Struggling 😥: Hi everyone, this is a very personal... - NRAS

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Struggling 😥

sazlav83 profile image
sazlav83
•18 Replies

Hi everyone, this is a very personal post but I feel like here is the place that I know people will understand the health issues and fears I have right now.

I am so so struggling. This day last week my husband left me. I'm now on my own with 2 kids, trying to run a house and hold down a job. I am finding it so hard emotionally and physically. I have had a couple of periods of sickness from work in the last few months and my boss is questioning whether or not I'm fit for my role so I am terrified of losing my job so I can't afford to take any time off even though I'm so tired and so stiff and sore. I can't financially afford to be out of work either now I'm on my own.

One of the reasons he gave for leaving was that I was wasn't making any effort anymore to spend time together, and I'm not going to deny that, I just don't have the energy to be out and about after working all day and caring for 2 kids. Then when it gets to the weekend, and I take my mtx on Friday evening, I usually feel unwell on Saturday and Sundays are spent doing the food shopping, washing and cleaning for the week ahead.

I just am so frightened for what lies ahead, its getting so hard to get up in the mornings and think of facing work, I'm just so tired. I ache from my head to my toes, and feel like I've taken a beating every night in my sleep.

How do I keep going? Any advice at all on anything that has helped people feel a bit easier and less lethargic? Something that is not the obvious rest, because that's not going to happen.

Ps I'm seropsotive RA, diagnosed formally in June this year x

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18 Replies
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Cherub198889 profile image
Cherub198889

Oh how gut wrenching, I'm so sorry. Dealing with RA, 2 kids, work and a man that just "up and left" is so bloody devistating. I'm speechless.

As to work, may I ask you if you belong to a union? If you do, then contact a shopsteward ASAP about your rights as a person suffering with an illness. I also assume that you live in the UK. And living in the UK means that you live in a 1st world country that has disability laws. Please contact a disability advocate. You have rights and if your boss thinks you are not fit....well how do I say this?....your boss is a fool & you need to understand that your boss isn't out for your best interest.

I also want you to understand that your life has value & you must get in contact with a disability advocate in your area. You and your beautiful children need all the support you can get. Speaking of support, have you got a child support payment order? In my neck of the woods, having a government certified childsupport order is one of the first thing you apply for.

Please understand that you are a wonderful person with 2 beautiful children. It's not your fault that your husband left. You may not believe me now when I say you are better off without the selfish man. Only a fool walks away from his family.....You will survive and I am here to give you as much support as you need.

All my love to you & your children

Sue

keeta profile image
keeta

People don.t understand how much this illness takes out of you. I wish it was written about more .haven said that .what a nasty selfish man to walk away from his family.

If he felt you were not making more effort .

Then he wasn.t interested in seeing why. He should have helped more so you .reserved energy .

You will find once you sort claims etc out. You will be a calmer stronger more rested person.

We are stronger than we think .

Gentle hugs .kathy xx

sylvi profile image
sylvi

I can't like your post darling because it is so sad.Sue has given you some helpful advice and you need to look into it. Your husband is everything Sue has called him and i could call him a whole lot more,but how does a man leave his sick wife and two children is beyond me. He could have done a lot more to support you so you could go out with him. I believe there is more to this than because you are sick darling and i think you need to look into that.

I am sending you oodles of warm hugs and know we and i are all here for you in the coming months on your own. Anything you need to ask ask us we will all help anyway we can.XXXXX

I am struggling to find the right words. Your husband has acted in a very selfish way. ( If this disease is good for one thing it is showing us who cares about us and who doesn't) On a practical level he is financially responsible for his children, It might be worth getting legal advice ? ( Citizen's Advice Bureau ? ) Also maybe call to apply for PIP ? ( You can work and get PIP ) If you are eligible it will be backdated from the time of your call. Get all the emotional support you can. People are so kind and understanding on here and there is a large pool of knowledge and love. Do what you need to do to take care of yourself and your children. xx

Can only repeat all the other good advice: awful disease that causes so much financial worry when you can least cope with it or anything really. You really need some time off and i know you don't feel it's an option but you're important too. Yes to union advice and/or CAB. It is a recognised disability under the Equalities Act in UK and the above will probably advise you you are entitled to reasonable allowances at work + phased return etc. i was diagnosed sero positive end of July: awful but may work in your favour, I ve been off for several months myself and do not know how you're coping: you need some time to sort out etc, please see GP. So sorry you've had such awful time of it. CAB can help with things like PIP too. Yeah i know its a lot to organise when you feel so bad but may all give you break you need. Xx PS NRAS gave me some really good little booklets on employment and benefits that may help you and have excellent advice line: don't need to be member yet to ring.

Eiram50 profile image
Eiram50

Hi saslav

I am so very sorry to hear what you’re going through, my heart goes out to you.

I am a social worker ( full time) and a single parent of three girls still at home - it can be a struggle.

My first thoughts may be to approach your medical team as it appears that Your RA may not be as well controlled as it could be, perhaps ?

In terms of work, if I’m a union, I’d seek their advice. If you’ve not been referred to occupational health yet, I’d ask to be as they can be very helpful in relation to adjustments your Work must lawfully make to support you in the workplace.

On top of everything else, worrying about finances must be an incredible additional stress. Maybe you might consider reducing your hours and applying for working / child tax credits?

Importantly, is there anyone that you can speak too about how your feeling? You’re carrying enough without the additional emotional loss of your relationship. Maybe you can speak with Your gp?

