Last reply 1 month ago
so lost

I was diagnosed in October 2018 and since then I’ve just lost myself completely. I cry all the time. I dont’ want to be here anymore. I use to be fun and happy and I don’t even know, ready to live life and now I pray to die in my sleep and cry every time that alarm goes off. I’ve become a mental burden to everyone around me. I hate myself and hate that God chose me to have MS. I can’t be positive when all I read is that I will end up in a wheelchair. I already know that the day they try to give me a wheelchair is the last day I’m on earth, no matter what. I’m not even budging on that a little. I just don’t want to go on. I hate doing the stupid injections and look like I’m in an abusive relationship, I haven’t felt my feet in 8 months. Everything is stupid and I hate everything, me most of all. I get angry with those “Ms made me positive” posts as they only positive is that it’s taken a few years off this horrible life…. hopefully.
I’m so hopeless.

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2 months ago

Hi. This is the first time I’ve posted on this site but I just had to respond. I’m sure you don’t want platitudes but it really isn’t that hopeless. I would really urge you to talk to someone, your doctor, MS nurse, friend… I’ve had MS for 11 years and it isn’t all bad. A few months ago I also suffered with Anxiety and I felt completely helpless but a course of CBT helped me see things differently. Not a miracle cure but something to work with.
By the way you don’t have to persevere with the injections. There are alternatives. I used to inject Rebif, 3 times a week and dreaded it. It stung like mad, gave me flu shivers and had similar site reactions. After speaking to my Neurologist (a few times) he changed my medication to Tecfidera which are tablets taken twice a day. It took a while for my body to get used to them but now it is 100% better than the injections. Thank you for having the courage to post how you feel. I wish you all the best in finding some hope.

2 months ago

Hi @melanie1976 and welcome.

MS can be a huge burden, which sometimes seems overwhelming. What I’d like you to do is printout what you have posted and ask your Doctor to read it.

It’s never easy living with a lifelong medical condition and we all need the right mental state to allow us to exist. Anti-depressants aren’t a sign of weakness, but they must be considered as part of our toolkit, to help us carry this burden around.

And, yes, as @jackie904 suggests, talk to your Neuro with a view to switching to a Disease Modifying Therapy (DMT), which suits you and your lifestyle.

Having MS does not mean an express one-way ticket to a wheelchair. I’m almost 35 years since my first episode. I don’t use any aids indoors, although I have a wheelchair for outside. But, I haven’t had the benefit of the array of treatments which are available to you now.

Life can and will go on. And, there’s no reason why you can’t enjoy it

2 months ago

Hi @melanie1976 from reading your post, your diagnosis is so very raw.
I think the first thing you need to do is as stumbler says, stop googling MS, it won’t help in some ways but if you do, look for the positive posts.
MS is not a death sentence, and not the the end of your life trust me, I’m still kicking. I’ve probably had it 5 years that I know of, I’m more fit than I was pre diagnosis and I appreciate the small things in life. Look for the positives, however small. Know that it’s OK to feel crap, sleep it off and get back up again. Believe me, I know what it’s like at the beginning, my ex walked out at the same time as my diagnosis but I’m still kicking and I’m still smiling. Surround yourself with good friends and family and know that you won’t always feel like this. I have a blog, more to show that it’s not the end of your life, but trust me you will start to smile again 😊.

2 months ago

You might never need to use a wheelchair. You could be fittest person in the world have an accident and end ip in one. Cant live on what ifs. I think about it as well but i dont let it take over.

I was fed up this week as well. But i had a lovely day today had a full english treated my self, had to have a sleep when i got in. Please see a doctor do you have any support??

1 month ago

Thank you everyone for the comments.
I’m a bit of a lost cause now and I know this. I’ve given up and don’t see any happiness in my future. It’s okay, we get what we deserve in life and I deserve nothing but a lifetime of misery and tears so that`s what I got.

I have stopped all medications as I cannot afford them. Even with insurance, I can’t manage minimum amounts. I’ve stopped the Rebif shots and feel physically better then I have in months. But mentally is and always be the same.

I appreciate everyone kind words, I shouldn’t post anything. No one nears to hear that I wish I was gone already.
But hey, if anything……. at least you’re not me!!!

1 month ago

Hello @melanie1976. Only you, me, and other people with MS really know how it feels to be us. I feel upset that you say you deserve misery and tears. Nobody on the planet deserves MS. But here we all are, stuck with it. This is not meant to sound patronising, but this is very recent for you, and even though I probably managed the diagnosis and aftermath fairly well, it still probably took about a year to fully absorb everything. Once I’d got through all the wallowing, feeling sad and sorry for myself and putting on weight through comfort eating I started to reason with myself. I said to myself that, given that I was stuck with this against my will, how did I want the next phase of my life to look like? I started to learn to set really small targets for myself, things I wanted to accomplish. I decided that of all the reasons I had to be miserable, the most misery making one was that I was destined to be ecause I had no energy to exercise. But, little by little, I chose a diet that really suited me. I began to lost weight and up went my zest and enthusiasm.

