I’m new to this forum but hoping i can talk to some people who understand whats it’s like to live with this monster! I was diagnosed in 2008 and generally have been very lucky in that the majority of my relapses have been sensory only. Due to this i have been very positibe about my disease and have not let it rule my life. However in feb this year i started copaxone due to producing antibodies to rebif. in march i started with lightheadedness and was told i had an ear infection. The lightheadedness has persisted since then. i was seen by ENT and told i had vestibular neuronitis and it would settle. It hasn’t and my neuro thinks it could be a brainstem relapse. everyday is like a ni%htmare. i’m living in constant fear that icm going to be lightheaded forever. it kind of feels like i’m drunk when i’m not. i’ve tried antivertigo meds with little success. i’m just so down and tired of it. i have massive support from ky husband and family but no one can really understand and i just feel so alone. somedays i just sit and cry because i don’t know what else to do. i feel such a burden and a let down to those around me. sorry for waffling, just needed a release. any advice welcome. thank ypu
Hello Nicola,
Rest assured you are not alone, there are loads of people who feel the same. You must remember you are not a burden on those around you especially those who love you. I cannot comment on your problems as mine are different but I’m sure someone on this site will give you some good advice. If you just want to chat and unload your sadness and have a moan and groan, that’s ok we will listen. Take care.
Janet x
Thank you xxx
Dear Nicola
What a hellish time you are having, I don’t have any knowledge of your particular drugs BUT have too much knowledge of the monster that is MS, don’t let the ba***rd get you down. My mantra when the you know what hits the fan ‘I can do this’ it may sound a bit pathetic but you can do this! Just remember to breathe deeply and slowly and think about the breathe and nothing else even just for 5 mins to start with, make your body think on something else. We are here for you its that simple we care, AND you are so not alone, M
Thanks. I do have a chat in the mirror with Bert (the name i have given my ms monster) and tell him he can do his worst but he won’t beat me, just gets a bit on top of me sometimes but just coming on here and reading your comments has made me feel better. I always avoided these forums because i felt like it would be a constant reminder but i’m so glad i joined now. Thank you xxx
Nicola, you what?.. You have chats with your MS monster called Bert? Go out for a walk (sort of…), get some fresh air!
Visit a local MS centre, talk to fellow MSers. BTW, this comment is not meant to offend you, we all need ‘wake up calls’ at times! (OK I admit it, I talk to my cat and rabbit at times, but at least I can ‘see’ them…); you still look at ‘you’ in the mirror and no one/ nothing else!
All the best.
I have never done it but I think giving your MS ‘monster’ a name is actually quite a good coping mechanism because then you see it has separately from yourself and it doesn’t dominate. That is the understanding I have of it from an article I read a year ago on the MS Soc website. If I remember rightly people were even drawing there MS monsters!
Nicola-sorry to hear you’re having such a tough time. I had vertigo in my first attack and I still get light headedness but its not constant. Have you had any steroids to speed up remission?
Hi Mel,
Same happend to me i had a very bad brain stem relapse,and was very,very ill for months, i was in bed for 4 months and it took me over a year to recover a bit, but my vertigo didnt kick in until 2008 and 2009 and since then vertigo is my worst symptom,it is my most disabling symptom,and causes me to have depression too, because i cannot do anything at all for it, when it strikes,all i can do is wait for it to pass,so that means all winter i am really bad, i pick up in the spring/summer months only to be bad again come autumn/winter,and like you was widowed with a toddler to bring up,at least i managed to bring my 2 kids up before, i got as ill as i am now though,i dont know HOW i would have managed if i had been this ill when my 2 were younger.
jaki xx
Hi Nicola,
We all have such weird and un-wonderful symptoms don’t we, but please be assured that with MS there are always several people out there who are going through much the same. It is a sort of a club, but no one actually chose to buy the entrance fee. I suppose that really we are all just ship wrecked! So come and have a chat here whenever you want to. Your changing from Rebit to Copaxone could also be altering your emotions too. Hopefully, if this is the case, then this should start to settle down soon.
I hope that you are soon feeling heaps better than you were,
Moira
Thanks for all your comments. It’s actually a book called the ms monster that my ms nurse sent me. You give it a name, an image with the idea that you’re fighting something you can see rather than yourself. I gave him a stupid name so i could take the mickey out of him!! been out today and whilst i felt lightheaded now and then, i pushed through it and actually feel pretty good now. Fingers crossed it continues. I had steroids earlier this year which didn’t help. Guess i just need to carry on and not let it rule my life. Nice to know i’m not alone xxx
My dear Nicola, as you can see from the amount of your replies, you are not alone. We here truly understand your feelings.
I have been married for nearly 40 yrs and my quick progression, in PPMS, means I am heavily dependent on my hubby and other carers.
i also sometimes feel alone. We have single beds, as mine is a profiling one and i have bladder and bowel issues, which means my hubby doesn`t want to climb into my bed for a cuddle anymore. This makes me feel lonely too,
But none of this makes me wish I wasn`t here. Life has other rewards for me. I have recently had a wonderful respite break, which has somehow given me a peaceful and calm feeling inside.
Keep battling, my friend, and don`t forget we are all here for each other…on or off this forum!
luv Pollx
Oh Poll you sound like you’ve had a tough time. I am lucky really in that since my diagnosis i have had mainly sensory symptoms which haven’t bothered me, just this lightheadedness is a nightmare and gets on top of me sometimes, but i am determined to get past it and really appreciate your kind words! All the best to you xx
hi nicola
i just wanted to say i really hope you feel better, really soon.
whenever you need to offload this is the place to do it. there is always lots of support and sometimes that can be the only thing that can help.
lots of best wishes to you.
mandy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks Mandy, just talking on here has made me feel better. Think yesterday was just a bad day xxx
Oh and just to clarify i don’t spend ages talking to ‘Bert’ in the mirror, just tell him to go away when he’s getting on my nerves haha :0)
Hi Nicola, i have a good talk to ME in the mirror when things get tough,i give myself a telling off and it works too,i have heard that naming the MS can help, like you do, so i might try that one.
jaki xx
It really does help putting a name and face to it. Much easier than fighting yourself. Definately give it a try. I imagine Bert to be a horrible slimy swamp monster who mostly stays in the swamp but sometimes he raises his ugly head and tries to drag me in. I imagine he’s got my legs and is pulling me but that my husband has my arms and he’s pulling me away and as long as he doesn’t let go, Bert will never get me in that swamp! Sounds stupid but it makes me feel better xxxx
xxxxxx
luv POllx