Last reply 1 year ago
Attention seeking?

Hi, just need to let this out. I feel so fed up of having this condition that nobody can see. Just lately I feel like i want the whole world to know I’ve got MS and I need people to ask if I’m ok, or if they can help. I need people to treat me a bit kinder, with a bit of sympathy maybe. I’m not an attention seeking type normally but I feel like I’m going through this on my own so much because my symptoms are all invisible to anyone else and it’s like everyone who I have told about my MS (which isn’t many people) has forgotten all about it because I seem so ‘ok’. I don’t feel ok! I have made the decision not to tell many people about the MS but lately I feel like telling everyone, to make them see what I’m having to deal with everyday just to keep looking like I’m ‘ok’. Not sure if this is depression or anxiety related. Or what I’m hoping to achieve by sharing it!

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ellenmay
1 year ago

You have made a positive move by coming to this site.
There are lots of people here who will understand your feelings,there’s no right way to feel or react but you will find likeminded people here,that’s a certainty.
More replies will follow, it’s a very supportive place 😊


niccis
1 year ago

@ellenmay Thanks. I post on here quite often and people are always very kind, you’re right. Not quite sure what’s come over me lately but just feel like shouting ‘Notice me!’ What a drama queen, haha.


doubleo7hud
1 year ago

Just tell everyone that asks saves farting about come out of the closet. I can’t hide it as I walk like a penguin that’s desperate for a shite. There’s only so long you can tell people it’s man flu 😷 for before they get suspicious he he


niccis
1 year ago

Ha, I don’t know about that- I’ve seen men who’ve dragged out man flu for months. I’m sure nobody would question it 😂


bienenstich
1 year ago

It’s good to tell people how you feel and that you need support. Don’t struggle on yourself. In the long one you are not only kinder to yourself but also others. Otherwise you get more upset, depressed, more resentful and that translates to your relationships. Be honest.

But also (and this is something I personally find really useful) if you feel really down/angry about the body MS go somewhere quiet, grab a good big pillow and pummel it very very hard. Give it a good beating until you can’t punch any more, and if you feel like it cry your eyes out. Wail, moan, whatever it takes but do make a proper effort. Let it all hang out. By the end you’ll be feeling knackered and drained. In a good way. Tip: Tell people nearby beforehand. My husband knows to stay away when I do that 😂.


bienenstich
1 year ago

That was supposed to be ‘bloody MS’!


potter
1 year ago

I have felt the same way hundreds of times and I usually get mad at myself for feeling that way. I understand the nobody knows what you are going through is another MSer. Potter


nellyone
1 year ago

I often wonder how or why my husband sticks around…30 years…sometimes I feel he is more committed to our family than I am! He constantly tells me “I understand” and that


nellyone
1 year ago

Sorry 1st time on site…I meant to say his patience sometimes drives me nuts; how spoiled am I. Upon reflection I cannot imagine what the people in our daily lives go through seeing the person they care about suffer or try to deal with the downs of this disease; my hat off to them.


potter
1 year ago

You need to be very thankful that you have someone that loves you enough to stick it out. One of my aunts who had MS husband left her right after her diagnoses. He said I didn’t sign up for this, she had to go it alone she was lucky to have relatives nearby. Divorces are very common in MSers, I am thankful every day that I have such a supportive husband. I also thank all of the relatives that have died of ALS and MS, I feel like they are doing everything they can do to help me. My neuro says for some reason I just keep truckin along, I think it is because of all the support I get and positive thinking. Potter


alina_susca
1 year ago

Sometimes I wonder what is worse….. having MS or being alone with MS? Everyone say it is only in my head. That I worry too much and overthinking destroys my happiness. The experiment with the pillow mentioned above I have done it hundred times and I will do it again for sure …. It helps for the moment. But the feeling of loneliness when you calm down and look around and don’t see anyone to give you a hug is almost killing. Everybody left or don’t care to much about a person who looks perfectly fine but insists that is ill. I can’t stand the disappointment anymore. Most of the people in my life left the others I tend to push away as I am sure that they will leave too at some point. I am tired of this life.


stumbler
1 year ago

Hi @alina_susca and welcome.

