I was diagnosed with SLE back in 2010, I was 34. After 8 weeks of extreme joint pain etc, (I hadn't bothered going to the doctors, just thought it was a virus!) I ended up in A and E and was diagnosed within a day of being in hospital. Anyway, 2 years down the line, first year hellish, second slightly better and so far, apart from a few days here and there of real bad joint pain etc (every day i am achy and stiff somewhere!) my meds seem to be working (touch wood) my main problem seems to be depression, I am so sad all the time, lonely and have no one to talk too. Don't get me wrong my family are fantastic but I just don't want them to see me struggling.. It's bad enough when it's physical let alone emotional. I have 2 young children, who are 6 and 8 and have even been struggling to put on a brave face in front of them. It was my consultant who said depression can be a factor, I have been up and down for years, even before I was diagnosed. My relationship is on the rocks, I hate where we have just moved too, I'm further away from everyone. I feel totally isolated, have no motivation, and feel constantly tired and fed up I dont want to or like using lupus as an excuse, but does anyone else feel like this or has felt like this? Sorry just joined this site and needed to get this of my chest!
Dreaded depression!: I was diagnosed with SLE back... - LUPUS UK
Dreaded depression!
Gosh - where to start, Twilo76?
Yes - depression goes hand in hand with lupus, whether as part of the disease or whether it is a result of the difficulty of coping with all the changes in our lives. Fatigue makes you feel less like socialising and it is easy to become isolated. On top of that - often you feel awful but look completely fine, so your family and colleagues don't understand just how horrible lupus is.
I suspect a lot of us have had to have a battle with depression at some point in the course of the disease. I know I have - and can still feel it banging at the door to come in. So far, I am managing to keep it at bay (I force myself to go out and do something; I congratulate myself for tiny achievements; I cut myself some slack). Like you, I used to feel I was using lupus as an excuse - and I forced myself to work as hard as everyone else, and felt bad when I couldn't manage all the social occasions expected of me. That state of mind came to an abrupt end when my kidneys failed. Now if I can't - I can't - and if people have an attitude, it's their problem, not mine.
You'll get through - one way or the the other (with or without 'medical' intervention), because of your children. But I reckon the first step is knowing you are not alone.
Take care.
Thanks very much MaggieS for your reply, it is good to know that I can have a read on here and get advice. I think because lupus is as they call it a hidden disease, you feel you should be doing normal things, but its not always the case. Thanks again I feel better already just being able to tell someone, as they say new year, new me, (I wish in body anyway ha ha) i will need to get more active, find a hobby, i live in the Cairngorms, so have no excuse for walking, it is beautiful!!! it's the socialising bit that gets me down, I live so far from my pals that I can't just spontaneously turn up, the last night I had planned, I had to cancel last minute because my whole body flared up! There was no way I was dancing the away! Also you are right my children have seen me at my worse and for ones so young have been so fantastic, they will keep me right! one last thing, How can I find out if there are any groups in my area? (Highlands)
Hi Twilo76,
Have you discussed your depression with your GP? It can be difficult to discuss it because it can make it feel more real when you do, but there is a lot of support that a GP can offer. Obviously there are anti-depressants which you can try. Many people find these very helpful. They're not for everyone though. If you just want somebody to talk with they can refer you for counselling, which may be helpful.
We don't really have an active group in the Highlands at the moment. However, if you contact the Grampian group (most likely the closest to you), they may have contact details for other people near to you and help put you in touch. You can get in touch with them via their website here - grampianlupusgroup.co.uk/co...
Let me know if you need anything from LUPUS UK and I'll do my best to help.
Thank you the info, its good to know there are people out there that understand and listen, even just writing this and getting such a great response has helped. I will look into the Grampian group. Thanks again! Keep up the good work
Maggie, reading your explanation of events took me back to my history, it is almost identical minus the children. Sadly no or has ever told me about the depression aspect which has meant that for the last 10 years I have had a rough time both entally and physically. I am now 45 and after joining this site last year, realised that I needed help, so went to the gp and requested counselling. Boy, what a relief..... Go and ask for help before lupus creates anymore damage
My thoughts are with you
Me x
I was told by my consultant after going in to see him for my 4 month check, I was in tears. Thanks again for your advise and will speak to my GP when I get my bloods done next month. Thank you
chablis can i ask my son is of the atistic spectrum violent /destruction/rebelling is his downfalls i am 44 he is 15 i home education him since 2nd year junior school and he walked into mainstream school in year 7 and went straight into middle level groups but part of his problems are o d d but ill get 2 the point, im desperate to speak to somebody but i dont know who, my son is 15 yrs old 16 stone and 6ft 2in he bullys me there is no other word for it, im struggling with my lupus and all the disease that come with it plus emphazema and im on methotrexate, im so worry for him as hes missing with a not so nice crown and with his diasbilitys hes soo easily lead and im no copy with him very well since being diagnoised 2 years ago i havent worked and ive gone from flare to flare to be in a continued flare for 7 months and on 156 taablets per week most times i dont even have the energy to think for myself does anyone know if i can see a councillor im crying a lot and very down and themoment and just feel like i have no one to talk to thanksx
Hi KittyKat68,
If you ask your GP then they should be able to refer you to a counsellor. I'm sorry to hear you are having such a difficult time at the moment. Do you have anybody around that can help you out and reduce your stress levels a bit?
