Hey guys, sorry about the post but I really do feel like I am on my own dealing with this lupus lately and no support. The passed 2 weeks I have been really bad. Taken around an hour to get out of bed every morning and I have been catching taxis to work as I haven't had no energy at all to walk like I normally do. I feel like I haven't had no support lately from my family. The other night I got home from work at 6 my mother was sorting out food and I went up to bed at 6.50 I was so tired and drained I just wanted to sleep she shouted at me as I didn't stay up to eat. Work haven't been supportive at all and they know about my condition I try to carry on as normal even though I feel like I physically can't cope. I am having blood tests done ones a week for 6 weeks to see if the new tablets ( azathioprine ) are effecting my blood count if not they will up the dose. it seems like no one understands what it is like to live with this condition. I don't want to be suffocated but now and again ask how I am feeling that isn't to bad is it? I am always there for anyone who needs my help but I get nothing back.
Lupus, feels like I'm on my own. : Hey guys, sorry... - LUPUS UK
Lupus, feels like I'm on my own.
We often feel alone... For all of us who suffer / put up with Lupus etc it can feel very isolating and is an "unseen" illness for those on the outside. Sleep when you can and rest up as much as you can. I wish there were magic words to make you feel better but in reality, there are no words that can really help you get through right at the moment... But I can say, from my long experience, that you will have better days. I started azathioprine (which was a red line I had to cross) a couple months ago. Being very honest, I have to say it is working (I am tentative about saying this but I do feel it is making a difference) and I've had many years of various meds not working. This year has been my hardest since dx 25 years ago. Try and hang in there. Though my other nemesis is prednisolone, it DOES and can help many folk. I had to take it for a while recently and it eases the inflammation and can help with energy levels. I swore many years ago I would not go back on steroids but... I had to. Please believe me, I don't often recommend steroids but if you are really struggling, perhaps ask the GP if they may help until the azathioprine fully kicks in. I do understand where you're coming from... It can be so debilitating... Three months ago I was very poorly... I am just beginning to start feeling as though life is getting a little easier. You will have better days ahead if this is the right med for you... Do try and rest when you can and always know, you are not alone in the fight against this illness. I don't know how old you are but I know that when I was in my 20's my parents found it very hard to see me ill. 30 years in they still find it hard to see me in worse shape than they are but they do understand a lot more now. Your mom may not mean to be harsh on you so maybe try and talk to her about how you're feeling. If not, keep talking wherever you can. I understand you feel alone. Take it a day at a time. I really hope that this med will work for you.
I am 25 this month dragonfly4. I know there will be hard time's. I have been dealing with lupus for 4 years now and it do take its toll. Lately it's felt like I physically can't cope anymore. I am glad you are now on the right medication and things are improving. I understand what you say that parents find it hard to see you ill. My mam have got osteoporosis and it's hard me seeing her the way she is on days and helping her as much as I can around the house. Thank you for your reply it do mean a lot. Fingers crossed I will see results soon. I am seeing my rheumatologist on the 27th
Hi Blondie
I support everything Dragonfly has said. It can be hard dealing with all the different things we have to deal with. YOU ARE NOT ALONE, as you will see by reading all the lovely people on here.
I too am on Azathioprine. I started on 50mg back 14yrs ago and it has been fine. I have a blood test every 4 weeks. My hospital posts out my results 2days later so I can see how things are. This is reasuring. Last summer I had a blip and it was increased to 75mg which has restored my results to normal.
As you can see, I too find Azathioprine helpful and have been taking it 14yrs.
I do hope this helps you have confidence in this med. we are all different but I think a lot of people on here take it too.
Please take care Blondie. You are welcome to our site. Feel free to rant or give vent anytime you like. It helps at times. Remember, you are one of very many here!
I hope you can get a little lift from the steroids as Dragonfly suggested. It will hopefully support you while Azathioprine takes effect.
