I have had a plethora of symptoms for almost a year. After my Dad died I tumbled down hill, although looking back I havent been myself for a good few years. I have been living on my wits with 2 small children, husbands redundancies, having to sell and move house, all with my dear Dads heart breaking decline with altzheimers disease. I thought the fatigue and neurological symptoms were caused by stress and got some bereavement counselling. I realised after xmas that I had had a fever for several months. I am a nurse and know this is a worrying symptom so off I go to see my GP... blood tests and so on, confused GP, I suggest SLE then bingo!
I saw a very nice rheumatologist on Tuesday who confirmed the diagnosis and after a baseline eye test I can start the chloroquine. Even though I knew what the problem was, the official news has hit me like a tonne of bricks. I am on the brink of tears continuously. I have phoned in sick to work, my manager was a little frosty and asked me how soon the drugs will work uttering something about planning and 'how we move forward with this'. I wanted to scream down the phone at her. I have been dragging myself into work for months. At the end of the day, done in, I have nothing left for my children, which leaves me guilt ridden. Tonight my husband is being cool with me too. I would drink a bottle of wine if I didnt have such bad heartburn! All I really want is a long cuddle with my dad. He has always made me feel better, always my safe place, non judgemental with unconditional love.
Written by
Queenie70
To view profiles and participate in discussions please or .
Hi queenie70, and welcome to the site. Well what a mess !!! I don't know how to 'pick' through it all, but I will have a bash at it. Without your ill health I would say that, dealing with redundancy, moving house, trying to hold down a job with young children , is exhausting for me to contemplate, let alone live it for real. You must think that lupus is the final straw. In your case it has,' broke the camels back'. We can only deal with so much, and to not get some level of understanding from your manger, when you work in healthcare, just beggars belief !!! I've not really helped so far, but it want you to see it in black and white for yourself. You have done brilliantly to have coped this far. You should not feel guilty about this. You now need some consideration from others.
I have left the subject of your dad til last as it strikes a chord with me. My dad died last year, and I still can't really ' go there', as it is still so raw. My siblings don't even understand how big a loss I feel, as they were never as close to him as I was. However, you do seem to make your bereavement the most upsetting thing. Please do not take offence if I suggest that maybe your husband feels as if he is second best to your dad. You come across as if your dad would make it all better, if he were here. I am nervous about my words to you as I really hope not to upset you further. You are having to deal with so many major adjustments, in a short space of time, nobody would be surprised if you went back to counselling. Being in the health profession, I'm sure you know where to go for literature etc.. On lupus, but if you want to ask anything, someone here will always reply. Don't be a stranger, use us for your rants. That's what we all do. Take care x
Thank you for your kind words. I am sorry for you're loss. Your feelings for your Dad sound so similar to mine. Like you, its still raw. I had hoped that couselling would help me move on a bit but it seems lupus has turned into a big stumbling block.
This week I feel pretty flattened and have been teetering on the brink of asking for some anti depressants for sometime. I wonder if now is the time to ask. Maybe my husband is fed up with me being miserable all the time. We have been through so much together. Our marriage has had more downs that ups and yes, he has always been aware that my Dad was my number one man. Its not right, but that is simply the way it is. I can't change that. We never discuss it, I know he knows it. I don't think I can change the way I feel.
As for work, words fail me. Ironically the 'caring profession' can be the least caring at times. I work as a nurse practitioner in a gp surgery. I rarely see patients with temperatures higher than mine and organise sick certificates for people all the time. I barely recognise myself in the mirror. My face looks grey, my eyes are puffy with dark rings and my hair is so thin now. I clock watch because by the afternoon all my enery has gone. Now I dread going back to face the music. My husband is in work at the moment but after 4 redundancies I know it can all change over night. I have always been the more reliable earner. The weight of this responsibility is now a little overwhelming.
Thank you for letting me rant. I couldn't do this anywhere else you know!
Queenie70 I really feel for you. Your situation is very similar to mine, although I did not have the tragic loss to contend with. But some significant traumas seemed to be the final triggers to my symptoms and consequent diagnosis. I am also a nurse and knew what the diagnosis was going to be. But the sudden realisation that you have a chronic disease is hard to take and I found myself feeling lost. This forum has helped me. The key is to get support from those who know. Find out as much about the management of lupus as you can and take control. Pace yourself. Be selfish when you need to be. Talk it through with your husband. I bought my husband a book to help him understand and that seemed to help, but I still do most of the housework etc despite working full time! The hydroxychloroquine does help but it takes a few months. Exercise can be helpful. Just remember that everyone is here to share this journey with you x
Thank you so much for replying. I was worried sick, that I might have said too much. I hope your practice educates themselves on lupus and will then realise that, you can't set a date for hydroxy to kick in !!! As you know, this could be one of many drugs that you may need to take, to get better control of your lupus. Incidently, lupus is notorious for depression. I do hope you find a way through all this, but mostly, get the respect and consideration you deserve. Yes this is a good, safe, place, to let off steam now and then. There are some very helpful members, who give good advice. I wish you luck with it all, take care.
