Isolatiing: was Being Alone With Pain

[Guest guest]

I'm Annie and have also just joined. Ted, you are so right. Trying to bear

something alone must make pain increase. Our emotions and bodies are wired in

together. I am more or less housebound - I can walk outside a bit, but we are on

roads of houses at the top of a hill, at least a third of a mile from our

village centre and shops. I hardly see anyone up here.

How little things like that make a difference. If we lived down there on the

flat I would have seen lots of people every time I went out. And I could shop. I

don't travel in a car because sitting is very painful. I am stuck walking around

my house and doing what I can standing up before then lying down for a rest.

It's not the life I wanted at all.

I retreated into myself and only see family and one close friend. I know this is

a huge problem, but I find it excruciatingly hard to tell people about my

situation. I hate the labels housebound and disabled.

Ted, your piece rang so many bells. After ten years of chronic back pain and

disability I usually hate it when people ask how I am. Often if I told the truth

I feel others would not know what to do with that information. " sometimes I wake

up in the morning wishing I hadn't " or " the future seems so bleak I think death

might be a happier option " or " at times my life seems to have slipped completely

out of my control and I am terrified of the future. "

If I say it out loud it becomes more real. If I avoid saying it I can deny it is

happening. I prefer to take one day at a time. My husband has stuck by me like a

rock, but he still has no idea what to say when I am low.

He knew I had suicidal thoughts when this whole thing started years ago and I

had a full breakdown. I'm sure he doesn't know I still have them every so often.

No way could I confide that to my children (20 and 17) or other close family. My

GP knows - but she is pretty useless - and an alternative therapist I see. I

worry that by sheltering others from the truth I condemn myself to the isolation

you describe. But what is the alternative? I have a drawer full of notes and

scribblings upstairs where I do write honestly. Maybe one day someone else will

read them. I hope not.

Even the medical profession don't often get it right. How many times have they

just said oh no you can't do that, it will ruin your childrens' lives for ever.

When what I want is for someone to say how awful that must be for me to have to

wrestle with such distressing thoughts.

Ted wrote:

> I have seen it mentioned a few times that many people here feel alone with

> their experience of chronic pain. I too have felt this and sometimes wonder

> if the feelings of isolation and not being believed contribute to the pain.

[Guest guest]

Annie,

It is terribly awful to have to wrestle with such distressing thoughts. But

please tell your husband. He sounds like such a sweetheart. Do not shut

him out of your life. He dealt with you having suicidal thoughts earlier

and he will be able to handle it now.

Recently I have been struggling with the same thoughts about my life not

being what anyone would ever have wished. A change in my antidepressant and

talking with a good therapist has really helped. I still have not solved

the how or if I can make my life any better. But I am feeling better.

Do you have a community mental health group that will be able to get you

hooked up with a reasonably good therapist on a sliding cost?

It is hard to explain our health and pain issues to other people. I am of

the opinion that most people really do not need to know about my health

situation. They do not tell me theirs, why should I tell them mine.

Instead of going into any of the details, I tell them that I am doing okay.

I tell them that I have to have rest breaks. Sitting for a long time hurts

me too. I cannot be around sick people since my immune system is not

performing well.But I keep it at that kind of level. It seems to be working

okay for me. I am transitioning away from feeling housebound. People have

been more accepting of my very brief explanations than I thought they would.

I am also of the opinion that there are very dear people in our lives who

should know about everything. My husband is one of them. He often goes to

the doctor appointments with me. He reviews test results. And I tell him

most everything. I have a couple of friends who get almost that much

information, too. So please do not shelter everyone from the truth! Find

someone you can share with. This group is great for that. It also sounds

like your husband and possibly your friend might be good choices to share

your thoughts.

Hang in there Annie. You are not alone.