@peeks 

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peeks

I don't want to feel damaged.

Hi, I'm new here, I'm not sure how this site works. I thought I'd post something here, but I'm not sure if this belongs here? I was diagnosed last year, and I've yet to come to terms with any of this. I've had symptoms since I was 14, and it took years to get diagnosed, I'm 26. I've known I've had MS since I was a teenager, but no doctor would listen, they said it was just depression, they would not test me. Having been diagnosed I am yet to feel stable with my illness. I see a different doctor weekly since the diagnosis, there are so many things wrong. I don't feel stable. When will my illness become stable? I keep getting worse and worse. I was diagnosed as having relapse remitting MS, and as of late, I truly feel this is secondary progressive but my MS nurse will not listen. I had a relapse a few months ago, my left leg became numb. Now the spasticity in that leg is beyond uncomfortable. Both my calves become so stiff and painful especially if I stand or walk for less than 20 minutes. My left leg is worse. Also, if I'm sitting and my ankle is in a certain position my leg will start bouncing on it's own, this is not only extremely uncomfortable but embarrassing as well. I showed my MS nurse how bad the bouncing is and she just said "oh yeah, that's spasticity" and did not offer any help. After I last saw my nurse I realized, 'wait...so there's no hope for me, it's just disability from now on, nothing can help me.' I cried for the first time at a doctors office. She showed no empathy. I feel so alone, I've gone to support groups, but it's only older people who are very disabled and this led me not to feel better but to feel extreme depression. I have so many symptoms, I just want to feel stable. I feel alone because I can't find people my age where I live that have MS. No one around me truly understands the magnitude of this illness and what it entails. When I watched the two short films on here, I felt 'wow that's me!' and I hoped that this community would help me. I don't know what it is I need, but I need help, I feel like I became MS. I don't want that to be my identity. I've lost who I was. Many of the activities I enjoy, like going to concerts, have been changed. I went to a concert recently, and I noticed, and felt, that my MS has ruined the experience. My legs were so stiff and painful, my fatigue was intense, my balance was the worse. If I didn't have the barricade I wouldn't have been able to stay in the crowd. Now I'm scared of being in a crowd of a concert. I don't want to have to be in the disability section since it's usually very far from the stage. I hate that MS is affecting this. I just want to enjoy a concert and be in the front row. But I can't do it like anyone else my age. I look around and I see all these healthy people my age, and it hurts me so much. I want to be like them. I look at them and they don't know how much of a luxury it is to be them. When I look at bands onstage, they don't know how lucky they are, and they don't know how unlucky I am. I don't want pity from people, but I need understanding. I always feel like crying when I think of how no one knows that I'm standing there with this illness, the pain, and the desire to be able to do the things I love. I don't want to have to sit in the disability section as if I am damaged. I don't want to feel damaged. I need help and support. I've been through too much this year of receiving my diagnosis I haven't felt stable with this illness, it is not under control no matter what I try. I just want to feel stable. The medications don't help me. The doctor is so busy that you can only see him in 6 month intervals. When I need him, they tell me his too booked up. I saw him in June, and my appointment is in late January 2014. They only let you see his nurse, who is not very qualified it seems. The doctor is the best in this whole area. He is incredible. But what use is he if I can not see him regularly. I met one young person with MS here, he only had about one or two lesions in his brain. I have too many to count in my brain and all through my spinal chord. I just need help. I don't know what to do anymore. I want to feel stable and healthy. I don't want to feel damaged.
@melissag

Hi @peeks, first of all, welcome to the site, and yes you've posted in the right place! This site has been great for me, I was diagnosed sept of last year, and I know how you feel. We all go through stages about how we feel about MS, and the most important thing I can tell you is to allow yourself to feel the way that you do in any given moment. No one can tell you how you are supposed to feel about it. Yes it's unfair, and you have the right to feel that way, but try to think that you will get through this tough time, there is a light at the end of this tunnel! I think I've come to more or less accept my MS and what that means, yes I still struggle at times when I feel like I cant keep up with other people my age (I'm 25) but I'm starting to learn how to adjust so I can still enjoy my life! Its all about seeing things in a new light, its different, but it doesn't have to be all bad! Its definitely a learning process. I also started seeing a psychologist, and I've found that really helpful with talking through things to someone outside of it all. I too was in a very dark place for a while there, but things are finally starting to feel like a new normal for me, and in time, it will for you too! Also, have you contacted your local MS society? They can really be a big help in getting some answers to questions you don't feel are being answered. Its great that you found the site here, and feel free to message me if you want to talk a bit more.

@melissag

"Wow I was diagnosed in September of last year too! I can't believe you're 25, I've seriously never found anyone around my age. I went through an extremely dark period as well...I saw a psychologist, he actually made things a million times worse, he became very abusive. It just didn't help ontop of everything. What luck, huh? It's just ridiculous. " @peeks, I can see your last post in my email but for some reason its not showing up here, so i thought i would post it above my reply. Im sorry I must have missed the "last year" part of your post, I thought you were quite recently diagnosed for some reason. In that case you probably know just as much about it as I do! That's crazy about the psychologist you were seeing, im really sorry to hear that. Its so important to have the right person, and he was clearly not! Such a shame you had to go through that on top of everything else. Thats just horrible.. I dont really know anyone with MS either, but this site is full of people both our age and some a bit older, its a great mix and ive found it to be a really great place to ask questions!