stressed scared nobody to talk to...

[X-Jojom-X]

I've had lupus for five years now + luckily only ever had 1"big"flare up I've had bits n bobs here and there but nothing like what I'm experiencing now....every joint in my body has seized up I can hardly make it upstairs our to the toilet its so frustrating I just keep getting so emotional and annoyed at myself because I can't do"simple things"+ to to things off I have a water infection...as I've never really had it this bad I don't know how to talk to anybody I don't know where to start + I'm only 20 I live on my own with my little boy finding everyday a task I can't even drag myself out of bed this has been going on for 2 month now I'm so fed up any advice would be really appreciated xx

[jennyhe]

Hi Jojom, first of all here is a big (((((((hug))))))) you must be feeling so low and you ahve your little boy to take care of, can you ring your rhuemie and ask to be seen? or failing that get an appointment with your GP you shouldn`t be in that much pain for that long a time, I am so pleased you posted on here because it`s such a great support network please see your Gp take care and keep posting x

[Acorn1]

Poor you, its so hard being a single mum let alone having an illness aswell. Are you on steroids? Or any other meds for that matter. You really need to talk to your Dr about how you're feeling, it's so easy to slip into a low mood when you're struggling and isolated. I got into a similar state myself being a single, working mum. I felt so low not being able to play with my kids as they really deserve more. I too was struggling to get out of bed but i eventually dragged myself to the docs and poured it all out. Feeling low is all part of the Lupus (you're not going crazy!) and with the right meds you will start to feel better. Do you have a rheumatologist?

You must go to your Doctor and tell them your Lupus is deteriorating and you need help. What about your family, can you turn to them? Don't battle this alone, it's too exhausting, and your boy needs you to be well. (also drink loads of cranberry juice, it'll ease your water infection!)

Try and get out for a walk if you can, even just for 10 mins. Staying in the house all day isn't good for you.

Hope this helps.

Xx

[Paul_Howard Partner LUPUS UK in reply to Acorn1]

Please be careful regarding cranberry juice! If you have Hughes Syndrome and are taking warfarin, you should avoid Cranberries as they interfere with its effects.

[Melinda]

It must be so tough coping with a disease like lupus and a young child. I think you need to contact your GP or rheumatologist. You may need something stronger. As Acorn1 says, drink plenty of cranberry juice for your water infection. A water infection can make you feel pretty miserable. Lupus can be very isolating, but on here your not alone. Take care. xx

[behappy1]

Hello jojom, sorry to hear you're feeling so rough. I hope you feel better really soon xx in the meantime, check online if there's a local lupus group near you - there might be a fellow lupie who could help out, or pop in for a chat. I know from experience how easy it is to spiral into depression because you feel so low and alone. This site has been a saving grace for me, but also inspired me to look for local help. Take care x

[grannyjogger]

Hi jojom, I agree with what everyone else has said. Don't battle this alone, keep posting on this site, try to find a local group to meet other people for support and above all contact your rheumatologist if you have one, if not go back to your GP and keep going back - some GPs will fob you off a few times but if you persist they will eventually refer you to a specialist that can give you the right help. I know it's easy to say you need to keep pushing but harder to do when you are feeling emotionally as well as physically low. Keep your chin up, you are not alone in this disease. Big hugs ((()))

Oh, and one other thing, keep taking the cranberry juice even when the water infection clears up, it is great at preventing infections of the urinary tract taking hold.

[purple-lou]

I was in a similar situation. I was finding it hard to cope with being a mother whilst having a bad flare. Even on a "good" day, I'm not the same as I was before having lupus. I told my girls schools and received lots of support that way. Maybe you could have a chat with your sons health visitor. They can open doors of support for you. Try to stay positive. This sites has helped me so much recently, so keep posting! Lots of love, louise xx

[X-Jojom-X]

thanks guys...I'm not totally aline I have a partner he lives with me but work and to be honest he dosent understand the effects of lupus + I can't explain it to him...my rhumie has moved to another clinic witch is to far for me to travel I've seen my gp quite alot but he just gives me pain killers + I can't take then during the day as they knock me out..I'm on steroids aspirin sleeping tablets pain killers my doctor tells me there's always someone there when I need them but there's not it takes at least a week for a appointment..they just make excuses...one time I could hardly wall + the doctor said it want my lupus I'm just at my wits end now I'm getting nowhere its ridiculous xx

