Not feeling like the "strong person" people assume me to be…

Home Forums Newly Diagnosed and ‘Limboland’ Not feeling like the "strong person" people assume me to be…

This topic contains 16 replies, has 5 voices, and was last updated by  Trina 7 years, 10 months ago.

Viewing 15 posts - 1 through 15 (of 17 total)
  • Author
    Posts
  • August 4, 2011 at 12:50 pm #6426

    ThePerfectStorm
    Participant

    Hi!

    I’m new to this Forum and possibly new to MS. I say possibly, because all signs point to an MS diagnosis, but yet they are still putting me through tests and eliminating other potential illnesses. I guess I should have known that the “multiple” in MS would refer to ALL aspects of MS, including diagnosis, symptoms, ages, doctors, tests, etc.

    I had Optic Neuritis 6 1/2 years ago and got my sight back in 14 days following 5 days on IV steroids. Brain MRI taken two weeks later showed results of 2 lesions not “typical” of MS (is there anything typical about this disease?!). Yeah for me and the lucky break of being able to pretend to continue to lead a “normal” life. I was grateful that it hadn’t been an instant outcome that I feared, as I hadn’t even started my life yet, but I always has the uneasy feeling that there was more, and much more, to come. I decided to take part in raising awareness and funds for hopes of finding a cure to this illness by participating in the Supercities Walk for MS each year since.

    Last year after delivering my second child, strange symptoms started to happen to me; I was 3 months post-partum with two babies sleeping 10-12 hours straight, but I was exhausted! I don’t mean the typical fatigue with being a mom, but exhausted like I’d ran a marathon (which I never have), to the point where I couldn’t remain safely awake to tend to my babies. I got angry and upset when I attempted to lift my baby, and couldn’t. I knew this was not normal, and not baby-related. So I asked my family doctor to push for a visit to the Neurologist having been 5 1/2 years (at that point) since the Optic Neuritis.

    The week of my baby’s first birthday this year, I had two MRI’s; brain and cervical spine. Again, results of brain indicated some lesions, but not really of MS standards (whatever that is?!). However, that Neurologist was shocked to see the lesions on my spine, literally in the spot where I’d been feeling this horrible lightening shock of pain radiating down my body from. He requested blood work to elimiate like-illnesses and past me onto the MS Clinic for more insight.

    So here I am now, having just this past week seen another Neurologist (or two) since the last, and they are saying the same thing: “It’s impressive that there aren’t more lesions on the brain, but that your symptoms indicate otherwise; not to mention that you have spinal lesions and have had Optic Neuritis”! I’m so happy that I’m getting everyone excited…but really? What is happening to me! I had my evoked potential test yesterday, so I’m unpatiently awaiting my results (three weeks away) along with the blood test results for a rare disease called Devic’s Disease which seems a little too similar to what my MRI’s are indicating.

    It’s really hard keeping it together for everyone around me; especially when there is no where to hide and just be me. I have two young babies to thing about, a husband who let’s face it, has no desire to be a single Dad with all the burden, and family and friends who believe they are being supportive by now reverting to treating me like I’m 5 and can’t think for myself. I’m suffocating and I’m not getting the chance to “deal” with all of this…how will I ever know what the right treatment options are when the time comes with so many people in my life to consider?!

    Sorry to vent, especially cause I’m new, but no one in my life seems to understand and want to support me through this the way I need. They all say that I’m tough and I’ll make it through…but today, it’s just not that simple.

    August 4, 2011 at 2:44 pm #6676

    Trina
    Participant

    Hi ThePerfectStorm. I can relate to your post. I also had a young family when I was diagnosed two years ago. You’re trying to struggle with all your feelings, your worries about the future and still be a wife, a mother, a friend. It’s really hard. I muddled through that time somehow. Today, I feel like I’ve reached an uneasy, fragile peace with it all. I still have negative feelings about it, but those feelings are less intense. I still have bad days where I get locked in my own mind about it, but those days are starting to become few and far between. Being treated like a child, I understand that too. It added another layer of frustration to an already difficult time. It still happens to me, and still makes me angry. In the end, I don’t really have any words of wisdom for you. Talking about it has been helpful for me. I have a friend who used to work at the MS Society in Ottawa. It has been helpful for me to talk with her about it because she understands the disease. Writing about it and visiting sites like this one to meet others who understand, has also been helpful to me. Hopefully it will be helpful to you too. I wish you all the best.

