An update on me: Pain, stress, no support, and fatigue but I'm still here.

[IzzyLane]

It's been some time since I scrolled through here, and longer since I posted. And I've missed it.

Nothing has really changed for me; I'm still in so much pain. I don't have good days now, I have bad days and unbearable days.

I'm back to my specialist on Wednesday after months of chasing, I hope we can start to move towards something positive.

I'm so stressed, which i know triggers my condition to worsen but it's like I can't escape. Things at home are very stressful, I hate going home and being stuck there. I return to uni in a week or so for my third and final year, which is another stress. And finally I have given in to working less, the reality of the pay cut hasn't hit me yet but it's already a big worry for me. They all seem to be stresses I cannot avoid and am constantly faced with; and in turn make me feel so rubbish.

Giving up some of my working hours has been a big thing for me; I hated parts of my job but i didn't want it to end the way it did, and no one understands. In the few hours I do now work, all I hear is the bitchiness of what people have been saying behind my back, another thing that upsets and stresses me, once again making my condition worse. I have tried to learn that they are ignorant and they don't have to comprehend what is happening to me, but I wish the hurtful behaviour would stop.

On to no support, like at work, no one understands, no one tries to help and make things easier. This week, my mum noticed how stressed I am, and saw the link to it hindering my health but still she's no where to be seen, and really not around for support.

I can honestly say, I have no friends left. I look on my phone or go on social media and think who can i talk to, who will help me, and i face nothing; but I'm starting to believe this is the way it is, and I should face up to it, my health and my stress on my own.

The fatigue: well i don't really sleep, and i don't get much restful sleep but even when i do sleep, I still wake up tired. It's exhausting!

But like I said, I'm still here, right?!

[Matilda7]

So sorry to hear how miserable things are for you. Have you tried ringing the NRAS helpline?

0800 298 7650

[IzzyLane in reply to Matilda7]

Thank you, I have spoken to someone before. Will think about it again.

[popsmith1874]

Hi there you really have been through the mill haven't you well on here you have many friends and we all know how isolating this disease can be so let it all out on here or give the help line a ring and talk to someone xxx

[IzzyLane in reply to popsmith1874]

Thank you! Sometimes I find it easier to write it all down than verbally say it... This site really helps with this. Xx

[Amy_Lee]

Oh dear,

We are here with you if you have any pain or stressful things to say. It is indeed not easy when you have no support at all when you are in great pain. Emotionally and morally we need the support needed too.

I am a single mother, I was all alone too during the critical period of my suffering for 3 to 4 weeks, it was indeed very stressful and I could hardly get anything to eat then. I ate whatever food that my friends and colleagues sent to me and those left behind on the table subsequently.

The thought of out of work was stressful but the next minute the thought of my youngest son who was in his first year in college gave me the drive and the power to move on positively. With my son in mind, I told myself that I would be able to live life as normal again. I am glad I do and it took a lot of determination and hard work.

One thing I would like to say is I have a lot of good friends and colleagues around me who tried to understand my suffering. Among them including my boss, I slept most of the time in the office then. Having said that, only we can help ourselves to recover from all these shortcoming including emotional stress and our health.

Just come in to share your emotion and suffering here with us, we can 100% understand your feeling and would be able to provide you with the moral and emotional support needed.

[benjijen]

I agree with Amy_Lee. We have to help ourselves first which isn't an easy thing to do. I make lists, rarely keep to them but it helps to lessen the stress for a while. If you are able to do any exercise like swimming or just walking it can give you a bit of respite, but it sounds as if you need to look at your whole life balance. Do you want to go back to uni or can you defer it for another year until you get your other stress factors addressed? Have you seen your GP about short term help with sleep. You focus mainly on your stress, do you think you may be depressed? Again speak to your GP about short term help. With regard to your Mum and friends, I've had a habit of refusing help in the past as I didn't want to seem useless. Perhaps they are waiting for you to ask. Whatever, you end up doing, take care and keep in touch.

[linda-5502]

You poor darling. Yes here we all know what RA is like some to a.greater or lesser extent than others. I have found this site so helpful and friendly I know.I gave friends they helped me with a very difficult time a whole ago.

My.Dad used to say to me ignorant people have been dragged up not bought up as you have and I gave remembered it all through.my life. So when I came across bitchy people that quote helped me. Don't let them get you down.that is what they want you are better than that. Not everyone can do a degree. You are far way above those people you have talent they don't. Do you have grand parents you could confide in my grand children do with me and lersss dace we gave been there git the t-shirt and the book.

