Hello everybody. I have not been around very much recently but did come a little while ago. I'm sure you all know it but MS is really giving me a hard time right now and wanted to let somebody know. I am not going through an exacerbation, I have been off all meds for the past 7 or 8 months, changed my diet (which has really helped a lot) and am now waiting on the new oral med for MS. The point of this post is about how frustrating MS has been, I'm tired of falling down, my leg muscles have shrunk dramatically, I fight with all I have each day just to get out of bed in the morning. It takes all I can muster. I am NOT suicidal or depressed at all it is just difficult. I am young. I'm only 38, have a great job and love to work. I don't know what it will take to be considered disabled and not able to work. I've been in trouble a number of times at work because of how MS is messing with my brain. I just wanted to let others know my thoughts and get others ideas. What do you do when you are in that spot in life while living with MS?
Thank you all,

Eric

I'm so sorry that you are going through a bad MS time. ...Rotten disease..

I don't know what to tell you to do. Take a deep breath, let it out and come here to biotch. That's what we all do.

I'm glad that the change in diet is helping you. Any little help can make a big impact in our daily lives. Are they understanding and accomodating at work?

Be strong, be well..

Hello,

Frustrating seems to be MS's middle name. Sometimes we can't have what we want and we get far too much of what we don't want; and that can amplify the frustration.

I find that it helps to think about what I do have control over and what I do not. When the body is not doing well and it takes a long time to do the necessities, prioritizing helps me to save energy and make the best use of it.

Asking for help or even some understanding is hard, but sometimes it is the only way to get through the rough patches.
Some mornings can be especially hard because we can't be sure what we'll wake up to...if we've actually gotten some sleep. Knowing that, I try to prepare things for the morning before going to bed; as much as I have the energy and ability to do so at the time.
It can be little things like setting up the coffee maker, laying out my clothes, putting the oatmeal in the pot and putting that on the stove, setting out the dog's food etc. Then when morning comes, if the body is not working well, at least some of the routine things are not too hard to set into motion.

When the body is functioning fairly well, I prepare for the times when it is not. This involves food preparation, shopping and stocking up on supplies, doing laundry and cleaning etc.
I always have a healthy supply of easy to prepare/instant meals on hand, as well as enough clean socks, undies, shirts etc to last for a few weeks for those times when I just can't do much. Knowing that those things are there decreases the stress of living alone and having to stay at home alone for extended periods of time when that happens.

To alleviate the frustration of a body that is not functioning well, I listen to books on CD, watch stimulating things on-line like TED Talks, read and write (when the hands are cooperating), visit here and talk with other friends on the phone or via email.

I am lucky in being self employed so can take time away from work as needed to some degree. Yes there are still bills to pay but I try to budget for that as much as possible and try to keep enough on hand to cover a month or two of known expenses. It doesn't always work, and at times I have gone into debt, but I have never collected disability as I do not have that option.
Taxation has me listed as disabled, but working; so I do get a break on my taxes but that's about it. So far I've managed to stay ahead of a free fall into debt and I'm very grateful for that. If need be, I can collect federal disability should there come a time when I can not work for an extended period of time, but so far so good.
In Canada, to be classified as disabled, one has to have their physician fill out the paperwork that describes how and why it takes an excess amount of time to complete simple tasks like food preparation, getting dressed, and personal care and/or itemize what things can not be done without assistance.

Most of all when things are rough, I think about all of the people in this world who would trade places with me in a heart beat if they could; and then think about how others are less fortunate and in far worse situations than the one that I find myself in.
Turns out, that there is still a lot to be grateful for even when things are rough.
It all depends on how one looks at it.

Coming here to share (and sometimes just to vent), as well as to find out how others are doing really helps to put things into perspective for me.

Be kind and patient with yourself Eric. Do what you can and when you need it, ask others for help.

Just knowing that there are those like the members here who do understand what we go through has been a tremendous help for me on many levels. May it help you as well .

With love, Erika

Hugs for you friend...have you asked for physical therapy? My neuro finally ordered for me due to the severe spasms & pain in my legs. I find myself able to walk down the stairs like a grownup now instead of a toddler!!:I still get spasms but they're not as bad and the PT who is working on me notices an increased rotation of about 5 degrees in my one knee which is pretty good since I can't fully straighten my legs anymore.
Maybe massage therapy might help as well...I hope you can find something to make you function a bit better...you're so darn young to be afflicted!

Hi Sally,

Thanks for your comments. I appreciate the deep breathing and I enjoy coming here so that is a great suggestion! Thank you

Hi Erika,

Yes, I am frustrated thanks for hearing me. I'm also scared. I am and have been positive with MS until I lost it as seen in this OP. I usually say, "It is what it is. I'm slower but it wont kill me so I'll be alright."

I do have some control in my life. I thank God for my breath each day and my beautiful/handsome kids and a wife that loves me so I see I am blessed. I guess I was at the end of my rope (still am) and see you are correct.

Focusing on the positives is better than counting my "can't dos." It helps to keep positive cognitions. You are right again. Saving energy is very smart also. I have been doing that, walk when I'm able and play with the kids and resting when I can. I feel like I am taking every ouch of will to get out of bed with my weak muscles, am tired of falling, etc. I guess my lamentations were speaking to my grief. I was seeing it as "MS is winning" and it is getting harder and harder. It is grief and not depression though so I am somewhat thankful for that.

Thank you for the pragmatic recs of preparing material the day before. I do that and it does make things more manageable at least takes off some of the difficulty in the morning. I am a crazy reading meaning I read tons. I like the idea of getting audio books. That is a good option. I will look into the other media you said too. Brilliant.

I'm glad you are able to work as you do. I have never heard of the disable but working tax option. I have gotten into big debt due to medical bills. I just payed my last payment on my school bill earlier this week so that is a relief. I only have my wife's left to pay off now. Good point, there are millions of people that would rather be in my shoes. You are right! I will remember that. Thank you for all your ideas.

Thanks for the hug. I tried PT but I live in a very small town. The one I went to told me "There is nothing I can do for you." I asked him, "Should I start doing squats by holding a large pole of my outdoor BBQ overhang?" He said, "No, MS is like trying to turn on something plugged into an electrical outlet, when it gets no juice it doesn't work." He also said, "You need to go to a big city like San Fransisco, maybe a PT there can help. SF is 4 hours 39 mins away from me. That is awesome about your improvement! I love to hear you have found success! I AM so darn young! That is the frustrating thing. I was an athlete throughout school. High school and college. That is also why it is hard. It is a huge difference and I am young. It is what it is and I'll keep doing what I can do and tell you guys of my progress.

Hello Eric & Everyone,

Attitude is everything .

http://www.ted.com/talks/janine_shep...en_person.html
http://www.ted.com/talks/aimee_mulli...adversity.html

With love, Erika

Wow, Ericka, that was POWERFUL! I watched the first link and I am going to run out and grab a straw!!!!!!!!!! I will keep it on my desk at work. Awesome. Thank you.