    August 4, 2011 at 3:34 pm #6677

    ThePerfectStorm
    Participant

    Hi Trina!

    Thank you so much for that and for sharing your experiences. I think taking a chance on this forum was good for me; i handle things better by talking about them, more so with non-judgemental ears. I find that people that know you personally tend to be too biased to be objective in their listening and unsolicited advice, but sometimes another person in your similar situation, can be the perfect friend in hard times.

    Do mind if I ask you, did you know that you had MS before you started your family? Did you having MS stop you from having more children? I have two, both were before the official diagnosis period, but after the Optic Neuritis where I thought there was a chance in life that this could happen. I really, really want more, but had such a horrible time after my last, that no one (including my husband and family) is supporting this. Logically I understand, but I’m so broken hearted about it that the added stress of never having more is not helping me cope with the MS either. I just wish what everyone does…that there was a cure and that none of us would have been faced with all these life challenges. I’m still hopeful though…

    August 4, 2011 at 3:49 pm #6678

    Lelainia
    Participant

    I too was tested for Devic’s when I was going through diagnosis. If you have long stretches of spinal lesions, along with ON, these are hallmarks of Devic’s and since it can’t be treated with MS drugs, (and really is quite serious) they will want to rule it out. I have the extensive spinal lesions, but my brain is clean and (touch wood) I’ve never had ON. My test came back negative. I hope yours does as well.

    I am wondering if you are connected with an MS support group? I don’t know where you’re from, but my chapter has one for younger people and I’ve found it extremely helpful to get to know others who are going through similar circumstances as I am. We really have been able to support and empower one another. I’ve written about my experience, which will eventually be posted on the home page of this site. I can’t say enough positive things about what my group has done for my morale.

    Hang in there. Hopefully you will have an answer soon.

    August 4, 2011 at 4:10 pm #6679

    ThePerfectStorm
    Participant

    Hi Lelainia!

    Thank you for sharing and your words of support! I hope so too that it isn’t the Devic’s Disease, but then, I secretly hope it’s not MS either! I guess I can’t live in denial forever and that these symptoms are very real, so I am looking for the definit relief of knowing what’s going on with me.

    I will definitely look into the MS Support groups, maybe even counselling to set me on the right path from the beginning. I don’t want to lose focus on remaining strong and positive when it’s so easy to cave and feel sorry for myself. I have to think of my little ones and how important it is to them to have a healthy strong mom to be there for them for many more years!

    I will keep you all posted of the results in a few weeks! Thanks again for the warm welcome!

    August 4, 2011 at 4:39 pm #6680

    Lelainia
    Participant

    Don’t be too hard on yourself-it takes about a year to start to come to terms with a diagnosis. In the first year there are alot of ups and downs, even if you’ve been dealing with symptoms for a long time. Once you know for sure, there’s some grieving that you go through and often, it comes in waves. It’s normal to have days of feeling like you can cope and things are almost “normal” and then days when you feel sad or angry and coping is hard. It’s a process of learning just how much room you can safely give MS in your life.

    It IS imporant to stay postivie, but if you have days where that feels impossible, cut yourself some slack. Finding someone to talk to, who can listen without judging or trying to “fix it” can help you cope.

    My MS chapter has a peer support program as well, where they match someone who is newly diagnosed with someone who has been dealing with MS for awhile. The connecting is done by phone. My peer support person was invaluable to me during that first year. Our self help group hadn’t been formed yet, so I called her as I need to to vent about what was happening or to ask questions about her experience. She was a lifeline for me, especially since at that time, I didn’t know anyone who had MS.

    I am glad you are here.

    August 4, 2011 at 4:51 pm #6681

    Trina
    Participant

    Hi there. No, I don’t mind sharing that info. At the disease onset in 2008, my son had just turned two and my daughter was four. I know that feeling about wanting more children. My husband and I talked of a third, but no decisions had been made. I had such a strong desire for another baby after D was born. In the end, we made the decision to only have the two. It didn’t have anything to do with my health, because at that time we didn’t know what was wrong, it was just what we decided would be best for our little family. Everything was all taken care of (so to speak, ha ha) and I received the pending diagnosis two weeks later. I know of people (friends of friends..that kind of thing)who have MS and have had successful and healthy pregnancies. It is a difficult and personal decision, to be sure. There are many things to consider. I guess in the end you need to do what is right for you and your family.

