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    keeping up appearances
    44Tara posted:
    I can't be the only one in this are YOU holding it together?

    I was diagnosed with relapsing-remitting MS at 28 (I'm now 35) and have been struggling to keep my life as 'normal' as possible since then. A losing battle many times, and I definitely aggrevate myself. Whether it's right or wrong, I feel pride in my ability to get over the day to day challenges and push myself to accomplish more. I HATE the idea of being disabled and WON'T accept the idea that you can't find a workaround solution to any limitation that presents itself. I haven't yet accomplished what I think I'm capable of in this life and would rather die than quit trying. I'm a perfectionist, and stubborn as hell.

    But...sometimes I feel like the ends are fraying. Waking up is hard and I'm always late for work, especially the mornings after my Avonex injections. I'm tired and usually have muscle & joint pain and numbness. I've gone from trying to look good when I leave the house to simply trying not to look like something's wrong with me. I'm frustrated that I don't feel as intelligent as I used to (in fact I can't remember things and feel pretty stupid)...and that is probably from a combination of MS and the stress I'm putting myself through. It's not like people don't know that I have this or that I don't take care of myself...I just haven't figured out how to strike the balance with being an overachiever and being sick. When does it change from "overcoming" to flat-out denial?

    Sorry for the encyclopedia...anybody want to talk about their issues with this?
    swampster1952 responded:
    Hello Tara,

    Well, you have touched on one of the most difficult problems that us MS'ers face every do we keep on moving forward when we have this constant weight trying to drag us down.

    It isn't easy is it?! Not only do we have the very real physical manifestations that MS causes us, but we have the psychological dilemma of dealing with just living with the disease. We all have hopes and dreams of what we want to do with our lives and now we have this...MS. Bummer!

    I work for myself out of my home. So that is one problem you have to face that I don't. I can look like crap, dress in my pajamas and still get in all my work. But I still have to tell myself every day that I can get through the day and I can still accomplish those things in life that I really want. Of course, many of those lesser wants have gone by the wayside and are no longer important to me.

    I have a wonderful woman that I am married to, who works outside of our home and who understands what it is I am going through. She either gives a helping hand or kicks me in the butt, which she thinks is most appropriate!!

    Between the two of us I can keep on a pretty positive attitude about my MS and the limits it has placed on me. I don't think of them as limits much, but more like obstacles that didn't used to be there. Now I have to find ways around those obstacles and figure out what it and what isn't important to me and focus only on those important things.

    Like telling my wife I love and appreciate her, scrubbing the kitchen floor, even though it is difficult for me to do now. Getting dressed every day, making dinner and doing the dishes helps to make me feel like I am at least lightening the load for my wife. I even vacuum!

    Boy, this is getting pretty long and I probably haven't even answered your question! I guess I don't really know how I do it. I am just lucky I guess...

    Best to you Tara,

    KikiMu responded:
    I'm not holding it together at all!

    I'm wrestling with the same issues, but not for nearly as long as you. My symptoms just started last year and I was just diagnosed this summer, but already I can hardly remember what it used to feel like to be me -- and oh how I loved my life before! I worked long and hard and painfully to figure out what I am about and how I can best contribute and use my talents, what makes me happy and fulfilled -- and I built my life around those things. Now it feels like so much is slipping away.

    I'm an overachiever, same as you, in so many areas of my life, and had (have!) very high standards and expecations for myself on a day to day basis. Not just physically, but energy-wise, what I accomplish, my relationships, intellectually, etc.

    I know that I'll be learning some important lessons from MS about patience, acceptance, humility etc., but they are not lessons I especially want to learn! A friend would call this an AFLE (another f***ing learning experience). I'm 44 and I have so much I want to accomplish yet! Right now I'm all but paralyzed by grief for what I've lost and just keeping myself going to the office and somehow pulling it off.

    And yet, most people, even those closest to me, my boss, my boyfriend, think I'm doing just amazingly well. Sometimes that's a compliment and sometimes it's not, if you know what I mean.

