I had my rupture back on 10th December and craneoplasty 2nd May, but still suffering with a lack of sensation in my fingers and It’s just starting to get me down if I’m honest.
My son was born yesterday and I’m at the point where I literally am too scared to pick him up and hold him just in case I cannot hold him without the fear of dropping him. I’m doing my exercises but nothing ever feels like it does anything. I’m just getting increasingly frustrated and just wake up wishing I didn’t to be honest.
I’m just needing somewhere to vent as my family can’t understand and basically just say that you are still here and if that is the worst thing that lingers after having to learn to walk again then It’s not the end of the world.
I just guess I hope that someone can tell me it gets better as I am just loosing hope as each day passes and just feel like a joke of a person.
I do my best day to day and use my hand like normal in the hope it will just start to feel better again but every feels the same.
Thanks for reading.Hi all,
I had my rupture back on 10th December and craneoplasty 2nd May, but still suffering with a lack of fine motor skills and It’s just starting to get me down if I’m honest.
I’m just needing somewhere to vent as my family can’t understand and basically just say that you are still here and if that is the worst thing that lingers after having to learn to walk again then It’s not the end of the world.
I’m just fed up of feeling worthless. My wife had a c section on Tuesday and there had been complications and due to my initial seizure I cannot drive or reapply for my license until December, she had to go back in to hospital today for further tests but as I cannot drive I was literally useless today.
I just guess I hope that someone can tell me it gets better and life begins to feel worth while as I am just loosing hope as each day passes and just feel like a joke of a person.
I do my best day to day and use my hand like normal on top of exercise from my OT but I don’t really feel all that different.
Well, I can tell you that you are in the right place to vent! You are among friends here who collectively have a much greater appreciation of the varied challenges, frustrations and irritations faced. While very difficult, if not impossible, to know how another person is feeling it is great to express that. I hear you, and appreciate the impact.
I am a believer that healing and recovery, while never linear, goes on indefinitely. While we continue, we also learn how to adjust to meet new challenges, and this is very difficult, or certainly was for me. It sure sounds like you are doing all the right things physically and pushing yourself, the body is amazing, and our rehab experts are amazing.
The physical part is one piece, it is important to make sure you are taking care of yourself in all aspects. That extends beyond the physical. These are life events that we are not prepared for, unexpected, and ones that most will never experience. I have learned much better through some professional assistance(psychologist) to deal with the pressure, new challenges and frankly emotional responses that I was not used to. It was a big help for me.
I think these things just take years longer than any of us have the patience for. I think it is important that you carry on with the OT exercises.
Less than a year post op is still very early, I promise!
There’s a documentary that I watched on BBC 2 several years ago which followed the recovery from stroke for a chap called Richard Gray. One of the key things I remember from that was the neuro rehab doctor said that his approach was always to do rehab exercises 7 days a week, not 5 days a week.
There are definitely others here who have had a bleed who have worked through to get good recovery. I hope some of them will see your post and be motivated to share their experience.
I wanted to say that it’s not unusual to have big feelings around the birth of a child. I wanted to bring that to the forefront because it is a huge life event and can trigger feelings that might be more manageable at other times of life. Give yourself some grace and your recovery some patience as you make these big adjustments in your life.
Other than that, I also wanted to say that I too have lost some sensory in my right hand. I have good motor control but can’t feel my index finger and thumb very well. This got worse as my brain healed after surgery, which is pretty frustrating. I try to take a deep breath and remember how terrified I was before surgery that I would die and how badly I wanted to have more time with my children. That always helps me calm right down and accept that there are tradeoffs but that those tradeoffs are worthwhile. The world needs you and your baby needs you.
I didn’t recover in 6 months so please try and be patient with yourself. Pre rupture I could play any sport and then overnight I was bed bound.
After 2 years maybe I was 75% recovered
Now, 30+ years later, I can walk and hike but I can’t run and I catch a football 50% or a baseball 30% depending on how my brain feels.
