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tiggermum
3 years ago

This is a very tricky subject @gs960. First question we should ask you is “why”?


gs960
3 years ago

It is not an instant decision I made. I have been thinking about it for several years. I just lost hope in everything and I am tired for any changes.


stumbler
3 years ago

@gs960 , life is a strange beast. You say that you have lost hope, but hope could come and knock on your door at any moment – life can be like that.

But, sometimes, we have to pick ourselves up and go and look for hope.

Voluntary death, or assisted suicide is not something that this country entertains at present. A few have tried to provoke the conversation, but no legal changes have been considered yet.

Do you have any family close to you? I’m just thinking of the guilt that your parents are living with. After all, they made you, But, they still love you, with your warts and all. It’s what parents do.

And one thing that parents dread is their offspring pre-deceasing them. It’s not a natural order.

Have you discussed your feelings with your MS Nurse? I mentioned the word “suicide” in passing and I had a psychologist referral before I could say joke! But, seriously, they should be able to suggest a way forward for you.

Just keep talking and unloading your feelings. We all understand and together we are strong. But, if one of us were to fall under these circumstances, we would all suffer and feel weaker for it.


gs960
3 years ago

I do appreciate your reply.. You got me thinking. I do not really know who to blame and I am so tired to blame oo-called “HOD”. Thank you for saying “we” instead of “you”.


stumbler
3 years ago

@gs960 , never feel that you are alone and that no-one cares. 😉


graham100
3 years ago

Gs960, hi mate. At your age there is more hope than you know. Things are starting to move much quicker, I’m in my late 50s. And if in the nxt few years somthing repaired the nerve coatings and got me walking again I could still have a good life. You have so much more time than me. Look how quick internet took over our lives. I was about 12 when my neighbour got a colour TV. 1st one I had seen. Hang in there son. There are people that are terminal no coming back, no new treatment on its way? We still have a chance as long as we keep going. Hard as it might be.


northernlass
3 years ago

Hang on in there Gs960 .. you never know what is around the corner .. until you go and look. I see you are on Meds.. are they able to monitor how things are going on that particular DMD..? maybe a side effect of your DMD could be dark thoughts.. let someone know you are feeling low and have been having these thoughts (MS Nurse..?) and I’m really hoping there will be medical people out there who can help. I was feeling low after my DX and my MS nurse said I could self refer myself online at “MIND” and from that I now see a lovely CBT councillor who just listens to me waffle on about all the shit in my life (and there has been a lot… :-/ )and how it makes me feel.. now we are about to start to talk how I can deal with my feelings..turn it all around. There is no rush and I look forward to seeing her weekly, even though every time I have, I’ve blubbed.. (I see her at the local GP’s surgery so not too far to go..). Remember always it is “WE” now.. you are one of “US” .. you are not alone and we will try and support you.. stay strong 🙂 Best wishes


gs960
3 years ago

Thank you everyone who shared their thoughts about my ‘stupid’ behavior. I will do my best to stay strong. It has been 6 years since my diagnosis and I still have not accepted MS. I hope I am going to find a purpose in life to give me some sort of motivation.


stumbler
3 years ago

@gs960 , that’s the spirit. Hope and purpose are two ingredients that can make up a contented life. 😉


aussiekylie
3 years ago

@gs960 we are all here to support you. Whether that support comes from giving advice, sharing our stories, or just being here to let you vent. Whatever you’re feeling, you’re not alone and no-one is judging you. Take care and keep us posted on how you’re doing.


gs960
3 years ago

@aussiekylie Thank you for your message. Today I had an appointment with my nurse. I feel little relieved after that.


katfight
3 years ago

@gs960 mate I’m glad you took the courage to ask on here, your best decision I think to get your thoughts and feelings out and then see your nurse.. i applaud your courage and i think I may take a leap out of your book and @northernlass to seek help.

