I've often felt low over the years but the past few days have been awful. Think it's a combination of hormones and steroids. I actually started planning how I would end my life. Just can't face the future. What stops me is when I look at my kids it breaks my heart that they would be without a mum and I couldn't do that to them, but then there's no way out of this mess. Don't feel like I've got the resources in me to keep on fighting the depression and keep putting on my brave face. We haven't been able to plan a holiday this year as I'm too ill.. and I've got nothing to look forward to but more pain and bone crushing fatigue. I can't tell my husband how I'm feeling as I feel such a burden to him already. I feel I'm holding my family back from having fun and adventures and they'd be better off without me. Hoping that the steroids will help me get my life back, impatient for them to work now, all I'm getting is horrible side effects. I have one good day every now and then and I start hoping that I have turned the corner and I'll be starting to get better but the next day I'm back in bed and all my hopes are dashed to pieces. I've taken antidepressants before may be I need to speak to my GP. Sorry to post such doom and gloom but I could do with some support.
Rock bottom: I've often felt low over the years but... - LUPUS UK
Rock bottom
Hey Dryad, you are not alone! All of us out here know what it's like to get this low. IT WILL PASS!
But you have to talk to your Drs and TELL them how you are feeling and the sort of thoughts you are having. Steroids are known to cause such anguish at times so it could be you need your dose adapting or perhaps antidepressants could ease you over this horrible patch.
Keep telling yourself tomorrow is another day, one day at a time and when a good one turns up ...enjoy it! That's the day to tell your family how much you love and appreciate them cos that's a day you can say it with a smile!
Love and hugs, Beth
Thanks Beth, I really appreciate that. Will tell GP. Will take one day at a time.
hello dryad
im very sorry to read you feel so low and being in lots of pain, its so tough trying to put on a brave face for the kids i have to most days too.
if its any help you are so not alone i too have have a dreadful uncertain depressing week with lots of tears and yesterday i couldnt get out of bed after dropping my daughter off at school i went home and sobbed in bed for 4 hours. i also woke yesterday thinking i can t cope anymore and its frightening how easy those thoughts come.
my doc gave me anti depress tablets 2 weeks ago but i just can t find the courage to take them as i also don t want to become a zombie every day.
he has suggested counciling which on my next visit i think i will take him up on that offer.
to add insult to injury i have also been finding small nodules under my skin and some are painful and making me feel sore i just feel like shouting WHAT NOW.
take care we are always here to listen.
debs
xx
Painful small nodules under skin ? shingles ?? Best to consult with your doctor asap.
Feeling 'lupus' low is a psychological symptom that may have a physiological source. Remember lupus has neurological effects too.
Best to try to take the medication - it will not alter you personality but it will rebalance your out of balance biochemistry. There is always the option if you do not like the results consult with your doctor about alternative Rxs.
Think of your functioning brain as a bus terminal. Normally buses arrive and depart without issue (synapses are the terminals / synaptic gaps the roads / biochemical transmitters are the buses). But now ... in your non coping frustrated brain ... all of the terminals are cluttered with buses, departures have not occurred and arrivals have no where to arrive. The antidepressant medication tells the cluttered stalled buses to shove off and opens up the terminals for the regular arrivals/departures routine.
It would be wise to take up the offer of pro psyche help. Coping skills can be taught / learned. You can learn to adapt.
If you refuse to take the doctor advised prescribed antidepressant medication - when you feel low eat turkey and move about as much as your mobility allows. Get your serotonin levels up. Sing. Get your oxygen to your brain to your body. Breathe in the good and breathe out the bad. You can do it. Yes it is a bother and a half to ask for help and assistance, but it is what your require at this tough time. Your family needs you, loves you, and you deserve relief.
Be well. Feel better soon. Positive thoughts to you.
thankyou so much nouska
your words of encouragement are priceless, i think you are so right and thats why i love this lupus uk site so that people like you are there to pick us up when we feel down,i just love your advice and have read and re-read everything you have said and have made my first positive decision this week and its to deal with my health anxieties and the first step is back to docs monday.
my painful nodules do worry me so i know i need to see my dermotoligist which i can sort out an appointment next week my doc has said they are just fatty lumps but im not fat at all and they get sore,it just sometimes feels that you can have everything at once and its hard to find the strength to deal with it all.
so thankyou for your kind words
debs
xx
If the fatty lumps (aka LIPOMAS - if that is indeed what they are) are painful / sore it could be a sign of infection. Being that you have lupus ... infection is always a concern.
