Sometimes the demons haunt us, don’t they? No matter how much we all try to stay positive, sometimes the fears seep in and take control. The most positive people become frightened and filled with self-doubt. I have found that life with M.S. brings with it these fears and unfortunately we can’t suppress them all of the time. The following is from a loyal reader, who fights daily to stay positive and strong. She’s a role model in her community and in her career, yet the demons are visiting. She asked that I share this will all of you to remind us all that it’s OK to be frightened and frustrated at times. Let’s give her our support !
I try to stay positive. I try to feel fortunate to have medications available that earlier patients with MS never had. I play by the rules, inject every night, rotate sites faithfully, record in the journal, re-order syringes on time, etc. etc.
I try to appreciate that I am apparently still in the early stages of MS, despite being in my fifties. I remember that I am fortunate to have a good job, with good health insurance. I know that I am blessed with enough strength to keep on working.
And I still send donations to the American Cancer Society and many other charities that solicit by mail, and I try to remember that what I have could be worse. I try to be grateful. I send as many prayers of thanks as I send prayers for help.
But sometimes the darker side of this chronic condition takes over, and I begin to resent that our diagnosis of MS results in a prescription that hurts, and one that we have to administer ourselves, for the rest of our lives. I cannot believe that they could not find a way to make this compound with a little dose of pain reliever.
And sometimes I wonder why we are just given the prescription, told to talk to a telephone nurse, and deal with this on our own …
I don’t like this side of myself … this is new, and has come with this diagnosis. I’m not typically a negative person … I’m not normally jealous of others. But I find myself realizing that people with other conditions get much more personal attention with their treatments … unless we’re on Tysabri, we get a monthly box of more syringes with more painful injections delivered by UPS or FedEx rather than by a medical pharmacist.
I guess I need a curt reminder to keep a stiff upper lip … and that is primarily what I do.
I never would have thought I would react this way to a diagnosis and treatment. I’m not happy with myself, and would not want you to think less of me for expressing these disappointments and resentment s. It feels safe to do so here.
I do want to thank all who have posted their concerns and questions here, as we have created a community of understanding by doing so.
Please tell me if you think that this is a phase that will pass. I don’t want to be a negative person … but I am really annoyed with the way ms treatments are handled, and annoyed with myself for reacting this way. I’m trying to be patient, as that is the me that I once always knew…
My heart goes out to you in a big way. I saw my own thoughts reflected in your words.
I want to tell you that you will eventually move past these feelings, but I can’t. The emotional roller coaster of living with multiple sclerosis is common to all of us.
I have relapsing/remitting MS, and along with that comes a relapsing/remitting thought process.
I am both positive and negative. Both accepting and resentful. I am grateful and jealous and angry and at peace. I have come to accept that all of these emotions are valid and part of the human condition.
Thank you for expressing your emotions — our emotions — in such a moving way.
You are completely normal. You will change your feelings about MS as often as you change your clothes. Nothing is written in stone, and your feelings will duplicate this notion. Don’t feel too bad about anger or jealousy or frustration. It will come and go and that’s okay. But so will happiness and gratitude. Embrace all of these feelings and don’t judge yourself too harshly……
Sincerely,
Jen
I hear you. I feel your pain all too well. Please be kind to yourself and allow yourself the space to grieve and to rage. You deserve it and you are allowed to vent and to feel frustrated. Feeling guilty for getting upset is a strange vicious cycle isn’t it? It just makes the whole weight of it that much heavier.
I was on Copaxone a while back and I remember all too well the bruises and the pain and feeling like a freak each night I had to self inject with that contraption. I keep telling myself how lucky I am that I have relapsing remitting MS, but still. This disease sucks. It sucks that I don’t know from one moment to the next if I’ll be able to trust my body. And it sucks that I feel like a horrible person for even writing this! I’m usually all about inspiring myself and being in the present, yada yada.
Anyway, I find that I get the most depressed when the fatigue kicks in. Because I feel guilty for not doing x,y, and z over the weekend — and then I keep telling myself to ease up, this is just your body letting you know what it needs right now. Argh!
Anyway, reading your words definitely struck a chord. Thank you for sharing. I feel a lot less alone.
-Renee
I think you just wrote what all of us feel. This does suck and it is not fair at all. I get jealous daily when I see women running. I get mad when I see healthy women being lazy. I cry like a baby when I don’t make it to the bathroom in time and feel like a loser when I buy pads. MS takes so much away from you — but it does not take away your right to feel exactly how you want to feel about it. That is your freedom. And if someone doesn’t like it or tells you it could be worse — i tell them to go scratch. Nobody knows how this feels until you have it. And it sucks. I loved your post — it sounded just like I wrote it as did the responses. Makes me feel not so alone.
[...] will take on the world hopefully for another decent 28 days. I’ll continue to stay strong, to fight off the demons we have been talking about this weekend, will focus on the positive and I’ll make every day count. I’ll wean myself off of bad [...]
I’m not even on injections and I feel that way a lot lately. It is very hard not to worry when you are not sure how you will feel from one day to the next.
I LOVED your post! It was honest and raw. I don’t care who you are, every single person on this Earth feels pain and frustration from time to time. I echo every other post on this comment. I have days, and sometimes moments when I feel like everything with my disease will be OK, and then I have days or moments when I think about which nerve in my brain will become frayed or worse, severed. Sometimes I wake up in the night, opening my eyes, only to see utter darkness. I search for a street light from a crack in my shutters. Already, adrenaline has shot throughout my body though. When my eyes catch the light outside, I thank God that I can still see. I try so hard, not to tell my husband or my family that I have these fears. I try to be positive because I know that it is the best way to live life for myself and everyone that I love. Still, MS is constantly knocking at my door. I am thankful for your post. It reaffirms belief in myself. It reminds me that it’s OK to be frightened. It sure makes me appreciate the light that is in our world.