I have been told so much to see someone but I also have a lot of denial and feel if I talk about it I’m weak etc.. that’s actually why I love this place so much because I chat so much and it’s not face to face so I can cry without someone seeing. Take care and keep contact x


aussiekylie
3 years ago

@gs960 so glad to hear you had a chat with your nurse. It’s amazing how good it can feel to offload all your worries onto someone else, especially if they’re not family or friends.
@catfight it’s not weak to admit you’re struggling or to cry, they are honest human emotions and are just as valid as laughing etc. I hope you are ok xx


gs960
3 years ago

@catfight Thank you for telling me that this post was not a mistake and hopefully some people could relate to me in some way.
@aussiekylie That is a good point you made about speaking with someone who is not close to you. Personally,I get pleasure talking to someone who is aware about my medical condition.


tabbycat
3 years ago

Hi, out there, this places is full of friends and we all understand. We all have really bad lows sometimes, but just sharing how shitty you feel can help. There is no shame in feeling shitty, the only mistake is not to tell anyone.
This is the darkest time of year, but spring will come. Keep talking and tell me if you can find any green tips of bulbs showing any where. Big hugs.


cameron
3 years ago

@gs960 – I’m sending you a big hug. Feel it now!! xxx Kay


Anonymous
3 years ago

I want to emphasize something that you need to remember besides all of the really warm feelings expressed in previous posts. You are not thinking rationally and I will offer reasons that I learned to help put the brakes on those dark thoughts. I used to think like you when I first had the disease and knew very little about it except that it was scary and lonely and the first time in my life that I ever had a health problem that did not get better. But there is much more to MS than that. 1) It can affect your brain chemistry altering your emotions and will possibly be the first time that you have had to experience major depression. It was for me. I had no clue what real depression was and could not even imagine how it consumes all of your thoughts. 2) Add to that the psychological impact of dealing with the knowledge of being dx’d with such a horrible sounding disease which on the surface sounds like a bleak future and feeds on itself; meaning the physiological component feeds the psychological component and vice versa. 3) Lastly, many MS meds can contribute to depression. YOU HAVE TO MASTER THIS KNOWLEDGE AND NOT LET IT GET THE BEST OF YOU! …as well as recognize that things are not as hopeless as your compromised brain is telling you that they are. There are things that your now “informed” brain can do to get you back on top of the situation. MS research is at the cusp of understanding and curing MS in my opinion. We have gone from none to over a dozen disease modifying drugs in recent years. These drugs are designed to halt the progress of a once unstoppable disease. In addition to these DMDs, there are a few neural protective drugs in clinical trials designed to protect the nerves and restore their function which means they will potentially reverse any disability that you might have acquired through accrued MS damage. You seem to be rather young which puts you in the sweet spot for thoroughly effective treatment. There are treatments available right now that are potential game changers for someone like you. I recommend that you read the blog entries here that reference lemtrada, a new treatment that is currently available that has seen tremendous success and there are remarkable testimonies right here in this blog. I hope this helps! All the best!


cameron
3 years ago

@mbrsinc makes so many important points. You need to get your head round the fact that it’s the MS itself that’s to blame for your low mood. I haven’t had suicidal thoughts for many years now but I remember what they felt like. It was my neuro’s package of care that made me see that I was going to be OK. Low moods have continued, though: I become anxious when there’s no need to be. Stupid worries become a spiral and end up completely dominating my thoughts. It was over one really stupid incident that I went to the GP and told her that I was losing my ability to think rationally. The heart was not listening to the head! She understood completely. She told me it’s a clinical fact that a diagnosis with a long-term condition produces a change in your mental state. So I take meds for this and they work!! They really do. This plus the right medical care (are you getting the best?) is my formula for coping. As @mbrsinc says, treatment is getting better year on year. That gives us all hope.


annp
3 years ago

Hi there (sorry I don’t know your name),
You can get better from MS – it is a life challenge – I know you are strong. There is lots of help out there. My name is Ann (62 started with Optic Neuritis at 29) I can help you.
Write and let me know more about yourself.

You are not alone.