The Dermatologist in consult with your Rheumatologist should be able to sort this out for you.
It is not something to ignore. Take care.
Nouska - I just LOVE your answers! This one about the bus terminal is the best description about how nerve synapses work that |I have ever read.....
I've got a theory (backed up by some research done in America) that one of the reasons for the "Brain Fog" that many of us experience on waking, after several hours asleep - that the brain is "starved" of the optimum amount of oxygen it needs to function normally (or maybe some other chemical that stops being produced while we are asleep) - and this needs some time to build up, as we move about and the circulation is activated. My husband has sleep apnoea and has a ventilator overnight. When he wakes up - he's functioning on all cylinders straight away....I'm quite envious about that!
One of my coping skills to beat off depression is NOT to stay in bed (unless I'm unable to move at all) and to open as many windows as possible - if weather permits this. Music also helps - someone suggested singing (this is a great blues buster!) Massage is another one...assuming some kind person is around to oblige......!!!
Big supportive hug to you Dryad. Dryads are nymphs of oaks trees correct? Be the oak. Stand solid rooting yourself with those you love and those who love you. Communicate with your closest (your husband who loves you much) and consult with your doctor/s.
There are options. There are always options. This negativity could be partly due to a pharmaceutical side effect. It could also be neurological symptoms and or psychological symptoms that requires attention assistance.
There is far too much to look forward to in your life - your children growing, going out on their own, careers, having their own families, grandchildren... You have so much to give - self evident here on LupusUK. Where will we get our fab recipes?
Please Dryad please reach out to others and ask for more help. Grand adventures can wait. Have an at home adventure. Use imagination and play pretend games - we're at the beach, we're in the mountains, ... Use the internet or books or music or international cuisine (I know you have an interest in foods) to open up your world and your children's world. It is not about what you can or can not do ... it is about what you do with the time you are given.
Remember life is not a sprint it is a marathon. Run like an oak (cm by cm). Take it easy and slow. Day by day ... you will improve (remember this is a relapse remit disease) and your doctor/s will help find better solutions.
Medical breakthroughs are made daily. The mystery to lupus is on the cusp just around the corner. Hope remains alive Dryad for you for all of us.
Positive thoughts to you. May you find a good path to survive and thrive. You can do it Dryad.
Hi Dryad,
I was thinking that you had not posted for a few days and was wondering how you were getting on with the steroids. I hope you are able to visit your GP and tell him how you are really feeling. I know we have mentioned it before on here but the Samaritans are really good. It is more worrying that you are not just feeling depressed but also that you have been planning. This is always a worry and I hope you are able to seek help asp. Please do not feel a failure in any way as 1 in 3 people have depression so you are not alone. It seems we are able to ask for help if we break a leg but somehow we all try to hide depression/emotional illnesses as if it some kind of stigma - IT ISN;T.
Please look after yourself and be kind you YOU. This is all caused by your meds and illness so please keep us posted. I'm wishing you all the strength in the world. Marion xx
Hi Dryad
I am so sorry to hear you are having such a low and bad time. I totally understand and have been there. Please make an appointment to go and see your GP and say how you are feeling. I know when you feel as you are you don't even feel like going out. Meanwhile do everything that normally lifts your spirits. Try music on, candles or anything that may make you feel better. As we all know we feel like this with lupus and in addition the steroids make you feel awful (this alone you should mention to your GP). I went to my GP not feeling low the other day but as as I sat in the waiting room started crying. (I do not know why) Like you I am on steroids. You are not alone.
You have to look at your children and regardless of our health they need us. Please keep posting your lovely recipes. Let us know how you are tomorrow. We all understand. Sending you hugs xx
Thank you all so much for your comments - I feel so supported by you and that makes so much of a difference! I don't feel alone with these horrible thoughts. I am going to phone the GP on Monday morning and get an appointment, I have started to feel less desperate and I think I'm starting to believe I can get through this .. with help. I managed to get out for a little walk in the woods today in-between the showers so that helped. Thanks again x
Hi Dryad, You WILL get througn this, but it will take time and lots of slog, which is not easy feeling the way you do. It is normal to feel horribly low with a diagnosis such as lupus, and seeing your dr and talking to others can only help. You would not be burdening your husband by speaking to him, it would probably make him feel useful to hear you cry and rant and then hug you. My husband is the least demonstrable man in the world, and sometimes I am terrified I will frighten him away by admitting the awful things I want to do to myself, but he always seems to understands and hugs me.
