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I work as a substitute teacher at the local high school, which usually provides anywhere from 1 to 6 or 7 days of work per month. Last week I worked every day. I usually don't agree to work more than three days straight because it wears me out so badly.
As the week started I was already hurting and tired after battling fatigue and various nerve pain for the last two months, but I agreed to work all week anyway. When you never know when they might call again, you try to work every chance you get. Man, did I ever pay for it though. I'll enjoy it in a few weeks when the paycheck comes in, but the past week brought me to a level of pain and fatigue that I haven't experienced in almost 6 years.
By Wednesday I was exhausted and in so much pain I could barely move my arms to eat dinner. Thursday night I fell asleep about 7pm and didn't wake until 6 am Friday. The eleven hours of sleep certainly helped, but I was still pretty sluggish and in a lot of pain Friday. Again I fell asleep early in the evening and slept all night. The sleep marathon continued through the weekend. All the pain and lack of energy kept me in a bad mood all week. I'm sure there are a few freshmen that might be calling me Miss Cranky-pants from now on.

Tonight I'm not quite so tired, but in even more pain. The joints in my right leg are very painful and feel swollen. What feels like sciatic nerve pain is shooting across the top of my hip. It actually makes it feel like my underwear is too tight! I wouldn't mind a dose of something with codeine in it right about now, but will have to settle for some Tylenol Arthritis. Hopefully it will feel better in the morning, because I can't get to the doc until at least Thursday.
One things for certain, this past week has clarified to me that my body won't tolerate a full-time job. Meeting with the lawyer this week to review my case for SSI. I go before the judge in November.
Any suggestions on how to relieve the pain in my hip? Been stretching and using the dog as a heating pad (the actual heating pad would be too hot).
Riki
And your fatigue (and amount of sleep) sounds sadly just like me, too.
I am so sorry you're going through this, and paying for your exertion of last week. I hope all goes well with the lawyer, and especially with the judge in November. You've been through so much, and keep trying, and you deserve something good.
Hugs.
Your situation sounds like mine. I work 8th graders at a middle school as a paraprofessional. I started back working on August 1st and on August 9th I had to leave work because I was in so much pain. I've been on medical leave since then. This is the same problem that I had last year. I took FMLA , but everytime that I return to work I have the same problem plus blurred vision, burning and pin feeling in my feet and a lot of other things.. I also had the problem where my left hand gets weak that I can't hold a piece of paper. I did try for SSDI and I was denied. They told me that I do have some restrictions but because I worked as a Data Entry Clerk before that I should be able to find that type of work. I was just diagnosed in October 2010 and all of this is really starting to get to me. I don't know what to do.
This disease is hard on everyone. They have to watch the one they love suffer a disease that they don't understand and don't always know how to help with. My best friend once told me it was like the disease stole her best friend. On the outside I still look the same, but all the things I used to do aren't part of my life anymore which makes it hard to recognize me sometimes.
I do my best to remember that this doesn't just affect me and that as much as I mourn the loss of the life I thought I would have they have to mourn that same loss.
Have you checked the NMSS website? They have a lot of resources and stuff for caregivers/spouses. Maybe he just needs some help understanding or a place to vent about how much the disease has messed with his life too.
I hope he comes around and if you're working two jobs and raising 3 kids and a husband, I'd say you are doing very well.
Here's to better days...
Darn those MS over-achievers! Those athletes who make the cover of MS magazines as they cycle or run cross-country. Able people might think the disease makes us bionic!
Your husband needs to know that, in addition to being athletes before the disease struck, those people are either lucky enough to go into complete remission between flares, or they have benign MS, or their symptoms are mostly sensory dysfunction with either mild or absent motor deficits. Most of us have trouble walking across the kitchen without a cane, a walker, or grabbing onto furniture and walls! And let's not even talk about fatigue...
As Riki mentioned, it is hard--if not impossible--for our loved ones to understand this thing. It takes time for them to learn how to handle having an MSer in their lives. I had to teach my people about it, and over time, they have learned how to deal with me in more supportive ways.
I wish you good luck as you kick hubby along that learning curve, LOL. (Sometimes that's what they need!)
Kim
My employer took me out of a job I have been doing for 12yrs and put me elsewhere. They thought it was in my best intrest, right. I was in tears in her office today explaing this new job is to hard/confusing. I need to be in a job that I'm familure with, even my Dr agreed. I told her I was embaressed & humiliated having to ask the same thing over & over again, not to mention all the mistakes I'm making.
I had no problems in my old position. I'm a liablility, it's that simple. The people who are in my old job are terrible, customers complain & they make tons of mistakes. The only difference is they don't have MS!!!! I'm looking to cut my hours & go out on part time disability. Has anyone ever applied for part time disability?
Hugs
Tammy
Jenn
Hugs,
Tammy
I am thinking about applying for SSI, since I was fired last year from my job for taking FMLA. Since then the stress from not having a job has taken affect and I have gotten worse. I understand about the fatigue and sleeping alot. Right now as I am responding I can stop typing and fall right to sleep and sleep for about 3 hrs. I too have weak hands. 1/2 of my left hand is completely numb and cold. And I'm afraid of going out by myself because I'm afraid of falling. So please update us on your hearing with the judge.
Guess what I am only 28 and been dx for six years. I just started getting worse last year. I feel like my life is passing me by.
How did they fire you for taking FMLA? That is the point of the law, to allow people like you and I to have the time they need to recover. Have you considered a lawsuit against your former employer?
I will definitely keep everyone posted on how the hearing goes. My meeting with the lawyer this week was just to update my medical records and allow the nurse that works for my lawyer's office ask me a few questions.
I'm pretty sure they can't just fire you for taking FMLA. I think you definitely have a case to file a suit against them for wrongful termination. At the very least you should have a great case for unemployment benefits.
If you are going to file for SSI, I'd do it sooner rather than later. It usually takes at least 6 months to hear from them on your first filing. Some people are easily approved and then people like me with invisible and "mild" symptoms have a long road of denials and eventually a meeting with the judge, which is stressful just thinking about whether or not it will be approved.
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