    My doctor referred to me as a "chronically ill person" the other day and I almost fell on the floor. Last year this time I was training to run my seventh marathon. Now I have to rest after I bring in the groceries. How the mighty have fallen.

    Thanks for posting and asking cuz I clearly needed to rant. I guess I'm not quite ready for the positive outlook business just yet.

    44Tara responded:
    Thank you, Dave! Until I read your posting I never really heard anyone else's story (except reading about them in those magazines we get). I am so glad you have an arrangement that's working for you! I worked from home for a year and it drove me absolutely mad...lots of reasons pertaining to the job and also, I didn't make an effort to get out and do other things. So I felt isolated and spent too much time in my own head. Sounds like you keep yourself busy but don't sweat the small stuff...something I have yet to learn.

    You bring up another complex issue we deal with as well...relationships with the MS-factor. I just got married 3 months ago and worry all the time about existing and potential burdens on my husband. It sounds like you and your wife have an absolutely fantastic relationship and I hope we are as lucky as you two. You pointed out something to me as well...I need to tell him I appreciate him more often. He's a quiet guy but I know he feels pressure, whether he admits it or not. His mom is going through some nasty cancer and his father is taking very good care of her...which I know my husband is looking to as an example. Right now we tend to bicker over who should do what in the way of household chores...I think the fact that my illness is invisible makes it hard for him to accept that I'm just too freakin' tired for housework. Your wife is really someone special.

    Thanks again for sharing with me. Cheers, Tara
    44Tara responded:
    Hi Kiki! Thanks for your reply, it sounds sick but it helps me to know that my reaction to what's going on isn't just "me" but something other driven people feel too when faced with this.

    I rant now but my god, you should have heard me when I was first diagnosed!! I was sooo awful. So I know exactly where you're at, you've been hit with a mack truck and are trying to figure out what's going to happen next, but you have no way of knowing. For strong women like us losing control is the WORST. I have to say that the first few years were a career went off the rails and I did some crazy things. Then somehow I was able to downplay the physical things I was feeling (somewhat) and start believing in myself enough to "rejoin the living." Trusting myself has been hard, I don't feel like I can count on myself anymore. I started trying to catch up on all the time I lost, which is probably a trap but I'm still trying.

    We really do go through this whole grieving thing because we feel like the person we knew best is gone. When you're hearing doctors say crap like "you're a chronically ill person" you can't believe it's you they're saying it to! I now have a virtual middle finger in the air to the whole idea that I'm sick. It's not that I have anything against people who are impaired in any way...I suppose I just figure as long as I'm even somewhat able to plow ahead with the life I planned to have, I'm damn well gonna do it. I struggle with the challenge of having to redefine what I consider "greatness" so that it's something attainable.

    So I guess the moral of the story is, if we didn't fight against it we'd be "giving up." I think I need to get over myself and be okay with being vulnerable...not sure how though! If we have the tenacity to be this angry, then we must be capable of so much more!!

    Stay sane! Tara
    KikiMu responded:

    Thanks so much for all your thoughts! It's so great to hear from someone going through the same things I am and biting and clawing all the way, too.

    Finding the balance of fighting this diagnosis and accepting it is a HUGE challenge, one I'm sure I'll be struggling with the rest of my life. I WANT to continue to expect a lot of myself, especially physically, because I'm terrified of losing any more strength or capability. But I also don't want to drive myself crazy (or crazier). Ugh. I struggle with wanting to hold it together and be as normal as possible and wanting to just lay down on the bed with the cats for a month straight!

    On the other hand, I feel bad, on boards like this, complaining about not being able to run or work to the insane degree that I'm used to, when so many others have much more fundamental challenges. Most people in my life see me as fairly normal still so they don't get what the big deal is. It's nice to be able to hide behind that at times, for privacy and so people I care about don't worry, but it's also deeply isolating. I've also noted that a lot of people I used to consider close or semi-close friends have all but disappeared after hearing about my diagnosis. People do fear disease, I guess.