You are loved and you will get there. Ease up on yourself, ask for help when you need it and give those you love a hug because I bet they wanna hug you loads too xxx
Hi Dryad, From rock bottom the only way is up ! if not one day at a time, one hour at at a time, keep thinking of your kids, and they will give you the strength that you need to climb back up. See GP and talk to them, We're all here to share doom gloom and the happier times, sending cyber hugs xx
Hi Dryad. I agree with the above. DON'T give up. We can all get to a point where we want to give up. I've been like that myself the past few weeks but I've now turned a corner and I'm on the way up. With help from my GP, friends and family I've started to live again. Take one day at a time and enjoy every minute with your children cause they soon grow up. Go talk to your GP or consultant and don't be afraid to ask for help. I do hope you feel better soon xx
Hi Dryad,
It's been a few hours now since you share with us your feelings. I was asked by a consultant who had some medical students with him for them to tell try and diagnosed my illness by asking me the revalent questions but he said to me after they had finished, did I also suffer from depression. I don't even though the lupus is attacking the blood vessels of my brain.
If you haven't got a social worker you can request one and they might be able to send help for you and your children especially now the school holidays are coming up. If there is a local college who teaches child care the students will need a placement to practise and you could ask for one to come and help entertain the children for or with you. The social worker might be able to organise for the children to be picked up to take them to the holiday clubs (local churches will help if you ask even if you do not attend) in your area if there are any.
Don't be afraid to ask your friends for help even if it is to go the park with you and your children, they can run or do the physical things with the children for you.
Please ask for help from your doctor and all friends and even acquaintances.
May God continue to bless you with peace, stenght and a long and fruitful life.
Lots of love xox
that sounds just like me but give the steriods chance to do there stuff .go back to your gp talk to them ask about pain management and about your pain meds .main thing is dont give up i almost did once and im glad i didnt .plan that holiday give yourself something to look forward to you may have bad days while your away but you will have good too . take care chin up xxx
Hi, I think you are very brave and don't know how you do it, you are amazing. I have my grandsons for a few hours and I'm shattered. You are doing a very hard job under extreme difficulties, you should be given praise and admiration! I'm certain your children and husband love you very very much, you are very important to them, but also you are very important to you - you are being too hard on yourself, as all of this is not your fault.
I think you are fantastic, well done for being such a wonderful mum.
xx
I wish I'd turned on my laptop earlier today to find all your comments.. they made me cry.. it's so good to have your support. I hit rock bottom again earlier. I was hoping to go swimming with my husband and a friend/neighbour, but when she arrived the steroids were just kicking in (like being hit by a bus) and I had to go back to bed. Then they went swimming without me!!
So I felt really abandoned angry and desperate, so I got the big packet of Zapain out and had it by my bed trying to decide whether to take the lot or just a few to knock myself out with.. but got scared with the force of the feelings I had so I did a sensible thing and rang the hospital and got an out of hours doctor to talk to. She was great. I was feeling like I'd run out of options but she helped me see that there were still options for treating the disease and that it was still early days and they hadn't got my drugs right for me yet. SHe advised I reduce the steroids to 7.5 tomorrow and I will be talking to the GP tomorrow about reducing down and other drug options. I need to plan little things that are nice to do with my family to give me some hope and some joy in life.
The twins are 13 and they are in bed sleeping after an all night sleepover party! Thanks for the advice about getting support during the hols, I used to get that (holiday club etc), but they are old enough now to take care of themselves a bit and I'll get friends to take them out too. Good to have a plan so I appreciate your help there in getting this plan together-otherwise they'll be on their i-pods for the whole time!
It's good to hear that things can get better, it's hard to see it right now but I am hanging in there!
