Dec 112004
 

Disclaimer: This site is not a support site and in no way do I try to, or want to, make it that way. I’m sure I offend people and for that I’m sorry but not sorry enough to change. This blog is a glimpse into my life and my experience with MS. Read on but this isn’t a supportive post – you’ve been warned. 😉

I came across a post (and apparently so did Becca ;-), The I Hate MS Post (Removed, it is now a bad link 3/26/2012 http://www.thepinkbee.com/2004/12/i-hate-ms-post.htm) , and the post really just irritated the crap out of me (not literally 😉 Read the post if you want but it is really negative and mostly a bunch of down-in-the-mouth crap. I don’t mind a good vent once in a while (and certainly I’ve posted my 10 bad things about MS) but this just smacks of pity me I have MS my life is over. I know there are people out there who feel that their life is over, apparently this is one of them, but it’s time to get a grip on reality. These types of posts by MS’ers just further serve the myth that your life is over or has to take a 180 degree turn because you suddenly got diagnosed with a chronic illness. Furthermore, if you do become disabled get over it and get on with your life. No one wants to be disabled but there are so many awesome devices out there now there is no reason you can’t keep going on – even if the disability ends up in your hands like it may for me. I really like Katja’s philosophy (Bad link now 3/26/2012 but it was a good post http://brokenclay.org/wc.html) that by stopping doing the things you want to do you let the disability win. (I hope I did a fair 1 sentence overview of that) Overall this post just seems like an excuse for giving up. I’d understand a lot of worry, frustration, etc. for someone newly diagnosed (heck I was there) but she made numerous mentions of her diagnosis being well over a year ago.

  13 Responses to “Negative Posts”

  1. Erik, I usually agree with you 100%…but I’ve got to disagree this time. This Pink Bee person wrote in the first paragraph that she “likes her life now” and has “moved past the rage” but that there are “still things” she hates about MS.

    I’ve felt the same way, and I’m not looking for a “poor me” pity party by any means….I think she was just venting a little, and remembering a bit of those feelings of helplessness from the early days of diagnosis. Been there, done that. Now, if her whole blog is full of posts like that…then I would be bothered. But one post about the things she hates about MS? Certainly, we’re all entitled to make one of those every now and again.

    The only thing about the post that really bothered me was her anger at not being able to have kids, simply because she has MS. I wonder who told her that. It’s just not true. And if she has a doctor who put her on meds that are mutagenic while she’s still in her child-bearing years with no major loss of motor function…I’ve got to question that doctor’s practices. There may be more to the story, of course, but on just what the post said…that’s not right. I’m going to read more and see if there is something more there. The belief, still prevelant all these years after the “Baby M” nonsense, that women with MS can’t have kids is untrue….I’m living proof of it. And it bothers me that there are women out there who believe it, and live in heartache as a result.

    Thanks, Erik, for linking the post. It was food for thought….

  2. I’m afraid I have to take issue with you on a few things, Erik. First of all, Barrie (of The Pink Bee) was encouraged to make this list by readers of her site to help THEM get an idea of what one person with MS (not ALL people with MS) actually thinks. If you had read through the earlier posts, you would have seen this. In addition, I am becoming upset by the idea that if people express negative things about MS, they are somehow “not having a positive attitude” and that those who have said “positive attitude” are somehow superior to those that are still working through some very legitimate difficult emotions and fears. Who are any of us to judge how a person reacts to this diagnosis? Why does everything have to be happy sunshine all the time? There’s some good, some bad, it’s all worthy of discussion and if people don’t like it, they don’t have to read it. I also think it’s very offensive of you to put words like “Pity me I have MS my life is over” in Barrie’s mouth, that is your opinion of what she said and not what she said at all. I think we all blog for support in one way or another and I find your post to be the complete antithesis of that idea. Rather than cutting Barrie down, maybe you should have seen what you could do to help lift her spirits. That would seem to me to be the most helpful, particularly from someone whom I know has such strong faith.

  3. Becca,
    First, I am not attacking Barrie I am attacking the attitude. I have come across her in other areas and she seems very nice and very supportive. I wanted to take issue with her attitude because I find it unnecessary for someone who has had the disease a while. Furthermore, the post could be very damaging to a newly diagnosed person coming across it which just isn’t necessary.