Hi Kittykat68, just to say how I really feel for you. I work with autistic teenagers and am aware how exhausting it can be. With lupus added, you must be doing so well under the circumstances. I hope everything will calm down for you and your health improves.
Morning Twilo76, and welcome to this site which is so supportive of its members. If you message Paul on this site (He is from Lupus UK) then he will let you know of any groups in your area. Alternatively if you go to the Home page on here you can go into location and see if any other members live in a radius near to you that you could message/meet up with.
Sending you lots of strength and it's a good forum to say how you really feel....good or bad with people who understand.
By the way what a lovely place to live. xx
Yes, I am glad I have come across this site, I really needed someone to talk to, I was at the end of my tether last night, It has helped a lot just to get such a great response from people who actually understand!! Thank you! And yes it is a beautiful place to live, I am very lucky!
Glad you are getting great responses. I too was born in Scotland Clydebank and spent my first five years there. Holidays with my family have been to Fort William, Dornoch, Isle of Harris and hopefully soon to the Isle of Mull. It's such a beautiful country and you are indeed lucky to live in such a great spot. When my husband came out the army Scotland was our first choice but we didn't get the house we wanted and stopped in North Yorkshire on the way back......19 years later the rest is history. I hope you are quickly at home on this site. To me it has been a lifeline as has Lupus UK xx
Yeah it has been great! My family, when I was young settled up here, after my dad was made redundant from the RAF. We had lived here for a year when I was 6, they liked it here so we made it our home. I lived in Alness, Ross-shire you would have passed the town when going to Dornoch!!! I have stayed in the cairngorm area for 4 1/2 years. It's great for the kids, lots of outdoor activities for them! Not that there will be much chance of me snowboarding or Rock climbing for me ha ha! North Yorkshire is a nice Area too, lots of countryside. I may not blog much, but will certainly use this site for info and advice. It's good to know you are not alone. Nice to "virtually" meet you by the way! 
Hi,Twilo 76, I am 65 and went through this about the same age as you, back then not much was known about Lupus and family and friends said I should 'pull myself together'. My mum and dad had died and my sister is one of those who is never ill(except when she has a cold she is 'dying!?) Daft as it sounds I asked my children for help, they were then Six and Eight and explained about the illness as much as I could and said I needed loads of hugs and kisses to help me. That was the Easy part. I don't think my hubby even now knows just what I go though or if he does he does not care! I MAKE myself go swimming, the water over my head relaxes me, or when I can't get out, I sit in a nice hot bath and just pour the water over my head 'till I feel the stress start to fade. My children knew that if the bathroom door was Locked, it meant I needed some 'cry time' and to wash away my tears. It is amazing just how they understood and would just tap on the door after about 15 - 20 mins. and ask 'are you getting better mum' I used to walk but for the lasy three years have not been able to and that bring back the dreaded 'dark clouds'. Oh I so feel for you, but please DON'T shut people out to 'protect them' Tell them,Have a Cry with them,send some of the free Lupus leaflets to them. I wish you luck and Love my friend.xxx
Your children sound like they were a great help in their own little way, its amazing how they react to something which can be terrible for them to see. My two were 4 and 6, and yes lots of kisses and hugs helped me, they still do. They are adorable kids. I wish I could be more open with family, especially my mum she is a gem, but is religious, and that unfortunately gets in the way of our relationship, which is a shame cos she has a heart if gold. My sis lives away and has a busy life, I hate annoying my pals I only see them every so often, so don't want to spoil our time together, silly I know and like u said you did, I also need to make myself go out for walks and swims.... Onwards and upwards....... thanks for response
