NRAS
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Feeing a bit sad

Feeing a bit sad

Does it ever go away? The fact that all day every day all I can ever think about is this horrible disease. Even when I’m not in much pain it still consumes my every thought. It makes me so sad seeing my children growing up know this disease will consume my thoughts as much if not more than them. I mean I’ve had a rough life so far considering I’m only 28. Dad never around much then cheated on my mum, mum had to move to a council house with me and my brother and bring us up best she could with a inflammatory arthritis too! just started to feel happy and settled then mum died of rare aggressive cancer. Had to live with grandparents. Met my children’s dad, moved in our own place, had our two children, children’s dad decided he was ‘no longer attracted to me (I think him cheating may have been better). Move into my grandparents again trying to keep it together for two devastated kids whilst grieving myself. Find me and the kids a decent home, met the most amazing man who took my kids on as his own (their dad doesn’t see them much) and absolutely dotes on me. Then hello here’s a nice inflammatory disease for you Helen!!! Why does it just feel like life is repeating itself? Don’t I deserve a break?! Can I please not just find peace and happiness?! Crying now as I write this. I don’t mean to attention seek and I know we are all in a similar boat and I have no idea how we all do it. I just feel so sad and lonely in this disease tonight xxx

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You sound so low my love .

I think maybe you should talk to your doctor . About how you feel.

Stress is so bad for R/A.

Its good you can talk to us but its still a lonely place to be .when yiu feel like this .you are only young .talk to your other half .try and remember you are only a baby yourself .i know you have 2 kids but you need a break and a little pick me up ( fun yourself ) xxxx

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Thanks Hun. It’s so nice to hear these motherly responses they pick me up a little xxx

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Bless you darling .your life has not been easy .in fact its been cruel.

But as i said .you are young lovely and have 2 beautifull children.

That in itself is worth so much .

Please take time for yourself .enjoy your youth.

Hugs .kathy xx

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Bless you Hels (or do you prefer Helen?). You've not had it easy have you? Well, all I can say is many people when faced with illness/chronic disease take check & look back at the not so good things that have happened in their lives, after all it's yet another negative thing to contend with & if you've had your share it's bound to make you feel more vulnerable & sad.

Well, a positive for you is once you're better controlled & your HCQ & MTX start working together the less time you'll focus on RD because, well, it won't be at the forefront because the pain & inflammation will be corrected & moves so it's in the background more.

Now, for the moment just look at the pic you've posted, you have two beautiful children (your son looks a real character!) & a man who loves you & your children, you're on the road to being better so really things could be worse, couldn't they? We all have a past but it doesn't do to dwell on it especially when you have a better life now. Ok, you've been dealt something else, you were more likely to because your mum had an inflammatory condition too, you're unfortunate like me & have genetics to blame there, but I truly believe we're not given any more than we can deal with.

Yes, how you're feeling does lessen the better controlled you become, because the signs of RD aren't there so much. You're at the very start of treatment, you've a lot of catching up to do on me because I've a good 9 years diagnosis on you & it's only on days like today having done too much gardening yesterday with it being a beautiful autumn day, when I'm feeling every muscle in my upper & lower limbs do I sit a while longer. That's self imposed though, I should have listened to my body when I came in for a glass of water but no, I wanted to carry on to get the leaves up & the moss scarified, all my own fault!

There's an old saying... Worry is like a rocking chair, it gives you something to do but it doesn't get you anywhere.

Things will get better, honest. Wipe away those tears so you can look at those beautiful children of yours clearly, you're blessed. x

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I have never heard that saying and it’s very true. I don’t mind being called hels or Helen 🙂 thanks so very much for your reply. You always seem to help perk me up.

Yeah genetics are rubbish at times definitely!! I just pray my babies don’t have the same ones. Tyler is such a good boy, very very kind hearted and quite an emotional person. Seren in the other hand is strong willed, knows what she wants and can be a little tinker at times 💕 and they keep me going.

I’ve come to realise that with this disease it’s all a waiting game. Waiting for referall then waiting for diagnosis, waiting to be put on medication and now waiting for medication to kick in. It’s a hard disease to have when you need to wait so much!!

Thankyou again for your kind words and support and for just helping lift my spirits a little 💕 xx

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Hi sweetie my heart ❣ truly goes out to you and right now you need a big hug 🤗. It’s very sad that at such a young age you have had a lot to go through. I know it can truly have a barring on you. Also now your illnesses and your kids dad walking 🚶🏻 out. Maybe that was good that he did and never put you all through misery.

However now you have a lot more positives to look at, you have 2 beautiful children 👶 and a lovely man in your life now and a lovely home 🏠.

I fully understand what you have gone through in your life but please look 👀 at what you have going for you now.

Always say to yourself that there are people a lot worse off than yourself.

Sending you lots off warm hugs and please take good care of yourself.

🤗🤗🤗🤗🌹🌹🌹🌹🙏xxx

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Thanks Hun. I’m feeling a little better today. Just a blip. Good days and bad I suppose! Thanks for the lovely message xxx

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You take good care of yourself and count your blessings sweetie. Have a lovely weekend 🤗🤗🤗🌹🌹🌹xxx

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Lovely photo!

Sorry to hear you’re feeling so down, but it’s completely understandable given all you’ve been through, and the sometimes overwhelming nature of constant pain and the worry that comes with having a lifelong and life changing condition.

