KEEPING A HOLD

Morning everyone

Was just thinking about how our problems can get on top of us.

When we have to deal with a complaint that will never go away. With a chronic condition that is causing it, our life and ways are effected in so many negative ways, we try and cling onto an earlier life where we had no problems and possibly we were very active like in my past I was a Youth leader part time, I used to instruct table tennis, swim 40 lengths at the pool and go dancing three nights a week while power walking at lunch times when working.

and hill walking on holidays

We all look back with fondness at what we were, and at the sadness of what we have become. The conditions we suffer flustrate us we can become depressed and hide away from a society that cannot understand what chronic pain is an effects it has on our activities

Society now seems to be fracturing and this causes lack of understanding that can lead to a form of harassment that sadly is amplified by our government this makes matters even worse for use to compete in a negative society, I suppose we all agree with this

So what can we do, this leads to depression with flustration not forgetting anger with this thoughtless society. This can really do our heads in.and does, cause us so many problems.

We try and brake the circle and help patients that were causing problems possibly months before. They now feel the problems that they were causing over a longer period of time.

There by the grace of God. so also they start screaming at this unsupporting society.

It really makes you think.

All the best

BOB

[Hidden]

A few of your comments hit home, what we were and what we are now. I remember days when I was so vibrant and alive, now I shudder in pain, tired/fatigued etc.

[stampede187]

Hi Bob,

Great to see you back on! Hope you are keeping as well as can be.

Yes, absolutely agree with many of your comments/observations - chronic pain being 'invisible' for many of us does cause a feeling of being hudged/pigeonholed in society, and not just by the authorities.

On a side note about society, I had an expeience yesterday; I was at school dropping of my kids and was yet again being avoided and stared at after using the disabled parking space which is next to the school itself.... other parents have to walk 50/100m to get there. I have had people come and look in the front window at the badge and even ask me why I was.allowed to drive in, which is fine and I say why I have permission. Anyway, back to yesterday...normally people feel very uncomfortable mentioning my crutches or disability but a boy of about 6 asked me directly why I used my sticks and then what had happened to me.... I obviously smiled and explained why and noticed other parents had overheard this and smiled at me.... I was spoken to after this by several parents standing around which has never happened before even when trying to start conversation; and this continued today when I was finally able to chat away with a few really nice people.

It is a shame that it took the innocense of a childs curiosity to start being able to communicate with adults, however, I am grateful for it and hope the banter continues.

Maybe this will encourage me to get out a little more.... maybe it was me being a little paranoid or people feeling awkward and not knowing what to say when its obvious I have pain... who knows, but I liked the interaction and felt like my old self again by cracking jokes and laughing with others; outside of those who know me of course.

Take care all....... maybe I should have a board round my neck saying "talk to me... I dont bite!"

[Hidden in reply to stampede187]

Hello stampede 187,IYes it makes a big difference when people take you the way you are, I feel up here in Berwick, I live in the countryside and feel that my neighbours are really kind and are always there for a chat, This is a new thing for me and it is eye opening after living in a town with all the problems of a built up area, with middle management that is get up and go. .

It makes a massive difference and is an eye opener that is so good from negativity and peoples avoidance

It is nice to be back on here

All the best

BOB

[Hidden in reply to stampede187]

Unfortunately we adults loose our curiosity and directness that we had as children. Anyone ever noticed how much simpler children's relationships are because of it?

We still harbour Victorian polite etiquette, mostly unconsciously, with regard to others. Its considered rude to be direct, and with illness and disability, people are fearful of talking about it for many reasons. But the main one is not being prepared for the answer that might be supplied. They are quite often scared of how they might react themselves, maybe upset you in the process.

It is hard for people to relate to disability and illness if they have not come across it in their life. We are generally healthier so there are a lot less childhood illnesses, and a lot of things can be cured now.

[dogbreeder in reply to stampede187]

Hi You are not the only one there, I when my daughter was much younger used a scooter to deliver and collect my child from primary school. No-one asked why I could not walk like they did. people even complained to the head that it or I was in some way dangerous decause kids being kids not looking where they are going nown again tripped up on say one of the wheels etc. I did not matter that i was stationary at these times and was in no way at fault but because in these few cases the child did not simple bounce of another human being but into my scooter seemed to cause problems.