[loopy-lou in reply to X-Jojom-X]

Sending you big hugs too. I totally understand and also agree with what everyone has said too. I also suffer with my legs deciding not to walk and it is getting worse and have ended up crawling upstairs. (I am waiting to see my rheumy about this) I don't always think a non-lupus person totally understands.. Ask your GP to refer you urgently to a new rhumie closer to you. Get a friend to go with you to your GP. Explain you have had enough and your other rheumy is too far away. If you have a day when you can barely walk make an emergency appointment at your surgery and tell them you need to be seen urgently, explain how you are and that you have lupus. Stay positive and keep posting as we all understand on this site. Take Care x

[Neverforget]

Hi Jojom,

Thank you for your post. I'm sorry that you are not feeling too good at the moment and I send you lots of love and big hugs . I know how you must be feeling. I myself broke down this morning as my stupid legs wouldn't work again. I've had a flair up with the past 6 months and was in hospital 3 weeks ago. I'm currently on steroids which helped initially but have been reduced on a weekly basis and have caused a secondary flare up. You mentioned you have a urine infection. Have you seen your GP or do you just feel like you have an infection. The reason I ask is that I have noticed that when I have a flare up it feels like I have a urine infection ( increase need to go). They have found Leuk and blood in my urine but no actual infection. I have been told that it may be part of my condition. I think that you really need to contact your Rheumatologist or Rheumatology Nurse Specialist who can arrange for you to have some bloods taken and look at treatment. If you haven't got a rheumatologist that please contact your GP and asked to be referred as a matter of urgency. I hope you get the support you need. Love & hugs xoxoxoxo

[Tigerlily4]

Awwww, Jo, hugs from me too. Most of us will have been where you are now. I agree it sounds like you're having a big flare and your anti-inflammatory pain meds probably need upping for a while. Know what you mean about dfficulties with GPs too. When it gets to the stage where they're not taking your complaints seriously, a good idea is to write or e-mail the surgery. Tell them exactly what you've told us. A letter will go on your file and is therefore impossible for them to ignore. Since you're the mother of a young child, it's even more important you get the help you need pronto. Might also be worth talking to your health visitor (if you still have one). Wish you better soon. oxo

[megs_tom]

Aww big hugs to you hun I know how hard it is being a mam and trying to get through the day when you feel so rubbish! I'm only 23 and my son 4, so I can totally relate! My partner works 6-7 days a week and I don't feel he understands what I am going through either. You really need to go back to your gp and tell them how much you are struggling, is there not another rhuemie you could be refered to? I hope you get sorted soon hun, feel free to message me if you want to chat or get it off your chest. Big hugs xxx

[lupydragon]

Alos sending big hugs, I know it might not be much, but at least on this site we all know and have probably been through similar things. Agree with all the above, you must go and see your GP / Rheumy. It might even help to take a copy of blog, so they can see how you are feeling. Take one day at a time and hope you feel better very soon

[Welshexile]

Hi jojom

Sending hugs and also just a suggestion but somewhere on this forum is a "letter to family & friends" which I would suggest giving to your partner - it's a pretty good opening explanation, in laymans terms, as to what Lupus is and how it can affect you & make you feel.......

[Thaddeus]

Hello Jojom

I thing we can all relate to your frustration and symptoms. If there is not a local support group then you really should get onto one of the facebook groups. You will find that you certainly are not alone in your predicament and feelings.

[angus50]

Hi jojom

I am so sorry to hear what is going on for you and how awful not to have anyone you can share you worries with. Please do get yourself off to see the gp so that he can get you some treatment that might make life a bit better. In the meantime if you fancy a chat I am here. Take good care.

[Herb]

If you have SLE a water infection can be serious so go to the GP to get treatment for that, as as soon as possible. You may need antibiotics for it.

Maybe once you have that under control you will begin to feel a bit better.

Also see if your lupus specialist has a specialist nurse you can phone when you have worries about your health or coping with Lupus. I have one and it is a big help knowing I can talk to her on the phone when I need to.