Hi all. I’m new here, although I have had MS for 17 years! I have not and don’t think I ever will accept this, at the moment I’m struggling 
My MS affects my left side, and I am, at the moment having pain in my back? Like electric shocks, this is the only way to explain it, my arm feels quite numb and useless too, but wearing a wrist support seems to help me be able to do things, like picking cups up etc. My mobility is affected, and I walk with a stick, as I get dull aches down my leg. I haven’t been to work since September 2012 (I’m a Teaching Assistant) I just can’t cope grrrr. Now I’m suffering with awful depression, but can’t tell anyone whats wrong, I feel a complete idiot, in the sence that I CAN’T CONTROLL THIS My MS nurse is ringing this afternoon, hopefully she can help. I really need help with opening up, and telling whoever concerned the truth, as I tend to skim over things, and tell everyone what I think they want to hear, and not what is going on with me. I have 3 girls, 1 grandson, and a bloomimg marvelous husband, so I feel I’m lucky, and should shut-up and get on with it…Sorry guys x
Hi, nay, nay and thrice nay! There is no need at all to apologise for the way you`re feeling.
But I agree you must open up to someone and maybe that person is your MS nurse. If you dont tell someone, you could be heading for a nervous breakdown.
The trouble with some of us, is that we want the whole world to see us as normal. But we have a serious health condition and it needs to be taken car of, however it affects us. That includes both physically and mentally.
we lead difficult lives…coping with a bloody tyrant of a monster…whilst trying to hold down jobs, family responsibilities etc. If we ask for help, hopefully we`ll get it.
Do tell your MS urse exactly how you are feeling, yeh?
luv Pollx
me again…forgot to welcome you to the forum. Here we do our best to support each other the best way we can.
luv Pollx
Thank you xx
Hi Shellie,
Welcome to the forum. I am sorry you are feeling low at the moment.
Have you thought about having CBT? I’ve not had it myself but a friend has and it helped a lot.
It’s difficult to speak to friends/family sometimes about your worries/feelings but we need to open up sometimes so we can move forward.
You can get refered for CBT by your GP.
Best wishes
Teresa.x
Thank you Treek, bu wahts CBT? X
Sorry for spelling I’m getting tired x
CBT is cognitive behavioral therapy.
It is a talking therapy. You talk to a therapist about your worries/feelings. They let you explain your worries and they try to help you put things into perspective and to change your negative attitude towards things and to think more rationally.
I don’t know all the details as i’ve never had the treatment but lots of people on here say its very beneficial. Most doctors surgery’s have access to one now. It seems to be an alternative to anti-depressants for some people. Best to talk to GP about both options.
Perhaps you could start a new thread asking for experiences of CBT?
Teresa.x
Hi Shellie 46, like you I am new on here and what you have said is exactly how I feel. I am really struggling with depression at the moment and all I seem to do is cry. I am normally such a positive person and always look on the bright side. I think it is probably a combination of things with me that have got on top of me. I was diagnosed in 2005 and have lower mobility problems and rely on a wheelchair. I now have weaknesss in my right arm and find it hard to grip with both hands which means difficulty eating, writing etc. The worse thing is I used to self catheterise but am no longer able to do this as I cannot grip the catheters. My neuro has told me that I have to have a suprapubic catheter fitted into my stomach so I am waiting for this to be done but have been catheterised in the meantime. He has also taken me of dm injections and said that there is nothing else he can give me as I have considerably deteriorated. I am lucky like you that I have a wonderful caring husband, two sons and two grandsons. My GP, neuro and ms nurse are also very good. I saw my GP yesterday and she said she could see how down I was and has increased my dosage of citalopram tablets and also offered to arrange some counselling for me if I wanted it. If all that isn’t enough we have decided that we no longer need or that I can cope with a three bedroomed house so it is now up for sale.
Hi Shellie, & welcome! Been having a struggle myself. Had diagnosis changed recently to progressive & didnt (havent) taken it very well. Like you, Im in “self denial” dont mean that horrible! Trouble is saying it out loud to loved ones seems to make it real. Im fearful at mo, its getting worse & trying to hide it is wearing me out!! Having Copaxone stopped soon as well, cos its not working. I know how you feel, as do many of us on here. MS team will understand, theyve seen it before. Dont bottle it up!!! Tracey xx
Aww bless you Nanny, I do hope you feel better soon, it’s awful having to rely on others, and for you to have to go through that op, thank God we got good hubby’s, and loving families, it makes a hell of a difference. Can you actually pin point why you cry? I take it that I’m weak, and that I need to man up, because their are worse things. I do feel better talking on here, it’s so much easier than face to face, it lets you say what you mean, rather than like me, I say what I think others would be ok to hear. I hate pitying looks, I too am downsizing, as 2 of my girls have left home now xxx
Thank you Tracey, you are soo right “self denial” thats me. I wish you well honey xxx
Sure everyone has done it Shellie! You dont need to “man up” its hard enough to get our heads round this horrible “monster”!!! My lot are brill too, I only show them what I want them to see, glad Ive got grand babies, they say it as it is!!! Trouble is you cant kid kidders!!! Talk to MS team hun Tracey xxxx
Hi Shellie, no I can’t pin point why I cry it is not like me at all. I think I am worse at the moment because since I saw my neuro two weeks ago and he actually said that it is now progressive and there is nothing more he can do it all becomes real as to a certain extent I think we all probably clutch at straws a bit. I received a copy of he letter he sent to my GP on Monday so it is there in black and white. My hubby and family are really supportive and they say they understand how I feel but you can’t unless you are a fellow sufferer. It’s so hard to explain to anyone how you feel that makes sense and I suppose like you most of the time I try and put on a brave face and make out I’m coping better than I really am. It’s just at the moment I don’t feel like I can go out or see anyone as I immediately start crying and I would especially hate for my young grandsons (4 and 1) to see me like this.
Hi Shellie I’m exactly the same 18 yrs for me this year with this awful disease and the last 3 yrs have been the worst relapse on top of relapse, I’m really struggling with it at the moment can’t even hold a knife and fork which is so frustrating. I have a good husband who’s very supportive when he can be, he’s away most of the week and sometimes up to weeks at a time but that can’t be helped it’s the nature of the job. I also have a very good family but they don’t really understand what it feels like to struggle as they don’t see it day to day. I keep telling myself that one day I will really open up and say it how it is but when it comes to it I just get tearful & keep it bottled up. Everyone on here is great and I love to hear their stories/views but I just can’t be that open. Hope you find the strength to open up & maybe one day I’ll do the same. xx
Thank you Bambi, I wish I had spoke about this before, as I thought it was only me, and that I was being a selfish idiot, I know realise it’s part and parcel with the MS! I’ve made the 1st step, I so hope that you can too. Xxxxx
You know, another thing that bothers me is… Oh God, I have been told that life expectancy is 30-40 years from diagnoses, I asked my consultant, and he just looked confused, and me being me didnt push it, this is a horrible thing to talk about, but is something that is adding to my distress x
Shellie I don’t think it’s selfish at all I suppose it is just a hard thing to accept that our bodies are no longer what they were xx
Shellie I dont think the statement 30/40 yrs life expectancy from diagnosis is right!! Blooming hope not anyway xx
I hope you feel happier soon. I understand how difficult it is to actually accept and deal with our ms lives. But, keep positive and strong , concentrate one the good things don’t think about the others. I’m a teaching assistant too, and have 3 children ,just think about all you have and do for people Hope x