I have to be honest, I don’t think things will change until you can develop or embrace a bit of a brighter outlook. As we know in life, things that help us don’t generally fall into our laps, we have to make them happen. I think it takes a real strength to make a post like you have. And you can see that a string of people have responded, because nobody wants to think of you, or anyone else suffering. So, your words of despair have generated a really positive response.

Why don’t you tell us a little about yourself? Like if you work, or have family. Or something that do, or see, or watch, or think that always brings a smile to your face. You have lots of support on here, I hope you can feel that all the way across the ocean…..x

1 month ago

@melanie1976 , I can’t add much to my previous post or the eloquent words provided by @vixen above.

I just wanted you to know the works like a close-knit family. If one of us is hurting, we all hurt. But we don’t let anyone bring us down. We all rally round the weakest, to help them back up.

We’re here for you, and we’re hurting……

1 month ago

You’re right @vixen, it won’t get better until I decide for it to be better. But I’m hopeless now. No one needs to know anything about me. Doesn’t much matter anyway. Spent the last few months pushing everyone away so I can vanish and won’t be missed anyway!!

@stumbler. You’re right too. I shouldn’t be bringing anyone down. I’m so so very sorry.

I shouldn’t have joined. I will delete as soon as I’m near a computer. I apologize. I don’t mean to make things worse for anyone else. But that’s the only thing I’m good at.

You’ve all been amazing. Please take care and I wish you all the best. Each day is just another day closer to death for me and that’s okay too. I’ve accepted my life and lack of future and just wish it would end sooner rather then later. We all have our roles in life….. mine has never meant to be great! ❤️

I truly hope you all have amazing fulfilling lives ❤️

1 month ago

@melanie1976 hi there. Please don’t delete your page on here. We are all here for you and I understand that you say you want to die but I want to ask you to please reconsider.
I was only diagnosed in May but have not yet been told which type I have .. I had a lumbar puncture yesterday and the results of that will help my neurologist to determine which type I have. In the first couple of weeks I felt relatively optimistic.. that was, until I attended a local support group and ended up sitting next to a woman in a wheelchair who was completely paralysed. The seriousness of this disease hit me then, and I couldn’t stop crying after that. A few weeks later I still hadn’t pulled myself together and as I was driving home from my friends I seriously considered diving my car into the lamppost. But for some reason I then decided a lamp post wouldn’t be any good … a tree might be better? A nicer way to go, somehow. I thought about killing myself a few times….. But, then I don’t know how I did it but I managed to change my mindset. @supermum1983 is so right – the healthiest person on earth could end up in an accident tomorrow and be paralysed from the neck down. Before you were diagnosed, you could have caught meningitis and lost all your limbs. You could have been diagnosed with terminal cancer and been given a few months to live. There are children dying from leukaemia, people who drop dead from unknown heart conditions, people who die suddenly from aneurysms… I even heard the other day of a young girl in America, she’s only 17 I think, who very recently (this June!) had her leg bitten off by a shark and both her hands severely damaged (she may never be able to use them again).
I’m not saying any of this to make you feel bad, more, to help you see that life could always be worse. There is an old saying “I was sad because I had no shoes … until I met a man who had no feet.” And I think that is so powerful.
I know you can’t see it right now, but you DO have so much to live for. MS and depression go hand in hand (usually because MS is connected to low vitamin D – so you should get your VitD levels checked as a deficiency here can cause depression) and you are definitely suffering from our dear friend depression my lovely. Right now, you have a serious chemical imbalance in your brain which is distorting your opinions and how you view the world. I KNOW you may think you disagree but this is not your healthy brain thinking right now, this is your depressed brain. And in the same way that you can (and would!!) accompany a broken leg with a course of painkillers or an infected finger with a course of antibiotics, you should treat your depression with a course of anti-depressants and some talking therapy (the two go hand-in-hand and you are better able to fight depression when you have both side by side).
Please don’t give up on yourself. You don’t deserve this. What you deserve is to think, no, f**k this, this world can be sh*t but it’s not getting rid of me THAT easily!!! Don’t go down without a fight. We are all here with you and we GENUINELY want to help you. Believe that. Because I wouldn’t be sitting here at 00:14 UK time messaging you if I didn’t care! And I know I can say the same for all the above messagers – they so genuinely care and mean everything they say. Otherwise they wouldn’t have said it 🙂 we have no vested interest in saying any of this.
So please stay here with us. Continue to message us as we want to hear from you – no matter how crappy things are and it’s okay if all you want to do is shout and scream and cry over your keyboard to us. After all, that’s what we’re here for right? X

1 month ago

i’m not doing well right now at all, but i just HAD to respond to your latest post!
take it from someone with ms for 23 yaers: things may look bleak right now, because it’s all still so new and frightening to you. but you can get through this, and we are all here to help you with this!
please do not delete your page. we are here to support you!

1 month ago

@melanie1976 , I’m not sure you understood my last post.

You won’t bring us down. There’s strength in numbers, so we hurt and we all make the effort to recover. That’s the strength of this Forum.

So, there really is no need to remove yourself. Let us help you overcome your present negativity.

