quite a while before you realise all the changes and how to work round them. Pacing is a good response to fatigue and there is loads of advice about it on the net. It is basic self-care really but the modern world doesn't really get it. Getting your eye issues assessed confronts that head on and will remove an element of worry too. Worry is tiring. Memory problems are to be expected, may be permanent, but can be tackled with lots of post its, your calendar and reminder function on your phone, Google home or Alexa if you have one. Yoy will find strategies that work for you. Be up front about it and tell people what to expect.

Give yourself a bit of wriggle room with this, and encourage others to think of you as still taking your first tentative steps after a hip operation, and ask them to be aware that you may need some help or support for a while yet, that whilst you hope to lose the wheeled walker in a week or two you may never be quite stable without your new friend the walking stick, and that next week's planned Fun Run is out of the question (or whatever your alternative neurological picture might be). For now.

Take care. Take your time. And many blessings for your ongoing recovery.

[Navillus in reply to malalatete]

Thanks for the encouragement. It’s upsetting when I say I feel tired or have an ache or pain and I get “what still”. I think they’re a bit sick and tired of my illness. I have been for eye tests and they said eyesight has deteriorated a little but only as it would with age not anticipated to be down to surgery. They have confirmed ok to drive. My eye isn’t blurry all the time but when I go to 6 week appointment check up gonna have to mention it. I think it’s when I’m doing too much and my eye gets puffy and swollen coz my ani was behind my right eye. I’m 2 months after my Cranioplasty op but 8 months after ani operation so family seem to think nearly a year so I should be back to being ok but don’t feel it some days. I had a brain infection after bone died so was on antibiotics July-November and then Cranioplasty end of Jan. Ive had a moan at the teenage sons and husband and I’ve had an early night so hopefully be a better day today! I feel guilty for moaning when I’ve come out of it so well but doesn’t mean some days I really don’t feel like I am on top of it and coping but I suppose that’s life and we all feel like that some days and I need to just give myself a break. Ive always had a great memory and been very organised but frustrated with the new me some days. My husband says the new me has always been his normal but can’t help that it bothers me not to be like I was. I missed all last summer and it has seemed a very long winter so perhaps I just need some sun. Gonna get some vitamin D too - might help.

[me2you]

Always here if you need to talk xx

[Navillus in reply to me2you]

Thank you - this forum has been such a help through the process and if I can be an ear to listen as well - the offer is reciprocal. As much as family help sometimes it helps to talk to people who have had similar experiences.

[54Apple54]

Take it easy ,early days,good luck with your recovery x