I have ms for the past 10 years but was only diagnosed in 2011 after a lumber puncture. I have secondary progressive ms and I have gradually become more disabled. I had to give up work few years ago and am not able to drive anymore. I only get out of the house when I am taken by my husband or my son but they are busy and not always able to entertain me. I am happy to be at home (its easier) and that is my problem. I have become very reclusive dont even bother to ring people anymore. I am on fb and that is really the sum of my contact with the outside world. I just dont want to face people, I know I am hiding in the house as I just dont want people who knew me to see me as I am now. I know I shouldnt care what people think but i do - i cant help feeling embarassed sometimes humiliated. I am writing this now and have never been so honest about it before!! Is it just me or does anyone else feel like that?
Hi carls, it is so easy to lock yourself away, but harder to make yourself get out there and mix. I have felt the much the same as you and find it very easy to stay in doors, comfortable in my own space and don’t have to justify myself to,anyone. But the draw back with this is the less you go out and mix, the less you asked to go. Have you considered a MS group local to your area, where hopefully most people will understand and you can chat and realise you are no alone. Being in a family I have found can also be a lonely place! Take care of yourself and good luck
Hi Carls, I can understand how you feel, it’s very easy to become a bit reclusive. I tend to be a little bit like that myself although I have a wonderful husband who also cares for me. I’ve always enjoyed my own company & with hobbies, I’m quite happy being indoors…but I sometimes forget that my husband misses the time we used to spend going out together. Like you, I feel it’s sometimes really not worth the effort, with everything that involves. I’m SP, like you.
I try to remember that it’s not just us affected by MS, family & friends can sometimes feel pushed away by the way we behave & don’t know what to say. As you’ve said, it’s easier to let people drift away…Do you have an MS centre near you? You would be welcomed if you could just take the first step Are there things you & your family could do together? Maybe the cinema, or out for a meal?
You have to make a tremendous effort to start finding something to do away from the house, could you meet up with a friend maybe? I understand you’re embarassed about how you are now, but nobody else would see you like that…you’re probably thinking you’re worse than you actually are because you’ve lost confidence in yourself…that happens so easily.
Keep chatting on here, there’s usually people about who understand exactly what you’re feeling.
Thank you billpat1 for taking the time to read & reply to my post. I know my local group as I used to attend there about 3 yrs ago. I havent been there since as i just cant seem to get myself motivated. I know its a new year and it should be a new me. I promised myself id be more positive this year but it hasnt happened for me…
Thank you so much for your kindness Rosina and everything you say is so right but god its hard. Am reading your replies in floods of tears. Its just so touching to be honest and receive such compassion in return.
Im getting a bit like that myself. I work part time but on my days off I hardly go out at all unless I get a lift from someone. I am SP too.
I used to want to go out but the more I stay indoors the more I can’t be bothered. I do sometimes go out to lunch more for my husbands sake. I have noticed if I do make the effort to go out I usually feel a bit better.
The problem is I don’t drive anymore and because of balance and bladder issues won’t use the bus and taxis are expensive.
I keep saying I must make more effort.
Thanks Mags - sounds so like me - feel that I have lost my confidence, meeting people is difficult for me as I am always imagening whats in their minds. Am more confident when sitting but meeting people when I am standing or having to walk in front of them just makes me cringe.
Aww, I didn’t mean to make you sad Carls but you’ve already taken the first step by chatting about your feelings on here. I usually find a good rant starts to make me feel better! Just take things slowly, one thing at a time until your self confidence starts to feel better.
Wise words, Rosina. I will try to remember them. My natural inclination is only to leave the house voluntarily if it is on fire, but that’s the kind of thinking that a person should not leave unexamined, for the good reasons you give. Thank you!
Just remember we are all entitled to feel fed up and p***ed off at some point. I think it’s just learning that it’s ok and we will get through the other side at some point. Just be kind to yourself and don’t put too much pressure on yourself.
Hi all, yesterday I was feeling very sorry for myself and thanks to all your help today I am feeling brighter. The sun is shining in the window and a little sunshine always helps. Its been so good for me to hear that there are people who feel the same if not similar!! I thought it was just me and that I was turning weird. I see now how hard it is for everyone with ms regardless of what type of ms you have. Billpat1 said and its very true that if you stop mixing you stop being asked. People have stopped asking me, its partly my own fault I guess but I think its also that my needs have to be considered and that just makes it too difficult for people and I totally get that. The problem is that it husband also suffers and its not fair to him! This is my first time going on this forum and it really has helped. I think I will be a regular visitor from now on!
You have been so brave & honest!
You’ve echo’ed My feelings so well. I have never felt so lonely & isolated. I know I have to do something about it too.
There doesn’t seem to be anything in My area(Braintree) I did try the local MS group last year. However it wasn’t what I had hoped(ended up feeling worse)
I’ve really lost My confidence. Haven’t even been on here for a year. Only ever able to get on temporarily. Then locked out.
Would love this year to make new friends. Perhaps we can help each other.
Chin up, & well done!
Oh thank you Linda - it would be so nice to have new friends - maybe as you said we can help each other - regaining self confidence would be a dream come true!
Oh wow polar bear - so good to hear from you too. I am just overwhelmed by the responses from people - I had given up on mankind, felt that good kind people no longer existed, my fair weather friends and some family members can take a hike, from now on I want real people in my life. I look foward to hearing from you!
Oh Polar Bear that would be great!
For so long I have wondered how to set up a closed FB account. Haven’t wanted to mix the two. Mainly to protect My family.
I haven’t felt this excited to talk to people, for as long as I can remember. “silly aren’t I” In fact I’m feeling so inspired. I’ve just inquired about becoming aVolunteer. If this little communication makes me feel so good. Maybe it could help others.
Look forward to your PM
Could I have the fb page too polar bear , life would be easier if we all lived near xx
I’m beginning to feel this way about my friends and family as well, I seem to be out of sight out of mind at the moment!
This forum has been a big help though, just knowing others are going what your going through helps a lot.
On Facebook I belong to Essex Ladies with MS, Women with MS and PPMS, all closed groups and all excellent!
I dont understand how the closed group works - have joined and posted something. I then went to my own fb and saw the post had appeared there also. I deleted it as i dont want others to see it like family etc. Can someone explain how to do that?
Thanks Cherrylips for your comment - i know exactly where you are coming from, its hard feeling left out. This forum has been wonderful for me, really lifted my spirits just knowing that I was not alone…