An avm will change you, so keep doing those repetitive exercises and hope to get back as much dexterity as you can.
All I really appreciate each of you responding and offering your words of support it has helped me feel like I am part of a great support group!
I think I need to cut myself some slack as I have achieved so much looking back after waking up in hospital and not having a clue what has happened.. From learning to walk again to now being able to run without pain or clumsiness on the treadmill and lifting weights to get my strength back, but more importantly I can play and chase my first born son and soon to be my second son in the park!
Hopefully I can regain my driving licence in December too as that will be a huge boost to my recovery gaining my independence back. I haven’t had a seizure since the initial bleeds and not on any medication so hopefully I am in good shape to achieve this.
I am looking forward to going back to work later in the year with a phased return but I think that will help me feel like myself again! I take pride in my work but also the ability to provide the best life for my family and boys so this will be a big milestone in my recovery I think!
Based on everything you describe here, it sounds like you are on a great track to success! I had my first bleed at age 10 and then I finished my school year at home. I graduated elementary school by only attending for half-days, but in high school I was a full time student. It is really remarkable if you feel confident going back to work; that’s a huge milestone.
Today is the six year anniversary of my second brain bleed, and while I don’t feel completely like myself (and I am still waiting to confirm that my surgery worked), I am doing my best. I have been married for almost a year and I am going to Europe on Friday. (I personally can’t believe it!)
Congratulations on your new baby boy, that is wonderful news!! All the best!
I’m curious where your rupture was. Everyone is different. I have ADHD and in the past had migraines that were treated with meds in US so I didn’t want word salad again, tried pregabilin and then duloxetine neither worked for my neuropathy in my feet and hands and outside of arms are all tingly and burny, like they are just waking up but that has been a while now happening, for some that feeling is it’s coming back, not me. I’m now tapering off duloxetine and going to try canabinoid oil as people have said it’s great and I think I’ve read all the studies and it is worth a shot to me. Recovery is slow after the first six-eight months or so, but the fact you relearned to walk like me struck a chord. Where are you located now? How long has it been, sorry I’ve always been crap at math. Mine was March ‘25 so it’s almost a year and a half out. Doctors don’t tell you anything but at a year you will stop learning things, that’s not true! I’m slower but since things with practice improves my emotion regulation, meaning I’m not as mad doing stuff and I even started a tiny beach house that I haven’t touched since before my AVM rupture. Basically there’s still hope just takes practice and endurance, I think the fact you haven’t dropped your son at all is huge! I would be paranoid too and look at ways to hold him sitting down, or go to sitting right after picking him up to have more support from your legs and it makes it less likely to drop him then. I had a rocker (soft like a recliner) which helped me and my son in his room, I sat on the floor a lot for that fear with having full use of my hands then, it’s “normal”! Just do you and everyone will adjust and people are stupid wherever you go! Use the energy you have and when you’re done for the day just tell family that too and don’t be afraid to rest, I know easier said than done , from mom to a mom. I hated the word accept when I was recovering and a psychologist I had to see said how about “Endure” and that word was not as BS to me, you can endure this because look back at all the shit you’ve already done!
It’s a tough journey, some take longer than others, but you’ll get there and reflect at this time and be grateful for everything you have… I know this sounds super cliche but being alive is a blessing, having a healthy child is a blessing!
I’m my own worst critic and was always worried about worst case scenarios in every situation that indirectly came across as negativity BUT nearly losing my life to my AVM bleed really was the best thing that ever happened to me… I reflect all these years later, with young children and think how lucky I really am.
So many didn’t have this luck, so many had it much worse than us, and there is always someone out there doing it much more tougher than you or I that is grateful for everything they have… I feel your pain and frustration, but like everything in life it takes time and patience to heal.
Enjoy your child and don’t lose those magic moments and memories that will pass by so quickly… it’s not easy, but you’ll need to try and head into a different mind set and find the positive out of everything in life… it takes time to get there but I know you will… God bless!