Hi Ceryl and all,
I am new here. I wanted to reply to your post because I have also lost the ability to do the things I used to. I dont see this as any kind of pity party.
I had to quit my job working with special needs children. So I thought I would go back to school and finish my degree. I loved going to school. I had to quit that because of cognative problems and I couldnt take tests due to neck pain.
I can no longer go horseback riding, walk 5 miles or swim 40 laps. These things I used to do almost daily. My list feels endless.
I am taking dexadrine due to the fatigue. Otherwise I would spend the whole day sleeping. The pain meds make me stupid and fuzzy headed. The clumsyness is constant.
On the positive side I value each day and what ever I have accomplished, even though it might not be much.
I have a garden which I love.
I have four wonderful children and a loving, supportive husband. I am grateful that for once in my life I dont have to bring in an income, I couldnt anyway and wonder how many people get by.
I am so impressed with this forum and look forward to making new friends.

Blessings,
Paula

Cheryl, I have been reading your posts for several months, and you have inspired me with your attitude and your abilities. This last year has been a roller coaster for me and your knowledge and support have been wonderful.

I have also come to realize that we will all have periods of down time and readjustment. I also do not want to accept that, but it is the reality. So hang in there and take care of yourself. You do so much and it sounds like you have not given yourself the time or permission to take it easy. You should not feel guilty about your need to take some down time. I hope you have a wonderful time in Wales. It is a beautiful country -- lots of rolling hills/mountains and sheep

What have I lost:

1) a sense of independence. I still live alone and I can still drive, but I need to rely on friends to give me rides to various medical appointments when I have been told not to drive due to sedation, etc. I have 2 of these appt's this week (colonscopy and MRI). I hate asking for help.

2) the freedom to just get in my car and go away for a weekend to Chicago or somewhere else. I can walk but need a cane. I can only make it about one block in the city before I need to rest.

3) financial security -- I know that I am better off in this areas than some, but I planned on teaching until I was 62. That is 11 more years. I do not know if I will make it. I have four more year to go before I can retire, but if I have to retire at the age of 55 my income will be drastically reduced.

Vic, I forgot to tell you that's where I went to school. But I guess you already figured that out!!! It's one of the best, and toughest, programs in the country!



Did I ever mention Boise State Broncos to you???

Cheryl,

One of the things that I have gained was an appreciation for your Broncos.

I hope that I never forget what they did in the Fiesta Bowl.

It is in my top 3 list of greatest games ever played.

( U S C is also on the list,..., but they have also been on my Sht list for a couple of years too. The Broncos have never been on that list.)

I hope that today is a better day for you.

-Vic

I know it is hard to adapt to the losses along the way, and I've had to make many adjustments . . . but the one thing I am thankful for is that the changes I've had to make have happened over months to years, not overnight.

There have been times (like when I was paralyzed) that I thought "this is it", I'm going to be stuck in this bed forever. Many times I thought I couldn't get so lucky as to walk again. Somehow, I've always recovered enough that I could be thankful for what I still had left.

The hardest things to adapt to were:

1. Giving up my grandious career goals.
2. Keeping up with the kids.
3. Leaving the workforce.
4. Not being able to travel any more.

The good part about those things is that I have been able to spend more quality time with my kids, and I have reduced stress so that I think I can prolong the toll this disease could have had on me by now.

Each time I've had to make a decision, I've "bargained" with myself through the process, like:

- trying an easier job
- working from home several days
- working flextime each day
- etc.

I always started out thinking "I can manage that", and when I couldn't any more, I would move to Plan C, D . . E. I am thankful I didn't have to give it all up in one fell-swoop as I think I would have crashed emotionally.

So, I would suggest you just keep adapting things, for as long as you can . . . and continue to BELIEVE you can do whatever the new "it" is. It may very well be that with accommodations and/or improvements to your health, you can do have a career for many more years. Right now it is a career . . . but once you have time on your hands (with no deadlines), you will probably find a nice little niche to continue to enjoy your horticulture passion.