    I know in my heart that out of this experience I have to forge a new identity for myself that is not based on the kind and quantity of achievements I had in the past. Yes, you're right, our own selves have been torn from us, and it's devastating in a really profound way, unlike anything my life has prepared me for.

    I'm sorry to hear you had such a rough time in your early years, but you seem really strong and amazing overall. Of course none of us can "make up" for lost time, but maybe you can look at that period as a necessary (but painful) part of the process of your own unique life. I do believe that when we're in a crisis, the best thing we can do is listen to our instincts and do what they call for, even if it seems like it could be the wrong thing. It doesn't lessen the terror of walking blindly through a dark room, but at least it gives us something to guide by.

    Hang in there, Tara! Thanks for talking!!

    Heather03207 responded:

    I understand your post, even though I have not yet been diagnosed with MS. I am being tested for it next week, and have had symptoms on and off for the last three years, particularly within the last six months. Of course, I didn't know it was MS, just struggled along, going to the occassional neurologist and doctor, or just giving up seeing anyone until I ended up in the ER a month ago, throwing up, heart palpitations, headaches, feeling like my brain was literally attacking me.

    It has gotten worse, and the worst thing, for me, particularly since the ER, is a lack of brain power and a noted decrease in intelligence. I can't remember things, have lost my internal vision, and it takes me longer to write. Add to that an apparent swelling of my cranial nerve that has been going on for years, blurred vision, and vertigo. Until June, I was an English professor at a university here in Cincinnati. I left that position to start my own freelance writing business--partly because of fatigue, and a slurring of speech, stress, and a decreased ability to concentrate. I tried so hard to keep it together when I lectured or went to meetings. But I convinced myself that I didn't have to change my life--could keep this up--and even go on to get my PhD.

    Lately, I've given up that appearance, even foregoing a part-time job at an ad agency I was supposed to take last week. It was humiliating to turn it down, because I worked for them four years ago, in my prime, when I'd just turned 30, and they remembered me that way--full of life, highly creative, driven. Now they know that the only thing I can do is work from home, with naps and lying down, about four hours a day. I have one client. I'm dating someone but we spend at least half our time lying in bed, watching movies, and I feel like Brian Wilson.

    In just a matter of months, my entire life has changed, but I've simply had to acknowledge that my body has a life too, and that I can't completely control it, and that my mind has a life as well--one that I used to think was entirely within my control, but have found that I was mistaken. This is hard for someone who's always thought "mind over matter" and was engaged in a variety of spiritual practices to increase my awareness and consciousness. Where has it gone?

    I'm starting to be challenged with the opportunity to love myself not for what my mind, body, or even soul can do, but love myself even if I do no more than exist. This is the biggest challenge of all.

    It seems to also be a challenge of self care. How well can I love myself, put my needs before others, feed myself the right food, vitamins, rest, and really have compassion for my self, and for my body?

    This is not easy, so I understand your balance between wanting to do it all and needing to take care of yourself.

    I think, for me, I'm going to find that balance in having compassion for myself even if I don't accomplish everything I said I would in this lifetime.

    I don't think that this is giving up...because I could get better once diagnosed and on medication, once I know what to do to help control it. But I'm trying to find that fine balance between control and surrender.

    I wish you health, balance, and rest!
    KikiMu responded:

    Your post really touched me. I'm a professional writer too. I work fulltime as a speechwriter and also do freelance grantwriting and annual reports, that kind of thing.

    I've been able to keep all that going since getting sick, but sadly my own personal writing has gone by the wayside. I'm a poet as well, and I used to have no end of mental energy for writing of all kinds, but I find that all I have now is just barely enough to do my job.

    It's the most terrifying aspect for me. I have always relied on my mind to carry me safely through life, to process the world around me in a healthy and productive way, and as the primary way I care for myself and provide for myself. The idea of losing that is truly terrifying.

    hilachopper responded:
    Since this posting is 2 years old, please reply if anyone is still interested in the discussion.
    swampster1952 responded:
    Hello hila,

    I am always interested in this topic. Since it is something every one of us has to deal with on some level, we all have some experience to share I suppose.