    Lelainia, I am envious of your support group! After my diagnosis, I didn’t want to know anyone with MS. Gradually I became ready meet others, but the support group of my local chapter seems to cater to people who are much older. There had been some talk of a support group for people in their 30s, but as far as I know, nothing came of it. Something to look into again, I think.

    August 4, 2011 at 5:08 pm #6682

    Lelainia
    Participant

    Hi Trina,

    I have to tell you, my group of girls is the BEST thing that happened to me because of this disease. I can’t wait till the blog post I wrote about my support group gets posted. The beautiful thing is that we’ve learned so much from one another and everyone has “shown up” for one another, unfailingly.

    I would strongly encourage you to talk to your local chapter about getting a group started for younger people. If you build it, they will come! We meet in the office space of our chapter once a month on Saturday morning and the Society provided us with a moderator, who has a counselling degree and is volunteering. They chose to do this because when our group was formed 2 1/2 years ago, it was made up of people who had been diagnosed within the last year or so (at the time) and they felt we would benefit from added support. Our moderator is excellent and really, just there to support us-our meetings are really self driven.

    Our group ranges in age from 23-41. I think that some of the more established groups could be really overwhelming for someone younger and newly diagnosed because the members tend to be(in general)in varying states of advanced disability. I think it’s important to have a group where you can relate to the stage of life (age wise) other members are in, in addition to being in a similar stage of dealing with MS.

    August 4, 2011 at 5:24 pm #6683

    MiyaTsu
    Participant

    Hey ThePerectStorm,

    Although I am only 21 years old and am not a mother yet, I can understand how you must be feeling. I have many women around me here in Germany that went through the same thing when they became mothers with MS. My doctor told me that after or during a pregnancy a MS COULD get worse OR better. And things like that also happened to those women I told you about. Two of them started to have more relapses in shorter time lags the other two had fewer in longer time lags after their pregnancies. For me this means that I simply don’t know what will happen to me when I will have a child. But I decided that this alone will not prevent me from becoming a mother. I met so many women who made it even though their MS got seriously worse after being pregnant. You shouldn’t let your MS control your life to the extent that it will stop you from having another child if there are no other reasons to not get pregnant again (like financial issues). I mean, in the end it’s your decision and it’s not my place to tell you what to do. But MS should not stop you from living your live to the fullest, that’s my opinion and I live by it everyday.

    Good Luck with the results!

    August 5, 2011 at 3:53 pm #6684

    ThePerfectStorm
    Participant

    Hey All!

    @Lelaina – thank you for all your kind words and support; the suggestion to seek group support sounds like a great idea and I will try to work it into my already busy life. Especially since it will help me to cope! Thank you for reminding me that there are good days too, cause I feel so guilty for feeling so selfish about the news. I even started to wonder if we should sell our dream home now and move into a place that is only one level with wider doorways for wheelchair passage…even though it might never be necessary. I don’t know what IS expectable at this point, so I’m fighting internally with being proactive “in case” that is my outcome, or wait it out until it is absolutely needed. The waiting would only mean that I would be disabled and not able to help with such a move…so being proactive sounds smart. On the other hand, that’s expecting the worst, and what if I never need to move and move away from our dream home. Too much emotionally to take on in one week…but still, I’ll bet all of you went through these thoughts too. Did you make any large life changes since diagnosis?

    Trina – thank you for sharing and you are so right; there is so much more to the decision, but this makes me sad too to think that my husband will not budge on having more because of my illnesses (i also got diagnosed with Fibromyalgia this year). It’s so frustrating, but it helps to know that other mom’s faced these tought decisions too. I just wish I could turn off the biological clock that is bugging me to have more when it just logically doesn’t seem necessary! I hope you find your support group soon, but in the meantime, I’ll be here for you too if you need another ear!

