Support please

[Health222]

Hi Everyone, New to this but just needing some positive friendly help and support. Fell and hit my head last year and I am still living with persistent concussion symptoms. Memory issues are a main concern, one day okay, next day awful. I also feel alone and scared. I am reaching out to the community in the hope someone will reassure me that life will be okay eventually. I need a hug really but will take kind words. Big love to you all.

[James1984]

Hi, are you able to get in to see doctors/specialists? Do you have any organisations near you that specialise in brain injury?

I understand your frustration with getting a brain injury recognised for the impact it has on your life in a work-related sense, let alone living with it day-to-day.

All of us here have had various impacts to our life. In my case, I had a stroke very young and have recovered a lot, but there have been many hurdles I've had to conquer along the way. There have been good moments and bad moments, times when life was very good and times when life was very challenging. Life is never the same, but it's taught me to persevere nevertheless.

Be kind to yourself and be positive about your future.

If you have concussion then it's especially important to look after your mind and body. Minimise stress, eat and drink healthy, exercise, and get plenty of rest. Go to your Doctor and get a blood test done to make sure you are not deficient in anything.

[Mhelpsme]

Hello Health222

Yes life will get better …but it takes time. I asked my GP how long before I was better and he said he couldn’t answer as each injury was different. What he didn’t say was it took a long time. I believe knowledge helps us all to deal with life’s challenges better.

Speak to your GP, let them know about the problems you’re having. Ask him for information on concussion injuries and to refer you to someone who can help you. Ask him if there’s a Headway group in your area, this is a group of people who have all suffered a head injury. Their experiences and understanding are a great support. Their website is Headway.org.uk and there is a lot of helpful information online. Tell your family and friends what’s happening, don’t bottle it up.

Rest when you feel tired and accept you are improving, it’s just that head injuries take longer and are invisible to the outside world.

Do not feel alone - we are here, someone will see and answer any plea for help or company or virtual hugs - albeit from a distance.

Do something today that makes you feel good inside. Doesn’t matter what it is (so long as it’s legal 😝) it just needs to be positive. Go for a walk, be amongst people.

The weather my end is 💨☔️ 💨 and I’ve got to take my dogs out for a walk 😖, they’ll chase the leaves and bound about in the wind, I’ll pull my collar up and think of coffee and biscuits for when I get home ☕️🍪.

Take care 🫂

[TreesMTBI]

Hello Health222, welcome! You’ve come to the right place for some friendly helpful and hopeful support. As mentioned before, we all have been affected differently by our head injuries but the main thing to remember is that our brains are always trying to find ways to heal and adapt and find new pathways around the trauma. This can be tiring so take lots of breaks especially screen breaks. Hopefully you’re getting some input from your doctor to get some help or at least to make them aware. I won’t repeat others advice other than contact Headway for more tailored advice and support.

I have post concussion syndrome and PTSD after a slip-fall on a stone tile floor, loss of consciousness, amnesia, and brain injury nearly 8! years ago BUT I didn’t address it until 2 years ago (whole other story of trying to battle on like nothing had happened and not admitting I needed help even though I had become dependent on others and couldn’t work etc!). But this is to say that with the support and different therapies I’ve been getting over the past 2 years, I’m improving all the time now.

Try not to worry, what you’re experiencing is ‘normal’, sadly for all of us. You’re in the early days so plenty room for improvement and healing. Take it steady. And don’t let anyone tell you there’s nothing wrong with you or that ‘you look fine’. Just know that you are not alone.

Take care of yourself and come back here any time you’re feeling desperate or despondent or in need of a friendly word of encouragement or sympathy. This forum has been so important for me to not feel like I’m going mad and all alone in this.

Trees x

[Pairofboots]

Welcome, as others have said, talk to your GP, but also check out headway.org.uk or call them during office hours 08088002244, they have a lot of resources that may be of help.

[Graceissufficient]

Snap, Health22. How long ago? My fall was in Sept last year. I'm 70 though.

Are you seeing improvements, though v slow? There is a very good document on PCS on Headway saying something like "this is going to take the longest recovery of any injury you have experienced".

The medical reports, such as they are, say that nearly always it resolves in 6 months. Sufferers are always worried it will never resolve.

However it is clear from posters here that for some it can last much longer.

It can help to keep a diary so you can track triggers and improvements. I never have because after the first two or three panic stricken months I could see it was v slowly getting better.

How are you sleeping? Are you allowing yourself lots of sleep so your brain can heal? I sleep 10 hours or more, like being a teenager again.