Best wishes to you
Hugs of support
OOOOO
⚽️
There must be something in the air because I've been going through the exact same thing this week i never thought I'd say this but friends I've had for best part of my life seem to be purposely excluding me they ask me to attend get togethers which involve drinking, past experiences have learnt me the hard way the recovery is not worth the night out, so i don't go i don't work now due to the pain I'm in so I feel as if I did go I'd have nothing to talk to them about, this illness seems to be very alienating but staying optimistic I'm finding how close my friendships are and I'm planning on sitting them down and showing them the spoon theory just to educate them cos they obviously don't even understand day to day life of someone with lupus
Morning Blondie, as everyone has said above, here you are never alone. A lot of the trouble is with our Lupus and associated conditions, people cannot see anything that indicates you are ill generally. If you had a broken leg, you would probably be asked a lot more how you are for example.
The Spoon Theory BevJane refers to is an excellent way to get some of how it affects you over to people, but even then, you will find some just will not 'get it', in which case I usually just move it right along because I have too little energy as it is without getting emotional and upset on someone who just is not capable of either listening or trying to understand.
My experience of friends is mixed, I have seen a lot of friends who have been in my life for decades gradually withdraw and disappear, seemingly unable to cope with my illnesses, and I have not made any attempt to try to salvage the friendship, because were they really friends. Then there are those who come into your life for a short term, one particular experience was someone that decided their illnesses were more important than mine, a real brain drain, and a very selfish and narcissistic individual indeed, that was a steep learning curve for me.
The family and friends I have now I am comfortable with, they totally support me a lot, so I guess what I am trying to say is, surround yourself with people who do not suffocate you, but are genuinely prepared to be around you unconditionally. Family you cannot choose, more's the pity sometimes, but friends you can.
Always happy to chat away off the boards should you like Blondie, be kind to yourself ok.
Dear Blondie,
You are so NOT alone! I was diagnosed a little over 4 years ago. I know exactly what you are feeling and how frustrating it is for people to understand. The only support I feel I have is this forum. The fact that we are thin and don't look sick is not a plus for us. We rarely go out to dinner, as I am worn out and want to get into bed a little after 8pm. I am retired, so I am lucky in that way. However, my labs are pretty bad, and I get headaches and joint pain and fatigue every day of my life. It does get to you! My husband's brother is going on 91. He's old enough to be my father - yet, with all of his medical issues, he lives his life better than I do. I was diagnosed at the age my Dad died of Lupus complications - 67. I get angry a lot, and frustrated even more. Don't ever feel embarrassed to talk about how you feel. Without support, you can drive yourself crazy! Sometimes I want to punch a wall! I play tennis 4 days a week. I used to be an excellent tennis player. Now I have to force myself out of bed 4 days a week and try and play an "acceptable" game. I was in a group, but they threw me out a few weeks ago because I was not playing that well. Basically, most people don't understand or accept how we feel, so we have to find people that do. Even our spouses can't feel what we do. It's been a rough road for more than 4 years, and sometimes, we get sick of being sick! Talk to us......we are here for you!
Hi Blondie,
I am sorry to hear that you are going through a rough time lately. I started on azathaioprene last August as the flares were becoming the norm.To be honest I think the stress of taking a drug like it ,knowing the side effects and weekly blood tests to start with,can actually make you feel more exhausted. I know that I seemed to feel worse for a few weeks after starting with total exhaustion ,headaches ans stomach pains plus the trips to get blood tests took its toll.I stuck with it and gradually after dosage increases it has made some difference so try to ignore negativity from others and realise the importance of looking after yourself as it really is the only way forward. Have you got information leaflets about lupus and the medications to leave about for your family to see just what you are going through? I had real trouble with my kids school as my children also have ehlers danlos,ADHD autism and other disabling condition and the teachers couldn't understand why sometimes I couldn't make parents evening or help with major projects etc . as apart from the knee braces I look fine.I had told them about lupus but it wasn't until I took some of the lupus UK information in that they really understood just how I'll I can be and just how amazingly I cope considering.I think educating others can be a great eye opener.Anyway enough of my waffling ,hope you feel a little better soon and never feel alone
Kind and caring thoughts coming your way
Effie
Oh Blondie22, you are not alone at all, My Lupas has flared up in the last 3 months and mornings are the worst, it takes me an hour as well to get going. I wonder does your mum know you haveLupas or have you kept it a secret? I have been on Azathioprine before but not for Lupas, be aware that your hair may thin out from this drug, I was on 100mg daily and apparantly that is not a huge dose.
