I imagine that many people with MS are like me. At first we are astonished by our diagnosis. It is the center of our thoughts. Our symptoms are a giant net and we flail at their cortex. Then, depending on our predispositions we start to move beyond our diagnosis. I imagine that some people define themselves by their MS but that most of us choose not to. I have chosen not to. Yeah, I have MS but that is a tiny part of what fundamentally makes me, me.
I also imagine that at first many of those with MS tell others a lot about their symptoms but in time, they stop talking about everything except the major stuff. I guess that at that point, if they seem cheery, well-adjusted and physically well that most of those around them assume they are no longer experiencing symptoms. I doubt this is really the case though.
I am in "Remission" and in some ways I would say I am 110% of what I used to be but in another sense I am still really sick. I am exhausted all the time now. I still have trouble focusing my eyes. I get spasms in my back and neck. Nights are the worst... I am depressed, tired and afraid to go to sleep. Every REM sleep has its terrors. "Brain Cheese" mentioned "Going down the rabbit hole" in her blog. Every night I go down that hole, sucked into the black vortex of REM sleep. I startle awake, feeling I have forgotten to swallow. I wonder if I will wake up or die somehow during the night. I have already made my peace with death so I usually go to sleep without fear now.
When I awake I have to come back anyway. I awake nauseated every time. It is only through breathe that I slowly resuscitate myself each morning. I awake blurry-eyed and sick. I mediate and use my breathe to clear the symptoms enough that I can get out of bed. Once I have completely cleared my body in the bathroom, I begin to see a little better. Once I have eaten and swallowed some black tea I approach the reality where "normal" people live but even then I am other.
Even with "benign" MS you know that it is not really benign because you can have a relapse at any time and then it is no longer benign. You live, trying not to wait for the other shoe to drop. You try to be present, define priorities and set boundaries but people are looking at you like you are fine and that you are also a big bitch for not caring anymore what anyone else thinks. I am sorry but half the time I am so depressed I don't even care what I think. I give myself a pep talk and say that it's ok to be sad sometiomes but I hate myself for even dwelling.
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So many things are attributed to MS and fatigue is the biggest complaint from most of us MSers. It means we have to break down tasks into shorter periods of time to get them done.
Insomnia is a close second. Prednisone will keep you awake even if you take it first thing in the morning, I guarantee you that when you want to go to sleep at 9PM, you will lay awake for hours.
Food sometimes does strange things to us MSers that never did to us before. (Ugh, excuse my lousy grammar - I'm exhausted!)
Ativan and Requip are my lifelines. Requip for restless legs that always seem to act up as soon as I want to go to bed and Ativan for tremors that come from my MS. (I've had tremors only for the last nine years.)
I hit alot of supplements - Omega 3 Fish Oil, Cal/Mag, Vit B, C, D, and E, glucosamine chondroitin, CoQ10, Selenium, and a few others that I am too lazy to go walk to the kitchen to read the bottles off to you - but they are listed somewhere in August 2007 in my blog. The important thing is to get these into you early in the day so that your diet can interact with them.
You talk about hidden symptoms of MS. MS is not usually visible to regular folks. It is a disease you can keep to yourself for years unless you relapse. I managed to remain employed for many years because I would not tell. Five years ago, I had to tell because I started getting relapses very frequently due to work stress. And that is when my company decided that the ADA's I had in place from previous administration of the hospital were not going to be honored by new administration. So I am now suing them for discrimination.
In the meantime I have been on SSDI since June 2007 when I was pushed out of my workplace. It was a union shop and I was the shop steward. So if they could get away with getting me out, it was a cinch that they would be able to get rid of anyone they wanted.
I have learned with MS you have to do the most taking care of you - because no one else can do it for you. My husband knew I was sick when he married me and it is 32 years later and MS is just starting to get worse. I will be 55 in September and in my area, I am one of the few MSers still living with the disease in excess of 30 years without MS drugs.
Diet is key. I do not eat red meat. I do not drink alcoholic beverages. I do not smoke. My diet is mostly chicken, turkey, fish, vegetables, some grains and lots of water. I drink bottled water because the water here is not drinkable/palatable...so I drink between 5 and 7 bottles per day. It helps metabolize all the drugs/supplements and since some of the pills cause dry mouth, it helps there too.
I know you will learn what works for you. Each one of us is different and so is our MS. What works for one doesn't always work for another.
But if you are benign, you do not need interferons or MS drugs. You can treat with meclizine (Antivert) for vertigo, compazine for nausea (or saltines if you prefer) and other symptoms can be addressed as they come up. Double vision (haloes) is only controlled with rest and de-stressing.
I am glad you found our little community. IF you visit Ms. Braincheese, she has a link to over 100 blogs - most of them are active. Welcome to the Bloggers.
Anne
Anne, thanks for the thoughtful comments. Only time will tell if I am truly benign but for now, I celebrate each day and pay attention to my body. I hope to be like you and to stay off interferons as long as possible but ultimately I know I will just have to wait and see. Every day I thank the universe for my life.
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