Hi,
My llfe has changed so much since suffering subdural haematoma and I find it so frustrating not being able to do what I used to be able to. Not being able to remember anything that happened makes it very difficult to understand and comprehend where and why I am now in this position.
Sorry you are struggling. Mines slightly different as I had hsv encephalitis. But I'm 2 years down my recovery path so here's my advice-*There is no normal and I found it a lot easier when I stopped trying to 'get back to normal' and instead focused on achieving what I could do and moving forwards
*speak to professionals. When I was recovering we were in lockdown so it was a lot harder to access professionals. But speaking to neurologists helped to understand what had happened physically and why I was struggling.
*take each day as a new day. Some days you may find easy and things are doable. Other days hard and all you want is rest. That's OK.
*I accessed mental health services to help with how I was processing what happened. And although there are still snippets I can't remember, we did unlock some memories and again it helped with understanding.
*find something you enjoy doing. Even if you only do it for a few minutes each day. It helps to reconnect you to YOU. Mines painting. I painted through my recovery and it was a good tool.
*set realistic goals. I set myself the goal of getting back to work within 6 months. Unsurprisingly that didn't happen! Took 12 months to get back to work. And I struggled that I hadn't reached the goal I set myself and I over did it.
*use support around you. People want to help. If they offer its because they want to. Accept it.
Much love
Brie x
Hey brie, I'm an encephalitis survivor too. Just had my 2 year anniversary on Jan. Hope you doing ok.my aftercare has been shocking. Neurogist discharged me after 6 months and said I shouldn't have walked out of hospital so he didbt know what else to say to me. I really struggle with how much I feel I've changed but I know I'm 1 of the lucky ones. I managed to go back to work after 12 months but purely from home as not the job I was doing before. Hope you continue to recover well, em
I think in general aftercare sounds like it can be hit and miss. I had to fight to see a neurologist. I got discharged from hospital with nothing. Just told it might take a while to recover.Thankfully I found the Encephalitis Society so I knew what I needed to ask. And I have a fab GP who was happy to refer me to different professionals.
Its worth keeping on asking if you aren't happy.
Yes member of encephalitis society too. They are great.
Thank you for reply and advice. Hugely appreciated
Hi Arti. I'm guessing that you weren't fully advised on the after-effects of brain injury before discharge from hospital. It's instinctive to believe that survival equals recovery as in other types of accident. But unlike an injured limb or organ the brain is so complex and delicate that most brain injuries leave behind lasting issues.
It's human nature to assume we can pick up life where we left off, but Headway taught me early on after a brain haemorrhage that 'normal' would be a very different normal from then on.
But many of us start off by believing we'll be the exception to that rule.
I was warned many times by my consultant that my life would be very different and I'd need to adapt ASAP to avoid frustration & disappointment, but I didn't believe a word of it (I was quite bloody-minded about acceptance 'til coming unstuck too many times).
I learned many new lessons when joining Headway such as to accept the 'new normal' and let go of the old, and to keep testing my limitations but not to exceed them ; they're vital lessons.
It's all pretty alien at first, but letting go of what has become an unviable lifestyle and embracing new ideals is liberating. The transition is the hardest part but, with time, many of us do return to new, but rewarding, work or projects.
Look after yourself Arti and maybe speak with Headway staff on the helpline for guidance & support on 0808 800 2244 during office hours.
Cat x
Hi cat,Thank you so much for taking the time to write your message, I honestly relate to it so much.
I can get so frustrated on a daily basis at not being able to do what I used to take for granted, cycling 100 miles a week, swimming, running etc. I worked as a fitness manager for years now I struggle to stand up steadily , balance has gone. I’m doing all the physio exercises daily, I’m stubborn and hate losing (still competitive) my stubbornness has always been my biggest strength but also weakness, if someone tells me I can’t do something I will try and prove them wrong.
I do remind myself when I get depressed that I wasn’t expected to live let alone walk(maybe shuffle) talk ever again, I’ve learnt to write again and surpassed everyone’s expectations already but perhaps not my own.
I am awaiting skull reconstruction in the next few months, somehow I think that’s going to be like a magic wand and when I wake up after surgery everything will be back to normal, crazy because I know.
It won’t!
Thank you
Rob
Oh good grief ; sorry Rob I've somehow given Blu's trip to the Lakes over to you ! 🤭
But, whilst I'm here, I meant to mention earlier that I watched a cranioplasty procedure on TV a few years ago (on a series devoted to brain surgery) and it was riveting. The expertise is mind blowing and the before & after transformation was remarkable.
Not a viewing choice for everyone I guess, but I'm so in awe of the expertise involved. I've nothing but hero-worship for my own neurosurgeon. 😏
See you later... x
Sounds good. I was speaking to trauma unit at st Mary’s Paddington where it will being carried out, she seemed lovely and, apparently I’m the first person who has said to her I’m looking forward to it and I would have it tomorrow if I could. obviously I’m not looking forward to the operation but it’s got to be done so the sooner the better.Have a good evening
Rob
Returning to work
Returning to work
Returning to the forum...
Loosing the will to live,please advice!
