4 years ago
Long time no speak! Could do with a hug!

Hey! Haven’t posted on here for months. Hope you are all well? I just need a place to vent properley. I still live at home and was diagnosed just over 10 months ago, although to be honest am sure I have had this for longer. I just feel so upset/ up and down emotional and feel that although my family are supportive they don’t understand how I am being affected. My MS affects me daily now and there are days where I am upset that I have woken up in the morning( I know that sounds bad) but just get scared how I am going to cope. Do not feel like I am at all. Any words of encouragement? xxx

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Sorry to hear your so down. Unfortunately, that is also a part of ms, along with mood swings, irritability, depression etc all labeled as ‘Emotional lability’. It’s early days for you yet and to expect you to be balanced about things now, is a big ask.
Have a chat with your ms nurse or doctor, they can check if you are suffering from depression and give help (if needed).
You will hopefully reach an equillibrium within this world of ms, given time. We’re all here with you, feeling for your anguish.

It does get better! xxxxxxxxx

You sound very ALONE. You’re right – nobody who doesn’t have MS really understands it. But at least your family are not acting like a lot of other people’s – i.e. behaving as if they do understand and start telling you what you ought to be doing! Like all of us you need a ‘plan’. You absolutely have to understand your own MS – what it does daily, what irritates it, what seems to calm it etc etc. This is something that (sorry!) takes longer than the ten months you’ve had. If you’re like I was, I expect you’re living in dread in case one morning you can’t move or it all goes pear shaped. Well, in all probability, nothing much will happen and you’ll likely be as you are for the foreseeable future. But it’s not much use me saying this – you need to hear it from your medical team. It’s the job of the MS nurse to help you stabilise and let you vent your feelings. Are you on meds? I ask because one of the pluses of being on DMDs is that you get much more thorough monitoring between your consultant visits. You really need your MS nurse or consultant to tell you HOW YOU’RE DOING. Once they know what symptoms are troubling you, they can help with meds and advice. They’re also good at spotting whether feelings of fed-upness are in themselves MS depression. Once you really get a handle on how you are, you can start to make your ‘plan’ – by that I mean sort out a regime that works for you and keeps the MS at bay. It can be done. But don’t try to sort it all on your own. xx

Ahh thank you for your messages. Umm i menitoned this to my neurologist and he says i am not depressed i am just sad as i am grieving for my old life. I do tend to agree with him. Umm as for the MS nurse….hmmmm. she doesnt particularly like me as i am on LDN and she is soooooo against it. No i am not on a dmd. chose not to go down that route. Thanks so much for the support! i really need it. is 10 months really still early days? xx

Yep 10 months is no time at all. you got the rest of your life! Maybe you ARE grieving for your old life, mebbe your family is, it also affects those we love and those around us, in small, insidious ways….
Ask the MS nurse if there are any support groups in your area, or use the national MS society site to research groups local to YOU!
Then you can meet real ppl who are the same boat. I mean we all are, but I dunno where you are?

10 months is definitely ‘early days’, as you have (depressingly) the rest of your life to come to terms with it, assuming they don’t find a cure for us.

Ooh, SNAP @reddivine

If you’re having exacerbations, maybe go on a tolerable DMD – slow or stop the damage if possible. More effective meds and treatments will be available over the next few years, but nerve damage is hard to repair.

As far as the mind and worry goes, I’ve found meditation to help. It just shuts down the negative thoughts for a while & gives me a break. Youtube has videos. Jon Kabat Zinn’s body scan meditations are a good place to start.

We’ve been dealt a bad hand with this disease, but we have a choice with how it affects our happiness. We are lucky if we have others who will support us. Not everyone does. Good luck.

Thank you. I live in London. Tbh i dont speak to the MS Nurse much at all. She said LDN is a snake oil bla bla. Yea i think maybe i need to meet people with it. I really didnt know it was gna b this hard 🙁 x

Hi Beccy… You’ve had some great advice here, I’ve also gotta try and meet people near me who will understand… It can feel so lonely and it must help to spend time with people who can truly understand!

Anyway sending loads of hugs your way xxxxxx

Btw I’m also gonna try LDN soon, my new GP who is absolutely great is interested in me taking it and I trust him (I don’t trust many!) so it must be ok… From what I’ve read recently it’s much better than snake oil or frog semen 😉

Best wishes xxx

Heh, sorry to hear you are feeling so crap. i too have this, in fact am there at the moment, constant mood swings, really angry then not, and i am on DMD’s, my MS nurse is a prat and god knows how im doing as i have not accepted this MS shit and i too have been diagnosed for ‘not long’, 12 months. I’d like to think it was long enough but in the MS world its nothing…..heh ho…..and so it goes on…*BIG HUGS* to you, perhaps we can just go sit in a corner until we feel a bit better to face the world…..hate this not knowing what mood im gonna be in from one minute to the next…sorry…babling now xx


Hi Becky…

Incidentally if you want to meet up with myself and RD in the next month or so for perhaps hugs.. No doubt coffee and cake could be in the picture as well:) I’m fairly nearby:) And reddivine is good for hugs as am I 🙂


GP’s what do they know eh.. But could be write about the grieving process.. Its a big change, but the journey DOES continue… 🙂

Aaah badgrammer! could be right! !!

Thanks to you all! Its such a horrible disease! Yea Would love to meet up for coffee and cake! Private message me if ur interestd 🙂 Yea think grieving process is true…Its a life change x

I know how you feel. hit me up on here if you wanna talk.

I’m still new to all of this too Beccy, just about 7 months diagnosed. I think its totally
normal to have bad days, emotionally, I think we all do. I’ve recently started seeing a therapist, and I’m finding it really helpful to have just an unbiased person to vent to. Don’t know if it’s an option for you to look into, but I’ve found it good for me so far.
If you ever need to chat don’t hesitate to msg me!

All this sounds too familiar. I am angry at everything at the moment and very frustrated at the limitations the ongoing symptoms impose. What is also frustrating is trying to get the appropriate treatment from the NHS. GPs are over paid useless buggers! And the nurse is totally hopeless. If it is not bad enough being ill, you have to do battle to get help. I do not blame you for not wanting a DMD. I have never been as ill in my life taking Rebif, but I am taking it because the MS scares the shit out of me with what it has done to me so far. You are definitely not on your own with any of your feelings!

Thank you sooooo much! 🙂

hi how you today? i like you have not spoken to my ms nurse in a long time i have ppms and get days and weeks like you do we are differnt and deal with things are own way. if things are that bad go see your doc see what they can offer you. you may need just to talk let it all out that is a big part just to sit and talk. hope you pull through it x

I don’t see my ms nurse very often and she’s usually a stickler for doing things by the book, following the methodology laid down by the clinic she works for. She’s a very nice lady though and it’s good to know the support is there when i need it.

Re the depression, i think part of it is knowing each day that we are (to put it simply) ‘accidents waiting to happen’ as opposed to healthy individuals who may presume to continue in good health at least perhaps until aging takes over.

That said, it is still such a varied condition in each individual that worrying about it can only do more harm than good. Take it one day at a time, never ponder the future too hard and that should help you, at least mentally to overcome some of the fears and take control of it rather than letting it take control of you.

If i have a crappy day, or some flare up that bites a bit, I still feel lousy for a while and it is depressing. The thing is to let it go, get back in step with the positive as quickly as possible.

Hope you feel better soon.

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