One incident occured out of school on the way home we were on the path I had my daughter walking along side me and a friends child I also picked up. This young lady was mucking around with her so called child minded ahead of her so she had no idea what this six year old was doing. she danced backwards into the front of my scooter and I had seen the incident ahead of time, as you do,and had stopped. As she came backwards dancing she caught her shoe on my wheel. No harm done, she appologised and almost immediately her minder started swearing and cursing at me. I managed to get home only to have the mother of the child acost me the next morning I politely explained what had happened but she was the same swearing and very frightening, normally I would have held it together but I am now a vonerable person who can't fight back. This was all infront of my daughter and scary. I thought that would be that after I had explained that her minder had not seen what had happened, but no I was in the wrong. The very same day on the way to collect, I was accosted by both of them the lauguage used was appalling and I was extremely frightened, I pulled my scooter out onto the road and turned it to 8mph and tried to get away but they ran after me, can you believe it. It was like something you read about but it was happening to me. I guess it looked funny to anyone else as I tried to get away on a mobility scooter with these to manic women chasing after me. Once at the school I went into the building to escape any further abuse and waited with my daughter until one of my friends came to pick us up as I could not do it again. I have never felt so small and helpless, I told the school and my husband and they both agreed that I should report them to the police. I did so, but just wanted them to be told they could not go around doing this,I did not want to press charges. They were stopped, but they made sure their version of events were known around the school and there was nothing the school could do about this.

To say people avoided me after this is an understatement, this is the first time I have told anyone outside my close friends. I was embarrised to have fallen foul of this bullying and I was hurt and for some time could not do the school run and when I resumed I took the Car. sorry about the lenght of this but i did try and cut it down XXX

[Bananas5]

Sadly it isn't only chronic pain which is a 'hidden' disability. Many others including sensory loss, whilst not painful, can have an isolating effect and lack of understanding.

Joe Public only recognises a wheelchair or Guide Dog as 'symbols' of what you are - not who you are. You wear them like a label around your neck.

Often the public have a fear of the unknown and that is what you are - an unknown quantity. Look how many times the driver of a wheelchair gets asked How is he? Rather than ask the wheelchair user.

Hetting older too can make you remember the tomes you coul hop, slip amd jimp! The mind is willing but somehow the body finds better things to do with you time.

Pat x

[joe69]

Ye totally agree with those comments from you all....

Chronic Pain, it's a pain in the arse, to others but to us, it's our life, we have to live with it...

I also have a disability badge, on which when shopping in asda/tesco, yes, I get the looks, until the sticks come out the boot, then I kind of do the crab walk to get to customer services desk to get my wee shopping buggy, on which gives you even more looks from those pain in the arse folk.

One day this lady ages wi me, did ask what I had, I gave her a brief account. Now, we met again, she has now gone to her doc, got things sorted with herself, as she felt embarrassed due to her age. As I said she must of been 44 or there abouts. She didn't want to get alienated by others who don't understand.

I wish her well.

Joe

[johnsmith]

I recieve a great deal of support. I had to work for this though. The christian church's still provide a lot of support. The Buddhist organisations still provide a lot of support. The difference between the religious and the secular is that their is group interaction with those less fortunate.

As an ex-youth leader you should know what happened in 1986. In 1986 across the country the LEA youth club leaders were told that under no circumstances were they to speak to a child on their own. The voluntary youth clubs followed this example within a few years of 1986.

The younger generation were thus informed that that the older generation did not care about them. The wisdom of the older generation ceased to be past down to the younger. How many adults dare speak to a person younger than 18 on their own.

Previous to 1986 many areas of potential violence between one group and another group of youths could be prevented because of information gathered. After 1986 the channels of communication ceased. Hence the present issue of kids killing kids. You cannot expect a younger adult to understand an older adult if there has been no previous communication across the generations.

Sorry if this appears to be a little off topic, but this has relevance in the topic of the fractured society.

[Hidden in reply to johnsmith]

Hello

When I began Youth work in 1971 I passed the part time certificate at Durham.

Then I was given my own position within my own area, it was advised that we did not work in any of the youth centres we did our training in. The rules then, we had to be in twos if a child was to be talked to regarding, solitary incidents, even if family members were brought in to discuss the child

One thing we were told off record was many youth leaders became jaded and after training many would stop working in the youth club environment. After 4_6 years, that happened to me.

Earlier in life I worked as a cycle proficiency instructer even then we were generally supervised. So it happened much sooner than many think

[johnsmith]

Thanks for that. Where I was I had no problems with talking to a child one to one until 1986. I tutored children on a one to one until 2002. After that date it did not feel safe doing that.

I know about the jaded. In 1976 when I started I believed kids were reasonably trustworthy at the end of 1986 I did not trust any kid I spoke to. I had learnt a great deal of what you do not expect to happen, does happen. Having to grow eyes at the back of one's head takes a lot out of one.

I was speaking to a person the other day. The person was going up north. He asked to give a kid a lift. He discovered that another adult had to go with him. He was told that he needed the other adult in order to protect him from possible accusations.

[Hidden in reply to johnsmith]

Hello

When you look at the news I am glad to be out of it.

When doing Youth Work I had also passed for the Community work certificate so I also had too deal with adult night classes, so by the end of 1976 that was the end for me as I had had a serious car accident and was glad to get out of a system that was getting too complicated. Most of my trained work only lasted until September 1976.

So most of my time was voluntary.

All the best

BOB