    MiyaTsu – Hi and thank you for your post! You may not have kids yet, but they will be in your future too and your worries are no less important than my own, so I appreciate your thoughts. I guess everything just seems so complicated right now, because it isn’t one person’s decision to have a child, it’s many in my case, as my husband would have to be on board and because of our work, my mother (and family) be willing to be there to look after me, the two I already have and the future baby (or more if there are multiples, yikes!) so it’s a huge burden to everyone to make me happy. I don’t want to make a selfish choice, but to make them all happy, would mean me sacrificing my heart on this issue. When did you find out you have MS? You are so young…but you DO have your whole life ahead of you with wonderful things to come! Although it is never a good thing, in this case it might be a blessing that you found out about the MS first, cause whomever you meet and marry will love you as you are now, and you will have them to look forward to and your future kids which will always be happy positive things to look forward to! Best of luck!

    August 5, 2011 at 10:50 pm #6685

    Trina
    Participant

    *trying to cope (A few posts back…writing fail. Ugh.)

    We’re leaving on vacation, but I wanted to write you before we left.

    @lelainia. I agree about the ups and downs, waves is a good way to put it. I’m more stable now, mood-wise, but I remember that first year. There were weeks where I felt like “I can do this” and then I would sink into despair for weeks and think “I can’t”. Usually the low times were triggered by something physical. I took a pounding during my first two relapses and for the first year after diagnosis, any numbness or twitch would set me off into a panic that it was starting again.

    I really will look into my chapter about a younger support group. I think it’s time for me. I feel ready now. I’m so happy that you have a wonderful support system where you are. That’s such a gift.

    @theperfectstorm. No, no life changes for me. I decided early on that I couldn’t live that way. We still live in our two-storey house. I know it is still early days for me, but I do everything that I did before and then some. I’m very lucky because although there is disease progression in the brain, right now it is non-symptomatic. Physically, these past two years have been good to me. I can’t complain. Your situation about the children is so very difficult. For me, personally, the farther I got away from those baby years, the easier it was to let them go. So in the end, the decision to stop was mutual. I can imagine how heart-wrenching it must be to want more when your spouse doesn’t. I truly wish you all the best with that. Thanks for the offer to listen. I try to be positive about everything, but I still have an underlying anger that I need to work through. And some complaining to do. Ha. I will check back in after our holidays. Take care everyone.

    August 6, 2011 at 11:46 am #6686

    MiyaTsu
    Participant

    Hi ThePerfectStorm,

    I was 19 years old when I got diagnosed and in the middle of my final exams to get my Abitur, which is equivalent to your A-Levels. You know, I may have a wonderful life ahead of me, but getting diagnosed didn’t mean that people I knew before that changed what they where feeling towards me. MS does not change who we are, it just changes how we live our life and you should make that clear to people around you. And my life will not always be happy-clappy and positive. I still have an illness and I will encounter enough struggles in my future, but I refuse to let it control my life.

    It is true that it isn’t just your decsion alone to have another child and that you’ll need your family to decide with you and support you. But you shouldn’t see yourself and your MS as a burden for everyone. It is possible to have a full live despite MS (I don’t know about Fibromyalgia though…) and you don’t need to be MADE happy, you can achieve that on your own. All you need to do is to accept your fate and make the best of it. Of course it is hard, but you can do it. I met so many people who had MS most of their lifes and maintained a high living standart despite all struggles they encountered. And you have two children, I think you have already proven to yourself that you have enough will and power to make it. Just keep going, it’ll get better! And by the way, even a totally healthy person cannot make everyone around him/her happy and has to be selfish sometimes. You shouldn’t put yourself under so much stress and pressure. The first and most important things in your life now are you and your children. And with your husband and family I think you can do it, but you have to accept that you have to cut down a little bit to cope with your diagnosis and find out where your limits are. And when you know, it’s no shame to ask for help. I had to learn that the hard way when I started university.

    August 6, 2011 at 1:03 pm #6687

    Michi
    Participant

    Hello ThePerfectStorm,

    in your first post you said, that you are treated like a child. I know this feeling, at the beginning (a few weeks after the diagnose) my family treated me different, but after I told them that I can do things by myself they slowly treated me normal. Maybe if you try to explain youre situation it becomes better?

    Now I have the same problem with my friends, sometimes they try to decide about me because they think I am not able to do it alone. I always told them that I can do it but nevertheless they don’t give up. I don’t know what I can do to make that they listen to me,….

