So this is the first time I have posted on the is site and it is actually the first time I have asked for advise or help at all on the subject of MS. So basically I have been diagnosed for almost 10 years now and suffer from a lot of the most common symptoms and some uncommon (too many to list!) but recently I have been feeling guilty about moaning if I am struggling. I try to live my life to the fullest of my capability and I am lucky my condition isn’t worse than it is, although sometimes that can be a cold comfort but for the most part I am a positive person. When asked how are you? I usually instinctively reply with: yeah I’m good how are you?! I don’t like to complain and I like to stay positive. But on the rare occasion I say: not so great, had a rough night last night. I seem to get ignored? Now I am not looking for sympathy however sometimes we all need someone to support and understand how we are feeling and what we are going through, but no one seems to ever acknowledge just how horrific I do feel. No one seems to understand and sometimes this makes me feel bitter when I always try to understand how my friends feel if they feel unwell. Sometimes I do think to myself that they would understand if I were in a wheelchair, which sounds horrific and I really don’t mean it to sound bad but people can’t physically see what is wrong with me and so I guess they struggle with understanding which is fine of course but not one person has turned around to me and asked about it at all, which I would always make a point of doing if it were my friend. This then makes me feel guilty about moaning about it and so I get stuck in a rut, and I’m guessing because people fairly hear me moan, they don’t know the daily struggles of what we have to go throug. So my question is does anyone else ever go through that feeling, or thought process? Is it normal? I hope it is but I just don’t know what to think anymore of how to deal with it. I am not the sort of person who would reel of a list of symptoms when asked if I am ok, so how do I deal with it??
We have all been subjected to compulsory training in what it feels like to have a chronic progressive neurological disorder. We have all done (lived!) the compulsory module about what kind of behaviour from others makes someone with MS feel valued and listened to, what kind of behaviour makes that person feel snubbed and squashed. But most of the other people in our lives have not been on the course (lucky them). It does seem to me that this is what a fair bit of the misunderstanding boils down to.
That and the fact that people are programmed to know what to do when a person has a broken leg or pneumonia - you send a get-well-soon card, fill their freezer with casseroles and ferry their children about until they’re well again.Then they get better, everyone breathes a sigh of relief and normal life resumes. A chronic condition is alarmingly open-ended by contrast - I think people sometimes think ‘better not ask too many questions because then I’ll be sucked into asking the same questions for ever and ever and the news will never be good’.
I get the feeling that the vast majority of people just say “how are you?” as it’s the usual/normal sentence to use at the start of a conversation, and they simply don’t actually listen to the reply, expecting the usual “Fine thanks …how are you?” It’s like a prescribed formula that we use with no actual thought !!
I occasionally respond to this enquiry with “…bloody awful thanks …would you like me to tell you all about it ?” This often elicits a response of nervous/embarrassed laughter but it’s very rare that anyone wants to hear about difficulties (…I often go through this charade with my own family!!)
It’s just an ‘automatic’ routine which we seldom put any thought into.
I find it quite amusing to give an unexpected response, along with the offer of going into more detail. Usually, I then smile broadly, have a good laugh and apologise to the enquirer for any discomfort I may have caused !!
Well, at least this makes me smile without being at anyone’s expense !
I have only been diagnosed about 5 months so I have not been through what you have as yet.
One thing a couple of close friends have said to me is that they have no idea what to say to me. I’ve known these people for over 15 years but suddenly I have become a stranger. Sad isn’t it?
Like you I keep my feelings to myself but on occasion it would be nice to tell someone I’m feeling awful. I’m not convinced it would make me feel better anyway. I’m sure people would prefer I was my old self but unfortunately I’m not.
Hi Soph (my pooche`s name!)…I get you TOTALLY hun!
I am exactly the same. Been suffering a long time and in a wheelchair for many of those years.
I am normally an upbeat, smiling kind of lass. If I make the slightest moan to my hubby, he berates me. Yes of course I know there are folk worse off, so I usually grin and bear it.
I dont think the majority of able folk know how to react, if we tell them we are having a more than regular difficult time.
I understand what it’s like, for many years I was in the same position as you, no visible disability so people couldn’t see something wrong and it does feel like you’re moaning when you occasionally tell people that you feel like cr*p today! I still find myself answering even my GP with “I’m fine”, when the reason I’m there is that I’m not ok.
Sometimes you just have to ignore that feeling, it can be that your friends, family, colleagues etc just don’t know what to say because most of the time you are just ‘normal’ and because you do tend to answer their enquiry with “yeah I’m good”. Maybe you need to start being more open with your MS symptoms when you’re asked how you are. Try to ignore your feeling that you sound like you’re moaning, because chances are, it’s only you that thinks you sound whingy.
By the way, that feeling doesn’t go away when you start looking more disabled. When you have a stick, a crutch, two crutches, a walker, a wheelchair: when we’re asked “how are you?”, it still feels like moaning when you tell people that you had a bad night, you feel shitty because your legs don’t work or that your brain is befuddled. We still say “I’m fine” then amend that to “well not really fine, because …”
But welcome to the forum. Even if you never get any support from people around you, you’ll always get it here.
It’s a tricky one. People often ask you how you are but don’t think they really want to know. Or they tell you that you look so well when you really aren’t.
I’ve started using a stick. People say ‘what’s happened to you?’ - I reply with a line from Eddie Redmayne when he was Stephen Hawking… ‘It’s complicated!’ and leave it at that.