    Getting people to discuss the issue is another matter!

    Always14989 responded:
    Hi Dave,

    You are so right! It is hard to talk about, especially since we are all on "different but similiar" MS journeys.

    I like to hear how other people handle (or don't handle) all of these wonderful challenges. Keep the posts coming!


    Al(ways looking for ways to cope)
    sario1952 responded:
    Tara--too answer your question it is "not easy!". And, it seems as the yrs roll on, they just keep getting harder and more difficult! I am so sorry of your situation.....but, please to not feel alone in this crazy MS world!!!

    It would take me pages ,and pages of texts, if I wrote everything, but, I think ONE of the most important thing that has changed in my MS life is........for 25 yrs I have been a aerobics instructor,taught "high-impact" ,runner, personal trainer,and all and everything dealing with fitness. My life has changed now...I like you, have a hard time getting out of bed,and barely can hold on to my job! I do still teach a fitness class, but, it is a "walking class" (and thanks to Provigil,I) I can do this, as i have zero energy!! Not even too mention my jello legs! I used to teach 5 days aweek/ now I am lucky to teach 2 days. I dont know how much longer I can teach this walk is something I have done for 25yrs, and something I love, and very hard for me to give up!

    Anyway..I wish you well,thinking of you, and take care.

    Warm hugs, Sara
    BarbinWIS responded:

    Thanks for bringing this subject to the surface. I think!!!

    Most of us don't have a problem giving advise or just listening to someone with the need to vent. But, when this subject is brought up, we have a tendancy to clam up. I vent alot and give comments but this is a hard one for me, especially now. It blindsighted me in the last few weeks.

    Everything was going along just fine, then boom. I can't work. I have all I can do just to make myself a sandwich. Housework!!! That just doesn't happen right now.

    My Life Partner has been wonderful. His mother was over today and we had a nice chat. She is will to help me if I need. Also my son and step daughter are helping.

    Tomorrow my son is taking me shopping. I can't even drive. My legs wouldn't allow me.

    I don't like this at all. How do so many of us with MS handle this? I haven't figured this out. I am so frustrated and angry right now.

    playnice01 responded:
    Well, I don't know how a 2 year old post showed up today, but by the number of folks who have joined in the this current month and year, I'd say we touched a winner, here.

    Leave it alone. It seems to be re-educating and reconnecting people.

    my never humble opinion.

    AL0728 responded:
    This is a good subject. I am glad you dusted the cobwebs off the old post and brought it forward for discussion.

    As time goes by, it does seem to get harder for me to keep up appearances. (OT, but do any of you watch that British show "keeping up Appearances"?, I love that show.)

    At first I dealt with it by ignoring it, and told no one. Then as things got harder, I started sharing with my friends and co-workers. I found the vast majority to be sympathetic and not condescending. Then the falls started, at work no less, and I would just joke and laugh at myself with everyone.

    The worst was incontinence, both bladder and bowel. I was horrified at first, but all I know to do now is laugh at myself. I mean, I can't help it, so what else can I do? I have been going downhill the last few years and I am very lucky to have a great family support system, both at home and on this web site.

    I think talking about it rather than ignoring it has helped me most. It is what it is, I can't change it. I just look for ways to adapt. When the day comes that I cannot adapt anymore, I guess I will leave the workforce and start a new life. Lately it seems this day is coming sooner rather than later.

    Yes I have had to readjust some of my life goals, but it isn't a bad thing to reevaluate you life every now and then anyway. I try not to feel cheated by this disease, rather I try to look at the good things it has given me. Yes there are some good things. I value my time with friends and family more now, I value my walks with my dog more, I value the little things more in general.

    That being said, I am not the eternal optimist, I just try. But believe me, I have my down pessimistic times as well. Plenty of them. But, I try to bounce back from them by thinking of something good in my life. This doesn't always work, but then that's what my anti-depressant is for too.

    To sum it up, I think I have quit trying to keep up appearances, and let the chips fall where they may. The only time I fake it, is with my young nephew and niece, I don't want them to deal with it until they are older.


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