We are all here to support you, so vent away as much as you like, we know your pain, it is a bastard of an illness to have, but we understand, oh boy do we understand! Take care and God bless.🍀❤️
I get it, I agree with you, it would be nice for others to stop and ask how we are. On the other hand, I'd like that to be genuine - I don't know about you but I seem to be surrounded by people who do the obligatory stuff but who don't really get what we're going through and don't really make an effort to understand either. So they plaster this fake worried look on their face and ask away but not really listening, nor caring.
On the other hand, there are people who do care but they can't comprehend what's happening to us - my Mum is like that. She can't get her head around this disease, tye unpredictability and the weirdness baffle her. Each time she speaks to me on the phone and I tell her the latest weird thing happening to me she's more likely to change the subject and act all cheery, then call my sister and cry over the phone to her that something's wrong with me and she doesn't understand what! Then my sister calls me all in a panic and I have to then play it all down so that I don't bother anyone.
We are alone in this vis-a-vis people around us but not alone in this forum. Well done for reaching out - we all feel for each other because we all know how it is.
Do you know. You guys are so amazing. Thank you so much for the support I really appriciate it. I have been on this forum since I got diagnosed a few years ago but I did go through a tough patch and didn't come on here for a wile. My mam do know about the illness and she have came to every rhumy appointment but still don't get it or any of my close family. You guys are truly an inspiration I can't thank you guys enough.
Hi again Blondie... and all the support network here.
I stopped talking to everyone (except my chap who lives abroad) around two years ago. I found I no longer had the energy to explain the everyday fatigue and pain because try as they would, they still didn't and don't get it. I cut off from friends and family in 2008 and live a life of solitude now (not that I would recommend that but it's better for me). I can finally feel the peace at age 50 at not having to explain myself, to constantly have to say "I'm fine"... to be honest, saying "I'm fine" is, at times, just as painful as the illness when you know that most folk would rather hear "I'm fine" than to really try and understand how you are actually feeling. People don't want to know if you're always poorly, you can almost see the glaze across folk's faces as soon as you mention feeling poorly. I stopped communicating with the outside world until yesterday when I wrote here... so inasmuch as you found the courage to talk out loud, you have also helped numerous other folk, including me, to speak out. So thank you for that.
When I was your age I was fortunate enough to have huge family support. I was incredibly ill and in a rehab centre (for stroke/accident victims) and even had a Rheumatologist tell my family it was "all in my head". A couple years later with no real dx (seronegative poly arthritis) I became pregnant and got terribly ill, was living in the US at the time, then had postive RA factor, Anti ANA/DNA blah blah etc... all the markers... and it's been a struggle to hold on since then. Fibro, Raynauds, IBS, Endometriosis (had a hysterectomy), fused feet, 18 ops, IVF for my second baby.. and the list goes on and and on <yawn>. The latest is vaculitis (either that or I have the worst summer chilblains one can imagine - my rheumatologist is now trying to decide if I need to start nifedopine along with 150mg azathioprine!) If I didn't know me, I'd say no-one can have that much wrong with them and look so normal. It is what it is and it's a whole lot easier to tell strangers than the people close (in distance) to me. If you saw me, other than my hands and the loss/thinning of my blonde locks, you would never know I had a thing wrong with me. One day I can be out with my camera and yomping across the moors, the next I can be bedridden for days/weeks. There's no knowing how I will wake up in the morning until I actually wake up. There are times I am tired of being tired and not wanted to wake up.