Thank you so much for your replies on here, it has made me feel so much better that everyone is in the same boat. My family and partner are very understanding and it has really helped me through I just think I get a bid depressed and anxious but it which again I know is a normal behaviour. I think people are surprised when something dramatic happens because they forget about the condition. The other day I was at a friends birthday drinks at the beginning of the night but there was only one working toilet in the pub and I had an accident because I couldn’t hold it. I just had to walk out and leave and then text her and explain the situation. To which she was surprised and said how come? And that’s when I get a bit aggravated by people’s ignorance, when I say ignorance it isn’t meant as an insult they are just sometimes unaware. I think I look for people to blame sometimes when I am down and I hate being like that. Does anyone else think this or feel like this, I am sure it is natural but I just feel so angry sometimes and my partner ends up getting the brunt of it bless her. She is so supportive though and completely understands. Can I do anything to help my mood or make me feel better about the whole thing? I know I am kind of clutching at straws but I thought I would ask. Any advice would be greatly appreciated. Soph x
Blimey, ain’t that the truth… how many people have asked me that and regretted it soon after. No regrets however, as that question should be asked and answered honestly imho. What’s the point in asking otherwise eh???
Having read your latest post above, I totally feel for you, especially as it involves being out for the evening and mixing with all the other young thangs…
You’ve been dxd much longer than me so I wouldn’t put much stock my opinion but for what it’s worth I don’t think that you should feel so bad about feeling bad… hell is a very personal place. No one has the authority on how you are feeling and/or managing, and woe betide them should they opine.
Aw thank you so much. I really do feel more at ease about everything. It’s funny because all those close to me tell me exactly the same thing but it’s always good to get the perspective from someone in the same situation. I think today I just needed reassurance and I needed to offload. So thank you all for your support to a stranger. You really are all fantastic and inspiring people. If MS gives us any first it is to share so very personal details of your lives to complete strangers and I feel humbled by it all. I wish you all the best, take care everyone Xxx
People see us - perhaps struggling to walk - or talk - and think that is all there is to MS. They do not see all the other things it does to our bodies ------- and minds. They do not see the loss of control of bladder/bowels etc.
We would get more ‘thought’ - as it is not sympathy we need - if we had legs in plaster. At least then you could say it was a ‘ski-ing accident’. l often say - l have someone elses legs on - and they are not even a matching pair!
And yes - there is always someone worse off then us. A dear friend of has been diagnosed with lung cancer,l am afraid, she is in a bad way. So all we can do is help and support her and her family – and certainly not mention the smoking - and certainly no ‘‘l told you so’’ remarks.
Also, our bowel and bladder problems are one of the symptoms that are invisible to most people, so they don’t know that we have them. If you walk a bit oddly, use a walking aid or a wheelchair, it’s obvious that there’s something wrong with your mobility. But need to use the loo in a terrific hurry, or feel utterly pole axed by fatigue, and no one can tell unless you tell them. Bowel and bladder problems in some way are the hardest to deal with (initially) because they carry an embarrassment factor as well. Who really wants to tell a colleague or a new friend, that you need to poo right now. Or a queue of strangers that you need to push in front of them because you’ll wet yourself.
Obviously, once you start to use a stick or a chair, everything becomes more obvious and you have the opposite problem: being patronised by total strangers who smile at you in a ‘poor you’ kind of way and quickly offer to let you go first to the loo, into the lift, through a door etc. (Obviously some people manage to do this in a way that’s not overly patronising or offensive but I do get fed up with the fake smile I get from some people!)
Eventually you develop a hard outer shell. Nowadays all my friends know that I need to know if there’s a disabled loo wherever we’re going. And most know that sometimes I need to go right now!
Hi again. With regard to bladder and bowel problems…I have a bag for my supra pubic catheter. And it fills at a variety of speeds! Sometimes me and my carer, will scuttle to the corner of a shop or street and empty my bag into a bottle!
Then the bowels…I never know if I need to pass wind or a stool…yeh, we do have fun, dont we?
After reading some of these admissions, I have to state i can entirely relate to them. I say we should have one predetermined and agreed day where we don’t hold back on ANY symptoms, be they bladder/ bowel, wind and/or mood related. We could say we are exercising a sensory protest…
Ah poll, that is terrible bless you. My urine issues aren’t as bad but I have had stool related accidents. Man are they fun?! Haha! We do what we can and Ollie I totally agree, one day where if anyone asks “how are you?” We can reel it all off… Or I’ll just post on here!! Thank you again everyone, it has done me so much good xxx
I completely empathise and understand everything that has been said on here. In the UK people often ask you how you are out of “politeness” than genuine care and I find “I’m fine/good” usually does the trick (even though it’s almost always a lie)!
I have been brutally honest with my colleagues and friends about the bladder side of things, hell I’ve even lost continence at work (I don’t think people noticed thankfully). I get a lot of sympathy from my close friends, I think my colleagues care but they show it in a very odd manner.
Sometimes things go the other way with friends complaining about a cold/ailment and then turning to me and saying, “well of course it’s nothing compared to what you’re going through” - my only reply is “it’s all relative!” Their leg is causing them just as much stress and angst as my condition is to me - it doesn’t matter that my “good day” is 10 times worse than their “bad day”.
It’s so hard to explain to people about the hidden symptoms of MS and I often struggle - as you say when you start reeling off the myriad of different issues you have it sounds like you’re moaning…
Xxx