What have you lost to MS?
 

The past couple of weeks I have come to the realization that MS is slowly (?) taking away the things in my life that I love.

I have accepted the fact that I can no longer fly my airplane whenever I want and am done grieving about that. What is, is. I can still fly but must have someone else (a flight instructor or another pilot) in the airplane with me, I just can’t fly solo any longer. I miss that, but I have accepted what I cannot change.

I am not one to complain about life’s little challenges, I tend to look for the positive and move on. That’s what I did when I was faced with this disease. I figured I would just make the best of it and keep going. I’ve made a career change, some major lifestyle changes, probably some personality changes ;), but over the past 6 months, I’ve been met with some challenges with my current job that I am not accepting very well. That’s the realization that I have come to these past few weeks.

I spent 2 years making a serious effort at going back to school and graduating with a Bachelor’s Degree in Horticulture, Magna Cum Laude, after I was dx’d with MS. I knew it was going to be tough but decided that I wanted to work in the landscape design field as I really love what I do. I have been very fortunate with the company that I have partnered with doing installations and we make a great team. We went to school together and work very well together.

What’s the problem you ask? The problem is fatigue, pain, MS. I work one day and stay in bed the next day. And by work, I mean sitting at the computer working on a design, traveling to a job site (residence) taking photographs, maybe doing some grocery shopping, interviewing a client, all in all, maybe spending 6 hours out or less. By the time I am done, I am so tired, I cannot function. It’s all I can do to get home, download the photographs, get some water, and flop into bed. The next day I am toast.

This has all happened in the last 2-3 months. I feel like my life as I once knew it quickly slipping away. I am not a quitter, I am a fighter. What am I going to do? I have no one to talk to but you, my online support group.

The rest of the story….I go in for the re-test for the clinical trial June 27th. It should take 2 weeks to find out if I am back in the clinical trial extension study on the real drug for the next year. I guess at that time, if I am in, I won’t have to make any decisions about future treatment. If I am out, I get retested in 90 days. Maybe it’s time I think about treatment. Back on something. That’s the ethical dilemma we “lab rats” face. Once I am out of the trial, all the data goes away.

Sorry this is so long, but I am just tired of feeling so crappy. I love what I do and maybe I need to find another way to do what I do…another way of landscape work/help/something. I just don’t know. I do know that trying to make a decision when I don’t feel well is a very bad idea.

What have you lost to MS?

I'm so sorry, (((Cheryl)))

You've really put your body through the paces the last year or so. I know you've been a "tovaxin lab rat" and haven't really felt well for much of that time. You've lost weight. Thru all of this you've kept pushing forward, mentally and physically.

I wonder if by being Cheryl, the Super-Energizer Bunny, you've just drained your batteries and need to recharge?

Sending hugs to you, Cheryl, and baking up a fresh batch of mint brownies in your honor. :hug: *visualize pic of yummy brownies here*

Proud of you for all you've accomplished. Keeping you in my prayers and hoping you'll catch a second wind of energy and enthusiasm. :hug:

Just sending hugs and good thoughts to you, Cheryl--and everyone else who has lost parts of their life.

If the increased fatigue has "only" been in the last few months, isn't there a chance that it will improve--that you'll go into a "remission" in the fatigue department? There's always that possibility, isn't there?

In any case, very best of luck (with the trial results and everything else) and good wishes. And thanks for helping make this forum possible for us. You sound like a super person.

Nancy T.

Thanks Nancy and Twink.

I certainly hope that fatigue goes away b/c it has been very unforgiving since December.

First of all Cheryl here's a hug. :hug: I remember the day like it was yesterday when Jim graduated from college but would never use his degree. It was all he could do to walk across that stage at the time but he was determined to no matter what. I also remember the day I had to tell my boss that I would not be returning to work because I needed to become Jim's fulltime carepartner. I didn't cry, never have, but I would be lying if I said I didn't miss it. It was a graphic design job, teaching new designers, one that you must stay up to date with and work in the field to be even considered a position.

I know that part of us is gone and like you, Jim and I have accepted it. But it is always with you right? Just last year I talked about finally getting that studio up so I could start painting again and now my mom needs the room instead. I often wonder if I am being tested to my extremes. I wouldn't change a thing however as each obstacle has brought me something even more wonderful than the change before. I value my time with Jim and he with me. This is something not many families get these days and that is time with each other. Now I am going to have the opportunity to help my mother. I know that will be tough, but it's something I know I will cherish later even if she breaks my sanity! :D

I just wanted you to know your not alone and yes we do understand. Before you know it there will be many posts to show how much support you have here. Maybe someday you wont be able to do the job your doing right now. But maybe a better opportunity will come up. I know here in my area 3d imaging is in need by architects and landscapers. I have been approached in the past to design two basements for a contractor just because I had knowledge of the software. ;) I had to do it for free but it was fun nonetheless.

