feeling lonely and afraid to go out sometimes with people

I have ms since 1997.  Thank God I am not in a wheelchair nor do I use a walker yet.  however I deal with alot of pain and I also have fibromyalgia and chronic fatigue syndrome.
Before I was diagnosed with ms I was a professional in the helping field and now I am afraid sometimes to go out and meet people.  i feel lonely and isolated and yet my self centered fear stops me from going.  I also have a difficult time still accepting my life and so I constantly think I should have a better life with more going on and more friends.  Its very depressing.  I  constantly think I should be doing more and more and more.  Does anyone relate?

[HVAC]

The trick is to adapt to what we have. Yes it can be depressing. I have had MS for 44 years but only found out it was MS a few years ago. I have had to adjust a lot. I got defeated when I was diagnosed. I knew I needed help and sought it out because I knew I was heading down a dark path.

I beat myself up because I can no longer work. I have always been stoic and self sufficient and now I need a lot of help. I do the best I can. I constantly adapt. I realize it is not easy for me. My body is betraying and there is not much I can do about that.

I have to distract myself especially with the pain or I will go nuts. I do not dwell on what I can't I think of what I can.

Taking up piano is a good start. I took up horseback riding. It is super painful but I do forget myself.

Alex

[Deb61]

I'm sure most people with MS can relate to the feeling of depression.  It is very common.  It can also be a very disabling problem in people with MS.  For me, it goes hand-in-hand with the amount of fatigue and pain I'm having.  Provigil really helps with both the fatigue and depression.  I cannot get the insurance to cover it anymore, though!  

Distraction is also a very good medicine, as Alex mentioned.  I love painting and playing the piano. It puts my mind completely off of how I'm feeling.  

Hopefully things improve for you, soon!  I hate that feeling of depression.  

Deb

[sllowe]

Hi there,

Thanks for joining us. Isolated is definitely a bad feeling. Deb and Alex said it best w/distractions, etc. and sometimes it just takes that 1st step.

With being a veteran MSer, have you any contact with your local MS chapter?

I'd like to know more of how you are doing if you are comfortable to tell. Are you on a disease modifier? If so, the pharm companies do offer a lot of dinners for newly dx'd. But, sometimes the topic brings veteran MSers...I'm just thinking out loud for a small out for you. One that wouldn't be too much, just step.

Hope to see you back on,
-Shell

[rifka59]

thank you so much for all your input.  I am on copaxone I tried avonex and betaseron but it made me very depressed.  What do others do during the day when you are home besides think I know theres reading and television.  I am relapsing remitting ms.  Currently in a flare-up however I am being treated for it.
Rebecca

[rifka59]

i am doing okay.  i am fortunate to be walking i am being treated with an infusion for the next three days.  What do you mean the ms chapter offer a lot of MSers?  

[sllowe]

Hi again,

I meant the your local chapter of the MS society. You can find it from the national site, and then click on "find a chapter."

http://www.nationalmssociety.org/index.aspx

You can give them a call - there is usually a phone or email contact.

There may be some things the local chapter has for MSers that you can volunteer for, especially since you are a veteran MSer. Newly diagnosed patients have a lot to learn, and you can help that since you've been living with it for 14 years.

I'm sorry you were unable to stay on meds, but glad you are doing ok and hope the relapse leaves you quickly.

Stick w/us in the meantime we're more than happy to be here for you and push you toward some nxt steps on finding something to make you feel good :)

-Shell

[HVAC]

You are doing great for where you are today. I am sorry things are tough.

I have had PPMS for 44 years. I know depression right well. My husband is having a bad spell and taking everything out on me and I was driving back from a MS support meeting last night thinking he would be a lot better off with out me. I have always taken care of myself even financially and things are changing. Then I thought "This to Shall Pass". I am going to another meeting this noon I have not been able to drive for some weeks. With a friend of 29 years. She is good at support. I have been lucky to have her all these years. Even if she is not available I know what she would say to me.

I hope you feel better soon. Keep the faith.

Alex



Yesterday was a bad day but I have a new day today.

[fortywhat2]

Hi...
I also have PPMS, fibromyalgia and some other issues and had to stop working in 2008... it can be very depressing and you are not alone in your thoughts!  We are here to try and help you thru you "dark" times!  I have days I don't want to go anywhere and sometimes I don't... other times I force myself to go and find when I get there it's just what I needed.  Fight yourself sometimes... it can be worth it!  We are here for you :)
Debbie
~live as if all your dreams came true~

[jujuminx]

So sorry you are struggling with loneliness and isolation.  Don't be so hard on youself.  We all go through phases like this, the key is not to get stuck in it.

Start with baby steps.  Make an effort to reach out to people that you come into contact every week, like people at the grocery or bank. I once stood for 15 minutes talking to a man in front of the grocery as we were waiting for the rain to die down before heading to our cars. We were marveling about the power of nature.

Make conversation with random people. It really is amazing just how many people there are out there that are just looking for some sort of human connection with someone else. Sometimes we help ourselves by helping others. So, if it makes it easier, seek out people who look like they could use interacting with.

Sometimes we just have to do things and the good feelings that come from it are the bonus.

Hang in there and keep reaching out just like you have done here.

Julie

[rifka59]

thank you so much for all your input.  You are all so kind.  I will look into the local MS Chapter and see if there is anything that I can volunteer for.  I am receiving methylprednisone for the following two days after one day of medicine already.  I think that does add to my feelings of depression and isolation.  However I am grateful I am able to receive the medicine. I feel as if I need to start helping others.  I was a social worker for a long time and old habits die hard.  Thank you again.
Rebecca

[Ufrustrated2]

i can so relate.

this change in lifestyle and sometimes friends, is a bit of a hurdle to say the least.

getting into MS support groups has helped me a lot and i took up the guitar and cur off my cable TV -- i watch movies though from the Internet. no BS commercials, no BS news.

everyone else here has given solid experienced advice. you'll get there. be good to yourself, this is one crazy up/down disease, isn't it? ;-)

[HVAC]

Every chapter of the NMSS is different. Ours is very strong. We have all kinds of opportunities to volunteer on all levels. Speakers, phone peer counselors to talk to the newly diagnosed, Support group leaders, advocates (both in person, and to call and write e-mails, photographers, helping in the office, you name it. I am an advocate I go to the legislature and to talk to federal representatives, and I write on a State wide political blog. I had never done anything like this before.

Do I know depression yes very well. I have been through every treatment except ECT which was suggested and I refused. Depression is an awful thing. For me it is inertia a body at rest tends to stay at rest a body in motion tends to stay in motion. It is like clouded glasses.  I believe my MS causes my depression by the damage in my brain and there is the secondary depression from having this crummy disease.

Alex