However, my story is probably similar to many others here who really do understand how you are feeling. Holding on, not toppling off, is what you must try to do until the good days come around again. And they will come around and life will seem so much better. It really is a day at time. Take the good days when you can and let your spirit soar.
I would urge to talk, write, in any way you can to get you through these tough days, even if it's just online and there is someone who is listening to you. One day you will wake up in the morning and it may not seem quite so tiring or quite so painful. It may take a little while to get there but when the right meds kick in and it works for you, then you can start to live life to the best you can be. Not the best that others expect you to be... just the best that you can be. Live by your rules, not the rules of others.
The good days... they can and do happen. The bad days will happen but the good, or maybe just better days, will come by again. When that happens, just take time to enjoy them. Rest, rest, rest. Don't do like a lot of us do... which is as much as possible because you're having a good day... just enjoy, rest, enjoy, rest <rinse and repeat>
I have an amazing Occupational Therapist who comes to my house and sits with me and listens. She brings me gadgets and splints and bits and bobs to make life easier and arranges for people to fit things in my house to help me get around. I even had a biobidet just fitted (I know, waaaaay too much information) which she arranged because when my hands are totally rubbish, swollen and painful... well, to be independent I have use the right tools to make life a little easier - no matter how embarrassing (who even talks about these things!). She chastises me when she sees my lumps and bumps and rashes after I've been gardening and tells me "stop pushing yourself on the good days" - but she chastises me in a positive way that makes me listen to her. There is always payback for any activity I do. It's taken me a year to listen back and to hear her words fully - she (and my chap) are my life savers. It's taken having the biobidet and handrails up the stairs for me to understand that I can help myself if I listen to my body. I've been assessed for a powered wheelchair so that should I choose to leave the house, I can go by my own transport. I work part-time which kills me but also makes me feel alive because then the illness doesn't win. Other than work, hospital and the docs I rarely leave my house unless I have to... why? Because I don't want to say "I'm fine" to anyone, any longer.
I truly hope that you will find support by whatever means and that you can believe that one day you will start to feel better.
I take photographs. It's the way I feel when I see an image through my viewfinder and in that time, I feel absolutely no pain at all, no fatigue, no illness.
If you can find something to focus on ... whether that's breathing through the pain and fatigue, reading a book, looking out the window... try and do it. Try and find a focus to help your body rest. You need to believe that better days will come... and for the moment, whilst it may be hard to imagine having some kind of health normality, just for the moment, let us, whoever's reading or listening or wanting to say something and they don''t feel they can, let us be strong for you until you can find the strength to battle on.
It is a battle. You may not be able to beat it but don't let it take you down and take you out. Rest, rest, and rest some more. Be the best you can be when you feel strong enough, do what is right for you and try not to lock yourself down and your spirit dissolve. Better days will arrive, 'til then, rest and take support from wherever you can.
I wish I could offer you more... the best I can offer you is hope because I KNOW that you, anyone here, will have better days - it's just trying to be patient until that arrives. It's not easy so for the moment, please know that you're not alone in how you feel and I, and others here, will listen to any rant you may want to do.
I was part of a US forum for many years, talking to strangers (who became online and real life friends). I've had to cut off from them too for a while... but you know what, they are the only folk who NEVER pressure me to be anything other than who I am. Good, good people.
I think you'll find that here. No-one to pressure you to be anything other than who you are. You didn't ask to be ill, no-one deserves to be ill, so try not to be too hard on yourself when you're feeling rubbish. Do what you can, when you can. When it's all too much, talk, rant, listen, go silent... do whatever you feel is the best to get you through the tough times and you won't be judged by folk here who wish to support you.