Contact me xxxxxxxxxxx/xxxxxxxxxxxxxxxxxxxxxxx

Ann
x


stumbler
3 years ago

@annp , I have removed your phone number and e-mail address as it is never a good idea to post personal details on an open public forum. These details should be passed by Personal Message.


northernlass
3 years ago

Hi @stumbler I can still see AnnP ‘s details .. 🙁


stumbler
3 years ago

Thanks, @northernlass , us males just can’t multi-task! lol 😆


druid
3 years ago

Just went cold……. and then i read on and got to here (this post) a little bit wiser, I hope your feeling better now, all clear and good would be to much to ask, but better is a start. I have no or very little physical troubles myself, but oh my mind – its not how it was and after my diagnosis following my second optic neuritis episode a year ago it cleared a few things up. 14 years of MS undiagnosed and now i am getting past ‘being’ diagnosed and moving on, point is so much fits into place.
Dark thoughts? yes. Am i letting them win, no well not yet and i plan to keep it that way.
I wish you the best for yourself and your future and remember your not the only one, your THE one because this is your MS, and we all feel what you feel even if only fleetingly, don’t be alone!
Les


stephanie
3 years ago

I love the strength that is coming from all of these messages! I have has MS 16 years diagnosed at 17. I tried to take my life a few times but now see that there is light at the end of every tunnel. Learn to understand your MS. See what makes it happy and what makes it sad. Make the MS your friend however cruel it is because negative feelings and negative energy is always bad. Try to see what MS has given to you instead of what it has taken away. I am a paralympic swimmer so the ms has given me loads of exciting experiences and trips and opportunities. MS is hard but we are all here together – never feel alone. Good luck.


deeronpath
3 years ago

First let me start by saying if anyone is offended, i’m sorry..sometimes my MS doesn’t let me say things right and I have to restate them… it does that sometimes…know what I mean?

You are never alone. We always have ourselves…or is that myself..wait.. me, myself, and I..thats three of me..or is…anyways..if your thinking about not reading this by now just keep going. you’ve probably laughed at the sillyness of the comment by now.

I know Multiple Sclerosis isn’t funny but if I can’t joke about it..well…lol

So after losing my dad and later after (my diagnosis was 11/12/1999 at exactly 11:48am) a dear friend. You kind of have to teach yourself to think differently.

What I mean is, we have all at one time or another thought about that way out. Admittedly I have..Assisted or otherwise. It was in my first 5 years or so. You think about it in the positive and you think about it in the negative. You place yourself outside of the situation and you think of it from anothers prespective. No matter how you look at it. It’s a permanent solution, to what might be a temporary illness..There is always hope they will figure this out. If it weren’t for us that have it..maybe they never would figure it out..yikes..lol.

So for me I first had to think about the disease..or dis-ease..because that’s really what it feels like to me. It’s just an uncomfortable thing. Everything about it is uncomfortable! lol Lets think about this.. We with MS can think about things different ways like..”well if I do this long walk along the boardwalk, or beach, or zoo, or where ever, what will it do to me? How long will it put me out of commision?” and you adjust your next few days or whatever you have to in order to do the activity…or.. like me you ask..
“well if I do this long walk…is this area handicap accessible? can I take my cane with that cool built in seat with me? Are there places to rest and sit down? oh..are we on a time crunch that I have to try to walk as fast as everyone else?..hey can I take my scooter?? oh oh wait…can we do it in two days and can I take my scooter or chair or cane seat????” lol

Life is like that for me..turning a situation around make it work for you, change your way of thinking…I know this is off the track of voluntary assisted stuff.. but really, we are pretty strong people to begin with to be able to handle MS at all…living with it is just more proof we are so much stronger than we give ourselves credit for. 6 years ago you were diagnosed…and look you are still here..that should mean quite a bit..it does to me.

SO enough of my going on and on and on… read the spoon theory… http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Take things one day at a time.
Remember to do the things you enjoy..and if you can’t figure out a different way to do them.
This dis-ease is only a part of us. It isn’t WHO we are.
Every day you wake up, your kicking MS in the butt. Did I mention I can kick?
Every one of us matters. We all make a difference in someones life. We just might not know it.

Everyone here have made some very good points…


gs960
3 years ago

I want to thank everyone for their lovely messages which really helped me. I read each message very carefully and I just feel so happy to get so many kind and positive replies. I cannot describe how thankful I am for your encouragement, support and positive words.


amylee
3 years ago

I think suicidal thoughts are sometimes a totally sane reaction to an insane situation! And a way for us to let off steam when it gets too much. Doesn’t mean we have to listen to those thoughts though. Just maybe hear it as a message from yourself that you need a bit more care at the moment. I hope you find some good care…….a good doctor, good music, a good friend, a good cry. Just anything that helps take the edge off. Hope you’re feeling a bit better knowing there are people here hoping you’ll be ok. x x x


northernlass
3 years ago

Hi @gs960 just wanted to say hi and ask how you are doing..? 🙂


sunnydaylover
3 years ago

Wow, that was some post. Yes, dark thoughts are sometimes never far away, and with or without MS, life can bring us fear, things to be scared of, lots of negative things, but there is always HOPE…. and you are never alone…

