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Moan but not all MS

Hi, Sorry I’m posting anon, I’m worried that I might moan to much and future posts might be ignored. I suppose it’s not a moan really just a release but I don’t have anyone too talk to. I am rather frustrated with myself and I don’t know how to sort myself out. I worry about everything and I mean about really stupid stuff, I second guess myself all the time and I feel useless and worthless a lot of the time. I have OCD tendencies. I’m annoyed with myself for having MS and I try to ignore it, i feel guilty for having it. I have a new job who don’t know that I have it but sometimes I’m so tired I can’t even think and I think they have noticed on a couple of occasions. I’ve been diagnosed a year and I should be used to all this now, I either try to ignore it or feel like I’m making a big deal out of nothing. I’ve been injecting for months but it still takes ages to do it every time because I can’t stand it! My MS is that bad, mainly sensory when extremely tired and tiredness. I feel bad for even moaning about all this as there are people much worse then me. I feel I don’t have a right to want to moan or to find anything hard. I do wonder sometimes what it would be like to run away. Sorry

Don’t worry about moaning hun - thats what we are here for. How many posts do you see on here that are people having a rant and a moan - I’m sure they can’t all be from you.

Sometimes its good to let it all out and if you don’t want to let your family know how much you are affected then do it here. My MS is about as mild as you can get and even i have a moan every now and again. Its what you are used to that matters.

Trust me - you will learn to cope. It often surprises me just how much people can adapt when - lets face it - we have no choice.

Even if you feel you can’t have another moan on the general page I give you free rein to PM me. I can’t help with medication or bad symptoms so I am perfectly willing to rant and rave with you! And I won’t tell a soul you are moaning - AGAIN!!! hehehehehe

Take care hun - lots of hugs

JBK xx

Thank you so much for replying, it’s means a lot. It’s all up and down. My family don’t really understand plus they try to ignore it all as well . Hope your having a good week x

Hey Anon,

Don’t worry about having a rant or a moan! Here is the best place for that as everyone on this site is affected by MS in a variety of ways. Each person’s perspective is valuable and sometimes it can all get you down.

My MS is difficult to manage at the mo as the meds for it are still in the “getting the balance right” stage. I am hopeful that things will settle down in time but I just don’t know that it will yet.

Feel free to post whenever you are feeling low. Or the opposite! You never know, there can be good days too.

I am always hopeful that the MS I have won’t continue to define who I am by the way I walk, climb stairs, shower or eat.

I am sorry that you are feeling so unhappy,

Take care

Asher xx

Hi Anon,

I’m going to pick one line from your post

I’ve been diagnosed a year and I should be used to all this now, I either try to ignore it or feel like I’m making a big deal out of nothing.

Oh hun welcome to the club! A year is NOTHING to get your head round having MS. I’ve had it nearly 20 years and I still feel all the things you do – its inevitable that you will feel angry and frustrated. Yes there are probably people worse off but that doesn’t invalidate you feeling in need of a moan, cast off that guilt. When I was a little girl my mum used to regularly chastise me about starving children in Africa – it didn’t make me want to eat the porridge in fact I remember muttering that she could send ‘em it! Other people may be better or worse but this is about how YOU feel and how you are coping.

I get a sense of low self-esteem in your post. I think you would be helped with some counseling. They would help you to reevaluate your self and find a way to cope with the effects of MS. IMHO ignoring it is not the way to go. To try and pretend that there is nothing wrong will only make the fatigue etc seem worse. Why not see if your GP could refer you? Your MS nurse may have access to neurological councilors.

Jane

Sticky point - perhaps trying to ignore it isn’t the best solution? It’s taken me 3+ years to reach some sort of acceptance of my MS and only by talking to husband, mum, sister and bestie have I now managed this. Kids only 9 & 6 so they know mummy has dodgy leg and gets tired a lot but they’re too young to process more. A family bereavement due to suicide has made me realise that acknowledging the bad stuff - rather than my previous ostrich mentality - is a better option for my mental well being. I have now ‘officially’ disclosed at work and that has given me a massive sense of relief. Just a thought - hope I’m not preaching - and hope you feel some improvement soon. xx

Hi anon I understand and you. I’m a newbie too. I’m finding it hard to accept the new me. I’m doing my best but sometimes it’s hard. I fell down the stairs today. This is what my life has become :frowning: but then I picked myself up, dusted off my bruises and got on with it. Good days and bad. (Good hours and bad even) I hope you feel better soon. Love Lilly xxx

