This Is MS Multiple Sclerosis Knowledge & Support Community

I am at this moment feeling utterly alone. I stumbled a few times going to use the bathroom and I had to ask for my son's help to get back onto the couch that I've hardly moved from for two months. I am 34. I got an MRI on Tuesday. I'm having constant suicidal thoughts, but I have no intentions harming myself. I love my kid. I am just too overwhelmed and more alone than I can bare.

I told my mother earlier this week that my leg had been numb and I'd had to drag it with my son's help. She just said, "creepy" and changed the subject. I've been a librarian, but I'm not employed right now and I had to quit volunteering at the library last week. My world has shrunk. I've lost my hearing in my left year about two years ago. I've total bilateral vestibular loss for seven years. I had the stabby pains in the side of my head. I twitch and spasm, but I still look younger than I am and I'm constantly writing books, so everyone writes me off thinking my life is perfect. I left my boyfriend in November and came from New Zealand to Raleigh, North Carolina. A friend had offered help. I'd known him for 10 years and seen his place before, but when I got off the plane I found myself broke and stuck living with a depressed man on his way to becoming a full-blown hoarder. I can't make food in the kitchen and rather than finding a permanent job. I got worked a few temporary positions, got flu and then just got physically stuck. I want sleep.

I have stopped telling people anything negative. It overwhelms them and drives them away, but I am terrified and I'm writing here hoping that I will be forgiven and someone will understand that I needed to tell the truth. I had an MRI on Tuesday. I am both afraid it will show nothing and also that it will show something, as though that changes my symptoms. I have no health insurance. I've gotten aid from a medical charity.

I've lost all the support of my family years and years ago when I had the first symptoms, but it was only an excuse. I was never wanted from birth, which is why I'm living on the couch of some old friend. My son is here with me and he's got his first job and enrolled in college. He wants to leave. I don't blame him, but I can't do anything. I am so frustrated. My mother spreads rumors about me around her side of the family and my father's, who she is divorced from, saying I am a bad mother, unstable, and a lot of things. Well, I don't feel very good about myself after all of it, but during a particularly difficult time when I was struggling to remember things, having tremors, and depressed, she confessed. She'd allowed and helped my step-father to molest me, and my sister. And she insisted, more or less, my symptoms were all in my head.

So, I am alone. My son's father died in a car accident. She's not poor. She has four empty rooms in her house, but as much as I need help and she has resources, she had the audacity to ask if when I become a famous author, if I'll give her money. At the rate my illness, totally untreated so far, progresses, I don't feel I'll outlive her.

I have education. I applied for disability and was determined to be fully disabled, but too smart. They said, after the tests were done, I was eligible for genius associations well above mensa. But, I haven't figured out how to make that work for me. I can't even type some days. I can't get around and I can't stop crying.

I want to climb under a rock and hide until it is all over. I live in fear that my friend will ask me to leave and I will be left sleeping on the street.

I've never told anyone all of this. I keep constantly talking to friends and family and writers online and being supportive of them. Some of them catch on about different aspects of my situation, but I wish someone was just here right now to watch a movie with me. I had friends in New Zealand who hung out when I felt alone. I had a boyfriend, an alcoholic one, but still someone who held me at night when I was scared. Now, I can't get out so well to meet people and I'm so tired. I am so angry at my friend for telling me to come here in full knowledge of my situation and then basically, he just tried to take advantage of me sexually and when that didn't pan out, he's just left me to my own devices.

Through all of this, my son has been wonderful. But, I don't get this. He doesn't question anything. He just cares. We watch science fiction shows together and I try to support him anyway I can. His father dies and then his mother is sick. He's 17 and he has to do so much for me.

What if the test comes back negative? I've had doctors at clinics tell me I have possible MS for years, but what if I never get help? What am I good for like this? Why does it feel like no one can care? How can I face doctors who have for years sent me away until my problems were so severe and the tests couldn't deny them? How can I take care of myself when I have no home and no family? I can't even get a hearing aid, because I'm deaf in one ear, but not deaf enough.

Am I going to die alone in a ditch somewhere? I sound like a mess. I am, but I'm so tired of having to strong for everyone else. I hurt.