What a good blog.....funny cos im just sat here now typing away because im flat as a pancake emotionally ,its two steps foward and five back for me ,i felt like i was coming out of a year long flare this week ,only to come crashing down AGAIN yesterday ,all i did was go for a walk and do a bit of shopping and be a mum ,i managed to work all week and be ok but after a day off fresh air and regular life ,bang....my lymph glands swell ,i feel poisoned ,hurt even more and feel completely depressed.I often wander if anti depressents would lift my mood so i wouldnt feel so unwell??but i dont think so ?i know i feel low because i feel so ill ,when i feel better i mentally feel great ,how can a happy pill cure lupus?well if it makes you feel any better ......i too am in that awfull lonely lupus world ,my freinds are mostly in uk ,im in the channel isles,but i dont know if they would really understand this disease as we can look so well on outside?they remember me as outgoing ,sporty and love a good drink ,no longer is that me 
lets make a deal.........lets really try and be happy .take great care ,brave x
It's hard brave, but sometimes 'Happy Pills' can just give u enough motivation & enough of a lift 2 try & do other things, I've taken them & every so often, I'll go back on them just 2 get myself back on an even keel x
Brave, I was in tears writing it last night, I have felt like this for so long, have good days but most of the time I, like u just feel flat...... No nothing! I just need to get my thoughts in place and start the new year happier, I don't think pills are the way I go, unless I can't get out of it by shear determination. The deal is done I WILL be happy!!! Thank you
Twilo, believe me when I say the majority of us get like this. I myself am 34, with 2 kids aged 10 & 8. I've been diagnosed 4 near on 19 years (but I'm 1 of the lucky buggers who's had it since birth) & up until 2 years ago, I had managed 2 maintain a 'normal' life, apart from the daily aches & pains & a few blips here & there. Once u start spiralling down in2 that dark place, it can be yet another battle 2 pull u'reself back up which, let's face it, nobody needs wioth all the crap we already have 2 deal with so I'd suggest going 2 u're GP first & get some antidepressants. Ok, u may not want 2 resort 2 that but there's no shame in needing help 2 get a little 'lift', this could very well b enough 2 help u motivate u'reself 2 try some of the other suggestions mentioned. This site is a wealth of information & support so don't ever think u're alone ;0) x
It's true, you have so much to contend with without having to deal with the emotional side of it, even brain fog, which I read about on here, my 2 kids finish my sentences of all the time, I always get words wrong and I am really conscious when speaking to people, I just thought it was down to having my kids!!!! Ha. I am so grateful for everyone's help, I will use this site a lot, and not just to moan Promise!!! Its good to share postives in your life to, i hope u all agree!! Thank you Sher and thank you all!! Take care
Twilo 76.....i so get the paranoia when speaking to others,i get so worried its all gonna come out a load of goboldy goop lol!infact half the time it does,i sometimes pray i dont have to speak to anyone but then i complain about being lonely ,cant bloody win;( sometimes i speak so positive and clear ,almost like i have had 10 cups of coffee,and other times i cant even string a sentence together ,like im drunk!i also can honestly say that i now know i feel down 80% of the time;( thats not a good ratio.I could except 50/50 .I have quite a strong mind and am always trying to push myself foward ,but im honestly running out of gas,where do we go from here???????
EXACTLY like me brave :0( Luckily, most of the people around me know I tend 2 go off on a tangent & talk a load of shite at times & they accept that's just me. If I'm trying 2 talk 2 some1 who ISN'T aware, if I KNOW I'm gonna have difficulty (I can tend 2 it gauge now & recognise when I'm gonna get confussed!) I just tell them b4 a conversation begins that they'll have 2 bear with me as sometimes it takes a while 4 my brain & mouth 2 work on the same page as I have an illness & am on a lot of meds. MOST people accept this & r very patient. We just have 2 try & deal with things in our own ways, as best we can. In all truth, I've reached the stage where I don't really give a damn what people think of me now & if they think I'm dizzy, Skitty, mental, whatever, WHO CARES, it's THEIR problem if they're so judgemental, not mine :0) x
Ha "glad" to hear I am not alone Brave, Sher! It takes a lot of concentration to have a conversation, especially with someone you don't know. I have just moved to a new village 6 months ago, so taking the kids to school, has been daunting, lovely mums but I have seen myself go quiet half way through a sentence, cos I can't think of what I am trying to say quick enough, then getting flustered, I'm too embarrassed to tell them about my illness silly I know but I just want to be normal! Ha if u can call talking gobbledygook normal! The joys the joys!
'Baby Brain' & 'Pregnancy Brain' having nothing on 'Lupus Brain' lol!
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