Where To Start

[imlistening]

Hi All,

I have had MS for about 8 years now, and have never really reached out to anyone for help or support. At this point, I am so beyond being overwhelmed. I was pretty well functioning until about a year and a half ago. I was then hospitalized for almost complete paralysis in my legs. I can now only barely manage to walk with a cane. I also have chronic severe pain, severe fatigue, etc. I am still pretty young (in my early 30s), and have had to give up working, and so many other social things that I once did.

My friends have stopped contacting me (despite my efforts to stay in contact with them), my family has become extremely distant, and my husband (married less than 2 years) seems to be wanting out. In some strange way they seem disappointed with me, or upset with me. I am so very lost, and hoping to find some kind of meaning in all of this. I guess I just really need some support right now, and some motivation on how to find a new and different way through this world. Thanks for any and all responses to this.

[loopey]

This is the place to find support and love. I honestly don't understand how people can behave the way they do when someone they were close to gets sick. Since I can't understand it I don't try to make them understand me or my illness. It usually results in frustration. I know that no one truly understands except those who also have this terrible disease.

I am sorry you are going through this right now. I hope the future holds stronger friendships and understanding.

[Thinkimjob]

Hello. I don't really have any words of wisdom to help. Someone here probably will, though. I'm so sorry all of this is happening to you. Here's hoping there are better days ahead.

I do understand about the suddenly distant friends. It has something to do with conditions like MS, where you're not going to get better, and it's never over. People find it hard to cope.

After I had my cerebral haemorrhage, letters, cards, phone calls, flowers, because I survived and I recovered. Mum and her breast cancer, same thing. Surrounded by supportive people. And it makes a big difference to your morale.

MS, no-one knows what to say, especially when they can see you're going downhill. And when it's invisible, you try so hard to hide it, people usually don't realise how bad you feel.

[Temagami]

I´m guessing that folks see your distress and emotionally cannot handle it- either b/c they think there but for the grace of God go I or because they are so personally uncomfortable and they allow their discomfort to outweigh your need for support- emotional and logistical.

Humans are weak or they are strong- you have been forced to be strong by a matter of circumstance.

I would try going to counseling with your spouse- with a counselor who has dealt with chronic illness. The pain of divorce is deep and scarring and causes more physical harm so if you can head that off, give it a try.

MS cannot steal the essence of you nor your sense of humor. If your arms and hands are still in good shape- can you express yourself through music or art?