Off work and frustrated....

[doublevision1]

Hi All

Well I have now been off work for FOUR months and it is getting very tedious to say the least.  I went off work in Sept when my symptoms flared up in a big way; within a month I had my dx.  As per my earlier post today to Angela, a 5 day infusion of Solu-Medrol resolved several of my symptoms.  However, after all this time, my double vision has not resolved, which has proven to be very limiting.  I haven’t been able to drive since all of this started, and can only tolerate short periods of time at the computer or reading.  I patch one eye occasionally but am having a hard time adjusting to this.  I had my eyes tested again this week and things do seem to be improving, albeit very slowly.  Still too far apart for prisms to be useful.  I told the technician that it seems my tolerance for reading is even less now than a month ago; my eyes feel tired and strained, and I sometimes get headachy, after reading only a page or two.  She said this makes sense, because as my eyes are starting to improve, the muscles are starting to work again, and with some effort I am able to force my eyes to fuse at images up close, although they don’t stay that way for long.  I guess it is because of that effort, this is causing the feeling of eye strain.  I rest my eyes frequently, which helps them to feel better, but obviously isn’t helping me to be very productive.  

I try to keep busy around the house doing what I can.  I feel really tired a lot of the time and I don’t know how much of this is the MS itself, and how much is a result of my inactivity.

I am a HR policy analyst/advisor and my work consists of a great deal of time spent at a computer, reading, researching, doing analysis, and writing.  I’ve tried to do some work from home, without success.  In my current situation, between my vision problems and fatigue, I’m just not able to be effective.  I have always been a workaholic, and not being able to work is a huge frustration.  I am sick of daytime TV, which half the time I can only listen to since I am resting my eyes.

I knew I was going to need some time off to deal with all of this, however I sure did not expect to be off for this long, with no end in sight at this point.  I am fortunate to have a good employer who is not pressuring me, however for my own sanity I really hope to be back at work sooner than later.  I was wondering, for those of you in the workforce, how much time have you missed due to your MS symptoms?  How did you cope with being off?  For those with visual problems like mine, have you found anything to help you adjust so that you could work?

db1

[doublevision1]

Thanks for your encouragement and for checking in.  I still have double vision and am still off work.  It does seem that it is continuing to improve at a slow pace.  I'm still not ready to return to work, not only because of my vision but also nerve pain in my arms and intense fatigue.  I feel like if I had just one of these things going on I might be able to cope at work, at least part-time, but the multiple symptoms are quite overwhelming.  I've done a bit of work from home but find it difficult to work at the computer for more than 15 - 30 mins at a time.

I have taken the advice of yourself and others and rest my eyes often.  I'm not sure if it's having much of an impact on recovery from the double vision, but it does help with the constant feeling of eye strain and headache that is related to it.

My PCP has referred me to a neuro-ophthalmologist (I have been seeing a regular ophthamologist) in the hopes that they may be able to do something for me.

I'm getting conflicting advice on the use of a patch (ie: frequency) and haven't used it much lately.  This is something I want to review with the neuro-ophtha.  Also I want to find out more about prisms, which I've been told I'm still not a candidate for, but may be soon if things continue to get better.  I haven't driven since September and would be worried about doing so with an eye patch since it cuts off all peripheral vision on that side.

In the meantime I am remaining cautiously optimistic that this improvement will continue, but know that if at some point the improvement stops, I will be OK.

For now I'm focusing on doing what I can do physically to stay conditioned, and am walking on my treadmill every day that I can manage it.  This is helping me enormously to feel better and feel like I have some control over all of this.

Thanks again, and also thank you Rena as well, for all the encouraging words.

db1

[gooddays]

Hi

I have not heard from you and if your condition have gotten better.

Are you back to work?  Is your vision getting better?  I know that it has been difficult for you to get use to wearing a patch,but it helps to move around, it has done it to me.  I go to work every day and also drive.  

I hope you get better and you keep us posted,

Gooddays

[gooddays]

Hi,

I just wanted to let you know that you are in my prayers and in my daily thoughts because I know that what you are going through right now is not very easy.