Hi anon

As Wendel and others have said, a year is nothing - I sure as heck hadn’t come to accept it within a year, and I was still in denial and trying to ignore it. Trying to ignore things like this are normal and understandable. It’s the first stage of grief. and you need to grieve the loss of your old ‘healthy’ life. However, there comes a time when it’s no longer helpful and you need to start facing up to things. Then you may find you experience some of the other stages of grief, like bargaining (that’s partly what you’re doing when you get frustrated with & blame yourself), anger & depression. They’re not nice things to feel, but they are important things to journey through as you start coming to terms with life. Thankfully though, it is possible to come to a place of acceptance and to begin to re-build your life again. But even when you begin to accept it, you’ll probably find you’ll start the whole cycle again if any new symptoms come along.

Something that came across from your post is that it seems like you’'re living under a lot of 'should’s - what you should be like, what you should be feeling, what you should have done instead. I think it would be really helpful to be able to let go of thise 'should’s, to be able to forgive yourself and, crucially, to be able to accept who you are without judgement.

It may be helpful to get some counselling or something like Cognitive Behavioural Therapy - ask your GP about it. You may find mindfulness meditation helps too (try getsomeheadspace.com, they’ve got a free course you can try called Take Ten, which is just ten, 10 minute-long meditations). I find mindfulness meditation really helpful for things like depression, anxiety & pain.

I hope you find the support you need.

Dan

Hi Anon I totally sympathise with you. I have days when I feel exactly the same. Following on from Dan’s post above, I’ve heard that the mindfulness meditation can help. The online ms library has a wealth of resources - there are mindfulness CDs and DVDs to borrow. I’m just waiting of mine to come through the post. You’re not alone and what you are feeling is totally normal. PM me if you need to chat Keep strong Jane xxx

Hi, just wanted to send you my love due to the family`s loss.

You`re coping best you can, I can tell.

Take care,

luv Pollx

Hi, like the others have said, there is no need for you to apologise about needing a moan…we all do that! That`s why we have forums like this. No-one will ignore your cry for help.

It seems to me you`re very much in denial still. It can take much longer than a year to accommodate MS into your life.

Running away wont make your MS disappear hun. It is a part of you for life. I used to feel like that too! We`d only take our conditions with us!

Sounds like you could do with someone to talk to face to face with, perhaps an MS nurse. Do you have one?

Your OCD could be why you are feeling that you should be used to it by now…is there a support forum for that? I am wondering if you are depressed and maybe talking to your GP about your feelings will help.

luv Pollx

[quote=“Boudica”]

Hi, just wanted to send you my love due to the family`s loss.

You`re coping best you can, I can tell.

Take care,

luv Pollx

[/quote] Thanks for that Poll. xx

Hi Anon

You need not feel guilty for moaning, I’m sure we have all felt exactly the same as you - I know I have, and I still do sometimes.

MS is cruel and unfair and it turns our cosy little worlds upside down. A year is no time at all to get used to that. During my first year I veered between anger and tears on daily basis, regularly at first, then a little less but still felt resentful of those that moaned about trivial stuff. It took me a while to accept that this body with its weird symptoms was the new normal and that I would be okay.

As others have said, you probably need to speak to someone who really understands MS face-to-face. I joined my local MS branch and it was such a relief to realise that others went through the same thing, even someone who used to work in the health profession. I began to feel less guilty and angry and more normal.

However mild your symptoms are, it is still different to the life you knew before MS intruded and you are allowed to feel grief for the life you once had. You will find acceptance though, whether it be by talking on here or by seeking the help of your MS nurse or your local branch. Whatever works for you.

Take care

Tracey x

Hi what Tracey says I’d good advice and I can relate to it! I’m newly diagnosed too just last year and its takes a lot of getting used to I suppose you never really accept it you just learn to live alongside it!!! When I feel ok I’m quite level headed about but when feeling crap it’s a different story! I’ve had the running awAy feeling lying in bed planning to disappear in the middle of the night and go away where nobody can find me but logic stops me I’m still gonna have ms and my children and husband are gonna miss me (well eventually lol) anyways getting some counselling would be a great idea as sounding off to someone detached from you helps!.. Good luck and remember the feelings will pass I’ve had some really bad days bug honestly they do pass and I will probably have more…it’s such an emotional roller coaster ride…take card Emma x