Family

[Julesgettingthere]

It is like a 'BI Family' isn't it......what a lovely way to put it.

Regards

Jules

[Hidden]

Yep and this family is understanding and supportive

[Julesgettingthere in reply to Hidden]

Why the name 'Hedgehog' Hedgehog ?

There seems to be a lot of good honest non biased advice here - its not as easy as it sounds to get in the outside world i found.

When I read about some of the troubles others are having and in particular when others are obviously having a very bad day I just want to send them a message of support. You can really feel their pain can't you.

I have never come across another member of this 'family' who is talking about how bad it was, but they got through and everything is fantastic now.....what do you make of that ?

Regards

Jules

[Hidden in reply to Julesgettingthere]

Hi Jules

Long story but it's a nickname!

I agree about wanting to reach out to others, when you can really empathise and you understand how they are feeling, it really touches your heart.

As for the forum family not talking about how bad it was and how fantastic it is now - well there is a lot of factors to consider.

1) How recent BI eg mine is only 7 months so I haven't reached the everything is fantastic stage yet!

2) Do the ones who have reached the everything is fantastic stage, get their lives back and therefore leave the forum as they no longer need the support? I would like to think I will stick around to help others, but the truth is when you are working and busy etc it is not so easy.

3) The really sad and negative one! Maybe no one on here has got the everything fantastic stage. Maybe the damage was too severe so effects are life long? Not nice to think of that but I guess the truth is we are all hanging on to hope, but don't really know how the future will pan out.

So back to you Jules How long since your BI? And why do you think no everything fantastic people?

[Matt2584 in reply to Hidden]

Long story eh.

So hedgehog is nothing to do with the fact your spiny then? Can't be, that is too short of a story :).

[Hidden in reply to Matt2584]

As if

[Matt2584 in reply to Julesgettingthere]

By the way, I agree Jules. It is not easy to get advice on the outside world. My BI struck in 1996 and I did not really start getting any support until 2007!

[Julesgettingthere in reply to Matt2584]

Hi there Matt

So what was it that changed so you got help at long last ?

It is intriguing as to how Hedgehog was named 'Hedgehog' isnt it !

Hopefully he runs a hedgehog sanctuary -I love hedgehogs.

Did you read any good books to help you recover/what was the biggest help to you ?

Regards

Jules

[Matt2584 in reply to Julesgettingthere]

Hi Jules,

When BI struck in 1996, I had covered about half the term of my first year at senior school. I returned to school but have had to visit the hospital more times, so I have been in and out of school since then. My education has been messed up and I ended dropping out of school a year earlier than the others in my year. Since 96, I had had no, or little support, offered to me which I think is very wrong. I went to college in 2000 and came out in 2001, still with no real support. Since I came out I decided to stay at home lounging around really as I didn't actually want to get a job and later found that I wasn't fit enough to get a job. So I lost a lot of confidence, even though my confidence was quite low already, and also lost motivation and was not very social at all. 2007 arrived and I had a checkup at the hospital. My Mum picked up a leaflet advertising Headway and so I looked up the website, wrote down the info and contacted them. Since May 2007, I think, I have been using Headway. And because of Headway I joined other disabled groups too. I joined one in 2008 called the Disability Activity Group (DAG) and that was where I found about the bus pass. I'm sure there is other info out there for disabled but it is not well advertised and half the time we have to dig for it. DAG has closed now because of lack of funding. I found it funny when I had a check up at the hospital around 2009-2010 and the doctors asked me what I was doing with myself now I told them I am a member of Headway and they said "Oh, what's Headway?". My Mum got the information for Headway from there hospital!!

[Julesgettingthere in reply to Matt2584]

Hi Matt

The NHS are just so busy, I see the work they do for my mum and what they want to do now to help me. The shame is too many patients with too little funding - which is going to get worse (no matter what they say).

Until recently I thought someone somewhere was going to show me what to do to improve - but my husband says its like anyone with an injury, you are expected to help yourself heal, Just as if you had rehab for a broken leg you would work hard at it at home by yourself. But what do you do when you try but cant get further forward with things like concentration.

Its not a perfect world is it - but people like us are lucky enough stiull to be able to converse (even if it is by e-mail) I am very aware many people suffer far bigger problems.

I am looking forward to my new Brain Work Book to arrive - should be tomorrow I think.

I am starting to feel a bit low today, good speaking to you - sorry about the babbling on.

Regards

Jules

[Matt2584 in reply to Julesgettingthere]

No worries about the babbling, I can do a bit of that at times. I don't know if that is BI related or a genetic thing :).

I forgot to mention hedgehog in my last comment. It is intriguing to know where that came from. Hedgehog is a she according to her profile. She said it was a nickname, maybe she used to be able to run fast so they named her 'hedgehog' because of Sonic the hedgehog haha. That is just a guess though and is also not a very long story so that was probably wrong. I like hedgehogs too, the animal that is, they are cute and are getting scarce now which is a big shame. Scotland used to find hedgehogs as pests. I don't see hedgehogs as petty type creatures at all.

For me I do a lot of art which obviously uses up a lot of concentration and it can do me in, as in low fatigue. So I would then rest. Play on my iPad so watch TV. I don't sleep as much as I used to. Sometimes if my eyes feel heavy, I might sit in my chair with my eyes closed for a few minutes, that really helps.

I am quite a quiet, reserved chap and so a lot of my words are easier to get out in an email or comment, I get to think more of what I want to say on here. At my local Headway group, I do talk amongst the group but don't really have a great deal to talk about. I am a service user mentor AKA a volunteer and I assist the group by making the drinks. I am quite notorious for my work :). It is something I love doing and I don't have to talk so much that way haha.

Nice talking to you to :).

[cat3]

Yes Jules, that's exactly the way I feel about it. Our families (understandably) would rather see us through blinkers which filter out the difficult/awkward bits. But here we can bond with folk who live with bi every day . . . . . . . . and didn't know us in our 'other' lives anyway, so accept us as we are now.

So there are no comparisons or regrets or laments ; just empathies and support.

[Julesgettingthere in reply to cat3]

Hello Cat

often in my dressing gown half asleep when I am chatting to people on this forum ! But yes, just like family it doesn't matter.

Have a nice Sunday

Regards

Jules

[Hidden]

CERTAINY IS & WAY MORE SUPPORTIVE THAN MY REAL ONE.

[Julesgettingthere in reply to Hidden]

Hi Zeblet

Yes, same for me - I have gained a family from it.

Regards

Jules

[dillyd]

My son told me I ought to join a support group

I am the main carer for my BI husband.

I told him I have one here, more helpful & supportive than any family or social worker.

I would be lost without you all

Thank you everyone x

[Julesgettingthere in reply to dillyd]

Ditto

Thank you every one

Jules

[Matt2584]

I think 'BI family' is how Emma, the broken doll, described us too. Well at least she dleant address us by saying "Oy!", you've got to give her that :).