Hi Queenie, so sorry to hear that you lost your Dad. I lost my dad a year ago and was diagnosed with SLE in December. I genuinely beleive that the stress of that loss has a lot to do with it. One of my coping mechanisms is to ask myself what Dad would have said in any given situation, I usually cry my eyes out but I think it works for me. Hope you feel better soon xx
As a fellow health professional too, hi. Love and hugs - and you will, I promise, come through this. Even if it doesn't feel like it. I posted a similar post a few days ago and was overwhelmed by the lovely responses inc. lots of fellow health professionals. I think we have enough for a group in our own right.
I think we have to allow ourselves emotional car crashes - because I think it's a very very normal reaction to a life change.
I was diagnosed last November - and my manager is ok, though don't really understand it even though we like to think our colleagues should!
Hope you feel better soon, and be kind to yourself in the meantime. Please feel free to message me, we all need to support each other xxx
Hi Queenie70,
I am not surprised you are feeling numb. A lupus diagnosis is bad enough in itself without bereavement and other issues to deal with.
I would echo what the others have said, be kind to yourself, don't expect miracles and give yourself some breathing space to come to terms with the diagnosis and everything else.
As a fellow nurse I can only echo what seekingfreedom has said. I have recently returned to work after an 8 month absence with an auto immune disorder,( my illness is " complex " ) and found occupational health very helpful. Thankfully my manager and workmates were great as well.
I don't know if you have ever thought about psychological help, I have found it very useful. You can talk to a third party openly, honestly and without worrying about upsetting them.
Keep in touch, this forum is a great place for letting off steam and getting support. I am intrigued by the thought of a health professionals group!
Hello. It sounds like you have been through a lot! I think sometimes the initial diagnosis is a relief, as you think finally someone believes that there is something wrong with me, I will now be taken seriously and get some help. Then a few days down the line, it's more like oh my goodness I have a chronic conditions, how on earth am I going to live with this? HELP! The last 15/16 months have been awful for me too, I lost my much loved Grandpy, then my stepfather, just 18 days after his diagnosis of cancer, I had a hip operation, then got diagnosed with Lupus in November and lost my Dad to cancer in January this year, just 8 weeks after his diagnosis. As well as the Lupus I face further hip surgery on both sides as have very bad arthritis in both of my hips and the Consultant thinks I am iron and B12 deficient. I am waiting for numerous other blood and test results now. I too have 3 young children and work part-time. I think stress definitely has something to do with the onset of my symptoms. I was very depressed before my diagnosis and I have been on and off since. I think a lot of it is mentally accepting that this is the hand you have been dealt and that you cannot change anything. It's learning that you don't have the energy that you used too and accepting that sometimes you have to say No. You cannot do everything you did before. Live life at a slower pace. I am taking hydroxy and have been since November, so into 5 month of meds now and I am much better than I was. I still have a few symptoms and the tiredness is terrible. I get a little tearful at times, as it is all so overwhelming. Part of the problem also with a lupus diagnosis is having to explain it all to people, as I have found people know little or nothing about it, so there is virtually zero sympathy. People look at you and think, well she looks OK to me. Anyway, enough negative talk, I hope that things improve for you. I am sure they will. This site and Lupus UK are a fantastic support for me, so I hope you find that too. Good luck.
Thank you, kind words from all of you. It seems bereavement and stress seem to be linked to exacerbations of SLE. I am so sorry to hear you're stories, so similar to my own.
I had a good loud cry while the kids were out this morning. My husband listened to me rant and on the whole I feel a little better inspite of big red, puffy eyes. I have also ordered two books off amazon.
I have been thinking about what my Dad would say and do if he were here. First there would be a long cuddle and reassurances. Then he would give it a silly name and start cracking a few jokes. Pretty soon the mood would lift and he'd get us a drink. He called his altzheimers 'old timers'. In his shoes a diagnosis like that must have been devastating. He was so brave and didn't complain. I am going to try to be like him.
In my last job as an HIV specialist nurse I gave many HIV positive results over the years. The s***** thing those people had to deal with on top of an incurable disease is the stigma attached to HIV. Some people would leave the hospital and not confide in a single soul for fear of being ostracised by their community. Heart breaking quite frankly. At least I can turn to family and friends for support, even if my manager is being a pain in the elbow!
P.S. can anyone suggest the best thing to put on the butterfly rash? I have several dry red skin lesions that are not improving with emollients...or do I have to wait for the chloroquine to kick in?