    I am 17 years old and my diagnose I got with 13, I am afraid to visit a self help group, because maybe I see what in the next years can happen with me. There weren’t people in my age,…

    And bcause of that Iam lucky that I can write with you, because you understand the problems ,….

    August 9, 2011 at 11:53 am #6688

    ThePerfectStorm
    Participant

    Good Morning Everyone!

    @trina: thank you as always for the thoughtful responses and for opening up. I am completely with you on the anger and needing to work through it…although I’m starting to accept that maybe that won’t go entirely and that’s not necessarily a bad thing. As long as we remember that this is out of our control and that is why we’re angry instead of taking it out on everyone else, then I guess a little temper tantrum at all ages is fair! Have a WONDERFUL vacation and check in once you’re back!

    @miyatsu: You are very insightful for someone so young. I think you will go very far in life with such a beautiful attitude towards even the toughest circumstances! You are right, and after my first week of self-pity post-diagnosis…I’m starting to feel SO much stronger about my two munchkins and wanting nothing more than to protect them from all of this! I look forward to doing so much more with them while I can and that time is too precious to me. On another note, my youngest has conveniently stopped sleeping past 4am…so I’m pretty certain I no longer want to do this with adding more children! lol! It hurts, but I’m lucky I at lesat have two that I love. Asking for help is not so bad for me, but it’s accepting it that gets a little tricky! Sometimes the “help” is done their way and not my way, and well, that’s sometimes so frustrating for the “A” type personality that it causes me unnecessary stress which as you know reaks havoc on our symptoms flaring up! I hope that your University life will be easy on you given all you’re going through; just take it one day at a time.

    @michi: Hi and good to hear from you! YES! Annoying how no matter how old you are, if you show any uncertainty about something, everyone decides to take control of your life for you! As if! But seriously though…it broke my heart to read your post; I know that so many people have MS, but it still shocks me to hear when someone so young is diagnosed. It’s no fair to anyone, but especially to those of you still so young with a whole world ahead of you. But, the fact that you have the strength at such a young age to have the courage to speak out and speak to others with MS, is a sign of positive inner strength. You will definitely need this for all of life’s challenges, but hopefully this diagnosis was the worst you’ll ever have to be faced with. I guess I can understand the need to “nurture” those of you who are so young, but then there are limits to tolerance at that crucial teenage age! It’s scary for us to know we have this disease, but at least we know and feel the pain and understand how this will affect us. Those around us that don’t have it, can’t possibly imagine, and therefore assimilate the best way they know how, which is somewhat overbearing. It is hard no matter what age to explain to our elders how we feel and what we need, cause that old saying “mother knows best” always gets in the way. Being a mom now, I’m starting to see how independant my kids are already even as babies, and how much it kills me when they are hurt, as though I’ve failed them. Maybe our parents and family feel like they’ve failed to protect us, even though this was never in their control. As for your friends, I’m sorry they are stressing you out, but think of it from another way if you can. At least they didn’t abandon you in the face of your illness! Maybe it’s their way of showing you how important you are to them, but doing things for you, even though you can. Maybe they don’t doubt that you can, but rather doubt they could live with themselves if you weren’t able to, so they don’t want to find out?! I know it sounds nuts, but it’s possible. I lived that with a friend from her really young years as she was born with a rare illness (not MS); but now although she’s learned to live with her limitations, I admire her for never yelling at anyone who did things for her, but let them do what they needed to do to feel better about being helpful, while she still learned and now does it for herself. If you are not comfortable with your group, then yes, use this as a tool to chat with others who understand what you’re going through! Hope this helps!

    August 26, 2011 at 11:44 am #6689

    MiyaTsu
    Participant

    Hi prisoneroftoday,

    I’m glad that life is brightening up for you, keep going I’ll root for you!

    I know your kind of problem with the “A” type personality from my own experience. When you decide to let people help you, they sometimes do it completely the other way round of how you want them to do it. And then you come to the conclusion that it’s better when you do it yourself. I solve this by showing people how I do it and then I ask them to do it the same way at least when they’re helping me. And next time I need to ask for help, I remind them of how I usually do it and 95% of the time it’s working out ;)

Viewing 15 posts - 1 through 15 (of 17 total)

You must be logged in to reply to this topic.