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
Feeing a bit sad: Does it ever go away? The fact that... - NRAS
Feeing a bit sad
Hels, I think that it is safe to say that once you have effective pain-control and inflammation is under control, by biologicals or whatever, your mood will improve. Good luck, people are out here for you.
😢
Tomorrow is another day - there will be a positive outcome . Take each day as it comes. What seems impossible today will be tomorrow’s success .
We all have history but it will not define you or make you a victim .
Once the meds start working you will get your normality back .
I remember counting the weeks until the Methotrexate hit 12 weeks - and it did and I was in remission for many Years - so that can be you . If not they will put you on other meds that will work . Rome was not built in a day so you play the long game AND you will get there . My children were young when I had RA and I did cry , grieve .
Have faith in the NHS - they will get you there - just be patient.Hugs xxx 😊
Thankyou honey. Guess it’s just another one of those times a girl needs her mum 🙂 thankyou for your kind and positive words x
And you will get there - to be the person that you need to be for your family. Fast forward - it makes you stronger and a great example for your chlldren .
Not that I would have believed it at the time 😬
Seriously I do think your body does tolerate pain better the longer you have it Mind over matter .
You will get there x
So sorry to hear about your troubles! Things will get better as long as we keep that hope alive.
That's how I'm feeling. Maybe something to do with seasonal change, I don't know.
I posted a message earlier 'Feeling Meh!' ......
Feeling emotional. Pains. Burning sensations.
You do feel alone with this horrible disease. Even though you surrounded by family & friends, who try to understand. But, there is that invisible barrier, which doesn't help us get over the smallest of hurdles.
I live by myself, and it's bloody tough when your at this stage & there's nobody there with you. When my partner is here, and I'm having rough time, he understands me, which is good.
So, I really feel for you. We know we're not alone.
All the best to you.
Ruth x
And to you Ruth! Didn’t see your post sorry x I hope we both feel better physically and mentally soon xxx
It sounds like you have had a lot of emotional pain and loss in your life. It might help you to be able to talk to someone like a counsellor. It can really help to process everything that has happened , You are young to have this condition and it can be depressing but as others have said if you can get it controlled you will feel brighter. You sound like a strong person and if you get your condition controlled your future can be so much better. When we feel low it can really help to remind ourself that it will pass and brighter days are around the corner. Hoping your brighter days start again really soon. : )
Thanks so much, these positive messages do really help. Xxx
I know exactly what you mean! I feel like it consumes me as well....so much mystery and no one knows what the future will hold. It is miserable. Plus, even on my "decent" days when I should be elated that my pain is manageable, I am still so down. The meds definitely mess with mood, so please be aware of that.
It is incredibly hard dealing with this when our families and friends dont know what we are feeling and will never really understand. My first dmard was methotrexate, aside from a weird pressure, sinus headache the first time I took it, I also had very minimal side effects. Actually, the one huge side effect for me was the hair loss and after 8 weeks of losing massive chunks in the shower, I decided to not push it any farther. When I stopped, I felt the difference in pain ( I think..). So it may have been starting to do it's job at 8 weeks. But I am also still on prednisone (which has taken me from crippled to mobile). Then I spent about 8 days on leflunomide...i got the "rare" side effect of gross numbness and tingling in my limbs and it got to a point where it was maddening, and I had to stop it. Now trying Plaquenil for almost a week. As i go through this trial and error process, my pain is increasing and sadly my hair is still shedding at the same rate.
My husband just sent me an article about how our mental outlook has a huge bearing on how we feel pain. As hard as it is... we HAVE to stay positive. It is for our own good. I'm saying this more for myself than anyone else, so please, I am not trying to be preachy. But I am trying not to worry about the next day...I literally can only handle one day at a time. Worrying about what may or may not happen is not beneficial for anything. No one extended their life by being anxious and worrying. Make a list of things you enjoy...it can be anything...simple or complicated...or both! Try to do at least one of things everyday. And dwell on it, so you can enjoy it. I have been trying that...I'll let you know how it goes 
BIG hugs....
By the way, I sometimes cry for no reason...we all go through those moments...don't feel about it. We are here for you. We are close to your pain.
Thankyou honey for your lovely kinds words. I do find feeling positive makes me feel a little better. It’s just getting myself to feel positive I suppose. Hopefully il manage to feel a bit more positive soon. Thanks again xxx
You're right... How does one try to feel positive... When they are already down. It's very hard and if anyone knows the secret... Please tell me!!
FYI...You sound like an amazing mom!!! Take pride in that!! 💕
When I was crying on the phone once telling my mom how sad I am... She said "I dunno what to tell you." Broke my heart. But that's another issue... Probably for a different forum 😏
Exactly Hun. Thankyou, I try my hardest to be a good mum. I will attach (try to) a photo of my babies. But it’s so easy to feel like I’m failing them at the moment.