The pillow method above is just one way to rid yourself of the anger and frustration that you have because of the MS. We all need a release valve, where we can “let off steam”.

Talking about it is another release. Whilst here on the forum we can’t give you a physical hug, we do understand the problems that you are managing. Sometimes this “virtual hug” can help.

You need to stop pushing everyone away. This is not your fault. Just be selective to identify true friends.

Life can go on, even with MS.


alina_susca
1 year ago

Positive thinking is not my thing these days unfortunately. 🙁 I know life can go on even with MS, but lately I think more often that life can go on…. even without me.

Hi @alina_susca,

I am sorry you are having a hard time. I think you are in the company of people that at least understand some of what you are experiencing. My wife has MS and its not just the symptoms others can see, but its being on edge of what might be tomorrow. Its being on edge if something is changing or if its just a blip. Its wondering with every cold if something is reactativing or if its just a “normal” passing thing.

As someone that likes to have a planned and predictable way of doing things, MS isnt something that fits in well with my personality. We have our days of trying to stay positive and then sometimes feel bad on the days we dont. Always having to stay positive makes things a bit challenging sometimes. We try to appreciate the positive, but sometimes we are accepting its ok to just be sad.

We have been practicing mindfulness and while it was contrary to what I was thinking I would ever do, its been a good experience. Part of the idea is just getting comfortable with where you are, the good and the bad, and just observing. Not having to be positive. Not judging yourself for having done something in particular. Just observing. After watching yourself a bit, you start to understand things you didnt quite expect.

If you feel like sharing sometime, let us know more about your symptoms (the real but invisible ones).


Anonymous
1 year ago

@alina_susca I think I might know how you feel.

I am also judged for thinking too much, which is very isolating. It surprises me, I thought people would take me seriously once I finally got my dx, but no. They judge me for not being positive, for not exercising more, for thinking too much, for keeping a symptom diary. A bit of sympathy would go a long, long way.

Personally, I feel like a ghost. I’m not really living anymore, I’m just a reflection of myself in other people’s memories, wandering through where I used to live. In less than a year I am utterly changed. I have never been a chatty, fun person. I don’t make friends easily, I’m socially awkward. I’m an introvert, someone who just does think a lot, who is most comfortable doing things with other people, not talking about inconsequential details over cups of coffee or watching TV, so as those things I can do get fewer and take more effort I feel I am slipping away and my contact with people gets less and less. I am lonely. Soon there won’t be anything of me left, even though, to the casual observer, I look the same.

I have a lovely husband, so am incredibly lucky, but I can’t talk to him about everything. I would love to have female friends to spend time with who understand about MS without me having to explain.

Everything I do, I think ‘is this the last time?’ If I start doing something that will take more than a day to complete, I wonder if there is any point because I may never finish it. I used to do a lot of crafts and projects, I used to walk a lot, a year ago I had a job that was making a difference. Now my major ambition is to keep the house tidy enough so that I am not deeply embarrassed if I have to have a home visit from the doctor. I don’t know who I am anymore. Or rather, all my superficial distractions have been stripped away revealing the real me, and I don’t know this person and if I met them I definitely wouldn’t like them.

However, I have discovered that I don’t have it in me to do anything about this and there is a fierce core that selfishly wants to live. So, having accepted that I am going to keep on keeping on, I need to do so as well as I can.

I don’t have any answers for you, I’m afraid, but I am going to start counselling today and hope that somewhere along the line I will work out how to actually live, rather than just exist, and maybe this will work out, maybe I’ll become a better person. I know that people have a lot worse to deal with and manage to adjust, and that many people have no choice about whether to live or die, they have their lives wrenched from them. I know now that life is so precious, that every moment of joy and kindness needs to be noticed. But sometimes I just want to rage at the claustrophobia of being trapped in this body and this mind and having a very different future from the one I was expecting.