I know this is all about me and I'm writing about a tangle of issues on site where I'm not the only person with difficulties, but tomorrow I will be better. My son will walk out of his bedroom and want food and I will remember why this is worth it. I just am facing so many uncertainties. I can't thank you enough if you've read this far and saw how much I needed to vent. I wish I could always be the person listening. I feel so much guilt about my needs and I don't know why.

When I was 23, I had a classmate, much older than me, who needed help in a course on deductive logic. He broke down once and cried about his husband leaving him right after the wedding and how he had just been diagnosed with MS. I couldn't say anything. I didn't know what to do and it didn't understand it. He looked fine. I tried to see him again, but he was never around after that.

Does it go on? Is it always desperate? Is it lonely? Do people ever understand? Do doctors ever help? Can there be support?

What happened to that guy I knew? Am I ruining my son's life? Is it all in my head? Am I not doing enough? Am I weak?

Thank you for allowing me a box to type my feelings in. I could have written all of this to myself, but since the bulk of what I'm dealing with is related to these tests I am waiting on, I think this box I'm typing in, makes me feel like, no matter how desperate everything feels, I am not Atlas. Anyone could type into the box under a heading, of the evidence of our mortality. I am so tired. I've said everything. I feel better. I'm actually going to hit "submit" without editing, because hey, "I'm anonymous here and I said everything." It feels braver somehow to tell the truth.

hi and welcome to TiMS. so sorry to hear your situation very glad your son is a bright spot in all you are going through. i'm going to private message you so check your 'in' box.

Welcome to ThisIsMS, InnerUtopic. You have found a new community of friends here. We do not have the answers to all medical problems, but we can listen and offer our opinions.

There is no doubt that life has dealt you a difficult hand. Everything would be easier and better with the support of your family. But you and your son make a family; going to Raleigh, North Carolina, is your chance to start a new chapter for your family – first job for your son, college, a chance to make new friends for you both, a new beginning.

Your son can easily meet new people through job and college; I think the objective is now for you to do the same – meet new friends who can put their arms around you when you need compassion, kindness, and moral support.

If you have a diagnosis of multiple sclerosis (MS), phone your local MS Society office and ask what services you need might be available to you.

If you have a previous church affiliation, call or attend the local one; if you have no church affiliation, start trying different ones. Contact the minister, who should know of local people and services which could help you. Perhaps you met people when volunteering at the library. Have you met your neighbors? Use every opportunity you have to make contact with people – you are NOT alone. At the very least WE are here.

Start by taking care of yourself first – a healthy diet, lifestyle, plenty of sleep, a network of friends – I believe that things will get better for you. I wish you all the best.

First: don't be so hard on yourself. Your introduction to our forum is neither embarrassing or desperate but portrays extreme honesty and vulnerability, which is alright, and part of the human condition. We all need help sometime. It sounds like you have had a very difficult life and I am sorry. You have your son, though.

Nonetheless, I was speaking with an Infectious Disease doctor who informed me of Walmart's low-cost generic prescription program [I suggest 'Googling': "cheap antibiotics at walmart" and browsing; I would not recommend pursuing antibiotics sold online, internationally]. The reason being for a somewhat lengthy course of antibiotics. If this has caught your attention (and you are a reader, right?), then I suggest familiarizing with Dr. David Wheldon (former Consultant Medical Microbiologist at Bedford hospital, UK) & Sarah Longlands' (David's wife: an artist, painter and figurehead of the Antibiotics sub-forum) story [she still posts as the user Anecdote despite halting the progression of her MS, over a decade ago].

The entire story can be read in full at Dr. Wheldon's website: http://www.davidwheldon.co.uk/ms-treatment.html. I recommend a few 'go-throughs' to catch every detail. It isn't something that can be understood in a short while, so be easy on yourself.

Why continue to post on a public forum about your disease, despite its attenuation [Sarah]?
Why continue to update the source of public information regarding the antibiotic protocol [David]?

All good questions.

I don't know your entire medical history nor the course your disease has taken, but some users have experienced a benefit from undergoing an antibiotic trial (a combined antibiotic regimen aimed at the bacterium: Chlamydia pneumoniae, or C. pneumoniae, for short: a very common respiratory pathogen; the regimen, which uses out-of-patent antibiotics, can be very cost-effective, but dangerous if the wrong antibiotics are used, for different reasons, so understanding the correct protocol, and its nuances, is paramount). Upon completion of the regimen, the rule tends to be that people continue on with their lives and forget everything about this MS thing; Sarah is one of the exceptions.