No matter what happens we are here for you. :hug:

Last October I purchased a new software program for my design business. I had a heck of time learning how to use it. It's 3-moduled and CAD. I love it. I am getting a good grasp on it and it has really helped me with my designs. I came to the realization last fall that I could no longer hand draw my designs for several reasons - 2 of which were 1) my hands are mostly numb now and 2) clients want instant gratification - pictures of what their yards are going to look like NOW.

That has really helped me but I still find myself so behind in other things with my life that keeping up to date with the new technology taking a toll on me.

In addition, some of you may remember that my mom is ill and I am trying to help my sister, long distance, with some of the emotional support of her terminal illness. I can't physically be there but I am doing what I can to help my sister.

Maybe I am expecting too much of myself, but I have always been the "go to person." I know I have had a lot on my plate since December. First the sinus infection that wouldn't go away, the fiasco with the "in-laws" over Christmas, then my Mom, then the exacerbation, the trip to DC, etc...so maybe I just need to kick back and give myself a break????

Well, when you find out how to slow down let me know OK? My family relies on me to keep everyone together and mediate arguments. I am just now realizing the tough job my grandmother had. lol

I think you need to allow yourself to rest. I say allow because people like you and me don't know what that means. We go go go until we break and then we think we have failed. I am getting better with time and age but I also don't have ms to add to the mix. You know trying to do too much will take it's toll. Maybe it's time to think about a break to see if your ms improves when your not doing so much. You really are a go getter, much more than I ever was and I admire that in you. But it's OK to say you need some refuel time. I got tired/stressed just reading your last paragraph. :p

[QUOTE=Av8rgirl;287733]
so maybe I just need to kick back and give myself a break????[/QUOTE]

Yes, time to recharge your batteries, girl. :hug:

Somehow I think that is going to be a big challenge for you, to slow down and give yourself some time to recoup. Hugs to you, Cheryl!

I've got a vacation planned in September with my bestest friend, Laurel. Some of you may remember her (Mdolfan). We are going to Wales for a week. That's my goal, to get to September. My sister is going with us. We are celebrating both of their birthdays, one on 9/10 and one on 9/11 (that would be my sister - tough break huh!?!)

I just need to talk this out. Make sure that I am not nuts. But most of all, I want to keep doing what I really love doing -- helping with gardening and landscaping and not lose all this knowledge that I worked so hard to gain.

I know I am not the only one in this boat and, believe me, I am not looking for a pity party here. Anyone that knows me knows that. I am mobile, sometimes I get lost, but I have a really nice GPS now and keep little notes to remind me where I am supposed to be when. I keep a note pad in the car of what I am doing for the day and check things off as I get them done. It's not for lack of memory, it's because I get so tired that I just don't WANT to do them. If I don't do these things, they don't get done.

Anyway, thanks everyone for the support. It's what I need right now. You are the best....thanks. :hug:

I personally think that MS has taken heaps away from me in the past 12 months, and to be honest I wasn't ready to give away any of the things that it so savagely took from me.

Back in the late 60's I started work as a student nurse (when I was 17 years old), and continued working for 40 years once I'd registered (yes... I AM OLD!). In those 40 years, I went up through the ranks of the nursing ladder experiencing just about every type of nursing there was, and landed on just about all the rungs of the ladder there were as well. I worked as nurse in charge of many wards (surgical, medical, palliative care, critical care,) and also worked as deputy charge of a large hospital along the way.

What I loved and did best, was working on the wards caring for sick people. I worked as a lecturer and clinical teacher of student nurses in colleges and hospitals which I also liked, and I worked in hospital administration before I finally went back to hosital ward work..... once again doing what I loved most.

Nine months ago I had to give it all away.

To me, I feel that I've lost my indepenence with no job, and now I can no longer drive. My short term memory loss has made sure of that. I'd be too scared to drive the car now as I'm not sure I'd remember my way home, let alone the rules of the road. I've not driven the car for about 10 months now, and that's not a good feeling.

