What percentage of us still working?

[Mamabug]

I've been fortunate, because, other than the emotional adjustment to not working, being on SSDI has not been a hardship for me in other ways (ie: financial). My monthly check is similar to what I was earning, working part time, when I quit working. (Although, in the past, I earned more.)

Also, we purchase health insurance through my husband's employer for both of us. As of last month, I also qualify for Medicare. However, I do not plan to drop my other health insurance, because I think it's as good (or better) a deal as what I'd likely be able to find by purchasing Medicare Part B and D and a supplement to fill donut holes.

~ Faith

I had my first MS flares in 2002. They were serious enough that I was in and out of the ER and the hospital, on PT and OT, had some extreme memory problems (I don't remember April and May of that year), slept 16-20 hours a day for several months, etc. In short, I was off work for 8 months during that year (lost one job during that time, after I ran out of FMLA time).

A big part of the problem was that, at that time, I was un-dx and untreated (no steroids, no MS meds, etc.). Once I started on steroids, I began to recover slowly, and was eventually able to go back to work.

I worked for about 5 1/2 years, following that. However, due to more flares and running out of sick leave repeatedly, I lost 2 more jobs during those years.

After the 3rd job loss, I began to realize that, maybe I was no longer very employable. The 3rd job loss followed a flare that also left me with more fatigue than I'd experienced in the past. I, then (and now), required 2 naps a day, which isn't real conducive to working. Stamina is also very low. I can't do much physical labor of any type.

I have worked several PT jobs since then, with limited hours. And, I do some volunteering most days of the week. I'd consider something part time if I could find something suitable. But, I've recently passed the 6-month mark for my LTD (long term disability), and am now considered on LTD until I turn 65, or whatever (almost 20 years). Unless I return to work.

And, I cringe whenever I have to fill out work forms for SSDI. So, maybe it's just simpler not to work. Although I can't see how it would put any benefits in jeopardy, since I could only work so few hours, and earn so little money anyways. But, somehow, those things still stress me.

~ Faith

[gypsy]

Oh man. This is where I'm struggling right now. My diagnosis has only came six months ago and I feel like the MS bomb has dropped directly on me. I am absolutely drained. My job has me on my feet 90% of the time. I have weakness and tremors in my legs, parasthesia in both hands, lhermittes, and not to mention I fell 3 months ago and broke my ankle. It needed to be repaired surgically. I've been on leave from work since then. I would love to go back to work,but I honestly dont know if I can physically maintain it anymore. I've already started to check into SSI. I'm so scared. I'm only 32 and I dont know what I would do with the rest of my life. I have 3 kids that wouldnt mind having a stay at home mom, but most days thats just as tiresome. I dont know what to do. How does one decide that they cant work anymore?

[KoKo]

Gypsy

Oh man. This is where I'm struggling right now. My diagnosis has only came six months ago and I feel like the MS bomb has dropped directly on me. I am absolutely drained. My job has me on my feet 90% of the time. I have weakness and tremors in my legs, parasthesia in both hands, lhermittes, and not to mention I fell 3 months ago and broke my ankle. It needed to be repaired surgically.

Sorry to learn that the MS bomb has made a direct hit on you.

I worked for as long as I could, and when it was time to leave, I knew it. My first indication was having some of the similar issues you are having.

I had neuromuscular fatigue, balance issues, several falls at work, (broke my foot and had to be off for awhile), loss of muscle strength, and totally drained.

My job gave me accommodations by letting me work a light duty job. After a couple years of that, 8 hours just became too much. One day when I struggled with walking to my car at the end of my shift, I knew I couldn't work one more day.

My doctors had been encouraging me a few years prior to start checking into SSDI, but like everyone else, I wanted to keep working.

Anyways, I'm getting along ok on SSDI, and was approved on first try.

Is your MS RRMS? Just wondering if you may recover from your symptoms? I have PPMS, and nothing ever got better, or went away either.

In any case, if the struggles you have described are here to stay, and you're starting to wonder about your ability to do your job, then maybe it is time to think about retiring.

Our gut instinct is usually pretty accurate! For me, I had no doubt when it was time to go.

Best of luck to you with your decision.

Take care,
KoKo

[drgnlny]

This Hits Home...

An excellent question - one I have been wondering, too.

I was dx July 2003, but had w/o a doubt a relapse a year prior that left perm nerve damage/pain in left wrist/hand. When I was dx my doctor said based on history, I may have had MS sinc 1994. But it wasn't until 2002 when I really first had any real noticeable and lasting problems.

I continued to work full time as a project mgr and even went on to manage a very high pressure, high profile State project that lasted for several months working up to 60+hrs a week. I eventually had to give up things like skiing, skating, dancing, long walks, regular excercise, my two motorcycles, etc. But work seemed to be the last thing I could still do - and excel at, even! It was my saving grace for many years.

But in 2008 that changed, too. After several weeks out on STD (after completing that several month project); when I came back it was as a full time telecommuter. That worked well for awhile. It was very flexible.

Then in 2009 I was out again on STD for several weeks. This time, I came back and was struggling even with working at home and having a very flexible schedule. The kind of assignments I took on were like elementary and yet, I struggled with that, too. Soon, I wasn't doing much at all but sleeping when I wasn't trying to work. I couldn't. Then, I was finding I could not work a full day, then not even a half day and soon wasn't even able to get in two hours. I was in bed and sleeping constantly. My life was unraveling but I kept holding onto working. I need my job, I need my healthcare!

