Why me?

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This topic contains 10 replies, has 6 voices, and was last updated by  robert j 6 years, 7 months ago.

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  • October 23, 2011 at 2:54 am #6447

    Meghan
    Participant

    Well, I was surfing the web for info on depression and MS and I came upon this amazing site. I can’t believe I am actually typing something on here. I was diagnosed three years ago I think. I have tried as hard as possible to ignore this whole thing, but I am becoming more and more miserable. My husband, brother, mom, dad and grandmother know my secret. My two kids, who are 15 and 12 don’t. I have know idea how to even begin to explain this. And three co-workers know. I had to tell them when it was just too exhausting to lie about why I couldn’t do certain things sometimes, but other times I could without hesitation. I am so lonely it hurts. Maybe this isn’t the place to talk that this, but I can’t help it. I have never met another person that I know of that has MS. I have lost contact with the friends I did have because I am embarrassed and don’t want anyone to know. It is hard to explain to people because they can’t see anything wrong with me, it is mostly inside stuff. I limp some days, which is easy to see. But they can’t see the “hug”, the numbness, the fatigue, etc, etc. I can’t walk more than a block or two before I feel like I just walked up Mt. Everest. It takes all my strength just to hold my body up. And Lord help me if I have to pee! I have to concentrate so hard on just putting one foot in front of the other that I can’t hold it! The frustration is just making me so miserable. My home life is becoming very strained as I am angry at everyone all the time for no reason. I don’t want to go the doctor because I feel I should be strong enough to get my head in order and just accept this all, but I don’t think I can. I am afraid the doctor will try to get me on anti depressants or some other weird drug. Like I said, I am not sure how long it has been since I was diagnosed. I think around three years. I honestly couldn’t tell you what time of year. I remember I was alone and left crying. Then my doctor called me at home that evening to apologize for having to rush me out the door and suggested some websites to look at. And that was it. At first I went to the MS Clinic in Victoria, BC. But each time I have gone I have seen a different doctor and all they do is make me walk a bit, touch my nose and check my reflexes. Then they try to convince me I need Copaxone or something. I tried Copaxone for a month and it was disastrous. I am terrified of needles and have been my whole life. One a day was not in the cards for me. We used to joke when I was a teenager that if I died of a intravenous drug overdose, they would know it was foul play. And then I find out one of my only options is needles. Well enough of my pity party. I just finally had to say something to someone. All the pictures of on this site of smiling people, make me wonder why they are smiling? I am terrified of the next day, everyday. How on earth does anyone every accept this? Any suggestions? I am so resentful to everyone I see walking and having fun. Why can’t I just be normal again?

    October 23, 2011 at 2:56 am #6824

    Meghan
    Participant

    PS, I think I am “young enough” to be on here. I am 32. Thank goodness I had my kids early, cause Lord knows I won’t be having them now.

    October 23, 2011 at 6:10 am #6825

    Anonymous

    Hey Meghan

    I have felt sad and very alone when I was diagnosed but not angry. I found out about my MS about 1 year ago and thus I am still figuring out ways to manage this disease so I cannot say that my journey is this area is really figured out as of yet. After my diagnosis, I wanted to know as much about MS and what I was up against since my doctor could not fill in the holes that day when she informed me of the MRI results. I cried as I read 2-3 books on MS cover to cover (one was a medical based textbook on MS). What initially bothered me after the diagnosis was the lack of appreciation people around me had for the good things they had in their life. The fact that they had many positive things but never really stopped and “smelled the roses”. I took some time to appreciate the small things in my life because they were the positives at the time. I now sometimes feel a great sense of frustration when I experience MS symptoms.

    After my diagnosis I initially did not want to talk about my disease in relation to my career. I have always been open with my friends about things and it certainly has changed a few friend relationships but my true friends have been extremely supportive. As of late, I have been more open about my disease even with colleagues. There is no shame in having MS and if you are able to open up with the important people in your life, you might be surprised at the support network that may develop. My friends provide me with an alternative perspective to my own and they help me even when I have a hard time asking for it.

    I know the injection based medications are difficult but it might be useful to find a neurologist to see regularly. There is an oral medication available now and it might be useful to look into its availability in your area as an alternative to injection based choices. I know everyone has different perspectives on medications and their use but for me its always important that I do what I can to help myself stay as healthy as possible (and so I am taking copaxone eventhough I am not a fan of needles either–the medication was more important to me than the dislike of needles so I got over it). The MS clinic in my area offered me other services as well to try and help me adjust to the disease. The MS society in my area was supportive as well when I contacted them and inquired about some of their services.

