Hi, just when I think I'm taking 5 steps forward in my recovery the past 2 weeks it's taken 3 back. Again I'm feeling lonely, like I can't say what I have to say and am noticing a big difference in me. I'm not a failure I feel as if I'm just there because I have to be. I'm not being negative, I'm being honest. I have to put me first but when talking to someone to say exactly how I'm feeling there is no one to understand why I'm saying it. Everything changes I know, situations, people, families because of TBI but honestly don't make me feel down because i can't say what i need to say.
Summarising things to others who dont know is a big thing and it is something that is certainly frustrating so venting such feelings here is certainly the right thing to do and others who have experienced the same will no doubt be able to suggest their ways around such things.
You are right..,, you are not a failure and the need to be honest about your feelings is what we are all told we need to do. I think the need to be selective about who we tell such thjngs to is probably the way to go. Some people are more empatheic than others. It may also be a case of finding different people for different things.
A listening ear,
A technical do’er (a friend in my case who used to work for Citizens Advice),
Someone who can assist in dealing with others on non technical matters,
Someone who is logical and organised and can assist you in ordering your days and tasks
A medic preferably one with experience in BI matters
A social ear (in my case another BI survivor although we rarely talk about medical things)
I suppose its a case of building up a new network which will take time and not everyone will be either from your past or necessarily suitable but do try and assess whether you can trust them and of course some roles may be split between more than one person.
And of course Headway!
Just remember that the steps may at times seem regressive but as long as you are making some progress and I suggest keeping a diary to track that positive progress so that you can review and remind yourself that you are going forward, tiny strps at a time.
Not sure about you Lisa but I often feel I'm my own worst enemy. The instinctive need to prove our capabilities, in order to feel as valued as before, means our vulnerabilities are obscured by our overstretching ourselves.
But the exhaustion from stuff which most folk don't find exhausting (noise/bright lighting /people talking at us) can make us seem unreasonably ill tempered.
I guess our able bodied (&brained) folk are happier to accept the desperate front we put on everyday as the norm. But it can feel lonely at times, especially with the soundtrack "Oh we all get that" or "I know exactly how you feel".
When I'm really struggling I've learned to say how it is, in fewest words possible, leaving the rest to chance. And there's always Headway for respite... 😐
People with brain injuries are often given unrealistic rehanbilitation goals. Somtimes we appear to well even though there is an inner struggle beneath the surface. I applaud you progress as 5 -3 = +2. I believe that any step is a good one. The worst idea is to give up. Keep strong and as Winston Churchil said during WW2 'KBO' (keep buggering on).
I find it's a continual cycle, there's just no knowing or guessing when the down part will kick in if we're up or vice versa.
Before Christmas I was quite up, heading in the right direction on quite a few different things.
Christmas arrives and the down cycled kicked hard - I wish I could understand my head but I do know other triggers have been pulled during and since e.g. I found myself very emotional with floods of tears during a few telly programmes. There seemed to be an adoption and looking after others theme going on but I could just be making that up.
Don't know when it will turn again, hoping soon because the headaches and fatigue are just a little bit annoying!
Best wishes for the New Year to you and all our friends here
I felt exactly the same as you with being in the up before Christmas and then the down cycle. I just wanted Christmas to be so much better than last Christmas as I have no memory of last Christmas, but I ended up crying in bathroom so family members didn't see me. Hopefully I start to feel on the up again, but thank you for your reply it helps me.
Lisa.
Thank you to everyone for your replies they all do help me see various views and how people are or giving advice and I appreciate it. I hope you all had a good Christmas and look forward to a new year.
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Sorry. I'm in that place again - sitting up in bed, hoping I can write about how I feel to people who may get it. Or in this case maybe not
my husband has been given a discharge date and i am feeling a bit terrified
The phantoms are at it again
