Limited social life

[marti]

It has occured to me that I have really no life outside of my couch anymore. I have several autoimmune kinks and a few other miserable problems that cause a lot of pain and weird symptoms.

So, I never accept an invitation anymore. I go to my daughter's house only in daylight hours for a short time.

It's awful when you never know when some symptom or other is going to hit, but you know it will. And I just don't like being far from home for any length of time. I usually stay dressed in a loose fitting nightgown. More comfortable... no squeezing other than the HUG.

I go to work for about 2 hours four days a week now if I'm lucky. I CAN drive, but it's getting a little dicey.

I'm not complaining. I actually like being at home, quiet and comfortable. My husband has several health issues that keep him down too so it doesn't matter to him if we are hermits.

I try to keep company or visitors to a minimum with short stays.

My sister is 74 (11 years older than me) and that woman goes, goes, goes. She just had a knee replacement and is ready to go home and carry on. She works... full time! She really doesn't understand my solitude. Good thing she's 800 miles away! This would drive her nuts. She would absolutely wear me out.

And that's the thing. People don't realize that standing around talking for 10 minutes can wear us out! I'm just as guilty of this when I meet someone. I don't think about their particular problems. I guess it's human nature.

Well, sorry to go on. Just thought someone else might have these issues.

[suziq38]

I am so sorry!
I hope yo can figure out other things to do.
It is fine if you want to stay home, but get out every now and then.
You can meet a friend for lunch or a movie.

Get out and go on a trip.
I know that it is hard, but get a wheelchair for the long walks if you have to.
The idea is to do as many things as you can while you still can.
The couch will always be there waiting for you.
I just don't want the couch to be there for you prematurely.

IF you are able, start planning a few trips!
Quit sitting around waiting for life to stop moving.
I want you to be moving until you have to stop.

Also, it is O.K. to tell others that you have to sit down for a little while.

You do what you have to do.

Good Luck!

[CaroleL]

Marti, I know how you feel!

I've rarely left the house in years. When I do, it's for appointments. Now that I'm stuck upstairs, it's even worse.
My father visits for a few minutes about twice a week, and my sister occasionally. I have one friend and drops in every few nights for about an hour.

My dd comes over with the kids and I'm always on my bed, so we have picnics in bed.

I think we need to focus on the things we have instead of thinking about what's been taken away. Being mostly bedridden is my NEW NORMAL. Yet it may change, I still don't lose hope.

Through your local Community Care Access Centre, you can have volunteers go over just to keep you company.

The computer is also a great way to stay connected to people. I do a few crafts, crochet, crossword puzzles, these things are part of my new normal.

Your mental health is as important as your physical health. Get counseling if you need to.

Time flies when you're having fun...so try and have fun!

[marti]

Marti, I know how you feel!

I've rarely left the house in years. When I do, it's for appointments. Now that I'm stuck upstairs, it's even worse.
My father visits for a few minutes about twice a week, and my sister occasionally. I have one friend and drops in every few nights for about an hour.

My dd comes over with the kids and I'm always on my bed, so we have picnics in bed.

I think we need to focus on the things we have instead of thinking about what's been taken away. Being mostly bedridden is my NEW NORMAL. Yet it may change, I still don't lose hope.

Through your local Community Care Access Centre, you can have volunteers go over just to keep you company.

The computer is also a great way to stay connected to people. I do a few crafts, crochet, crossword puzzles, these things are part of my new normal.

Your mental health is as important as your physical health. Get counseling if you need to.

Time flies when you're having fun...so try and have fun!

Thanks Carol... but really, I don't need company. I'm perfectly content with the few visits I have. I do lots of puzzles and we watch tv. We do get out some. Today I drove myself to the city for my Echo (45 miles one way). And I worked this morning. That's plenty. I'm not bed-bound like you. What really bothers me is trying to go out to eat occasionally. With the IBS I never know when a mouthful will be too much or when the tummy trouble will start. But, my husband does still want to get out once in awhile. I prefer take-out or take-home.

[Tawanda]

Thanks Carol... but really, I don't need company. I'm perfectly content with the few visits I have. I do lots of puzzles and we watch tv. We do get out some. Today I drove myself to the city for my Echo (45 miles one way). And I worked this morning. That's plenty. I'm not bed-bound like you. What really bothers me is trying to go out to eat occasionally. With the IBS I never know when a mouthful will be too much or when the tummy trouble will start. But, my husband does still want to get out once in awhile. I prefer take-out or take-home.

I often have mixed feelings about socializing. Scientists will tell you that humans have a need to be social, but I say to each his own. I was not a social animal before M.S., so it's no surprise I don't mind being a semi-hermit now all that much.

