AnonymousAugust 17, 2008 at 9:01 pm
I have an odd question have any of you felt a little or I should say in my case a lot less social since you became ill? I use to feel comfortable around others and did not have trouble meeting new people who ever since I got sick I found myself anti-social any suggestion? I know its an odd question but I feel different and I can’t figure out why! I’m trying to figure out how to be my old self again! :confused: :confused: :confused:
AnonymousAugust 17, 2008 at 9:36 pm
Hi Tammie, your question is a good one. I know exactly how you feel. How do I explain my condition/syndrom to family and friends (let alone strangers)when I don’t even understand it? I do find that I avoid people sometimes. I am more comfortable alone. But you have to get out there and try. I know it’s frustrating. Just today I was with my dad and I was complaining that I can’t walk on grass very well or walk up or down a small hill in his yard, we had to hold hands and walk around it. He said “Denise, look at where you were a year ago. You were just out of the hospital. You’ve come so far.” “Yeah, I know, but I’m working so hard to get back to the old me and I’m not me.” I may never get back to being the old me but I’m working at it. Tammie, Don’t give up. And remember you are not alone.
Best Wishes, Denise
AnonymousAugust 17, 2008 at 11:31 pm
Boy – that’s a good one. I would say that my social life has been overall the biggest loss since I have been ill.
I wasn’t a huge party girl, but I liked to go out from time to time. I also liked to entertain – dinner parties, bbqs, etc.
Now, I don’t drink, I find it hard to stay up late, and the physical and mental effort of planning and having a bbq or dinner party seems overwhelming most of the time. Cause it isn’t just the getting ready; it’s the event itself you have to get through! Drinks after work – I am exhausted by then, so all I want to do is go home!
My social life has shrunk to just the few people that I feel comfortable around (i.e. no explanations necessary). btw, my parents and family live in North America, so don’t see them too much!
We get invites, we accept them – then hubby mostly goes alone. I can’t face it. I do go from time to time, but it is a major effort.
I do think that I need to be better at this, but I don’t know where to start. It does seem too hard.
So – it isn’t an odd question – I think yuo will find lots of people have this type of issue to varying degrees!
Any advice gratefully accepted.
AnonymousAugust 17, 2008 at 11:44 pm
And I thought it was just me! After I had GBS 25 years ago, I too couldn’t keep up and so a lot of my friends drifted away. Then I went to work and as Debs said byt he time I got home and looked after my kids I was too tired to do anything else.
Today, I only have a few select friends. I pick and choose what I can do and have learned to like solitude. It is often easier. I have things I like to do like reading, knitting, sudoku, and I fill lots of time with that.
I have often thought that being in ICU and hospitalized for so long was why I felt the way I did. Part of it was the solitude and not being able to commuicate due to the respirator and the other part was having people I didn’t know in my personal space on a daily basis. (Sharing a hospital room, nursing care, etc.)
I am happy with how my life has turned out for the most part. The friends I do have are good ones that I can count on. I have learned to appreciate what I do have and I hope the same happens for you. Each of us is different so hang in there, choose a few people you really enjoy and who understand and build your social life around that.
AnonymousAugust 18, 2008 at 5:49 am
When I first got sick my life totally changed alot. Was a very active person. Always doing something. I would say my social life has changed alot. I can’t drive much so don’t go out much. Am to sick to invite friends over and entertain. Never can make plans and everything has to be on the spur of the moment when I am feeling good. Makes me feel like I am being a hermit! But I have learned to keep my mind busy doing things like reading, crafting, mild gardening. I do talk on the phone alot. That keeps my mind busy! But sickness of any kind that’s chronic or severe can change a persons life quickly. Making it hard at first mentally to adjust too! It’s like you have to find your soul but in a different place!
AnonymousAugust 18, 2008 at 12:47 pm
I agree with all the above post but when I was ill I had double vision and it was hard to focus on each person that was talking. My head was running in high gear also and over stimulated. The body was paralized and the brain was spinning! The rapid onset of fatigue also did not help. Movement and sound was very over stimulating…..I could feel myself just crawling back into my head and listening to the conversation from a far place. Like a mouse in the corner. Sudden loud laughs and sounds would make me jerk away after I was able to move. Now that sensitivity has gone away I am able to enjoy being with groups of people too……Sad that I lost 5 very close friends since 2001. It is sad that you miss the good ole days but it is now fun to make new friends that I have more in common with. My interests have changed like my friends. The best friends are still around! Now that I am doing better I am the one that seeks them out and calls a girls day out!