Then there's my mobility. I now walk with a cane, and I have a rollator for bad days. With that comes a loss of self esteem feeling. On a bad day I put the Handicap Parking sticker up on the front of the car and people see this youngish person and sneer down their noses at me! Why do we have to put up with this #$%@, and why do they make us feel bad about using these stickers when they're issued to us for a purpose?

The list goes on and I mourn for the loss of my career, but the thing that hurts me most is my grandbaby.

I have a beautiful grandson, and I'm too frightened to pick him up in case I drop him. The thing I hate the most about this rotten disease is not being able to be a normal, cuddly grandma, like most grandmas are. :(

I'm sorry Cheryl, and others who are going through this as well. It sure ain't one of the good bits you find in the MS literature. Mega hugs to you all. :hug:

There was a wise old man who said to me: "Do one thing at a time, and when it is done, then move on to the next task, no matter how many demands/requests are made of you". He was my Major Prof. My committee members all agreed and said that if there is one single lesson they want to teach, it is that you cannot remain sane when you let the world weigh you down, so you need to learn how to say "NO".

That is one of the most difficult lessons to learn.

The world will survive if you decrease your obligations, because in reality, those obligations are self-imposed.

On a business note, there are students who would love the chance to have part-time jobs that pay cash (i.e. you send them a 1099m at the end of the year and do not have to hire them). Boise State is bound to have a bunch of students who could fill a role for you.

http://selland.boisestate.edu/center-hort.asp
http://www.boisestate.edu/biology/index.htm

Think of yourself FIRST.:hug:

-Vic

I am still trying to learn to say NO, and it is an all-encompassing task.

Type A personalities always have an internal fight going on, and there is never a real winner because we always think, regardless of our successes, that we could be doing better or more. MS makes this battle rage even more.

HOWEVER, you have power.
Power to slow down...
Power to delegate...
Power to say NO...

Hang in there, it is a tough battle, but you will win the war...it just takes a little time...

-Vic

Thanks Anne for sharing your story. I know that I am not the worst person with MS nor am I without symptoms either. But after 7 years dealing with this disease, I guess it's finally rearing it's ugly head. Either that or there are other things in my life that are finally on a collision course and I seem to be unable to get a handle on all of it.

Maybe it's that "out of control" feeling I have at the moment. I had a situation recently that put me on the defensive and I didn't like how it made me feel. There was no reason for it other than I felt as if my credentials were being challenged. It was petty and immature on my part and the other person was probably totally unaware of what had happened. I decided to use it as a learning experience. One of my mentors always reminded me that when you stop learning from those around you, it's time to stop doing what you are doing. Of course, he was a flight instructor and he was referring to students, but I think it applies to any field. You can always learn something from students or colleagues if you want to...I felt on the defensive and failed to see the forest for the trees. I wasn't ready to give up my leadership role but realized that sharing might not be that bad.

We all have to readjust. I think maybe I am going through another major readjustment phase, but this one seems to be a bit more major than any one before....I just don't like it. :mad:

I haven't even gotten to that part yet. Fortunately, I think, I still have most of those things... at least mobility, independence, and finances. I am not so sure I am stable, but not so sure I ever was stable! That was the subject of some debate in our house today....:mad:

Cheryl,

If you have mobility, then you are physically stable.

If you can write the way that you do, then you are mentally stable.

If you hear anything to the contrary then it is from someone who is not very observant.

Thanks Vic. ;)

Lets see

My Harley "it was 1 year old when I had to sell"

My Hayabusa racing bike "340 rear wheel horsepower sportsbike"

My train of thought

I think soon my independance

:hug: Cheryl,

I can totally relate to what you're feeling and experiencing. I had to finally stop working this past April. I had been at my job for almost 15 years. But I knew it was necessary. And I guess I sort of resigned myself to the fact that what is happening is happening for a reason and it's up to me to figure out how to use it to my advantage and find the positive in it. I miss working and worry that if I don't challenge my mind daily that I will become even more forgetful than I already am.

I suffer from fatigue, too, and it's probably the most aggravating symptom I deal with. I went from working a 12+ hour day to taking at least one nap every day. I hate that out of control feeling because I like to know what to expect next and with MS we never know. I try to do things each day that are now difficult for me because I don't want to lose the ability to do simple things like write legibly or fix my son's favorite dinner. These things are more difficult for me to do since I, too, deal with numb hands.