Big hugs, chin up, onwards and upwards and hang in there!!!xxx


gs960
3 years ago

@northernlass big hello. I am doing okay. Thank you for asking. I hope all MSers are doing fine.
@sunnydaylover I also believe in that thing called ‘hope’ but I also think that hope is dangerous and it has the ability to make human insane. I appreciate your post. Thank you


northernlass
3 years ago

Hi @gs960 good to hear from you and that you are doing okay. 🙂 I am going to try a course of acupuncture to try and get my stupid MS symptoms into some sort of sink.. I’m going to post how I get on so if you are interested watch this space.. Do you have an MS center near you at all…I do-ish as it is half an hours drive away but might be worth a visit as they do therapy’s which I am also interested in giving a try but just going to see how I go with my HEDGEHOG THERAPY first at a more local (Private 🙁 £££..!!!) center.. Best wishes


gs960
3 years ago

@northernlass Hi, I hope you doing well. I have few centers in London. They are quite far from me but I am curious to visit them. They offer some great therapies which I think would be very helpful. Please let me know on how effective was your acupuncture. So long !!!!


denisa
3 years ago

Guys! You made me all emotional and I almost cried. So many wonderful people here on Shift.ms, and so much support and understanding. I said it and I’ll say it again: you are the best virtual community ever! Such strong people and such strong community spirit. Kurdistan to all of you for all the kind words you take time to give to anyone in need. It has always been like this: a group will always get stronger when facing a common enemy, our dear, dear MS! :))

I came to realize that the ones who are willing to help the most are the ones who need help the most.

@gs960, nice to meet you and glad you’re feeling better! I can relate to having down days and thoughts, but I think we all have them now and then. Your mind should keep focus on the good things your life has to offer. It’s a long road, but you are not alone.

Here we are indeed shifting ms’s ass! :))

Everybody, have a good Friday evening and may your spirit stay the same! (Very enthusiastic still :))))) )


the-pond
3 years ago

Hi

You’ve already had some great replies, and I’m really glad they’ve been able to take some the weight off you. I thought I’d share some of my experience since getting diagnosed. I was 26 when I got the news, and was terrified that I might ever need to use a wheelchair. But my life plummeted quickly and devastatingly. Within 2 years I was using wheelchair, and practically paralysed from the waist down. I had terrible fatigue, was incontinent, and tortured by leg spasms. My life had been shattered, and I’d lost so much – my body, purpose, my faith (almost). Like you I had no hope, and was desperately close to ending it.

But slowly, things started to turn round. I got help, started new drugs. My body got stronger, my faith changed and grew. And now here I am, ten years after my darkest night of the soul. I’m still a wheelchair user, but in the time since I got married, started working again, became a member on an NHS committee that helps to decide what research grant applications to fund, had a trial with the GB disability shooting squad. And last year I was lucky enough to be awarded a scholarship to learn to fly, thanks to the charity Flying Scholarships for Disabled People (I highly recommend you consider applying – your situation sounds right up their street).

Is everything brilliant now? Of course not – I still have dark times. But I’m gaining a new perspective on life, and I know much more about what I think is important in life and what I value. It’s been a tough old journey to get here though. And you need to grieve the loss of your old life. I found I experienced all the classic stages of grief – denial, anger, depression..;. They’re horrible things to go through, but can be necessary to get to the final stage – acceptance – when you can then start to rebuild your life. But whatever happens, whatever you do, there’s no judgement.

I hope & pray you continue to get the support you need.

Dan


gs960
3 years ago

@denisa I totally agree with you that this website is priceless. Thank you for your message. I hope all good people out there and all MS ‘victims’ feel wonderful. Have a nice weekend.
@The Pond Hello there. I appreciate your thoughts on where I am because you have gone through these hard times and gives me so much enthusiasm to fight ‘MS’. This may sound little childish but I think my post was immature. I think I am lacking experience and there are things I do not fully understand. Take care of yourself.

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