AnonymousAugust 18, 2008 at 12:58 pm
I was doing some reading on residuals of GBS this morning and on the site I was on they talk about this and how/why so many of us experience it. They talk about our withdrawal as part of depression around the illness and it’s impact as well as PTSD for some of us, especially if we were on life support, or hospitalized for a long period of time. You may be interested in reading some of the stuff posted there.
The site is:
Once you have read some of this, try googling psychosocial issues and GBS. I am going to try it and see what I get.
AnonymousAugust 18, 2008 at 10:27 pm
My life has certainly shrunk in terms of activities and social interactions since GBS. In a very real sense that has been one of the gifts of getting sick. Our culture puts such emphasis on extraversion, and doing, accomplishing and being “out there” that we loose sight of the gifts of solitude and introversion. I have lost a lot in terms of the world but gained a lot in terms of my spiritual life. It is hard to explain but I find great peace now in being with myself and in focusing on the things I love-family, reading, sudoku and meditation. Once you get over the guilt of not meeting others expectations there is a lot to be said for find yourself and what is really important in life. Jeff
AnonymousAugust 20, 2008 at 6:37 pm
You are not alone… I think that is why this forum is so popular and so many of us have come here for years. I’ve been in therapy lately and to a psychriast (sp?) to get good antidepressants that DO NOT affect fatigue. Also I am 50 and single and probably too emotionally dependent on my cat. Poor kitty to have to put up with me, but he knows I love him.
I must say that even with my therapist, it is hard to communicate my isolation. I used to be a rather social person and loved to dance to live music. Now I only go out maybe once a week. I find that if I go to something like an outdoor concert or baseball game, I really have to plan ahead on either being able to park close or have a friend that understands to drop me off at the front door.
Sorry I am not more positive for you as I am not real “up” at the moment. I have learned here that there is not an odd question. This is a very serious mental state we have to take care of. Just keep venting here whenever you need to! You will soon find many others are in the same position as you.
AnonymousAugust 21, 2008 at 6:53 am
Hmm! Maybe that is why I have 10 cats lurking around my homefront. LOL! We have a building in our backyard for them and it is heated and air conditioned with all their toys along with a screened in porch. But we keep two in the house at all times. Every week we grab two and bring them in and give them special attention. So they all get to come in the house and be our loving pets. My husband goes out every morning and drinks his coffee and plays with them and I will go out once a day to play with them. Then my husband comes home from work and visits them again. But in the house the two inside get all day attention. All were abondoned kittens that needed special attention. They are my babies. Think they are human and act it too! I have them toilet trained too which is great. No more litter boxes to clean! I keep sanitizer in my toilet and flush several times a day! No more nasty cat litter smells or cat litter spills on the floors.
One of my cats used to jump in that litter box and whe she does she has to dig and sling the mess everywhere. Can’t just jump in the box and go mildly. She throws the stuff everywhere. Miss Messy!
AnonymousAugust 21, 2008 at 9:33 am
Great question. I have always been a very busy upbeat person. When I first got sick many of my friends took turns spending time with me in the hospital and even when I got home. And as time has passed slowly they all have dwindled away & now I am home alone most days.
Now don’t get me wrong I have a few wonderful true friends that still come and haul me around for trips to Wal-Mart or out to dinner etc. (I don’t drive)
Hubby bought a Harley in March before I got sick in April. This is my biggest upset. I LOVE to ride BUT there is so much vibration & I can’t see my feet so it is very hard for me to keep my feet on the foot platforms. He changed to pegs to a larger platform for my feet. My lack of core balance has a trendency to through his balance off. So I just don’t ride much. He rides to work & back but doesn’t ride alot either because I can’t ride with him so I feel quilty.
Don’t get me wrong I have a great family and great friends but my social life has changed drasticlly(sp). Thats why I’m so glad & thankful for this wed site.
Oh! without the drugs I would definitely be crazy! lol:p
Hugs to all.
AnonymousAugust 21, 2008 at 3:39 pm
Cathy you described exactly what happened to me. Same situation! They were all visiting me in the hospital and my home to suddenly dwindle away. Only a few around now that do every now and then pay me a visit or call.
It’s weird too! Since I lost that group of friend, gained other ones that were caring. Taking me places and helping me out at times. But where I live I am in the country out in the fields of nowhere and barely see a soul! 😀 But you described it to a T!
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