As for the things I have given up:

Financial Security/Stability
Some of my independence

Things I have gained:

A greater appreciation for the small things I used to take for granted.
Time to read.
Time to cook.
Time to enjoy the sunrise with a cup of coffee and the birds.
Time to volunteer.

I don't like to complain about things - and I know you don't either. I don't really consider this complaining - rather, just acknowledging the fact that we are not the same person we were before MS moved in. We're just stating the obvious (to us, at least) and trying to come to grips with that.

For each thing that MS takes away from me I try to replace it with something better. Not always an easy task but at least it challenges me to always seek the positive in any situation. :)

I can't promise things will get better for you, but I can say this. I had fatigue so debilitating I could not get off the couch for months. This started in fall '02 and kept up until I got some measure of relief from provigil, even if that was temporary and med induced.

:p

When that stuff stopped working, I was devestated.

Literally, I could move for 2-3 hrs a day, with plenty of rest between activities, until some time last year. And then it lifted.

Lately I have been almost back to a normal energy level, only needing to rest due to pain.

:)

And even the pain is much easier to seal with since I've had these patches, but still, I'm like you - one day moving, one day toast. I get it. It stinks.

I lost my job - my sense of identity, my life outside the house, my friends, my autonomy, my income - first.

I lost my fairly clean house to messiness.

Things have changed, I've lost a lot.

So I know why you're worried, and no, you're not crazy. Slow down when you have to. You'll only hurt yourself ignoring how lousy you feel.

You will find tricks to cope - as you already know. And keep seeking meds to help overcome or deal with these miserable sx. And keep in mind that some of the sx that, while long lived, may not be permanent.

I was wondering if it was possible to die from fatigue there for a while and was surprised that I ever snapped out of it.

:rolleyes:

I can't see you giving up the landscape biz just yet, but paring down that to-do list can't hurt.

DO NOT feel guilty about that. ;)

It's all about priorities.

Less customers when you don't feel so hot, and order your groceries to be delivered - who *likes* food shopping, lol?

Stuff you need to do and want to do go at the top of the list. Take care of you, and the rest has to wait.


And you, Sis and Larel have a blast... I'm so jealous!

:hug:cheryl, I've been fighting the ugly fatigue since December. It just hangs on and it's awful.

you have to take one day at a time or 1 hour at a time.

I'm still trying to learn to listen to my body. I am sorry you are going though this.

This disease shows No Mercy.:hug:

I almost didn't even read this thread. I try to avoid "this is what I DON'T got", because it's very easy for me to dive in and wallow there. But then I realized: No. Every once in a while, in the company of people who understand, you need to just face the reality of what you've "lost". How can you re-group if you are in denial?

I try (don't always succeed) to balance the loss with a "but", and I see that you folks are doing that as well. For example:

I can't walk around the lake any more, but I can still walk to work.
I can't walk (safely) without a cane or rollator, but I can still walk.

So far, I have had mostly reductions, as opposed to losses. I can't do things as well, as often, as fast, as spontaneously, etc. But I can still work, see, drive, walk, talk (and talk and talk), and sometimes even think. Thank God.

First, let me send a hug your way. :hug: This disease sucks!

I have lost my career that I spent many thousands of dollars being educated for. I have lost most of my eyesight. I used to be able to read day in and day out, now I use books on tape. I lost my ability to drive myself anywhere. I really hate that! I used to love being in the car. it was my freedom, my escape, and now, its just a way to get to the MD or pharmacy. I lost a large chunk of finances by being forced to retire. I lost friends who cannot adjust to my new needs. I lost stamia and the ability to stay out till one am, or walk up the mountain to have a picnic. I no longer run marathons.

I gained the true knowledge of just how much my husband loves me. He LOVES to listen to those books on tape with me. I used to read alone, now we enjoy stories together. When I am able we take a leisurely stroll down our own block. I have gained a chauffer. No more struggling for a parking spot or worry about a hot day taking my breath before I can get into the store. My chauffer drops me off at the door. I cant climb mountains anymore, but I can watch videos of mountains with my family. I dont go out to eat at fancy places anymore, but we cook together as a family. I have learned that my bed doesnt have to be made perfectly in order for the day to begin. Vacuuming can wait till I am able to do it. Laughing and being with my family is now my focus, not taking care of others.

I hope you feel better and are able to stop and smell some of those roses while you are in the slow lane.

Cheryl I am so sorry this is such a rough time for you.

You have met me before. You saw how badly I was walking. Now I am doing so much better. You wouldn't even believe how much improvement there has been. I really didn't think it would ever get better, but it did.