Rest your eyes as much as possible and they may recover quickly in order to get back to work and stop the daytime nonsense tv programming.

Take care and hope you get back to work very soon,

Gooddays

[gooddays]

Hi,

I can understand what you are going through because since I finally learned the name of the monster, I have had a lot of bouts of double vision and even periods of total vision loss.  I was dxd in 2003 and started Avonex 3 years ago.  

I have had a lot of relapses, the last one was in December.  Since last December my neuro-ophthalmologist recommended that I wear an eye patch on my left eye for at least 18 hours a day for a period of 6 months to year, on a trial basis, to see if I can recover my "regular vision".  This is not very easy to do, but if this is all it takes to get my "normal" vision back, then it is worth a shot.  I have a very thin foil adhered to the left lens of my glasses which blocks my left eye vision, but people around me can see my eye, but I cannot see through it.  When I am at home and take off my glasses I wear a regular self adhering eye patch.  I have gotten used to it little by little and hopefully it will work.  You see my vision problem in my left eye is so bad that there are times that I cannot even control my eyelid and it shuts off itself at any time and sometimes I cannot open my eye.

I work as a customer service supervisor for a federal government agency and have under my supervision 20 employees.  This is a very stressful job, but I love it. The longest period I have been out of work because of MS is 3 months due to a very long ON.  I was almost blind, and was not able to drive or move around the house without having someone around to help me.  To make matters worst, I have feet drop, I wear leg braces on both legs.  I have a new pair, a lot different from the  previous two, and I also use a cane.  My doctor said that these would be my best companions for life.

I am back to work, and have reasonable accommodations for my computer and schedule.  When I was out for the 3 months, I invoke the Family Medical Leave Act, which protects your position in the agency or company you work for without penalizing the employee because of a chronic medical condition.  I started working less hours and each week I felt better, more hours would be added to schedule until it got to the point that I am now, I am working an 8 hour shift.

My computer has a program installed which makes everything bigger so that I can be able to read and view images.  It also has 2 big magnifiers in each monitor, as supervisors, we need two.  These tools are very helpful and the Agency provided them.  They felt kind of awkard at first, but I feel very comfortable right know.  I also have special eating, writing, and assisted living devices that I have been gettting used to little by little, as we all have with MS.

Do not loose your faith and remember:  we have MS, but MS does not have us!!!!!!!

I hope your vision gets better soon and take care,

Gooddays

[Rena705]

Hey db1, I can relate to what you are going through except I am fortunate in that I only have the double vision occasionally....you deserve a medal for being able to deal with double vision ALL the time!  I really do admire your strength and stamina and since I can't, I wish you would give yourself a pat on the back!

I have been off work since Feb. 2007 and I am going crazy as well...the difference being that my employer was not so understanding and I don't have a job to go back to.  It is a long story but when my boss asked me to resign after she read the letter my neuro sent her saying that I would need some time off, I knew that I was in for a fight.

In the end, I lost, I resigned mainly because I was simply too ill to fight.  Of course I have a lot of animosity towards this company but what else can I do?  I still don't know what is wrong with my body which has betrayed me, I am still legitimately ill and I have no income.  

I hope that someone can offer you some suggestions as to how to deal with your vision problems.  I had vertical double vision which was very clear but I could look at  you and see two faces one on top of the other.  I can't do anything when it strikes without a patch and that is really hard to get used to!  I was told not to wear a patch though so that my eyes would strengthen up but like I said, I am useless without it!

I wish you all the luck in the world db1!  It sounds as though things are working themselves out medically and it is just a matter of taking the time for it all to get better.  I do know that we can get books that are on tape and you can also get them on an IPod so you can just sit back and listen to your books being read by someone else...might be something to look (oops, bad word!) into.  The library is a good place to start and your local Society for the Blind might have some other suggestions as well!  Worth a try I figure cause I agree, daytime TV is horrible!!!

Let me know how you are doing ok and be thankful for an understanding employer...use the time wisely and you will be back to work in no time!

Lots of Hugs,

Rena705