Does anyone else just feel constantly misunderstood, angry, let down, confused and just generally sad?? I feel like everyone is just letting me down constantly. I don’t think people understand how I feel. I don’t even know if I know how I feel. When Im tired, to the point where I’m just crying with exhaustion, I hear “yeah I’m tired too.” maybe I am being dramatic and need to just get on with it. When I walk and my legs are feeling like they’re stiff and about to stop working at any point I feel like is this really happening or am I being over the top? I feel so down recently and just constantly on the verge of tears. Lump in my throat at all times. Am I just hormonal? Is there something more going on? I feel like Ms factor’s in with every issue or problem that arises and is it meant to be like that? My partner is very good and very hands on and helpful, which just results in me feeling constant guilt and worry that it’s all going to get to much for him at some stage and he’s going to break. I don’t think he understands how “mushy” my brain is sometimes. He can’t comprehend how I forget such simple things or manage to only preheat the oven to 120 when it’s meant to be 200. My friends were supportive at the start and still are to some extent but all they seem to ask is “how are your legs” like that’s the main issue. Nevermind I’m pretty much blind in my right eye, always tired and just mentally f****d. But of course I don’t want to say any of this to anyone because I don’t want to be a burden or seem like a drama queen. Sorry to go on I just feel like no one really gets it. I really don’t know if I get it myself.
Oh and also I’m struggling with work. My job is not strenuous or hard by any stretch of the imagination but it takes It’a toll on me and I am getting to a point where I don’t know if I can do it anymore bit I can’t afford not to. Anyway when I say this to people I hear " your jobs easy, I know people who work full time and they have ms" again, making me feel like I’m just weak and pathetic and need to shut up and get on with it.
I hear what you are saying because it is exactly how I feel…hang in there.
Someone told me to show people a list of symptoms of the spoon theory etc but who wants to keep on trying to explain how rotten they feel.
Legs ! Yes they are a major problem but far from the only problem as some people think.
Maybe a bit of a rant has helped you…I really hope so. At least we can rant and know others DO understand on here.
I,m glad your partner helps you, but also get that makes you feel guilty for needing the help…the whole MS thing is ****
I feel like I’ve had a massive diagnosis thrown at me and at first I definitely didn’t accept it and was convinced they had got it wrong. Now that I’m accepting it and trying to tell people how I feel, it feels like people think I’m being over the top which then makes me question myself yet again. Am I really experiencing what I think I am or is it just normal everyday aches and pains and complaints that everyone has? I think the mental impact is alot worse than the physical at the moment!
100% Ditto …
i can really recognise how you are feeling.
quick question before I ask it, read all the way, please.
Only reason I ask q is that you asked 'or I am just hormonal. ’
Ok, so over time I have posted when I feel at the end of my teather & have re read a week later & things have looked a little different. As your screen name is char38. I am making the jump that you are a 38 year old woman. I find that the few days before my period & during it not only I feel more ‘not in control’ but more relevantly my real symptoms feel more notable.
so um, ms feels worse, stress that I can’t ‘do it’. ( work / commitments ). Panick, stress = feel worse & more out of control.
so my question is… Is it 'the time of the month ? '.
I haven’t read anything about female hormone fluctuations & ms but I personally feel it’s an area to be resurched & what it is that make the ms worse and hopefully find solutions. My novice thought is it may be related to body temperature changes.
if I am way off the mark & where you are is unrelated I apologise from the bottom of my heart.
Your response sounds completely normal, no one will ever completely know how you are feeling, but some people here will have a better idea than most.
It is very tough for both you and your partner. Because you are up against issues that many people will ever have to face you can allow yourself a bit of slack and you can let people know (clearly) how you are feeling. Sometimes when people ask me how I am feeling I ask them "do you really want to know? " if they say “yes” and I trust them I will tell them in no uncertain terms how I feel and I know that despite being unable to make a big difference, they care, if they say “no” I will reply “as good as can be expected, thanks” (which is my usual reply for people I am not close to)
It will be very difficult for your partner to understand, so one of your new jobs is to help him. I showed my amazing wife the shift.ms website videos which are easier to digest than loads of text.
Give yourself permission for a bit of self indulgence and then get back to being you.