I really hope your loss of stamina is temporary and that you will improve dramatically.

I was diagnosed in Feb of this year so I'm still dealing with the post traumatic stress on that! I have three boys (9,7, and 4) and I feel like I lost the ability to be a great mother to them. My ex took them to the beach yesterday and it was too hot there was no way I could go with them.

I will try and continue going back to school in the fall but I had my first bout of muscle spasms in class and freaked everyone out since everyone thought I was having a stroke.

I have for this moment decided not to date. I don't have a handle on this and don't think I want to explain to someone why I'm too tired to do anything, all the meds I'm on, and most people are worried you're going to be crippled and they would have to take care of you.

I am going to try and work so I don't know financially if this is going to be a problem but for the moment it's ok and I'm squirreling away money every chance I get, especially for my sons.

Cheryl,
For the short amount of time I've posted on here I read your posts and see how you plow through your challenges and it makes me want to get through mine. So, I very much appreciate what you do and who you are as a person.

Monique

My uncle (my dad died and this man was the closest thing I ever knew to a father) had MS. He had a pool he could not use due to heat sensitivity, but he kept it for us kids.

He'd have drinks and snacks all summer - his dd was grown, but the rest of us lived over there, lol. He had a stereo system in the carport, and he sat in the A/C in his livingroom, and we'd pop inside to talk with him.

Some of my fondest memories are of those days. So don't think missing out on the beach makes your kids think any less of you. You'll be surprised what they will remember - you will give them plenty of good times, but you have to take care of you to take care of them.

:hug:

My sis asked me to join her and some other women on a Mother's day get away. I said I'd see if I was up to it. I let her know a couple of days before they left that I was.

The other women didn't understand why it took me so long to get back to her on that - they don't know me that well. I never know if I'll be up to things.

At one point, they decided to have a go at the hotel's hot tub - I declined, but did put my feet in for no more than 5 minutes as we sat and chatted.

I got such a round of vertigo I scared them all trying to walk out of the pool room and make it back upstairs.

I had to explain why that was - I just said I'm heat sensitive and give me a minute, I'll be fine. Which I was.

But I'd been doing so well, hiding how bad the elevator was messing with me that it made me embarrassed to be all drunk-walking in front of them, and mostly that it had worried my sister.

:(

I'm used to it, it's no big deal to me, but I was mad that she had to get upset about it.

This is part of why this stinks. Never knowing how we're going to be. How other people respond to how we are.

The thing I try to remember is that nobody really knows how they're going to be, how life is going to be - if they think they do, it's an illusion. Because whatever their life may be right now that can all change in an instant. We just live knowing that every minute, for better or worse. At least we are not totally blindsided by these changes.

Thank you
 

Yes, you're right. I just try my best in any situation. I will go back to grad. school and try my hardest to get through the entire year! The most important people in my life are my sons.

The problem with the boys is they are so used to mommy being "normal" that they truly don't understand mommy needing naps or not being able to do the things they want me to do. But, I still try for them. I told my ex who is sometimes in denial that I couldnt go to the beach that it'll make my symptoms worse and he suggested Chucky Cheese. So I will probably take them there this week so I'll have the a/c and they can run around like nuts.

I think the hardest part is being the only one with MS in my family because no one thinks I have it "cause I am the only one" and esp when I'm fine a couple months ago and now my body is breaking down a little they don't understand. Speaking of my little angels, they are fighting over the videogames and my 4 yr old is trying to eat the seeds out of an apple. :eek: Mom's work is never done!! Help!! :smileypray:

Monique

You know what my friend? You do what you can. You forgot to mention in that list that you usually end up helping out the installers as well - that's a big energy sucking event that you can't afford to do.

You can still do this, just cut it back and space it out a little more. People call you and use you because they love your work. If they have to wait an extra day or two...so be it. It's not worth your health. If you only work 3 hours a day, then that's what you do so that you can continue to do what you love. Remember, you're your own boss. It's not like you can get fired for not working 8 full hours every day!:p

You work much, much harder than you are giving yourself credit for. Give yourself a big pat on the back because many people without MS couldn't keep up with you. So slow down, relax, and take some time to have a little fun right now.

:hug:

Greta - Cheryl is the toughest boss Cheryl ever had or will ever have.

losses
 

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:D

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???

:D

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. :D

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. :rolleyes:

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. :D 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!:D

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. :o

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.

:cool:

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.