Sorry. That’s an essay. I suppose I am thinking about what to say when I go for my counselling. I hope she’s ready for me. I think I have some serious issues 😉

Anyway, please don’t judge yourself for not being positive. You can’t change how you feel right now, you just need to be open to the idea that you may not feel this way next week, next month, next year. Maybe the Shift map will help us connect better with each other. Maybe there are new friendships just around the corner.


stumbler
1 year ago

@teal , thank you for articulating (gee, that word was hard to find!) this issue so well.

When you see your Counsellor, you should take a printed copy of your response above. it will provide a great platform to moved forward from.

@alina_susca , when things aren’t right in life, we have to change them otherwise they stay the same. Just little things can be the start of a big and positive difference.


Anonymous
1 year ago

Sorry, got confused between @niccis and @alina_susca so my post above is sort of to both of you.


steve67
1 year ago

I was a soldier for 25 years and the first thing you learn is that no one other than another soldier will understand some of the difficulties that arise. It is the same with MS since no one can fully understand the difficulties and problems that come with the disease. I dont care about the walking difficulties or being on my own so much but I get severe pain from the base of the spine down to the sole of the feet which often is agonising despite the maximum number of strong pain killers and this can leave me severely depressed.
All I can say is try and find someone with the same MS to have an occasional moan with and this helps no end.


yuma
1 year ago

Love to you! Dealing with an invisible disease is tough, and you’re not seeking attention by wanting to feel acknowledged xxxxx


isaacson72
1 year ago

I think this is something many of us feel, you are definitely not alone. Are there MS groups in your area? I know it’s helpful to type things out to an online forum, but sometimes there is no substitute for physical contact, a hug from somebody who truly understands, a sympathetic ear to have coffee with.

I struggle with all these issues, too. I saw a hypnotherapist for my bladder issues and we got to talking about this issue (she is a mental health counselor, as well). I told her how we had an opportunity to visit Scotland (I’m in the US) for cheap, doing a house swap with a friend. My husband thought it was still too expensive & nixed the idea, but I thought — what if, in 5 years when we CAN afford it, I can’t go because of MS? I never realized that this thing would change my outlook on life so drastically. I’m ready to live a different life now — easy, stress-free job, smaller house, travel more while I can, etc., whereas my husband hasn’t had that life-changing shift yet. He is mostly supportive, but the fact is – he doesn’t have MS. So he doesn’t understand, not really. Still struggling what to do with this.

Try reaching out to somebody, even a counselor. It does no good to hold all those thoughts inside you. And at least take solace that this is something most of us with MS feel, so you are not alone.

Michelle xx


ss17
1 year ago

I’m a newbie here and came across this site whilst struggling to sleep (something that has become more and more common thanks to symptoms in my legs and feet).
Anyway back to the topic, reading through these posts I immediately found myself relating to what was being said. I was diagnosed 4 years ago at the age of 25, and to say it came as a shock is an understatement!
4 years on I’m struggling with my ‘ms identity’, I too haven’t told many people, partly because saying it out loud meant I had to accept it was real and also because like many of you I have found I haven’t often received the support I really need and I often feel terribly alone. I was in a serious relationship when I had my initial tests and ms was suspected, my partner was great through this but when I was diagnosed and it became real he couldn’t handle it and walked away. I don’t feel like I’ve got over that. And for others I’ve told, the number of times I’ve heard ‘you’re still lucky, there’s so many people worse off than you’ is no help either. yes I know this but that doesn’t mean I often feel absolutely rubbish but pretend I’m fine. thankfully I don’t have many visible symptoms so others can’t see what I’m feeling. I’ve recently found I lack the motivation and energy to do very much which brings me down anyway but then getting comments telling me I should try to do more from people who do and don’t know about the ms just brings me down further, after all I wish I could but sometimes just getting through the day is a challenge in itself. And it’d be nice to get a bit of recognition for that.
It’s definitely reassuring to hear I’m not alone.

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