All the best
I intended my last post to appear as a response to scudger.
char, I really hope I haven’t afended you, I was just talking from my experience.
Dear Char 38. Whether other people have it easier or harder than you is not that relevant, I am sorry that things are tough for you right now.
Be kind to yourself. Your work place should be able to make adjustments (I think that they are law bound to do so). And abled bodied people don’t mean to be horrid, so tell them what you need (a listening ear, someone to take the kids, do your washing etc), and depression is part of MS for many people so seek help from your GP (counselling sessions x6 is the norm), and you and your partner…keep communicating (don’t think too far ahead and don’t do guilt). And treat yourselves, do something nice together X warmest thoughts Ali
I’ve just read your thread and it has made me feel so relaxed and not alone in this battle! I am a female but I’m actually 27. Hormones definitely play a major part. I’ve just done a little research and there are a few articles that speak about the connection to time of the month and Ms symptoms flaring up! Probably doesn’t help that I also suffer with PCOS so my hormones are generally all over the place as well (sorry for the too much info!)
Thank you so much for your message Mick. I think I find it hardest to let people know how I feel when I can’t make sense of it all myself! Maybe I am too hard on myself, instead on trying to understand it all I should just accept it and ride the waves! Supportive partners are the greatest!
No offence taken at all, sorry I was finishing up at work.
My work place are amazing! I work for a family as a nanny and during the day, whilst the children are at school, I take things at my own pace. There are no expectancy for what I will or won’t do, it’s just the long hours that I seem to struggle with! I know people don’t mean to be horrid and I’m sure in their situation I’d find it hard to find the words to say to someone in my position, I think I’m just taking everything so personally right now. I have been to my GP, I’ve been waiting for counselling since September! Thank you Ali x
Getting a diagnosis of MS is always hard. And it does take time to sink in. I think we have all had the feeling where we feel that we’ve exhausted our friends understanding and patience.
Having a good rant about how shitty life can be is sometimes necessary. It’s not always helpful to measure your suffering against someone else’s, because we can only live the life we’ve got. And at times it seems like it’s just unimaginably hard.
This forum is a place to share our bad times as well as the good. And not to be judged, we tend to judge ourselves much harsher than anyone we know does.
So try to be kind to yourself. You are lucky to have a good partner. And perhaps it’s time to talk to your manager / occupational health department / HR about how you are finding work difficult and see whether any adjustments can be made.
And by the way, when people asked me how I was, I always used to say, ‘oh I’m OK’. Now I tell them if I’m having a hard time, if my legs have completely given way, if I’m utterly brain dead and if life just seems too damn difficult.
The good times are coming I’m sure! It can only get better right? Big hugs xx
I completely agree with you, i got diagnosed just before Christmas i had neck pain and general numbness in my arms. People don’t quite understand. I dont like to make a fuss at work so just get my head down and get on with it. I think because its not seen people think everythings ok
Just like to say that I’m female, think approaching menopause (sorry maybe too much info there!) but I have noticed I most 100% feel worst around “the time”. I don’t know if there is a link with ms or whether it’s the usual “the time” issues. But in any case your not alone with the mush brain issues. My friends find it amusing when I get my words muddled up, the best one was “ I saw someone driving eroticly around a roundabout today“ when I meant erratically! At least I’m providing entertainment for them.
Dear Char, I am so glad that your work place are good, but yes, the fatigue is very real for People with MS. The thing that I most hate, is the long term, everyday-ism of MS. I would love to be to be normal, just for a moment?
I am due to return to teaching this month and am dreading it. I am though, writing lists of all of the chores (that need to be done and ones that can be left out!) So that it can be shared. And a friend has offered to iron for one hour per week. And mum is going to hoover, once a week. And the best thing…I have found that our local town hall shows cinema once a week. They save a seat for people with disabilities and it is cheap and u can take your own beer! Like I said, try hard to find a treat.
But the weepiness is not good for you - go back to your GP and demand counselling, remind them of your diagnosis and tell them that you are at your very lowest. (I also visit the nurse for regular blood tests. A wait in the waiting room with a pile of magazines is truly cherished).
l am sorry not to be too helpful but can offer a listening ear.