    Although the last year of my life has been difficult, there have been happy moments as well. So when things are hard I feel frustrated and manage but during the the rest of my time I am happy and appreciative of the life I am living in the moment. I hope to reduce the periods of sadness/frustration as I continue to learn how to manage my relapses. The future is a hard one and I choose not to focus on the negatives as there is a 50/50 chance that things will be the same as they are now–manageable.

    I think reaching out to chat is a great step. I find this website helpful since it provides a wide range of perspectives and support. Keep talking and communicating and maybe it will be easier to ask for support from your loved ones. As well keep trying to work through this (even when you fail) and eventually you find a will to succeed. I don’t think its an easy road for any of us; all of our life struggles are different and individual even with the common theme of MS that brings us together on this website.

    Hugs–cause I think they help spread some of the positive support.

    October 23, 2011 at 11:12 pm #6826

    F.U.MS
    Participant

    Hey Meghan,

    I can honestly say that everything you are going through will pass. I’ve had MS since 1998. I have gone through ALL of the things you are going through. The three year mark was the worst for me and it still took me another couple years to really start living again. I hated needles as well and still do, but I take my Rebif shots three times a week because I’ve never felt better physically and mentally then I do these days. I’m 36, I have an 8 year old and a 5 month old. 10 years ago I felt all of the feelings you talk about. I was embarrassed to tell people I had MS. I couldn’t walk for more then 10 minutes without having to sit down. Only a select few people knew. What really helped me was talking. I went to see a Dr a couple times a week and he did put me on anti-depressants. I took them and I hated taking them. I needed needles to keep my MS at bay and I needed pills to keep my mind at bay. I also needed more pills because I couldn’t sleep because of the needles and pills. I was a mess. But it passed. Everyone’s story is different hear but we are all in the same big crappy MS boat. Talk to someone and try to leave it at the doctors office. Then go home and enjoy your family and friends.

    October 23, 2011 at 11:39 pm #6827

    Meghan
    Participant

    Thanks guys! I now you are right in everything you have said. Yesterday was a horrible day for me. Just out of the blue I was so sad. But I got out of bed this morning and out of the house. Did some shopping therapy and now I feel way better. I bought a beautiful leather bound journal and I am going to start journalling again. It is such a wonderful release for me. I don’t know why I didn’t think of that sooner.

    October 24, 2011 at 10:45 pm #6828

    Lelainia
    Participant

    Hi Meghan,

    First of all, I want to say that I am really sorry this experience has been so painful. I think any number of us can relate to how you’re feeling. The adjustments you have to make when MS is changing the way your body functions are huge and there are days when I know I felt like I was reeling from the blows MS has dealt me.

    I have one son and he was 16 when I was diagnosed. I explained to him in simple language what MS was. I offered him some of the materials the MS society has for teens with parents with MS, but I don’t really know if he read any of it. I figure if he wanted it, he had it and if not, that was okay too. To be honest, I don’t think it made much of an impact on him or changed our relationship in any way. Teenages are pretty much self absorbed, but I wanted to let him know the lines of communication

    were wide open if he wanted to discuss it.

    It must be incredibly hard to feel like this is something you need to keep secret. In my case, I chose to only tell my “sacred circle”-my closest family and friends for the first year and a half. There was so much I was dealing with, I felt I didn’t have the time or emotional energy to deal with anyone else’s feelings about what was happening to me. I needed time to adjust and get stronger before I shared it with others. (I wrote about this for the blog here, if you want to read how I handled it. You can find on the main page in past posts.)

    You said you don’t know anyone else with MS. I was the same. I felt it would be helpful to have someone to talk to, someone who also was living with MS, so I called the MS Society and they were able to match me with a peer support person. She was wonderful. She would call me to check in or I would call her when I needed to talk. She’s a bit older than me and has lived with MS for some time, so she was able to answer some of my questions about MS, the drugs, coping strategies and things like that. It helped me feel less alone and as I got educated, I felt less overwhelmed. We’ve become very good friends and I plan to meet her this week in person, after 4 years!

    The other thing I did to help myself was I joined a younger persons MS support group. I can’t tell you how much this changed my life and my ability to cope. The people in my group are all 20-40-ish and we were all diagnosed around the same time. I just wrote a blog post about my self help group experience for the blog, which again you should be able to find on the main page, on the side bar under recent posts. It’s titled “Strength in Numbers”.

    I have had alot of ups and downs with treatments too and it takes time to figure out what works for you and how you are going to manage the day to day grind of taking medications. I can’t say I am a fan of needles either. I am on Copaxone, after trying other drugs. The needles have become not such a big deal. i use an auton injector, which helps me deal.

    I live in the Lower Mainland, so we’re almost neighbours. I am glad you found the website and I hope you will visit often and get whatever support you feel is helpful for you. I’m glad you were able to get out yesterday and have a better day. It’s not ALL bad days, but when you’re in the middle of a rought patch, it sure can FEEL like it!