Hi Dryad, I am so glad that you made that call to the hospital. Tomorrow is nearly here and you will get the help from your GP. You are so right to hang on in there. We are all rooting for you so that you can tell us how you over came these obstacles, this may also inspire many others on the site. Stay strong Love Marion xxx
I
Well done Dryad. Monday will be here soon. Help and better solutions are on the way. As you know every form of lupus is unique - your specific needs must be rooted out. Be open and honest with your doctor/s and treatment options specific for your needs will be found. Not all Rxs are appropriate for all patients. All at LupusUK are willing you forward holding your hand.
Be well soon.
Hi Dryad
I wanted to write something to make you feel better, but then I thought who am I to talk? Yes, I’ve been there, going from suicidal to murderous and back a million times a day. On top of the pain, self-loathing was like a giant claw, scratching relentlessly. I couldn’t take it anymore and gave up both the treatment and the doctors. So, really who am I to talk?
However I still wanted to make you feel better, so, follow this link and enjoy 
cartoonstock.com/fullsearch...
Ha ha! 
thanks it made me laugh!
So what treatment are you getting now if you have given up on the treatment and the doctors?? I'm intrigued.
Hi Dryad
I'm so glad you're feeling better!
I was left with my jaw hanging for hours after reading your posts about how the doctors dealt with your case. The first shock came when you mentioned that there was a doctor available for you to talk to, at out of office hours. However, what really blew me away was the fact that your GP acknowledged the side effects of the steroids and decided to get you off. Wow!
I went to the best, most renowned doctors there were in this filthy part of the world. They never told me what was wrong with me, they never said the word Lupus, until I read it on the discharge paper. I was sitting there, waiting for them to determine the diagnosis after reviewing the renal biopsy and one of them actually jumped for joy – they loved my case! They started me on the IV treatment (the steroid/immunosuppressant combo) WITHOUT ever warning me about the side effects. All they told me was that I should get on with it because it will make me feel better – albeit an upset stomach.
You don’t need me to tell you about the side-effects I experienced, yet on top of that, they caused me the worst allergic reaction I had ever suffered. After three days of trying to reach them on the phone, they suggested that it was probably psychological, that I was causing the allergy to myself. So I went online, found the factsheets of every poison that was in the IV mix and what do I see? The good doctors had me on aspirin to avoid blood clots, and aspirin combined with steroids is known to cause violent allergic reactions. When I told them, they denied it. Instead, they asked me to stop taking Plaquenil.
The second time they gave me too much steroids and the third time was a charm – I was experiencing most of the physiological and psychological side effects of the steroids. I asked for an alternative treatment. Not only they DENIED that steroids cause any side effects, they also called the resident psychologist and threatened to use force because I was apparently out of my mind causing harm to myself (allergies!!!) and thus no longer able to make decisions by myself.
Of course, I left them. I tried two more doctors – when I described my experience with previous ones, they told me that I had no right to talk badly about the best rheumatologists in the world (!), and there was nothing more they could do for me.
It’s been a year, I’m taking only Plaquenil, can’t say if I’m better or worse but my life has certainly improved. People are more kind and less demanding but most importantly, Lupus gave me the kick in butt I needed to sort out my life.
I’ll be coming to the UK in two months time to study, so finding a doctor there is number one priority.
So, is there an alternative to steroids? Are you off them for good?
Sorry for giving you a headache with such a long post. :-s
>:D<
Well my jaw is left hanging after reading your terrible experiences!!! Where in the world are you?? Is it in the third world/dark ages?? No wonder you are not taking any more chances!! At least in the UK the steroids come with a long medical leaflet telling you all about the known side effects so you know what's going on when you are going mental .. and we have an NHS that means we all get access to healthcare with certain protocols .. and sometimes you get lucky like me and my GP and consultant have treated me decently and like an intelligent human being. I'm so sorry that you have been through such bad treatment, incompetence and humiliation. You deserve so much better.
Thank you so much everyone, I made it to Monday! My husband took the day off and drive me to the GP and we got seen straight away THANK GOODNESS!! What a relief to get help. I think he used the words "unmitigated disaster" as I sat there shaking, sweating and wheezing in his chair ... I could barely talk so I handed him the list of side effects with the bits underlined that I was experiencing : "feeling depressed, including thinking about suicide, feeling high (mania) or moods that go up and down. Feeling anxious, having problems sleeping, difficulty in thinking or being confused, frightening thoughts, changing how you act, having feelings of being alone.." all of those. He said that he'd never seen someone with such extreme reaction to steroids before!! I didn't even get any relief from the lupus symptoms either!!