Oh honey there’s nothing worse than that because we just need someone to tell us it’s gonna be ok and if someone can’t it makes us feel worse!!
Lots of love to you 💕
Hi Hels, I know people mean well and there is definitely a place for positivity, but my experience is that for many people who are justifiably hurting, the pressure to be positive is yet another burden they have to bear and another strain you’re placing on your body. I’m afraid life deals some people a particularly rough hand and if you have a problematic childhood ( for reasons we now understand) the effects continue to impact throughout your life- hence the repetition. My hunch is that working through some of that with a psychotherapist would really help you. CBT counselling (which is all you’ll get through your GP) is great for certain types of issues, but there are low cost counselling services run on a charitable basis all over the country and there you’ll get more appropriate support. You obviously care very much for your family and deserve support in supporting them - maybe your illness may just turn out to have been what you needed to get this. I hope I haven’t been too intrusive, but I sense you’re really hurting and wanted to help. Wishing you well, E x
Thankyou very much for your message and it’s definitely something I will think about xx
Yes, I totally agree Entero re a counsellor .. An impartial person. I did this when I was first diagnosed with RA. It helped so much as I was quite angry for what I'd lost. Can you ask your GP Hels?
Yes I think so!
Hi Hels, firstly hugs and once you feel better physically the rest will follow feeling brighter. I looked at your post and felt sad and agree that you've had a tough start but at 28 there is time to have a very happy life with RA under control. Might not seem so at the mo but you will. There's so much to look forward to with your kids growing up. Also what leapt out at me .. Was the .. Amazing man who took your kids on as his own. 😍 Yes he is amazing (and so are you which is why he chose you!) and when you read this please do a huge smile to yourself then give him a big hug as you've got a gem! I know you will get through this. It's so very hard when first starting new medication. Once all that settles, so will your mind. You can't change the past or how people acted .. You did nothing wrong. I'm very sad your Mum passed away early. So hard for you. Sometimes just writing it or typing it all and sharing helps and I hope it has for you. Take comfort dear Hels in your lovely guy and kids. Lots of love xxxx
Lots of love to you too Hun, thankyou once again for your caring and lovely message. Xxx
You're welcome sweetheart. 😘 Don't ever feel awkward about seeing a counsellor. It was the best thing I did as I had been treated so badly by an ex boss I believed all that stress of 12/14 hour days brought my RA on with a massive bang, Yes my hubby listened and was a rock but he was too close. I couldn't see the photo of your babies? 😕. Waiting for medication to work is like sitting watching the clock. Very hard to make the time go faster. Try keep the mind as occupied as you can and I know that's hard when you're in pain but anything that distracts. Being kind you are is a temporary blip. I believe you will soon be improving. xxx
I will see if I can personal message the photo to you, il have a go at least haha. Thanks again honey xxx
For some reason when I attached the photo it duplicated the post so there’s another post by me named the same and the photo is there. I can’t work out how to do it otherwise 😩
My phone is playing up Hels so maybe why I can't see attachments. 😖 Thank you for trying. xx
I know life can really get you down - I feel it too! Steroids only exacerbate my moods....... think of the positives - your beautiful children and your lovely partner- I really do understand and some days just feel really down in the dumps .......... no matter how much people try to cheer me up ....... I have been feeling very sorry for myself in last 2 weeks - just know it will pass and things will get better again ....,,, sorry if that’s completely useless- kisses 😘
Sorry to hear what you’re going through. I’m living a similar struggle. Just in pain all the time and I’m so down about it. I try to shake it off, but I’m so frustrated that I have this cross to bear. My rheum made a comment that you have to learn to be stoic to get by when you have this disease. I think that’s true... it’s not easy but I need to learn to accept that this is my lot in life. Im not done being sad and angry about it yet, but I do know that if I let those feelings take over in the long run I’m only hurting myself more.
Be kind to yourself. Know that there will be good days and bad days. Savor the good days. Know that it’s okay to feel sad, angry, and frustrated sometimes, but don’t let those feelings overtake your whole being. Believe me I know - easier said than done. It’s a work in progress, but I’m starting to believe that things will get better and that I will manage.
I wish you all the best!
Hi Hels. You are not alone. I suspect we have all felt depressed and despairing over this nasty disease and, believe me, it can and will get better. The medication available now to treat the disease, relieve the pain and minimise any joint damage is better than ever and, once you have the right combination for you, life will be as near normal as it ever was. It's very hard to be patient waiting for the meds to work but they will, given time. Just as there are no silly questions there is also no need to bottle feelings up here. Wishing you all the very best
J
100% agree
Starting to feel a bit better
So sad.
Advice needed, please