Are you being kind to yourself and not pushing yourself to do stuff like you did before? This is a condition you can't fight your way through. Fatigue is a massive factor for me. One day I can operate almost normally for six hours say, then the next day I'm useless. Fatigue may be behind your memory issues.

Leaf here had a brilliant metaphor: it's as if our brains are a small business with 100 employees. Suddenly 75 have been fired and the 25 left are trying to do the work of 100. They are naturally happiest doing their old jobs, new tasks are hard - as MD of the firm, be kind and understanding to them.

Give them breaks.

How are you with bright lights and walking, physical effort?

[Health222]

Hi Graceissufficient, Thank you very much for your kind words and support. I really appreciate your contact. I am just over a year in to my situation and have found the whole process of trying to find help and progressing forwards very challenging and stressful to deal with. How are you doing? I agree with all that you have said particularly around sleep and the effects of poor rest on memory. Memory is one of the things I struggle to rationalize the most. I have days when I feel almost me again and others when I feel completely broken and lost. I think the analogy of the brain being a small business is a lovely metaphor which helps to reflect upon what is going on. I use my brain a lot in my job, I am an academic of sorts and the anxiety that comes from feeling as if I am not communicating or thinking as well as I alway have is significant. I also struggle with depression and feelings of extreme loneliness. I am without a family or partner and I find the prospect of never being able to have a relationship again very difficult to process. I hope this won't be the case. You sound like a very nice person, and I hope that you are coping okay today. I hear your issues around fatigue, that gets me also, but I hope that today is bringing energy to you. Lights I think are an issue, I work in a place with florescent lighting and I think this affects me. Also, I have gone from being super fit and physically active to being able to do almost nothing without being wiped out the next day. Have you got anything nice planned for today or the weekend? Sending you lots of positivity and sincere love and best wishes.

[WonderingWanda in reply to Health222]

I agree with all the suggestions from our friends on here but can add a little about the exercise specifically as I used to train hard, do endurance training and regularly cycled hundreds of kilometres a week.

Exercise is excellent as rehabilitation from the TBI BUT you must take it more easily than you have ever before. I mean keeping lower zone heart rates for many more sessions and not even trying threshold or sprint work until you a certain that repeated consecutive low HR days do not leave you depleted. High intensity work will knock you for six and it has taken me 2 years to even start them again. Then I can only do one a month

The low intensity work will gradually build. But it takes years. Having said that it does improve the resilience and reduces fatigue under the normal daily conditions. So it’s worth pressing on with it even if you don’t think it’s doing anything.

If you try to push it I’m afraid you’ll learn the hard way that the whole recovery process will take its own sweet time and pushing through only worked in your previous version. Health222.V2 needs to be more wise to it.

Life does get better but accepting the situation as it is will be the starting point. Resistance really is useless- the Daleks were right! lol

[Gordo6500]

Hi I know how you are feeling, since the standard of care is go home and rest ,get exercise eat healthy. For me my TBI happened 4 years ago and it really was life changing, severe anxiety and depression mood swings, blood sugar lows . But I did find a treatment that worked for me to relieve all for the most part. Research Dr. Michael Lewis and his book When Brains Collide , you will find an outline of his protocol using Omega-3 and CBD it did wonders for me . Hope this helps you also. Good luck!

[Graceissufficient in reply to Gordo6500]

Yes, anxiety is worse. Partly because we have become so much more fragile, less able, less able to operate or fight daily circumstances. I'm glad you mentioned that. Opening the post even is harder, making a call - it is getting better, but so slow.

[Health222]

Thank you to everyone that has replied on here. I wish that we could all meet to talk and share a hug or two. It is a very scary time at the moment, and there are more dark days that bright. But I know I must remain hopeful of more positive times a head. The advice that you have all provided here has been heard and received and whilst I admit feeling lost with what to do there are many common threads running through these posts which I will heed. I consider you are friends now, James1984, Gordo6500, WonderingWanda, Graceissufficient, Pairofboots, TreesMTBI, Mhelpsme. The time taken to reply has helped a sufferer and I thank you all from the bottom of my heart. I will undoubtedly post on here again in the future, I need support and I hope you don't mind when I do. Here's wishing you all a peaceful and happy weekend.

[RainthenSun11]

Sending virtual hugs 🌻

[Gimliwoman]

More hugs from me🌞

[Health222]

Thank you for the hugs, boy are they appreciated! Sending them back!

[Nemo24]

I have best time meeting other people with brain injuries as they just understand without lots of explaining. Have a look on Headways website for local groups.