[kebsa]

i definately have mixed feelings in this area- i was always content with my own company, i live alone with my little dog and did have great neighbours for the occasional chat, i worked one day per week and that was good. but my job ended and i had to move house. i have no family just my dog and i do fel more isolated- i worry sometimes if something happened to me and i could not use my emergency pendant i would be one of those people no one missed- and i worry about my dog in that situation

i would like to have more of a social life- not much, just the occasional outing and as such i have actually expressed my interest in a local government panel that wants to look at social inclusion for the disabled - it seems they have recognized that there are programs for the frail elderly and those with intellectual disabilities but very little for young to middle aged adults. i was interviewed to day as were other applicants with disabilities but would love to get involved with something like this.

i think sometimes i have just convinced i am ok being alone. when it came to work do's it always created problems in having to find somewhere that was wheelchair accessible for my large power chair so after a while i would just say they should pick a venue that was ok for them - we were made redundant and the good by dinner is something i would love to have gone to but it was in an upstairs venue with no elevator- they told the person who arranged it they had a hand cart they could use to drag a wheelchair - i double checked and it was the type of cart i thought it was - for a small person in a lightweight manual chair- not a large power chair that weighs around 110kg empty! accessibility laws are not as progressive here as in some countries especially if it involves an older building

so people stop asking because i can get to the venue they have picked but they do not realise accessibility is such an issue- they think i just do not want to go out- now i am not working and finances makes entertainment tough. i did find a local community group where they did art courses and that was good but now i have equipment issues that have caused a major increase in back pain and upset other health conditions besides the MS so i have had to cut that back - this week they declared that we had reached a record in high temperatures for march- 2 weeks in temps over 30 degrees and much of it 35 - 38 (37 is 100 farenheit) so i have been locked in the house basically!

i'm not the social butterfly and i do not want to be the token disabled person in the wheelchair in the corner while everyone is dancing but i would love the occasional trip for coffee or to the movies with people around my age group who also have chronic health issues- nice to be with you peers occasionally nor always feel like the odd one out

[DianeD]

enjoy being with people, but

I find it really tiring to try to be the hostess/entertainer so it's rare I do much of that. The shortcomings of my situation bear down on me at times; had a 70th B'day party for my DH. I really wanted to do this for him and planned a menu, cooked it all. Lots of work and heck there were only 9 people invited. Still I always say....2 people or twenty..it's all the same.

By the end of the evening I was having some GI problems and ended up spending a bit of time in the bathroom! Next day I was so tired, but it was fun. Most of the time I'm happy with a quiet life because the mental work it takes to entertain can exhaust me.

I guess what I'm saying is that I have had to adjust my expectations and utilize my energy in my best interest.

The things I miss most is doing things on the spur of the moment or going shopping all day!!! I like to travel too, but my experience has not been too good with that. Being out of one's environment is difficult.

The best thing to do is accept you may have some limitations, but if it's worth doing, give it a try.

Dianer

[Thinkimjob]

Hello. Spent the last two days in bed. Depressed, depressed, depressed.

Food, who needs it? Shower? Well, I'm not getting out of bed, so, you know, why bother?
Didn't even go for the couch. That would mean getting dressed. (Did make the odd trip to the bathroom. .)

Why the misery? (Okay today, I think.)

I went out to take photos at the opening of a new wing of the local nursing home. The place always depresses me, because my Nana died after 7 years there as a patient.

There were 70 people there. I've known most of them all my life, all in their 60s and 70s, all reasonably sprightly, as well as my childhood doctor, who was a bit taken aback.

I try very hard to downplay everything, but this time I just couldn't. When people asked, and they all I did, how I was, I started off with "not too bad" and finished with, "not very good".

It just hit home how sick I am, on top of the physical disabilities. I really do mean sick - exhausted, in pain, dizzy etc. It's partly the pity and the sympathy, but it's also the sheer bloody inescapable truth of it.

People were so nice, but I felt like that wildebeest who always gets eaten by the alligators crossing the river. The other wildebeest know which one is weakest.

Right, today I will have a shower, wash my hair, put on some underwear, get dressed and go down the street. Don't have to work today, thank The Lord.

[Tawanda]

i'm not the social butterfly and i do not want to be the token disabled person in the wheelchair in the corner while everyone is dancing but i would love the occasional trip for coffee or to the movies with people around my age group who also have chronic health issues- nice to be with you peers occasionally nor always feel like the odd one out

I feel exactly the same way! Too bad you live on the other side of the planet! The Internet is a wonderful way to connect, but at the same time, it's a tease!

[kebsa]

thanks twanda!
i love he fact that i can communicate with others in the same boat over the internet but thats an indication of just how isolated one can be- the fact that even this forum is based half a world away!i would just love to be able to arrange to go for coffee one day twanda but i think my days of travel are done now for a variety of reasons

an OT at Disability SA tried to get a group of 30 to 50yr olds with disabilities who had limited family around nd were at risk of becming socially isolated- and every now and then she will arrange a trip somewhere such as the movies or the botanical garden- and i was very keen at first but basically i was the only one who did not have some degree of intellectual disability- so many of the others had behavioural problems - and i do not want to sound judegmental and un caring but i started to become frustrated- the nurse side of me kept on having to creep out and then it was a graphic reminder of how the nurse side of me is in the past - i want to enjoy myself- i have made "friends with a couple of the other ladies but both are a little intellectually impaired so at best i feel like big sister, they are nice ladies and one i have known for about 15 yrs bt only small doses as it can be hard work . there must be others in there 30's to 50's in the same situation wheelchair dependant limited income a few medical issues including the MS that can make life a little unstable at times!

thats why i have expressed interest in this social inclusion panel at local government level. someone did say to me that when it comes to the MS one of the reasons groups do not work well other than on the inernet, is that people with less visible problems and perhaps more newly dx get scared when they see the more severely affected thinking that maybe that is their future- how do we get the message across that it does not work that way- MY chair precedes the MS and is for totally different reasons!