Im stuck in a place where depression is taking over and no one is doing anything to help me (i.e. doctor or rheumy) Day in day out I do nothing because im so done I don't go out I went out of my house 3 weeks ago I haven't set foot out the house since, I always close my bedroom curtains and never let any light in I just switch of from outside. I feel like I don't want to go out anymore Im sick of everything I haven't eaten a proper dinner for a long time just little snacks here and there crisps, biscuits, banana or drink and that cycle repeats itself I eat to many crisps I properly haven't eaten a good dinner for 3 weeks since I went to my fiancés family for dinner. I haven't had any money coming in since last year October when I got sacked from my job due to my illness I applied for DLA last July since being diagnosed to see what would happen since had no joy then this month applied for ESA am awaiting an outcome but don't think that's going to work I am not the person to take money from anyone including my mum or my fiancé. Its just adding to the downslide of my depression I have no idea what's going on I even hate bothering my family with my depression so I bottle it all up and just end up snapping and getting aggressive with anyone.
It hurts being like this when I see other 18 year olds and they can do anything or even earn anything they like I see others like my friends who waste there life with drink drugs what ever and there's me wishing for their life, so I just turned to everyone on here because I know the support you will give would be overwhelming
Soz for going on so much
Danielle
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Danielle2419
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Hi Metoyou, it sounds like you are having a hell of a time at the moment. You have turned to the right place for help. You have already taken the first step by admitting how you feel on this site, so that was brave in itself. Next step is to go to the doctors and say exactly how you are feeling and what your day is like. Then you are on your first step to getting better. If you have a diagnosis of lupus/ctd, and you are coming to terms with it then it can affect you emotionally too. Are you on meds for your diagnosis. Could you be on the right meds. These are the questions that the doctor and rheumy must look at together to help you. Please, please, please take a trip to the GP soon so that you can get the help you need and a big hug your way.....come on you can do this xx
Thanks for replying, yes im finding it hard and having such a hellish time, yesterday was one year with having lupus and of course nothing to celebrate about that took a toll on me, iv spoke to my rheumy and always list my symptoms and the depression but nothing is getting done I told my rheumy twice that im depressed but he doesn't take the issue further or even ask questions im almost fed up and im meant to have one of the best lupus docs around DR D CRUZ at st Thomas I just don't understand I also have protein leaking out into my urine from my kidney so they seem to be focusing on that little did they know that is adding to my depression.x
I'm sorry to hear you're feeling so depressed at the moment and you don't feel like you have any support. If you ever need to talk to anybody, please feel free to contact us here at LUPUS UK, our number is 01708 731251, or when we're not here you can always call Samaritans. Their number is 08457 90 90 90 and they're just there to listen.
I notice from your profile that you are around East London? Perhaps, if you are able, you might find it helpful to come along to the support group for young people with lupus which is held at UCLH in Euston. It's for people with lupus aged 16-24. They're a lovely group and I'm sure you'd find them all very understanding.
If you'd like more information about the group, you can take a look here - lupusuk.org.uk/young-people or feel free contact the nurse that facilitates the meetings. Her email address is nicola.daly@uclh.nhs.uk
Please let me know if there's anything I can do to help. I'm sure you'll get plenty of support from other members of this forum.
Thanks for the reply and your general help those numbers shall come in handy. But so should the lupus group for youngers that would be great to get an insight into others like myself.
(((Danielle, gentle hugs.))) I am so sorry that you are in such a bad place. It is brave to admit how low you feel, you desperatly need help wih this. I think you need to go back to the gp, and really let them know, maybe print you post out and show it to them as a starting point. I am glad that you felt able to express you feelings here, and hope that just getting it out helped a bit. How are you feeling now? Take care of yourself, things can get better than they are now, you need some help to get there. With love xxx
(((Hugs))) (((More Hugs))) ooooooo breath again lol
Thanks for your reply and your kindness its a great idea printing out my post and showing my gp. Im ok but I actually just feel like im going to cry my eyes out for the slightest silliest thing ever. I wake up in the morning and just know what kind of day its going to be that I would just rather sleep for the rest of the day so I cant feel the way I feel I will take care of myself though x
Pauls advice sounds great, l think if you could go to the support group you will be able to chat to fellow Lupies of your own age and they will completely. connect with you, if you don't feel quite up to that at the mo maybe Paul could forward you some names of members who could chat to you online via fb to start with. It is a horrible illness and you can feel so isolated. I found sites like this and Lupus support groups no matter where you live are amazing and really help to make you know you are definitely not alone hun. Its fantastic that you have reached out to us and we will always try to help. You need friendly and honest advice at the moment to help you come to terms with everything you are feeling, we all feel down and need lots of pick-me-ups along the way. Hope this goes someway to help hun, be kind to yourself you are a strong person and help is at hand. Keep us all posted we will worry about you and want to see you feeling brighter very soon xxxxxxx
Thanks for replying the group sounds awesome and I thank paul for that it would be nice to meet fellow people like myself. I do feel isolated like no one understands my pain. My family say im brave and extremely strong with what im going through I just don't feel like it. thanks
Thats where talking to other Lupies is so good for us because they do understand and often fell just like you do - l know l did and struggled for a long time to accept this illness , l was in denial for over 2 years and pretended to my friends and family l was strong and fine. Made a huge difference when l came across other Lupies to talk to. So glad you are thinking to contact others, l know it will help you so much and before you know it you will be helping them and many others. WELL DONE YOU, DANIELLE major step forward in the right direction. xxxxKeep in touch xx
I feel your pain metoyou, do you have a good friend or maybe your fiancé could go to the doctors with you for support ; help explain things especially when we cant think straight with brain fog. its a great idea from flutterby to print this blog and take it with you.
