Help: I dont know,just got back from... - My MSAA Community

My MSAA Community

6,822 members16,670 posts


luvhair profile image

I dont know,just got back from therapist,,i know how horrible my life is,i would love to be just tired,,its easy for someone else to say you need to get out bounce back meet people etc,i was very social,,very good hairstylist, i miss my life friends and family, my fatigue my cognitive issues have really made me very un happy,it horrible being alone fighting this ,idk how to bounce back from this when most days takes everything ive got to just function..not only am i fighting jcv..chrohns,colitis, bladder disease idk how to bounce back ,cant take ms meds inregards to just sad ,i know my life cant go back but its so easy for a non msr to say bounce back meet people i wanna know how,i have no more family support or friends anymore i just dont know😥

24 Replies

I’m so sorry to hear how things are going for you.

I know how you feel about not being able to do what you once loved doing. I had to give up practicing law. It was the only thing I ever wanted to do from childhood. My entire career was in the field. I’m license in several courts I’m a certified arbitrator and mediator. I was the go to person when it came to research and brief writing.

Then out of no where here is MS who took that away from me. Then I lost friends and I was trapped in the house.

When it came to family I pulled away from them because I felt like I was a burden when everything started happening and I had to deal with my mother in the beginning as I have told that story on here.

I’m not sure what snapped me out of that feeling but I got myself a caregiver. I signed up for pace which is ada transportation. I would see in the MS magazine about different exercise groups so I joined that to get out the house.

I realized my skills as attorney I could still research but it wouldn’t be for law but on MS for myself and I’ve shared on here what I’ve found out .

I go to pt just to see people as well My pt likes to tell me I know more about the exercises and I can do it on my own but this my way of getting out the house.

The thing I learned about pt is that each provider/ facility does it differently.

As for my family my mother has come to her common senses and my sister told me I wasn’t a burden.

I know this is long but I hope this helps you and let’s you know that everyone has gone through something close to what you’re going through and it will be a challenge everyday

luvhair profile image
luvhair in reply to rjoneslaw

Thank you..i was trying the pt every time i go i would be sick for days,,i like the swimming but im now havn reactions allergic to chemicals,plus everytime i went the routine was the same i just was bored out of my mind😥..a caregiver wht do they help you with and does insurance help pay for any of tht im on medicaid n medicare..ive startted painting things on wood seems the acrylic does hv fumes so cant do it for any length of time..just so sad ,so alone.

rjoneslaw profile image
rjoneslaw in reply to luvhair

They can clean, cook, take you where you need to go. You can get one through your insurance, the dept of human services, dept of aging , your dr can help with getting one as well.

As for finding something that doesn’t make you ill ask your dr to help you find something.

Does your insurance provide you with a care coordinator? I have one, what they do they help you with a care plan and help push things through your insurance. When I’ve had an issue and I’ve called my insurance the 1st thing they ask me did you talk to your care coordinator?

luvhair profile image
luvhair in reply to rjoneslaw

Ok ty

recently I went trough a huge depression because of being alone. I have no one either and it can be very depressing. I don't have an answer. I spend a lot of time here reading different posts and such. This community has become my "social" outlet. You just have to find something, a reason to stay strong and keep going. Some days I stay in bed all day and watch movies. I feel for you as I care for me.

I know me also..

long, but a wonderful post. I went through a similar events of losing everything at the same time. rjoneslaw

I know.

IFwczs profile image
IFwczs in reply to rjoneslaw

rjoneslaw, I am so sorry to hear about this turn of events. Your career path explains the eloquence of your posts. I am in the legal field myself (but not an attorney). I don't know anything about your MS progression or other circumstances including location, so I apologize in advance for my question. I was wondering if you have explored the remote work possibilities. It sounds like you have a lot to offer and too much talent and experience to leave unused.

rjoneslaw profile image
rjoneslaw in reply to IFwczs

I have rrms. My progression isn’t to the point where I can’t completely function. My neurologist told me it was time to stop working.

I function well in the morning but at around 1pm I start to tire due to the meds and stress is not my friend

I’m in Chicago and the area of law I specialize in doesn’t really cross over to other fields where I can hit the ground running. I would almost start at the bottom

IFwczs profile image
IFwczs in reply to rjoneslaw

I am a paralegal in Chicago.

luvhair profile image
luvhair in reply to rjoneslaw

Same here

luvhair profile image
luvhair in reply to IFwczs

There isnt much i can do ..get fatigue very easy and my anxiety just gets outta hand . Im havn lots of issues being able to leave my gets crazy if to long on pc..its just impossible to work i dont my day from day if i can move around or not..its a very hard case for me. Im fighting hard but i have 5 automine disease s im fighting ms n jvc the worst..but i pray for a miraclr everday

some cities have senior center with many activities. I have one in my city, I just haven't gone down there yet. It is an idea to help with socializing.

I just ran across this article from a daily email I get. multiplesclerosisnewstoday.... I thought it might be of interest to you.

Sending u lotsa hugs 🤗 🤗🤗

luvhair profile image
luvhair in reply to erash

Thank you

luvhair As you see from the many replies to your post, we are here, we do understand. There are many good ideas in the responses; you may be able to investigate some of them. Keep us posted on what works, what doesn't. It often takes more time to find a niche which feels welcoming and right, but I am sure there is one to fit your needs. If you have transportation, perhaps you could offer your hairdressing skills as a volunteer or through a care service for pay. Right now, for instance, I would love to be able to find someone to give me a haircut. I haven't had one since August...and with your knowledge, you know what that means! Giving an occasional haircut might utilize your skill and talent in ways that doing it full time wouldn't

luvhair profile image
luvhair in reply to goatgal

I wish i could do a few hcts here n there its against law here n nebr. I did try n do a few people at home..this is private site so i can say this,,but yea i kept my chair but it was just to much..since i moved my chair is stored n sons i havent tried any haircuts for a few years ..i need tob though

goatgal profile image
goatgal in reply to luvhair

luvhair When I was in rehab for 6 weeks, I learned that they had a room there which is designated as a handicapped accessible salon. A licensed hairdresser would come in for half a day each week and take care of those who needed haircuts, etc. on a first come first serve basis. She was not a volunteer; this was a paid service. I didn't use the service, but many of the permanent residents did...and it made a great difference in their outlook (to say nothing of their appearance). Laws in my state are the same as in NEB, to use a service I must go to a salon...and until I can do so, I am a good candidate for a Disney remake of the shaggy dog.

luvhair profile image
luvhair in reply to goatgal

Ok thankyou

I'm sorry things are not going well for you. I've never met you luvhair, but I can tell you are a caring person and we at MS Health unlocked are all your friends.


luvhair profile image
luvhair in reply to lbenmaor

Thank you i know i vent alot im tryin be more pisitive just so hard.

lbenmaor profile image
lbenmaor in reply to luvhair

I understand.

You may also like...