You will know when you've had enough, once managing the MS becomes a full-time job.



“Control” of the “pieces” was one of the first things I gave up, once I got my degree. I delegated everything that I could (especially once I had MS), and realized my new role was to be the orchestrator or coach. It was my job to impart my knowledge, and it was their job to make me look damn good because I taught them well.

I took management jobs that I knew nothing about the industry, and when I got to know it well enough, I moved onto other industries. I didn’t need to know how to drive a 18-wheeler, or shave a poodle properly (although I could, but no one knew) . . . my job was to make sure I had a contented and competent group of people that were empowered to do their job well. I built structure and policy, and I let everyone else do what they did best. Ultimatley, that is why I was very successful in business.

It’s an old book now, but I would suggest you read “13 Fatal Errors Managers Make, and How to Avoid Them”. It really will help you to adapt to any new limitations, both personally and professionally.

Cherie

Having gone through the first year rollar coaster ride of emotions, I guess the biggest thing I've lost is my illusions. The illusion that each day will be the same. The illusion of control. Kinda hard to keep it when you are faced with the unknown each day.

I've learned to laugh at myself more and to grab what I can from each day. As my hubby says "it's never boring since we don't know what we'll wake up to" I've had to leave my job recently because of my fatigue issues. I couldn't do that and take care of my home, my family, and myself.

I've learned to split large projects into small ones. Takes longer, but finally getting some stuff accomplished. That makes me feel better when I see the pieces finally coming together.

This disease is crazy, but luckily I'm already a little nuts. I find the adjustments I've had to make have turned out ok so far. Even though I've fought some of them since I'm a stubborn one.

I know!! I think she needs to ask for a raise!

Sorry about your flying av8r.

Well, for me I can start with the good... i've lost alot of weight due to ms, because of swallowing problems.

I've also lost my ability to paint the way I once did. I showed in galleries before the MS, and now my paintings are gloppy, and missing detail. Both of my hands are curled in and no longer work proprely. I'm still trying to gain that back.

I didn't lose my photography skills.

I lost my drivers license. I miss the independence.

The following things I either lost because I let it happen, because people didn't understand me, or because I was horribly sick with no diagnosis.

My husband
My job
My home
My friends
My social life
My money
My family.
My self esteem.

All of those can either be fixed or forgotten. Ms dosen't have to ruin your life. You just have to adjust.

So sorry Av8girl, it has to be incredibly frustrating. You sound like you are fighting so hard to hang on to what you currently enjoy.

I can only imagine how frustrating it will be one day for me, too. You obviously chose a topic many people can relate too.

I have pre-MS losses, because I had a very bad accident and had to stay home on disability for a year, mostly in pain. That is how I incidently found out I had the beginning stages of MS, at 50.

I survived slightly breaking my neck, and could not move anything from the neck down, until the pressure was taken off. God must still want me to be here for a good reason. I could have easily been Christopher Reeves.

I learned how to cope and got by with quite a bit of help from friends and family. However, I wlll never be able to ski again or ice skate. I would be afraid to fall and negatively influence the rest of my back around my fusion.

It took away quite a bit of my savings and a year towards my pension. Now I don't know how long l will be well enough to keep working. All in all, I just tell myself, things could have been worse.

Starfish - I had a neck injury too. But unlike you, it did not affect me initially.

I was lucky. I walked away with some stiffness and went on to have kids, a job, etc.

The neck grew more painful and sx started cropping up a few years ago. One night I went to bed and suddenly both arms were in incredible pain, paralysed. That comes and goes, scary to think it may come and stay some day.

For a while, I lost the strength to play guitar, and that was a tough time for me. After some treatments, slowly I'm getting my jam back.



I played for 30 years, and now I pretty much have to relearn it. But that's okay as long as I can.



I think like you do - I could have been like Chris Reeves. But there must be some reason I'm not, so there's no time to freak out, no time to waste. I'll do what I can do as long as I can do it.