They just don't understand

[ninja]

Hi All

How many of you have experienced the problems I am experiencing. Some months ago I agreed to go to London and stay overnight to see a show travelling to and from Wales by coach. Since then due to headaches and exhaustion I feel that I will be unable to stick the pace and rather than be ill in London I have decided not to go and because I look well friends don't seem to understand and think I'm making excuses which obviously gets right up my nose. I am also told by another friend that I would feel much better if I lost weight and walked along the riverbank. Losing weight I accept but at times to walk our local riverbank is like asking me to walk from John O Groats to Lands End whether I be 9 stone or 17 stone.

How do we educate such people because at times I feel like bopping them one.

I am one year into recovery and have good days and bad days as do you all. I have got most of my marbles fortunately and do try to explain to people but can't seem to get through to them. Any advice would be appreciated.

Cheers

John

[Louise]

Hi John

Oh & I thought it was just me that had friends/family like that, obviously not.

Its a tough one if you've explaned to them I used to say into myself if you lived me for 4 days you may see things differently.

Sadly though for me its not the friends so much the problem its family I've had the thing with.

But your wise not going if you think you wouldnt be well after all only you know how you will be when your away, I'm not to good away from home now I've had to make desissions about not doing things dosnt mean to say I like the choice but its what's best for you that counts.

Take care

Louise.

[Skippy]

Hi John

Its really tricky to give sound advice on this one cos it is hard not to lose your rag with people when all they see is the person walking around and talking. Karen and I have often said that we wish we could wear a bandage around our heads so that people would see that we are still ill.

Personaly I wouldn't stress it - just politely tell them that you know they can't understand how you are feeling and you're glad because you wouldn't wish this on your worst enemy, but that you are not fully recovered and can only do certain things at a certain pace. Try to look at it from the other side too - when my friends see me and I'm acting the same as I used to and laughing and joking - its hard for them to get to grips with the fact that I'm actually still recovering from a life threatening illness - jeez its hard enough for me to come to terms with let alone my friends

Chin up and take your life at your pace - just don't go bopping anyone

Catch you later

Sami xxx

[Karen]

Hi John,

My advice would be the same as Sami's ...... it is hard for some people to understand about the impact of brain injury when you look well on the outside. Although, I can understand your frustration, as I've been in similar sorts of situations myself......most people do understand.....but there's always odd people that don't.

Take Annie's advice and ask your friends to take a look at this website, as it will give them a better understanding of the ongoing recovery period.

Don't let it get you down and don't lose friends over this, even though you're feeling frustrated with them at the minute.

Keep well,

Love K x

[Annie]

Yes, if they'll peek in on our conversations here, they'll get some idea that first of all this is real, second it takes a long time to recover, third that even recovery doesn't mean you're the same person you were, and four that you're NOT over reacting. You just need to be the squeaky wheel and speak up for yourself. The hard part for me is to keep doing that when you get the feeling that they're not buying it. The other hard part is that I tend to think that of THEM when they are not really feeling that way at all. It's sometimes my own inner voice saying "they don't believe you". Not sure why I'm that way. Guilt ridden I guess.

I find it very hard to plan anything in advance because I never know if it's going to be a "crash" day. So, when I do set up anything with friends I always say that I hope I'll be up to it and that I really want to do the thing and really want to be with them.

xo,

Annie

[Karen]

Annie, I pretty much say the same thing to my friends as well. Good friends of mine understand this now and they know how much I value them and wouldn't let them down unless there's a very good reason. Think that they've adapted to me pretty well now and so I'm blessed. However, I still feel guilty if I have a "crash" day and have to cancel.

Love K x

[Guest Tracey]

Hi

I am finding as time goes by some people get less understanding. Its like they think I should be over it by now. That said I also have friends who I get the feeling are a bit on edge in my company, I think they think I am a time bomb and could collapse at any moment. Its a lack of knowledge and understanding on their part. It does make it all a little harder in the day to day. Its another example of how it changes everything in your life,

not only do you change in yourself but the perception of you by others also changes. I think we deal with it some days better than others but its true what they say , you find who your friends really are. Forums like this are a godsend, at least somewhere someone understands and that can make all the difference.

Take care

Tracey