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Looking for friends

  • By Hope1

    Hi everyone 👍, as you know I’m new to this forum so I’m just feeling my way round. I’ve had MS for a good while now and I’m finding it really difficult, I’m not getting any help from anyone so dealing with this really gets me down. I’ve tried talking to my doctor but he just passes me off to other professionals and when i see them it’s just pure negativity, I’m going to follow this forum with hope of talking to other people with the same conditions as myself and hopefully learn things that may have passed me bye. At this moment in time it’s really hard because my MS is digging in and coarsening me problems but the worst thing is my landlord has given me 4 weeks to leave my flat because he’s selling up and when i involved the council they said i wasn’t a priority so there wasn’t anything they could do, so in a few weeks from now I’m on the street with MS and confined to my wheelchair. Not a lot of justice in the world these days ( well that how it feels anyway) .

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  • By vvxjr9

    Hope1- I’m looking for friends too! I’m sorry about your apartment problem. I didn’t realize they were still doing condo conversions. I have had to go through four apartments doing a condo conversion on their tenants. It is heartbreaking to have to leave your home. Worse when there is a deadline. I remember those frantic days. Our last apartment that we had, we were planning on staying there until he retired and we could move out of the area. On December 15, we received a letter saying Merry Christmas now. get out. They told 960 tenants that they have until January 15 to be moved out. Of course, it was ridiculous expecting everybody to find a new apartment when there were not that many places to choose from that had available apartments plus there were elderly and disabled people that had lived there from the beginning. Since everybody hadn’t vacated the premises on time, 960 tenants were sued. Just dandy. The Washington Post heard of our predicatment and had a picture of our building and a long story. Wow, the Social Security and local community organizations stepped in to at least assist the elderly and disabled. One of them had a stroke and was hospitalized. I think after that article, everybody was given different departure dates when we had to be moved out. What a mess that was looking for apartments in the cold and snow. Most of them had long waiting lists that wouldn’t do anybody any good. We had to move further away than we intended just because there were vacancies. I really don’t like living here, but like MS, that is, unfortunately something we have to endure.

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  • By Donna Steigleder Moderator

    @hope1 I’m so sorry to hear that you are also about to lose your apartment. Have you tried contacting your local MS group to see if they know of any apartments buildings that are MS friendly? That might help in your selection process. I know you have a lot going on right now but once the dust settles, we hope you come back to join us on a regular basis. We have lots of stuff going here in blogs and forums, plus on our Facebook page–something always in the works so you don’t ever have to feel alone. Good luck with apartment hunting. Hope you find something quick. Donna Steigleder

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  • By Hope1

    Thank you for your support I’ll try and check in when i have the chance. I went to the doctor today to see if i could chat with him about any new treatment that may be worth trying because my symptoms are getting worse and becoming a nightmare but all i got from him was a chance too increase the medication I’m already on. It’s very disappointing too know that everyone in the medical profession has given up helping. I know I’m not the all one this has happened too but if anyone has had the same experience but has found an alternative I’m all ears.

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    • By vvxjr9

      Hi Hope1, I haven’t heard from you for awhile. Did you have any luck with going to your doctor and having him try a new treatment? I seem to have the same trouble with my neurologist. I’m tired of the monthly Tysabri infusions, but can’t be changed to something else. I have looked around at the different treatments, but with all their side effects, it really doesn’t seem to be much choice in changing to something that is nearly the same. I have had trouble with pain and more pain. Instead of changing to something different, I just get an increase in the amount of the dose. So here, I am still on Tramadol and Gabapentin. So, how are you doing these days? Carol

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    • By Hope1

      Thanks everyone for your reply to my messages I’ve posted and hopefully this will continue. The answers i can give to your post is that I’ve been to my doctor but most of the time they don’t seem to listen. I go to the doctors to get answers but they just pass the buck and pass me on to different consultants which is fine but all these referrals take time and in the meantime I’m struggling with pain and discomfort. I know it seems like I’m having a moan but i don’t know what else to do. Where i was living before i use to have careers come in and help me but now i can’t even get a social worker out to assess me. If anyone has knows a good way to get help please can you get back to me. Any help is good so don’t worry if you think it’s meaning less. Thank you for reading my post.

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    • By Meagan Heidelberg Moderator

      Hi @hope1!
      Are you seeing a neurologist or a primary care provider? Just want to gather a little more information before responding!
      Have you checked out the National Multiple Sclerosis society yet? They have lots of resources if you’re interested – I’ll post the link for you; https://www.nationalmssociety.org.

      Warmly – Meagan, MultipleSclerosis.net Team Member

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    • By vvxjr9

      Hi Hope,

      I know it can be frustrating to go to neurologist. Patients are pretty much interfacing with their PAs. I thought you were going to try to see a new neurologist – second and third opinions can be helpful. Have any of them suggested anything that would help with your symptoms?

      And how about where you were living? Are you still being evicted and is there any way that anybody can help to stop them from doing this to you?