I don’t know if any of this may help but please know that we are here and anytime you need to speak, just holler .

Wishing you the very very best going forward

Marie x

MandaJaneP profile image
MandaJaneP

Your husband doesn't deserve a strong, hardworking, capable woman like you!

There's a really helpful booklet from NRAS about being an employee with RA - here's a link to it nras.org.uk/data/files/Publ...

- it tells you your rights and your employer's responsibilities.

Good luck

M x

Hi Sarah

From long experience, I know what it is to be a lone parent and to have RA, though thankfully not both together.

As others have given plenty of advice, I am just letting you know I concur with their words of sympathy, encouragement and advice.

You are not alone, so take courage and act to secure your financial and health needs.

I would put health first though. Everything else depends on it.

Much love,

Angela

Nicole2000 profile image
Nicole2000

I am so sorry to hear your news. I can empathise with you and your situation. I think most replies have answered you with good advice. I can only add that you should look after yourself and your 2 kids. You and them are priority number 1. Your health and strength is essential for you and your kids to keep going.

N x

beeckey profile image
beeckey

I can only agree with what has been said.What a selfish uncaring man he is no thought for you or his kids.How difficult this must be for you but always remember to look after yourself when so much is going on you can forget and just keep going.I hope things get a bit better for you once you find out your options,.

I really feel for you, but please keep going. I agree with everything everyone has said about your situation and your husband.

As for the fatigue and soreness, a few things. Firstly that's not long since your diagnosis so I would assume that you're probably only on MTX at the moment. You'll probably end up adding other drugs into the mix which should get the RA under better control, and when that happens things physically should be better. So hang in there and try to believe things will get better.

I would also say try not to worry too much about the 'running the home' bit. Obviously you and your children need food and clean clothes, but if housework etc slips don't beat yourself up about it.

Take care of yourself.

Damaged profile image
Damaged

How horrible for you and your children. You may not be ready to hear this but seems to me he is not worth any tears. A man that would walk out on his wife and children , say nothing of a sick wife is worthless nacacist

Damaged profile image
Damaged• in reply toDamaged

Sorry was trying to correct narcissist. Perhaps the universe is making room in your life for a true partner.

I could not imagine coping with all you do. I hope the true spirit of the holidays provide you and your children moments a peace and joy. Thank goodness you have your babies and are still surrounded with love.

He can walk out but not walk away. Hold him accountable. Hold on tight to your children and do not loose heart. I so wish I could send you all a real hug. I hope that you find treatment which affords you relief adapt.

philfen profile image
philfen

Heartbreaking to read your post, bad enough having this crappy disease without everything else.

Wishing you a better time soon.

Love 'n Hugs Xxx

sazlav83 profile image
sazlav83

Thank you so so much for all your replies and kind advice. I think I'm just going to have to start getting my head around the practicalities of everything, very easy to bury my head in the sand right now, and to be honest would probably be the less painful option. However with 2 young children it's just not something I can do!

I'm going to make an app with CAB, and then try to get on to my rheumatologist, who I haven't seen since my first app in June (was told I'd be seen again in oct!! NHS eh??) obviously the stress at the minute is adding to how my body feels, so first step is to try and alleviate my financial worries.

So much for 'in sickness and in health'!! A lot of you have said it though, and are right, I have 2 little people that need me and their wee faces will always give me reason to get up in the morning!!

Truly thankful for all your support, it was needed today xxxx

keeta profile image
keeta• in reply tosazlav83

Just do me a big favour darling .yes sort things out finanancially yes look after your children .who will equally be sufferering so very much. But they have a lovely loving strong mum who loves them dearly .but like all mums in this possition .like my own mum as i was growing up.

you forget to look after yourself .well with this horrible disease you can.t afford to .

you need

love .care . Rest.

And a stress free home.please look after yourself .

You can always talk to us .there are some really lovely people here who care .you are not alone .

Gentle hugs .kathy xx

Cherub198889 profile image
Cherub198889• in reply tosazlav83

Glad you are making an appointment with CAB. Hold your head up high and know you deserve all the financial, emotional & medical help that is out there for you and your children.

All the best, Sue xxoo

PS I just gotta say something......you wrote ,

"....One of the reasons he gave for leaving was that I was wasn't making any effort anymore to spend time together, and I'm not going to deny that,...." .

All I can say is,

"Goodgrief, YES!!! You need to deny his reasons for leaving.. you have 2 young children, you work , and you have a horrible disease"..... Please, no more believing his reasons for leaving. His real reason is because he is a selfish looser..... And "You are woman and it's time you let out a Roar!" , no longer is anyone going to "walk" all over you. Stand up Proud, you have nothing to be ashamed of and you are not at fault...

sending you a big hug

Sue

Entero profile image
Entero

It gives me such heart to read these posts from such a wonderfully strong community of loving people!

Saslav83, my heart goes out to you as well, particularly as I was in very similar shoes seven years ago. I’m not going to lie to you - it’s been hard - but I’m so proud of how I’ve come through and everything in your note tells me you will too.

Someone already picked up on the hint of self blaming. I get this, but with some distance can see now that the man who does this is indeed a very weak man. None of us is perfect, but the bottom line is, not that you were imperfect, but that when adversity struck, he chose his own gratification, over his responsibility as a father and husband - and that’s not the type of person you want to grow old with.

You will be stronger without this man and hard though it is now, you’ll look back and know it was the best thing for you and your children that he left.

We are all here for you anytime.

Huge hug,

E x

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