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Mums with MS or in limbo, how do you cope?? :(

Hi!

So I’m in limbo at the moment and I’m completely struggling with the symptoms/relapse whilst running a home, looking after 3 children and a husband! I’m struggling badly and have no help!

How do you all cope??

Hope you’re as well as can be.

My husband is doing everything as well as working! I feel useless I have a 12 year old son who is not helping. I am trying to cope but it is hard.

The best thing for coping with all this is to get family/friends involved.

Have you any family who could take the kids for a sleepover, to get you a good night`s rest?

I`ve always said what keeps me going is having a great network of support around me.

pollsx

Just like Joolzmac my wonderful husband is also doing everything! We both work full time and we also have a 12 yr old.I feel so incredibly guilty but I am just so tired when i get in from work that I am only fit for slobbing on the sofa and the bed. Even at the weekend just a trip to the shops tires me out. I used to run the house single handedly and I love to cook and bake but now I do barely anything.My husband is so understanding,despite us having no idea what is the matter with me but I still feel like I a failure as a Mother and a Wife.

Oh me to I can’t even go to work at moment I have been unwell and off since we stopped on 21 December. I am struggling to walk. My son is acting up towards his dad, who is doing everything it’s very stressful x

I have just created a thread about this !! why did i not read this first sorry, i feel just the way your saying !! i am scared how rubbish i am feeling and IF this is ms related i am struggling to cope, i can’t do hardly anything at the min i want to sleep my days away and i have a young child, i don’t have a great support network apart from my poor husband, i have 2 disabled sisters so don’t feel i can ask my parents for any help at all and to be honest they don’t seem too interested anyway its not visable how i feel, feeling very sorry for myself today as you can probably tell :frowning:

I am not doing too well today just stopped crying I struggled and fell on last stairs I am totally beating myself up!

I’m sorry to hear that some of you are struggling as much as me! It’s so extremely difficult isn’t it?? I don’t know about you but I feel like I’m letting my children down. I don’t have the energy or the patience. My children are 12 months, 3 years (and potty training) and 5 so have lovely school runs and endless homework (not to mention endless housework).

The most difficult thing like you say is the lack of support. So I suppose I’m not alone in this.

im guessing as well that when you say to your Dr “I’m exhausted” you get the time old “yes but you do have small children”?! That’s not why I’m exhausted although it doesn’t help!

Im pretty sure that as crappy as you all feel, you’re doing a great job, it seems we’re in it together, so feel free to come back to this post and off load.

well wishes to you all

Tanya

Hi,

Sue1 put it in a nutshell that it’s “not visible”.

So much of MS is an invisible disease and we haven’t got anything, like a plastercast, to show for it, and I think that’s why it’s so bloody hard.

We push on through the stumbles and the fatigue, and it’s no wonder that we get depressed and have feelings of low esteem.

Add to that, being left in limbo between one diagnosis or another, or the erratic nature of our national health system and you’ve got a Perfect Storm of sh*t landed on your plate. Never mind all the other stuff that life throws at us.

The MS Society recognises all this. Take a look at the Support section at the top of this page. Your No. 1 Priority is to to put yourself first and find the sort of help each of you need and then go out there and grab it.

Getting on the this Forum is a very good step. As you can read, none of you are alone with your experiences. We share our troubles, find like minded people and talk to each other about it.

That’s a very good way to start coping.

Welcome to the Forum.

John

i am in limbo and had thought my cis diagnosis was just a blip and they got it wrong, at the min and the way i feel i am thinking maybe they did actually get it right and its a start of things to come, it’s all very scary and very unpredictable and if your all like i am then your mood, actions and feelings are all over the place constantly !! just want to feel normal again i can’t actually remember how that felt now x

Yes me to x

Very well said and thank you!

i’m really sorry that so many of you are feeling abandoned.

two of the best things i discovered are mindfulness meditation and the bowel and bladder clinic.

the first of these is an excellent way to calm your mind.

the second is a great help in avoiding those embarrassing times when you wet or soil yourself.

carole x

Thank you Carole! I’ve often thought about meditation, how do you first go about it?

hope you’re well! Tanya

It’s so so tough isn’t it :’( like you I have a 12 month old who doesn’t want anyone but me. I have a 3 and 5 year old too, I totally understand. It’s such a tiring and lonely place to be. And like sue said, it’s invisible so people don’t fully understand. I often feel that my illness makes me seem socially awkward as well, I’m out of character sometimes.

i thought I’d message today to see how you are?? Hoping you’re somewhat better, Tanya x

How are you feeling today Sue??? Just know you’re not alone :’( xx

I often wonder if I’ll ever feel normal again :frowning: I actually can’t remember what normal is, I’ve been like this about 10 years.

Well it had nothing to do with my cis diagnosis i was put in hospital for my blood pressure and a uti, back home with medication for both and hoping i feel better soon x

Get well soon x

Hi there Any other mums experience a drop in breastmilk with an MS reaction to heat? Today felt too exhausted to look after my 1yr old and think it’s because of how my MS reacted to the heat. Have noticed my milk has dropped off too and wondering if this is linked? Anyone got tips on staying cool with a baby? Thanks for any insight. Hope all well.