    Hang in there!

    October 25, 2011 at 3:26 am #6829

    Meghan
    Participant

    Thanks for the kind words. This place is awesome. I really enjoy reading everyone’s posts. I feel way less alone now that I have some contact with others like me. We have a group that meets once a month but in the morning while I am at work. i think I should just do something for myself for a change and book that day off work every month since I am able too and just go.

    It would be neat to have a younger group. Maybe that’s something I can look into or help organize. It would probably have to involve other communities, but I bet something could come together. I should contact our local group and see what they have to offer. I tried the auto injector once and I pulled out before I counted to ten because I didn’t mean to push the button and scared the crap out of myself. The the medicine squirted all over. lol, it was a disaster and hurt like heck. That was the last time I went near a needle of any kind. But, I have been starting to consider trying again. A little prick is way better than all the “what ifs”. I have found a hypnotist in the Valley here who helps people with fears, and has cured quite a few local people of needle phobia. Today was a good body day and I just know I am going to have a good sleep tonight. I hope you all do too.

    October 25, 2011 at 5:16 am #6830

    Lelainia
    Participant

    Hi Meghan,

    I think if the your local chapter knows there’s a need for a younger person’s group, they can help you arrange one. My chapter set ours up for us. We meet at the chapter office once a month on a Saturday. Because most of us were newly diagnosed when the group was launched, they felt we could do with some added support, so the chapter arranged for us to have a moderator. She’s a volunteer who has a background in counselling. They chose her and she volunteers her time with us. She does not have MS, but acts as our time keeper and helps any way she can-making sure we have coffee and snacks, collecting the RSVP emails for monthly meetings, etc. She’s super nice and we’re very lucky to have her.

    As for the needle thing, it does take a bit of time and practice. Copaxone I believe has a practice kit that you can ask them to send you. In it, is a pad that you can practice injecting into, as if it were your skin. This might help you get used to the “SNAP!” that happens when you set off the auto injector. It is kind of a jarring sound. Also, your MS clinic nurse should be able to meet with you to help you get comfortable with self injecting. It may take a few visits to iron out the kinks, but that’s what they’re there for.

    One trick I use is I take a deep breath as I am about to push the botton. When I am ready to push it, I breath OUT as I press it. This way I am not tensing up by sucking my breath IN. Then I close my eyes and count to 12, check to make sure the red is in the window to indicate the needle is empty and I’m done!

    One thing I’ve learned about the needles is that they really are quite tiny. Smaller than even a straight pin and the end that goes in is bevelled (formed on a 45 degree angle) so it goes in quickly and smoothly with the least amount of pain possible. (If you can stand it, take a look sometime and you’ll see what I mean. It’s really quite small.) Injecting hurt a bit in the beginning when my body was getting used to Copaxone (it would sting and itch afterwards) but in no time at all, that stopped. It only itches sometimes and it doesn’t sting at all anymore.

    I’ve messed up a time or two and had medicine go everywhere! *laughs* It happens!

    It’s great that connecting here is helping you. No one should have to feel alone with MS. The good news is there’s a whole community of MSers here to talk to!

    October 29, 2011 at 10:35 am #6831

    Footsteps
    Participant

    Hi Meghan!

    thank you for sharing. I think you did the right thing. MS can be scary at times, especially in the first few years as you get adjusted. It is an evolving disease and I have found that my emotions and reactions to the disease have evolved over time to. Depression is normal! Partially due to the disease and partially because going through as much as we are it’s perfectly normal to be a basket case at times! I had my mad at the world phases! I can understand not wanting to tell people either. I went through several years where I told nobody anything and then told everybody everything! (neither strategy worked very well!). Now I use my close friends and family for support and tell work what they need to know. If I can offer any advice it would be to find things you enjoy, are relaxing and can do. Journalling is a great idea! and reach out to people. I am so happy to have found this forum! I’m in Kuwait so don’t have many people around who have MS (and certainly not my age!) You can probably get involved with an MS support group.

    Take Care and keep talking!

    Hugz Andrea

    November 6, 2011 at 2:18 pm #6832

    Meghan
    Participant

    Well, I am over my mad stage, hopefully for a long time. When I read my original post now, I sound like a basket case! LOL. Oh well, I am over it now. Thanks for all the kind words and encouragement. You guys are awesome. It is a nice feeling to know I am not alone.

    December 3, 2011 at 11:21 pm #6833

    robert j
    Participant

    i always thought y me everything now i live with everything my brother is a wimp he will fear from a little sniffily nose and i tell him its no big deal he still thinks he has the worst life he is like dill he makes up these storys to tell himself to make his life seem horible

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