do you have many gps to choose from in your surgery? if so ask the receptionist if one of them has knowledge of lupus as that will give you a head start so to speak.
I truly understand how dark and lonely depression is as I live with it too,you are always welcome to message me anytime.
please ask your fiancé or mum to get you some complan (vanilla best) as it is full of vitamins and good stuff and will help build your strength whislt you don't feel like eating much huny.
It is odd, isn't it, that on the one hand we will ourselves to fight for survival whilst at the same time wonder whether there is any point. The fact that your asking yourself that in the context of you wishing your healthy friends' life is a positive step - it means you haven't yet given up and that's important.
Try and start a little step at a time - you're punishing yourself a little with your choice in food, so if there is one effort each day, make it feeding yourself proper food. It doesn't need to be something fancy, just boil an egg with a piece of toast, or get a ready pack of prepared stir-fry veg and mindlessly stir-fry them with a drop of oil for lunch, eat loads of apples and pineapples when you just want to be left alone, to give yourself something else to focus on but the negative thoughts.
If you are going to rely on yourself to survive this, then be good to yourself - baby steps are fine, just take one at a time.
As for the money issue - you're in a bad place now and need support. Asking for some help now while you're struggling is not a shame, you may find that people feel good about being able to help with something concrete such as money or contribution to your rent or food. When you get better you can always pay it back somehow.
Don't give up just yet, love and nurture yourself and allow others to help - you WILL go through this.
Sweetie my heart sank reading your post.Go back to your doctors, your support system is not enough for you, you need more help you need a either a reffral to a councillor to help guide you through this terrible illness. 18 bless you I find it hard at 48 but to be young and to go through this find youth groups through lupus uk.
There is a end game to this and you will find it healing hugs sweetheart thinking about you x
Hi Danielle I'm 21 and I'm jst slowly coming out of a really bad flare and I have been exactly where u are down and depressed and with no hope at least u have ur fiancé do u speak to ur mam I no mine has been a great help I'm sure we have a lot in common if u want to private message me and I'm here to talk to I no how hard it gets especially when ur friends don't understand I have been diagnosed with lupus for 14 years so have had a bit longer to get used to it but I have never had flares like the past few years and my life has completely changed. You need to try and get out more thou I have took refuge in food shoppin lol It's something that I can accomplish now and again and I feel like I'm helpin a bit in our household even thou I spend to much. I have been there thou when u want to shut urself away and the embarrassment of how little u can do just b strong it's easier to give advice than take it so I'm sure we can learn from one another if anyone else is young and going thru the same I'd love to hear from u all as it is unusual for a young lupie really lots of love xxx
Hey Danielle,
I got to my psychiatrist through my gp so when things get tough I can call him or the emergency team who do come running and they bring everyone in line including the doctors,- ser how quickly your appointments come through then.
Please, please don't feel like you're a burden on anyone or that you don't want to make a fuss - YOU NEED HELP, NOW!!! - we all need someone. Show the gp your post and have a blinking good cry in front of them. Show it to family and friends too, tell them you're in a very dark place at the moment and need their help to get out until you get professional help.
We're here. Sending lots of love. If you're anywhere near Hornchurch in Essex, I'll send my mum round to feed you up and do what she can, just message me. Have friends in Plaistow and Green gate too. Xx
Danielle, so sorry to hear you are feeling like this. I will be organising another meet for people based in London for some time in the next couple of months. Perhaps you should come along to that, too, once it's organised? Would be great to meet you.
Hey, I totally get how you feel. I was diagnosed when I was 15' I'm 20 now and totally understand the things you are feeling, you see so many people getting on with everything and you always go back to the same point of thinking... Why did this happen to me?! It really does sound like things haven't been great for you, but honestly things do get better. Admitting the way that you feel is a massive step and you can always vent out here. I completely understand about not wanting to spill everything to your family too, mine worry so much and just don't understand sometimes. I have definitely been where you are and I know that it feels like things won't get better and that it will never go away, but things do get better and I always try to make the absolute most of times when they are good again.
I really hope this helps, and if you need to chat to someone who's a similar age I'd be happy to rant together
Stay strong, you will shock yourself realising just how much you can deal with, and when you start to see the light and the end of the tunnel, you will be even stronger, so proud of yourself and everyone on here will be too
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