I would agree with others’ suggestions regarding counselling - it really can help, and just to have the chance to ‘unload’ and let it all out to someone otherwise unconnected to your life and family can be such a relief. There may be details of counselling services on the NRAS website.

In the meantime though, try and do little things that make you smile, laugh - even just a long chatty coffee or phone call with a friend can lift your spirits. Good luck and hope you feel better soon xx

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Thankyou honey xxx

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Aw, Hels, really feel for you. I would just say I find MTX (I'm on that and hydroxychloroquine like you) does make me feel spectacularly low for about 3 days after injection. Add that into mix of having thoroughly depressing and life changing disease itself and how you're feeling right now is perfectly understandable. I had a week off it before they lowered dose and added HDXY and I actually felt like myself again, it was lovely. I'm only 3 months in and keep diary by my bed to ruminate and have rah rah rant in so I don't bore the ass off my lovely, supportive kids, or myself sometimes! I do also try and put good stuff or things that help sometimes too, not a totally miserable old sod. It does make you go over and over at the start I think, especially as you sound like a good person and have been through so much. There are so many people on here who say it does get better. Give yourself a break, you're allowed to be miserable sometimes I think and have a wallow, god knows I do! I really hope things improve with time, early days yet eh? P.S. Your children look really sweet.

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Thankyou for your lovely message Hun 🙂 I think I’m gonna buy myself a nice notepad and start a diary so I can long my aches and pains aswell as my feelings etc, good idea Hun thanks for the tip!

Thankyou honey they are my absolute world 💕

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If you look inwards instead of out, you will feel depressed and anxious. Truth is you've got a disease that can't be cured but can be controlled. My RA is in remission and makes no difference to my life. You have 2 lovely children and a new man so live looking out , take the meds and be optamisitc that your life is most definately not over and could be so much worse really. It is a shock to find out about RA but treatments are very good and painless. I really do sympathise your life has been hard but RA is a minor blip not a major incident. As for the kids new treatments are coming along all te time. Sending hugs x

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Well I look at it as. There are people with even more cruel diseases than mine RA know that doesn’t really help you but trust me there is and you will get better, with treatment plan if you need to cry go ahead it helps to get the frustration out of your system.

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Hi,

You will be a better mum to those two lovely children because you will be able to empathise with them and troubles they are going through. You are role modelling what a tough- cookie looks like! One of my sons recently said 'It was really tough mum, but I thought of you and then I knew what tough is! Really proud of you.' He thanked me for showing him how to carry on when in pain. I was so surprised and proud of him! I never dreamt he'd see it that way- just thought he'd see it as a pain having a disabled mum. So, you are brilliant even when Ill! Take care- things will get better xx

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Thankyou Hun that’s so so lovely of your son. He sounds very similar to my son. That’s how my son would see things xx

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Do something lovely to treat yourself- every day! X

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.

Oh là là . . . 😧 😳

You've been through more than enough, Hels1989. 😌 🙏

You've filled – exceeded – you quota of sadness . . . 😔

Kindly consider popping over here for some thoughts 💡 that may help shed some light ☀️ 🔦 : 'RA link to childhood trauma': healthunlocked.com/nras/pos...

And, maybe . . . even help turn things 'round. 🤔 🙏 😊

You (& your sweethearts 👨‍👩‍👧‍👦 ) deserve a reprieve. 😌

The best is yet to come. ☺️

🙏 🍀 🌺 🌞

.

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No Helen it doesn't but the faces of your beutiful children are your inspiration Ive had more grief the last two yrs. But on a positive note week 4 my mxt its doing something good I shopped yesterday just a wander took my mxt last night and I whizzed through the ironing keep going your doing fine Remember loads of water. How are you feeling?? I've been thinking of you

And yes you're too young for this crap

But whenever you need to let loose write your negativity here

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Thankyou lovely and I am so so glad that Mtx is working so soon for you!! That’s amazing! Thankyou for thinking of me. I will be ok, just hard at times but I think it’s prob the same for us all at times. Xxx

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What lovely children u focus on them and getting better....

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Thankyou lovely xx

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Awwww now I can see your pic Hels! Your children look so beautiful just like you. 😍😍. I think my mobile was having a freak out yesterday as if wouldn't attach images to emails of texts. It's all since I deleted a lot of junk on it. I freed up space and then it told me I had no space? Doh! No idea why it's doing that! They look so cute in their school uniforms. xxx

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Thankyou! They are the best!! My little girl seren can be a little madam though 😂 and Tyler is completely opposite he’s a complete sweetheart! Glad you got to see my babies xxx

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I am glad too thank you as they are so beautiful. Lovely names too. They will make you determined to do all you can to get well and active and happy again. I know you're happy at times but until this thing is controlled I know you are not at ease. Hugs. xxx

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You know me so well already Hun! I’m sure my mum has sent you to me to help me as she can’t be here. God bless you Hun and thankyou so much xxx

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Aww thank you sweet girl and I am sure your wonderful Mum is watching and wishing you to be well again. Are you having a few decent days as well as the ouch ones? Do you feel something happening again? I hope so and if it's still not too much progress that's because a it's still early days. 😘😘 xxx

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To be honest Hun I’m guessing I’m still feeling the positives of the steroid injection. I guess once the hydroxychloroquine and methotrexate start working I won’t know if it’s still the steroid or if it’s those haha. Hopefully il realise the difference and be like ‘wow!’ Haha xxx

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Ps You will be kicking buts in 4wks 🎉

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I bloody hope so! I’m taking week 2 on Tuesday night! Xx

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