    I can take a negative post and I have them occasionally – but this went to a core attitude about MS and not just having a bad day. There comes a point where you have to put on the big boy/girl pants and move on. I don’t feel superior the those who have a bad attitude – what I do feel is that those with the “bad attitude” due the rest of us a disservice with posts such as these. Furthermore, having that “bad attitude” is a choice – one that is very bad for your health and metal well-being. I’m not a hero because I get out of bed in the morning. As you said: “Who are any of us to judge how a person reacts to this diagnosis?” That is a little postmodern for my taste coupled with by having the disease (and probably a little more aggressive variant than average) gives me the license to evaluate reactions. She even said “And I really f@#!$% hate that that makes me sound whiney, pathetic and martyred.” Yet her whole post is “whiney, pathetic and martyred.”

    Overall this takes away from the rest of us who get up everyday and get on with life. Personally, I don’t have the time and energy to get beaten down by MS all the time.

    Her attitude on having a baby, potentially being disabled (“when the MS made my life not worth living I would end it”), having a relationship, etc. are all dramatics and don’t have to be that way. I’ve been meaning to post on having children so I should probably get around to that sooner rather than later.

    As I’ve said I give lots of leeway for those in early diagnosis. It is certainly a period of time when lots of things have to be sorted out and thought about that you didn’t expect to have to do. As I’ve said I was there and it is a very good thing I wasn’t blogging at that point – it would have been dark and bad. But I’ve had plenty of time now and have long since gone back to my routine and life.

  4. I usually don’t speak up… online in the blog anyways… 🙂 I guess I am more of a lurker, but I feel I must speak now.

    First, I hope Barrie and everyone else knows that Erik really was not attacking her. I think that the attitude that “gets his goat” is that MS simply ruins your life, and will make it un-livable at some point. No one can dispute that when Barrie says, “I promised myself that when the MS made my life not worth living I would end it.” To insinuate that because of disability your life is not worth living is so offensive and goes against everything we believe. Becca, you brought our faith up, and really Erik was being consistent. (Maybe he could have phrased his post nicer, and made it more clear that the attitude was the issue, not her vents or Barrie herself. Which we discussed. :-))

    Erik shares many things in common with Barrie, including that he does not wish to be pitied. He doesn’t like having things come up that he can’t do for himself, not having energy at times, and dealing with insurance companies. BUT, to encourage others that basically this makes life his life less, or that it is unworthy of living is not good.

    When people talk to me about Erik having MS, and they start saying how sorry they are, I remind them of how blessed we are, and what we do have. (During the hard times, I do it to remind myself!) I don’t think anyone has life go picture perfect, and you never know what life is going to hand you. Everyone has problems, everyone is going to have to suffer, and you never know what tomorrow holds.

    Barrie, I really believe that you can make this business work disabled or not if that is what you choose to do. Perhaps you have to take a smaller role than you once planned, and it goes different than you pictured, but you can do it. If you choose not to have children, fine, but make it your choice not something that you let MS take from you. Life is all about choices. And I do hope that you one day you will let yourself fall in love, and let someone love you back. There is nothing in this world I would not do for Erik. It is NEVER, EVER, EVER, EVER a burden, it is always my honor and my privilege to be his wife and to care for him in any way he needs me. I fully believe if I was left unable to care for myself and disfigured to boot, that Erik would still love me, and do the same for me. I wish you that kind of love.

    Sincerely,
    Brandy

  5. I haven’t read enough of Pink Bee to comment directly on the entry in question, but I’ll throw out a couple of thoughts.

    One, I’m way more optimistic and upbeat on paper (in electrons?) than I am in Real Life. That’s partly because negative posts are so easy to take out of context.

    Two, the kids and MS debate is amazing. I had three kids before I was diagnosed, so I didn’t have the luxury of agonizing about whether having children was the right choice. There are many, many people out there who are absolutely convinced that it is practically a crime to decide to have children when you know you have MS. Their reasoning seems to be either 1: there may be a genetic component, and you’re producing children who have a higher than normal risk of having a chronic neurological illness or 2: you’re going to be disabled, and it’s not fair to a child to have a disabled parent (you can probably imagine how I feel about that argument).