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    • By Janus Galante Moderator

      Hi Hope1,
      I see it’s been awhile since you’ve posted and am concerned. How are you now? Please keep in touch with us. Warmly, Janus

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  • By pussycatlady

    i’d love to communicate with someone. I need to chat with someone who understands.

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    • By vvxjr9

      Hi pussycatlady,

      I’m always looking for friends. I get so lonely sometimes. And that brings on depression, so it would be nice to chat with someone who understands what us MS sufferers go through.

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    • By pussycatlady

      I do relate. people don’t always want to hear about our issues. I’ve been depressed ever since my diagnosis.
      I’m a different person now, unable to do the things I used to.

      do our physical limitations, like being in a wheelchair make everything difficult? do our ‘friends’ want to be limited to what we can or can’t do?

      it’s not fair.
      we just have to deal with it.
      no wonder we appear crazy!

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    • By Janus Galante Moderator

      Hi vvxjr9,
      I know what the loneliness feels like, also the depression that can go right along with it. I know that it can seem like a very dark place.
      I just want to encourage you that here you can vent, share, cry if you need.
      We’re here for you and there are those of us who truly do understand.
      There are many here going through the very same things. Please know you’re not alone. xxxxx’s Janus

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    • By Janus Galante Moderator

      pussycatlady,
      we are here for you. You have friends here in this community and please know that you are NEVER alone! Thinking of you, Janus

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    • By pussycatlady

      STILL DEPRESSED.
      MAYBE A NURSING HOME CLOSER TO HOME MIGHT BE GOOD. ERIC DOESN’T COPE WELL WITH ME AT HOME AND IN ALL HONESTY IT DOESN’T FEEL LIKE MY HOME ANYMORE AND IT FEELS LIKE HIS.
      A WEEKEND AT HOME ONCE A MONTH OR SO MAY BE THE ANSWER.

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    • By Janus Galante Moderator

      I want to thank you pussycatlady for letting us know how you’re doing and giving an update.
      Always remember that you count and that your life matters. We care about you and want you to stay connected with us.
      I’m very sorry for the decisions that may be before you right now. Once again, please keep us posted. Janus

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  • By vvxjr9

    Pussycatlady – I’m depressed a lot too and cry. And get angry – why me? or it’s not fair! Unfortunately, there was a genetic link that I didn’t even know about at all. After I got the news that I had MS and was finally able to call my last living relative, she said yes, MS was in the family and there were quite a few of my cousins were in wheelchairs or using walkers. It would have been helpful if I had known in advance, then we wouldn’t have bought a condo that had 22 steps to go up to it. Of course, we are not the same people that we were before. You will find that you willl have to learn to live with your “new normal.” This is a good group to be in, we can help each other out or we can rant, everybody will understand. Do you have a MS support group anywhere near you? Sometimes that helps if one is actually able to be face-to-face with another MS sufferers.

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    • By pussycatlady

      it’s pretty horrible that you weren’t told about your possible diagnosis.
      not a good day today. when husband visited I started crying and he just got angry and left. I WANT TO GO HOME and not be confined to this bloody place [pardon my language, but i’m English and we say bloody a lot] did I say I am in a nursing home because I fell at home??!! and he didn’t know what else to do. I have to get out of this place. I don’t belong here. now that’s really depressing.
      my left side is weak and my left hand is closing up and not really usable. so my body is fighting itself.
      I used to go to a support group. it was good. but when I stopped walking it became too difficult to get to.

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  • By vvxjr9

    pussycatlady – I am so sorry for your predicament. It really sounds like your husband dumped you in a nursing home. You don’t belong there. I’m not sure how those things work, if you need his permission/authorization to get out of there. It can get sticky trying to get out. Do you have anyone, a lawyer, or somebody that can help you? Did you make any friends at your support group that can visit you or e-mail you to give you something to look forward to, to help with your depression. I looked for years for a local support group, of course, it requires a couple of buses to get there and why now if I am going to be relocating, it doesn’t make sense. I deeply know how it feels when one can no longer walk. I think a part of me died then. I hope somebody can help you. I’ll send lots of prayers your way.

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  • By pussycatlady

    where are you relocating to?
    it would be hard to get support group ladies to visit as i’m in Denver and my group is in Colorado springs. that’s over an hour away.

    all I think of is how I can get home. i’m unhappy here.

    my ms is basically on a level that’s not going to change much now. I am trying to live around constant depression. thank god for medication.

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  • By vvxjr9

    pussycatlady – hopefully, we’ll be able to relocate to Florida. I’ve wanted to for years, but have had to stay in this area since my husband was still working. I love the summer weather plus I’ve known so many friends and classmates that have moved here. I used to have relatives that lived there, but they have passed. It is also a lot cheaper to live there instead of us being in a high cost of living area. I’ve started going through stuff to throw away and clothes to donate.

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  • By vvxjr9

    pussycatlady – Glad to hear that you are still with the group. I’m sorry things haven’t worked out so far and certainly hope that your idea of a weekend at home might help. I pray for good results, so please get back to us

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