Welcome to the site. I'm sorry to hear that you don't feel very supported following your diagnosis. If it would help, we have a free information pack that I could send you so that you can read more about lupus and also provide your work and husband with some information? If you'd like a pack, just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop one in the post.
If you need anything, please let me know and I'll do my best to help.
Aww Queenie this made me cry. I could have written this. I know exactly what you mean by dragging yourself to work. I don’t want to make this about me but I was exactly the same, I had low grade fever for weeks (while under great stress after taking a new, very responsible/stressful job - why did I do that to myself?) resulting in a seizure one day while at work. I drank that bottle of wine believe me (along side gaviscon 🤭) and I can honestly say, shot term, wine is a great stress reliever, but is not a good idea long term ( my, also cool, husband said drinking was for ‘looser’s 😠 ) Just you imagine that hug from your dear old Dad and feel his love, I am sure he would encourage you be strong and
perhaps have a glass of wine 😉 Sorry I can’t offer more constructive help as I also, after many years of neurological symptoms been diagnosed with SLE and I haven’t even seen a rheumatologist yet. I have an appointment in August by which time I might have gotten better by myself or be dead - joke! (not funny I hear you say) Consider yourself hugged by me x
Thank you for your kind words. I wrote this post about 4 years ago and haven't been on this site for a very long time. I read the whole thread from start to finish. It was good to look back to see how far I have come since then. So thank you for that!
I am sorry you have been having similar problems at work. My solution was to find another job! I continued to work there for 2 years and felt unhappy the whole time. I didn't feel supported and realised that I was never going to be 'forgiven' for being off sick even though my attendance over the next 2 years was 96%. I was pretty much sent to Coventry by my managers although my nurse colleagues could not have been sweeter, so I was sad to say goodbye to them. A friend told me about a job at her surgery so I took the plunge. I now work every other day and feel a lot happier. It is tough at times and some days I feel so exhausted I can barely get dinner on the table for the family after a day at work. I plod on though. I hope you find a solution to your problem. It isn't an easy one to fix. My advice is to find someone at work who you can talk to, look for the most supportive person, no matter what their role. It really helps to have a friend that you can talk to. My sanity was save by a junior nurse called Jan. She was was kind, she listened and made me laugh when the chips were down.
I now take methotrexate and hydroxychloroquine. I am also experimenting with cannabis oil for the nerve pain in my feet cause by sjorgrens syndrome. I have joined a facebook forum for SLE and another for sjorgrens. People share info and discuss their treatments. It is quite useful. Thats how I heard about the use of cannabis oil ( CBD oil) in it's legal form. (they sell it in Holland & Barret!!!)
I still miss my Dad. I thought about him all day yesterday as it was fathers day. I would still give my right arm to sit and chat with him for a hour or two and have a cuddle.
Good luck with the rheumatologist, I hope you find a good one. Where do you live?
Oh, and by the way, have a drink on me. I find wine does make me feel worse the next day but every so often I think sod it and open a bottle. I have found that drinks like gin and voldka make me less hungover. I only drink occasionally and only started drinking again last year. Daft I know, but it makes me feel normal again to be able to join in with my friends and family. I was fed up with feeling like a party pooper. Ignore silly remarks from your husband and do what you feel is right for you. You are the only one that knows and can learn by any mistakes. You need to feel your way with SLE.
Lol 4 years ago! 🙈 As a newbie to this forum I didn’t even notice the dates and feel a little foolish now - d’oh! Anyway thank you for pointing this out to me.
Thanks also for the good information re Facebook, will definitely check it out.
Glad you have found a job that suits you and also have someone to talk to who understands. I had an appointment with a Neurologist after having a seizure at work (was referred before I had tested positive for Double Stranded DNA) and he told me I had functional neurological symptoms but there was no way I was telling my boss this as I felt it would confirm to her that my symptoms are literally all in my head 🙄
I live in the north of Scotland and have to travel to Aberdeen for Rheumatologist appointment (two hour drive) I have no idea what to expect.
I also initially gave up alcohol as I was trying to do everything I could to help myself live a healthier lifestyle. And also like you I am now taking the odd drink. I too felt like party pooper. I know in my particular case too much wine makes my symptoms (particularly back pain) worse, in moderation gin & vodka don’t seem to have such a bad effect. So, if I feel I have had a particularly stressful day I will have a glass and I don’t care what my husband thinks 😉
Many thanks again Queenie70 for taking the time to reply and I hope all goes well for you in the future.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Wow... some feeling good days
Numb gums and loose teeth feeling! 
Chest pain
I'm new here, diagnosed a few days ago. Only 21 and need advice on how to carry on...