Take care am sending you big hugs and love we will all be.routing for you

Lin xxxxx

[Leonwp]

Bless you sweetheart, so much pain and anxiety in one so young is hard to see, we do know and we do understand. You need to try and find counseling at Uni, im sure your student groups must have a gelp system, please find them and talk to someone there. At 56 having been hit by this awful disease 5 years ago i can fully understand how bad this is hurting you at 19, if i could take this for you to let you get on with your young life i gladly would. x

[sylvi]

Darling we are always here on HU and we will support you. I am on f/book as well. My name is Sylvia Reynolds if you want to befriend me darling. I have a wicked sense of humour and i am able to say one thing knowing others will see another meaning and i find it so funny.xxxxxx

[MickeyJoints]

Yes, you're still here and so are we. No one understands your situation better than 'da-crew-in-pain', who are here. We know you, and you know us.

[andyswarbs]

If you cannot sleep try some breathing exercises perhaps. The ones I do are 30 breaths, fast and full in and steady out. This oxygenates the body. At the end breathe out and breathe out deeply and hold it. You should be pleasantly surprised at how long you do not need to breathe! Once you feel the need to breathe, breathe in fully and hold for 10 seconds. Relax and breathe normally. (This is the Wim Hof Method of breathing.)

You can repeat the whole thing if you wish. I find I feel very relaxed throughout my body after using this technique and sometimes have fallen asleep nicely for a couple of hours.

[sammy2016]

Oh I do understand how you feel. `i's the same here. I tell myself to stop moaning so that I don't upset people around me, my husband in particular. But after a sleepness night it's ever so hard to keep 'chin up' and smile when I feel like crying. Try to do some exercises with your legs - it hurts like hell but it helps me at least for a while. I do it even in the middle of the night. Perhaps it's a mental 'placebo' . The majority of people will say ' everybody has pain or back pain, what's new ?. It's the degree of pain that is impossible to describe. And the painkillers don't really work I think.

[Doughnut61 in reply to sammy2016]

You poor soul ☹️ Are you not on MTX ? Has the Rheumy nurse not been able to help you ? I hate that pain it is knife cutting when it's bad X please ask for help you should not be in that much pain all the time 🤔🤔 Big hugs 😘😘

[Hidden]

Oh sweetie - This is a very hard disease to internalize, and it is hard enough with support, but doubly hard without much, or enough. I agree with the others. Maybe the NRAS help line can get you in touch with others in your area? I don't know if they do that or not, but you have this board too and we will be happy to try to help if we can. Sleep is a real issue with this condition because of the inherent exhaustion. Maybe your physician can prescribe something to help? I also use tourmaline bracelets to try to control my restless leg and they support sleep really well.

It also sounds like your disease is not in control and you need something for the pain. Pain and exhaustion are hard to get past, and if you need pharmaceutical help, let your doctor know.

It is hard, especially when you are young, to accept that many people are jerks and their opinions don't really matter to your life, even if you are working with them. As my best friend told me one day "Their opinion of you is none of your business..."

Meantime, we will send warm and gentle thoughts your way.

[missymo]

Izzylane.i feel so sorry thst you dont get ANY good days chick.really don.t know how you cope!! All i can say is your yhe strongest person i have heard of!! Praying for a miracle for you.x

[sylvi]

\Yes that is me darling. so if anyone wants to befriend me let me know your name so i know where i know you from. You can always message me if you don't want anyone to know your name.xxxx

[baconbeast]

I am so sorry for what you are going through and can certainly relate.

I do not know if you believe in Jesus but I do and handed everything over to him.

He has changed my life and has brought many positive changes to my situations and has caused the people close to me to research this disease and help me more.

Many hugs to you and pray your situation changes very soon.

[Doughnut61]

You should be very proud of yourself 👏👏 Make some positive moves in seeing Rheumy or Gp to get that pain in check 😬💕 As for judgemental idiots that are lucky to be the healthy ones! but can't help but bitch - shut them out - you are better than them and you need your strength and energy for YOU !!! One thing I have learnt from this awful RA is it can make you realise who is there and who your true friends, family colleagues are 😇😇

[Ali_H]

Stay strong girl 😎 And good luck with uni

All the best

Ali

[jaclyn11305]

Hunny i know how you feel sometimes you can get very lonely with this condition. Im 33 and thought i was young going through this i couldn't imagine being19. It sucks many don't understand RA and turn there nose up like its no big deal and we should just be able to take aleave and get on with it. Wow if they could live one day in our shoes they might understand. My RA is completely out of control since i can't find a rhumy who cares and takes my insurance so my next step is pain management as of now my hands feet knees back and shoulders are affected bad it gets worse everyday. I take a swim almost everyday to keep excersing plus its the only thing i can do with my 2 year old right now. I must say its got to get better soon so we just got to support each other and hang on.