The rule is also that MS, in its progressive form, does not attenuate, naturally. The antibiotic protocol has shown otherwise: http://www.thisisms.com/forum/antibioti ... ml#p208320. Nothing is perfect and nothing is guaranteed. I know you are hurting now, but you need to take your health in your own hands. You need to be strong. Your son can help you, though, and so can the users at this forum [so far JL & LC offer very good advice].

So welcome.

I understand your thoughts. Lately I have been feeling the same way. I am 34, married since I was 16, been a mom since the age of 14. life's been challenging to say the least...and the MS DX didn't add to the joy of life. coming out of an exaserbation and noticing further loss of ability...sadness and depression. my family has a difficult time understanding this invisible disease..

Hello, InnerUtopic,

I think that it's the second time you write (under another name, one month ago, no???)
I read your post, which really touched me.
My opinion is that you suffer because you are "gifted".
Have you read forums on giftedness? Maybe this could help you better understand what happens in your brain, and find help.
Excuse my language "French" but I can not express myself, and I am so troubled by what you just wrote ...
Many "gifted" persons seem to have problems of neural connections and have personality disorders ... (Their brain is wired differently, and no one understands ...)
Personally, I'm looking for possible causes of my symptoms, and I navigate between sites "MS" and sites "gifted" to try to find answers .... (I noticed, looking, many people who have MS, are also "very intelligent" ... especially those who seek to understand their problems and are "open" to all the explanations and ... here, on Thisisms site, I think this is the case for some people ...)
You should find out where your brain is located lesions on MRI and see what functions they are related, which may explain some psychological symptoms. (I think that lesions in different brain areas may be offset by greater activity in other areas, which could explain a kind of "giftedness" ... But, I don’t agree with the idea that "gifted" would be "superior" to the majority of people:. I just think they have developed certain intellectual skills to compensate for a lack, and conditions may be extreme, for example, autism Asperger a form of intelligence seems overdeveloped at the expense of another form (difficulty in social relationships etc ...)
You could also read books by Ellen Winner of gifted children:
http://books.google.fr/books/about/Gift ... edir_esc=y
And many other writers who are specialized in giftedness

Sorry for my « french » and I hope you find answers to your suffering ...

I'm going to finish reading and reply again. The first two lines have me in tears. I can completely relate. More to follow.

I was feeling emotional and wanting to vent when I jumped on the forum and saw your post. I can really relate to putting forward a strong front but feeling weak inside. I was diagnosed with MS in 2003. The first eight years went pretty smoothly, the last two have been a struggle.

My nickname in my family is OX. I am used to pulling my weight along with the weight of everyone around me. I often wonder how long I'll be able to seem capable. I have been battling progression with a difficult diet and a long list of supplements. My neurologist gave me some stretches and exercises to build strength and balance. I started going through them (before getting on the computer) and I just lost the will. I am normally pretty self disciplined. I don't feel like continuing to fight it. I'm sure I'll regain my will soon though ( :

I'm glad you are a writer, because writing is a labor of the soul. "A person's spirit sustains him in sickness, but a crushed spirit who can bear?" We all die. This transitory life is a training ground for our souls. Your weakness is an opportunity for your son to be strong and to be needed. That is a gift - you are not ruining his life.

But people won't always (won't often) read our minds. I was playing soccer with my boys at the beach recently. I kept falling - running on uneven sand is very difficult when you often drag your feet. It was worse than normal at a time that I had hoped things would be getting better. I landed on my shoulder (the other one was already hurt from a frisbee game the week before). I said I had to drop out. I went for a walk by myself. My youngest, the most sensitive member of my family, caught up to me. I didn't try to disguise my tears. I was so disappointed. I felt that for all my efforts that I was losing the battle anyway. He didn't really understand - other than that MS sucks. He is only 11.

I am sorry to hear that things didn't work out with your alcoholic boyfriend. My wife ended two months of sobriety recently. She has only been drunk once since falling off the wagon, we'll see how that goes. I do know that it can be difficult living with an alcoholic, but you take the bad with the good (at least that's my approach).