1 month ago

Melanie, I am not going to tr to give you answers but as usual I direct people to my blog I started writing it after I went through what you are experiencing, I lost the lot, relationship, company, money and I suppose me, after the tears I thought write about how I feel and share an honest count of where I was and now where I am, start at the beginning and try and read up to today, from living in the States to back here in the UK, I am doing OK, you will too. good luck

1 month ago

Again, thank you all so much. I hate to be the one to prove that not everyone is fixable but I am that person. The hope is far gone from me.
I’ve read all the posts…………. My doctors know, the neurologist knows, a physiatrist knows and I’m proving more and more each day to just let me go.

MS took more then some of my abilities………….it destroyed my spirit, it took my happiness, my future and my heart.

I was 110% and taught a spin class August 20th, 2018. Went to a doctors apt and was told I’m in need of a Hep B shot……….. I did what I thought I was suppose. I PAID for that shot and now……………I spend my days crying and evenings begging God to take me. Praying every night to go in my sleep then awake to an alarm and cry. It doesn’t get better.
It’s been almost a year since I have felt my feet. I have a 120 pair stiletto collection that has been my life and now I just look at them and don’t even know if I can ever wear a pair again. That alone is a reason for me to go….no heels….GOOD effin Bye!!

I know MS isn’t a death sentence but it’s a life sentence for a crime I didn’t commit. My future was suppose to be playing with grandkids and living my life and now I’m suppose to just “suck it up” and deal? Well F that!! I don’t want to. I shouldn’t have to. Being forced to stay alive when you don’t want to is ridiculous. I’m aware of how brighter the world would be without me and no one can change that. And yes, I have 3 daughters…two are grown….. and YES they too would be better without me. No matter what anyone says…… they have watched their mom die inside for a year now. I no longer find joy in anything, even them. I just cry, that`s all I do. How pathetic is that to watch your mother crumble in front of you…………and keep crumbling until when??? there is no end to this tunnel besides death. I know this. And THAT is what I’ve accepted. I will NOT accept this diagnosis and will not jump on the “oh look at me fall, haha” bandwagon. I just won’t!

I’m never gonna get better, it will be a progression till I’m worse and worse. I know MS folks that poop their pants in Walmart – LIKE GIMMIE A BREAK!! Some who are in wheelchairs within weeks of diagnosis. I’ve stopped all medications, I don’t want to prolong this life and they are a joke anyway. Here’s some medications to “hopefully” help you in the future (no real proof) but now your bald with a full body rash for life, oh and wait…………You still don’t get to feel your feet!!! What a joke, why bother.

I truly am so happy that you all have found some joy with your diagnosis. I will never be an inspiration for this disease. I will never say, well I’m so thankful now. never.
How in gods name is that a future?

@rogersouthhall, thank you but I can’t read your blog. We are in different places in this world. It starts with “MY MS ADVENTURE” , you will never understand cause you’re on an adventure and I’m on death sentence. I can’t understand the “positivity” of MS and never will to be honest. So just reading that you’re on an adventure makes me want to blow my head off. I wanted adventures in life too, like travelling and hiking, living, smelling the flowers………….. adventures, goals and ambition are all overrated and almost an impossibility to a person like me.

There’s depressed then there’s me who makes depression look like fun cause if I could just be depressed, I’d maybe feel again or see a “future”.

1 month ago

I was diagnosed with MS eleven years ago when I was 55, the neuro thought I probably had it since my thirties. I am still walking (no cane or walker), I don’t walk as far or long as I want but I am still walking. One on my aunts had MS for 45 years and was only using a cane when she died of cancer at the age of 75. I started on Rebif when I was diagnosed and changed to Tecfidera because of skin rejection. My neuro compared a recent MRI to one I had eleven years ago and said that there was minimal progression of my MS. I am heading out to my studio to get some work done, I have never let this disease stop me. Potter

1 month ago

Hello again, please understand that none of us have found some joy with our diagnosis. We have found some ‘joy’ in spite of our diagnosis. Please don’t remove yourself from here. I get that the cheeriness on here can sometimes seem alien, or really detached from the way you might see things. If you can’t have faith in anything else, please accept that everyone who has responded to you understands how you feel; all we want to do is support each other, and that includes you xx

1 month ago

I absolutely agree with you @vixen – we haven’t found joy in our diagnosis. But DESPITE our diagnosis.
I was just watching a clip on TV this morning about two women with terminal cancer, who came on to say what they’re planning on doing with the little bit of their life they have left. It was inspirational and it made me feel like, what right do I have to feel like I want to kill myself when those women would give anything to trade places with us! As MS is not a death sentence or even a life sentence as you put it. We’re not all worst-case scenarios and even those of us who have more serious symptoms can go on to lead relatively normal or at least still enjoyable lives.
I won’t let MS beat me and it would be devastating if you let it beat you too. Our brains are SO powerful, more so than you might think, and mental health can directly correlate with physical health. Please don’t give up on yourself, or us! We’re here for you x

1 month ago

I regret that the original poster, melanie1976, has removed herself from the Forum.

However, I am still in touch and will try to get her to re-register.

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