Hello dragonfly4. I am so sorry you feel like you have had to do all this on your own. I honestly do take my hat off for you. Fingers crossed you will get this chair sooner than later so you can get out and enjoy the air without feeling weak and drained by walking. You are an inspiration in my eyes. I am so happy to hear that I have plucked up your courage to speak up about how you feel. I am here for you or anyone else that needs a rant rave or a general chit chat. I maybe going through a bad time at the moment but I am always here for you or anyone who needs me to listen to or give any advise to. Thank you so much for such kind words you have lifted my confidence up that this can be fought and you can live a normal life even when you do get bad days you still can think positive and that to me is so brave. Well done for being strong and keep on going. You to are not alone in this we are also here to listen to you. I hope one day you will see your family again.
Hi Blonde
Just wanted to say I know exactly how you feel so please dont feel alone. O e also been struggling this week, yday k was three hours late for work, my manager was nice enough about it but I have to make up the the time so will probably struggle even more thus week.
I think i would just say what everyone else has said, try and pace it and don't overdo things, I know it's easier said than done and I probably don't look after myself as much as I could. I know what you mean about others not understanding. Sometimes I try and say I'm fatigued and all I get is 'ahh yeah aren't we all' and that frustrates me.
But keep going and this forum is amazing for support so definitely make use of us xx
Yes I know what you mean there when people say they are just as tired as you. I can understand with work wanting you to work back the hours I know what that is like but it's still making you work harder and your pushing yourself which is not good at all. Hope you are well. Keep yourself as healthy as possible
Hi Blondie, well done for speaking out. These low periods will pick up and the weather heating up doesn't help. I agree with others, sit down in a quiet moment with mum and chat with her, hug her,ask her how she feels about what's going on. I would guess she's worried. Four years ago my daughter had anorexia and weighed five stone. There was little I could do and sometimes I found myself shout in frustration and then sad I had done it. We both felt alone I was tired with lupus and struggling to cope as she was. There is light. Has your Dr suggested an occupational therapist to help you moderate things, is work, rest, socialising it helped me. Good luck.
I am going I sit mam down and ask her. I am off from work now on holiday in hoping the rest will work. I am with occupational health at work they have increased my sickness tolerance but that still don't make a difference as work is under a lot of service pressure so it's hard to take a day off when I feel I can't cope
Hi Blondie
I really felt for you when I read your post as I have been suffering. With lupus for 20 years so I can tell you it sounds impossible for you to believe right now , but things will improve for you. I had 3 children under 7 years of age when I was diagnosed and my world just colllapsed around me. I just was in so much pain and couldn't move but I got there.......when I found when I really could not cope I started writing a diary about how I was feeling as I had no one I could talk to and it really helped.All my anxietys and fears day by day went down into this book of mine, I never told anyone and kept it well hidden and it really helped me. ........You're are absolutely right people do not understand about lupus one looks so well and yet one can be in pain and oh so tired that you have no energy at all. I also went on Steriods which I know are not ideal but they worked and then after time went on went onto Methotrexate which was my wonder medication for me and whilst on it could lower my steriod med and eventually come off Steriods.
Life will turn around for you, your mum does not understand and I would think she is scared that you have this condition, and when she shouts she's just worried about you and that you need to eat etc. I would when possible have quiet word about how you feel to you mum and ask her to maybe read up on Lupus. Are you a member of the lupus association in London I joined and it really helped me especially reading about other people's experiences. You must try really really hard to stay positive somehow things will turn around for you and the fact that you have found this health site means you are already doing something positive so well done for that and I know you will get that. Look after yourself and take care.
HiI dont often post on here but I have to say YOU ARE NOT ALONE please believe that. I started on azathioprine over 10 years ago on 150 mgs a day it took about two month's to kick in and star to work properly. I'm now done to only 50 a day plus 5mg prednisolone. Please adj your rheumatologist if you need to up the dose until it starts to work you're on a very low dose. I think many of us are having flares because of the pandemic and the stress that has put on everyone's mental health. With a bit of luck that is now passing. Please please rant o here anytime and one of us will respond and chat sometimes all you need is a good ear to listen. Really hope you feel better soon xxxx
Sending big hugs
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