    If an MS diagnosis strengthens the conviction of someone who would already prefer not to have children, so what? On the other hand, why should a diagnosis (or other people’s prejudices) stop someone who really wants kids?

    Anyway, context is everything, and so much meta-data is missing in this medium. Barrie may just have been blowing off steam.

    Got to run and set up a friend’s computer now.

  6. You bring up some very interesting points, Katja.

    I had two of my kids before my Dx, and one after. I’m going to bring up a component of pregnancy and MS that is often overlooked: for most women, the majority of your MS symptoms go into remission during pregnancy and breastfeeding. I know it worked that way for me. I was amazed at how great I felt while pregnant. I’m still nursing my baby, and still mostly symptom-free (if only trigeminal neuralgia went into remission, too!). Many researchers are trying to determine exactly what it is about pregnancy and nursing that causes these remissions. Hormonal changes, perhaps? I don’t know. I can only say I’ve experienced it first-hand. And it bothers me that there are still women who think that having a baby when you have MS will make you SICKER.

    As for raising kids while disabled…I was raised, in part, by my grandmother. She was legally blind and completely deaf. I learned things from her that I don’t think I could have learned from a “normal” parental figure. I wouldn’t trade that knowledge for anything in the world. I think, as do many people raised by disabled parents, that it has made me a better person. I can only hope that my kids will feel the same way someday, too.

  7. I wrote a bunch of stuff but deleted it because you know what? Think whatever you want to about me; you obviously don’t read my site or you would know that that was a) a very unusual post and b) so completely from my heart that if I cared what you thought about me I would actually wish you ill but since you can’t behave with any Christian charity I will do it for you. Be well.

  8. From what I read of her post, it seemed like a big vent about something that scares her in her life. She was posting about what she hated about MS, which I’m sure you could do, too. And I don’t think she has an obligation to sound upbeat or optimistic for her readers.

    I don’t have a chronic illness, so I can’t relate on that issue, but I know that there have been a lot of times in my life when I’ve just needed to cry/scream a lot of feelings out. To a casual observer witnessing one of these episodes, it may seem that I’m a horribly negative person throwing a pity party, but that doesn’t mean that my attitude it so negative everyday.

    Just my opinion…
    -S

  9. Hi Erik

    I am an MS’er too. I was DX 3mths ago but had it for 1yr+. I read a few of your posts and like what you had to say. I didn’t like reading that I Hate MS post because gosh it’s not the end of your life or the end of having children. I am 30, female and have MULTIPLE diseases (MS, Crohns, Interstitial Cystits, Endometriosis, etc..)I work (part time)and plan on living a mostly normal life despite it all. I plan on having children and just bought a new house, have a good job etc. If you are over the Anger part of the diagnosis, then I would think you wouldn’t say all that. At times the diagnosis can be a blessing. It opens your eyes to the little things more. Makes you more compassionate and less materalistic (for me anyway). IT also forces me to determine what it is I really want to accomplish in life and start doing it!

    Vivid dreams – I only have vivid nightmares when I forget to take my pamelor at night. I take effexor during the day and have not noticed a change in my dreams because of it…only the Pamelor/nortriptaline.

    Antegren- I plan on taking antegren only because of 2 reasons. First, my neurologist is the neurologist in the US with the most patients involved in both studdies and therefore has worked closely with Elan/Biogen and the FDA. Secondly I have Crohns and Antegren/Tysabri is being studdied for Crohns as well so it’s a double whammy for me. I have not taken any other disease modifying drugs because my doctor is not sure how they will affect my other illnesses and my MS seems to only affect my spine right now and the ABC drugs don’t have much info on how they affect spine lesions.

    I too worry about the long term effects of Tysabri. I know the 2 year study is in fact complete but the report just needs to be compiled. Tysabri has been studdied for over 12 years but most of that was on mice and rabbits. One can only hope there are no bad long term side effects.