As of June this year, I had no choice but to go on STD. I wasn't able to work or produce anything and it wasn't something I was going to recover from and then quickly make up all the work I'd missed. I've been out since and I've been scared as hell as to what this means for my future.

What will I do? What will happen to everything I've worked so hard for all this time? Will I lose everything? I tried going back for 4hrs and over a two week period - I think I only worked 4hrs TOTAL. It was a harsh eye opener for me - my reality has changed whether I like it or not and whether I want it to or not.

I don't have a choice right now - I am unable to work. And I don't know how long this will be for. I can tell you that getting out of bed is impossible most days and I in order to have maybe two-three hours of being up and around, it means spending the rest of that time in bed, sleeping and resting. It's still a big deal if I can take a shower more than once a week. I will spend several days in the same PJ's, barely functioning and requiring a LOT of assistance from my family. I just turned 40 - I feel like I'm 90. It's unnatural. And even though I know it's not my choice and it's a disease creating this - I still beat myself for not being able to keep going and push through this! Because, that's what I USE TO be able to do.

But the truth is - I just can't. And it's not me choosing to be lazy. Hell, if I were perfectly healthy I'd LOVE the idea of spending all day in bed! But it doesn't feel so great when it's because you are sick and unable to get up, not because you just feel like being lazy!

I was working full time and made it 7yrs post dx. But I think my run is over. I hope it's not forever but I know in my heart - the truth I've been wanting to avoid - that it will be for a long time.

But maybe just letting go and making peace with this new stage of my life will allow me to stress less and give myself the permission to enjoy the little energy I do get each day with my daughter and loved ones. Life is so short. I guess I need to quit being so scared of not working and instead, looking at quality of life. Which for the past several months has been horrible for me. I've barely see my family and friends. And my daughter and partner spend most of the time visiting me in my bed. I don't want that to be my life.

Maybe I won't go back to being the gainfully employed person I was before but I hope I am able to find a better quality of life in return.

Ugh...this is a big one for me. I could write a book about how I feel about it all! It helps to know there are others who have had to make that move to SSDI and are able to still have a good life. It gives me some hope that it's not the end of the world that it feels like!

[sonotemo]

I don't work anymore

I left work in June'09 because I was so tired. I was not dx yet and I worked about a 50hr week. Around may'09 getting out of bed seemed like a challenge and I had a full physical and everything checked out so I figured maybe I just needed a break. I'm working alot and taking care of my son. I would have never imagined it was ms. Then august came around bam optic nurities...then september came along bam lost all feeling from my stomach to my toes.

I tried to get back into work a couple months after when I could hold my body up again but it's just not something I see happening. I go in to mini comas(asleep for 12hrs+) at times, today I can be ok, tomorrow I'm in to much pain to move, or the numbness makes walking a block take 15 min, I go to school and thank god I have wonderful professors if not I would have had to just drop out, I'm absent way to much...i am currently in the process of filling for ssdi, this is just the worst thing because I would have made more money working back at my old job but I can't imagine how I could do that. I have constant back pain laying in my own bed is painful, constant leg numbness( I stepped on glass and didn't feel it, just saw blood), and the cog fog and fatigue makes me wonder what kind of life is this...

O DID I FORGET TO MENTION IM 21 years old.... you have to love ms.

[princess4ever]

Work

I still work full-time as a 911 dispatcher. I love my job, and it to some degree makes me push myself with I may not have if I was at home.

There are times when the sitting all the time, and muscle craps, are to much, but I don't want to stop work right now. I'm lucky to have a good job!

[rubberlegs]

Hi Tawanda,
I had the symptoms of MS for 30 years, I was dx in my early 40's, I worked full time, for nearly 10 years than was cut from work, I'm not disabled that I cannot work, I can work I can walk, talk, drive ,think, lift,and so on, But I can't get a ******* job, I have had one near interview in over a year! applying for work daily.

I can't imagine Social Security supporting me if I can obviously work and still be productive, My biggest question is, Is there some program that can convince a employer to give me a chance to prove my self?

I dont expect any fluffy treatment, I'm accustomed to being treated like stock.

[Tawanda]

Oh man. This is where I'm struggling right now. My diagnosis has only came six months ago and I feel like the MS bomb has dropped directly on me. I am absolutely drained. My job has me on my feet 90% of the time. I have weakness and tremors in my legs, parasthesia in both hands, lhermittes, and not to mention I fell 3 months ago and broke my ankle. It needed to be repaired surgically. I've been on leave from work since then. I would love to go back to work,but I honestly dont know if I can physically maintain it anymore. I've already started to check into SSI. I'm so scared. I'm only 32 and I dont know what I would do with the rest of my life. I have 3 kids that wouldnt mind having a stay at home mom, but most days thats just as tiresome. I dont know what to do. How does one decide that they cant work anymore?

Looking back 5 years ago to when I stopped working, I honestly know it was time to put a fork in me. Before I realized all the weird stuff happening to me was Multiple Sclerosis (because it wasn't really bad at first), I had about 10 years as a normalish employee. If I could have kept going, I would have. Taking the SSDI route is not a decision I took lightly. A little money is better than nothing, but that's about it. My lifestyle and things I would have liked to have done with my child was altered beyond belief once my finances were cut at the knees.

GOOD LUCK FRIEND. I'VE BEEN IN YOUR SHOES AND I'M STILL STANDING!