    Fatigue and awake pills – I suffer with daily fatigue. Some days it starts as soon as I wake up. I took Provigil and it gives you a fake awake to me. Behind it I still felt tired. I also tried amphetamines…talk about a drug high! I now know how those can become addictive. It gave me a king of the world high and then that afternoon I got a I want to kill myself low. I then tried the extended release amphetamines…made me sick too often. So now I rely on cold air, caffine and working only part time to make it through the day.

    Sorry to post such a long blog…

    Best Wishes
    Carrie in MI

  10. OK let me settle this issue. Barrie posted that post because I had felt that she was letting MS get her down and depressed where she maybe was feeling that she wouldn’t lead a “full life” .She was just having doubts anyone might have who has to deal with any illness that can derail or end your life as you know it. I worried she might let the depression get her down any feeling “weak” as a person. So maybe I prodded her to let her fears out a little , maybe admit the shit was getting to her so maybe she could vent it out and try to “move foward” again as she has been. Barrie is a very good person and she tries so hard to be positive that deep down things sometimes makes her emotionally drained or maybe feeling hopeless. It’s not just the MS, it’s the abuse /up and down relationships with certain people in her life etc. with DTD , etc. She just wants a “cure” , who the fuck wouldn’t? Some people , whether it’s MS or financial issues etc. want as much security in their lives as possible. Now does life with MS promise better things or potential worse things? Of course MS causes fear at times of the future which we all have at times. Barrie just has moments of doubt and depression and is trying to deal with it instead of letting it control her. Let her vent. Let Erik vent his frustration as well. Everyone fucking meant well, everyone is trying to deal with their pain in their own ways. I want to see people like Barrie be happy because she deserves to be, she is a great girl. You guys should all be friends and support each other. Isn’t there enough negativity going on without creating more?

  11. I’m not disabled, I don’t have MS, but I do work with disabled people, folks who can’t read standard print due to physical disabilities, visual impairment, blindness, or learning disabilities. Some of our library patrons have MS to the extent it affects their ability to hold a book or turn pages.

    I’ve been reading The Pink Bee since the summer, tho it might be earlier that I found it. It took a couple of weeks worth of reading her daily posts before I even discovered she has MS. She doesn’t dwell on it in her blog. I got hooked because I like the layout and I enjoy reading about the dogsitting and I like her writing style.

    We all get frustrated. Our blogs allow us to vent in a rather public way and get feedback if we allow comments, and maybe some support. I blogged about a recent medical procedure I’d had, and if the results had been other than what they were, I would have blogged about my fears in that regard. Some folks will comment negatively, but that’s a risk we all run by being so public. And we can even blog about each other. 😉

    I think you took the Things I Hate About MS post out of context. It’s not indicative of the tone of The Pink Bee. I wouldn’t still be reading it if she wrote post after post of “Oh, poor me, I have MS.” I appreciate reading what she has to say about MS, same as I appreciate seeing what you have to say about it. As someone who works with disabled people but is still someone on the outside, I can gain some insight re: the people I work with, the sort of things they go through emotionally as well as physically. And a little understanding of differing views can go a long way.

    Barrie isn’t setting herself up as Poster Girl for MS. Don’t expect her to post as if she is. 🙂

  12. I can see everyone’s side on this. I can understand Erik’s for I too don’t want to hear the “why me” of MS. But I support Barrie’s right, as the owner of her blog, to post what she wants. I started to read the post, and made a choice not to continue. I can understand Erik’s irritation if that was the tone of the entire blog. But from what others have posted, it’s not.

    There really isn’t a right or wrong. Everyone deals with MS (theirs and others) in different ways.

  13. I was diagnosed with MS about 7yrs ago but I have had it for about 10….I am now going on 27….so just imagine how I felt…well…I kept strong and have a different outlook on life because I believe that while i may have a disability I am not disabled….for all of you reading please remember that and stay strong. And I will have children becuase if everyone thought that if they have a disease or have certain diseases from there heredity that is there then who would ever have children…NOONE….Whether it is cancer, diabetes, kidney failure, etc….everyone should be able to have children if they want to no matter what, thank you for your time.

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