I'm taking 7.5mg today, 5 tomorrow, then 2.5 and then I'm off them by Thursday.. so I'm not out of the woods yet but there is light at the end of the tunnel. At least I'm not alone today.
Thank you everyone for your support, it's been a life-line.
Hi Dryad
I have wrote my will and the way i want my funeral, so many times because i have felt so empty and numb that nothing is worth it, but the next day arrives ....
It does get better with time, i read a reasearch article that says green is a good colour for depression. So with this is mind, i go into the country side to just wallow in the trees and grass and open spaces and all of nature. WOW what a difference it made.mother nature has a way of making you feel better. I know its not the panacea for everything but anyhing that helps is worth a try. good luck and sending hugs and healing vibes xxxx
Well written bodicea! Nice.
Photobiology and light therapy does have some proven value.
Examples:
The colour pink is used in prisons to calm prisoners down.
The colour green, as bodicea has experienced, is known to relive stress and help heal.
Mares have been treated with indoor light therapy for years to better control their estrous cycles.
Full spectrum lighting is used in the treatment of depression, seasonal affective disorder, stimulates the pineal gland, even lowers blood pressure with much success. For a quick fix : use full spectrum bulbs in the bathroom and every AM receive the benefits straight away.
Take care.
Thanks -yes I have noticed how wonderful being in a wood makes me feel, I'll try and get out this week - I am very lucky to live near to a small wood to it's not so difficult to get there even on a bad day. Nature therapy!
Hi Dryad - reading this "survival" thread has also been a lifeline to me...and like the others, I'm so glad that you made it to see the GP and reached out when in the PIT of despair.
Mother Nature really IS a miraculous healer......
When I woke up this morning - the pain level (all over) was around the range of 9/10 and the brain is utterly scrambled then....I couldn't even make it to the loo...
The window was open...and the only sound I could latch onto was a beautiful blackbird's song - we have lots of trees just at the back of the bungalow and I was able to concentrate on this, rather than the searing pain for a while, until my husband woke up and was able to give me some pain killers.
I am constantly amazed how parents on this Lupus site cope...I've not known the joy of seeing my children grow up - it's a long story (!) but Well Done to all of you.......
Here's wishing you a Good Day very soon!
Hi Nouska - would you happen to know where I might obtain a Full Spectrum light-box? (As a pensioner, I cannot afford anything too expensive). Symptoms do seem to be worse on the grey, wet, cold days.... and it sounds like this would be worth a try!
Hello Looby.
Prior to purchase gain approval from your doctor/s.
Light hypersensitivity can be problematic for patients with lupus.
Patients with glaucoma and or cataracts should have approval from their Opthamologist.
There are reasonably priced SAD Light Boxes available on amazon.co.uk
cost vary / some have free shipping
amazon.co.uk has lower prices than SAD.uk.com
Be certain it is medically certified, warrantied, and supplies more than 2,500 lux (lowest effective power).
Some medical insurance companies will cover the cost (or part of the cost) if light therapy is deemed medically necessary/beneficial by your doctor.
As a pensioner you might have benefits or discounts to products such as Light Boxes I am unaware of.
There is a correct way and an incorrect way to use Light Therapy.
For Further Information:
LIGHT THERAPY (how it is effectively applied / how it works):
patient.co.uk/health/Season...
There is a section specific to light therapy.
Best of luck. Take care.
Thanks very much for the link, Mouska.... I will check with my GP first. I often order from Amazon as the prices are so good.
When we are staying in the Med (wonderful light and fresh air...) - usually for a couple of weeks in the Winter months here, I really do feel much better...just wish we could afford to stay longer!
Apologies for typing slip.....must have my cats in mind!
The comment "Blackbird song is so beautiful" inspired me to post the following.
I know The Beatles meaning behind Blackbird was civil rights oriented but the lyrics ... the lyrics when an analogy is made to lupus - lupus = 'blackbird' ... a lovely interpretation indeed.
May all learn to fly and wait for the moment to arise.
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
Black bird singing in the dead of night
Take these sunken eyes and learn to see
all your life
you were only waiting for this moment to be free
Blackbird fly, Blackbird fly
Into the light of the dark black night.
Blackbird fly, Blackbird fly
Into the light of the dark black night.
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise,
You were only waiting for this moment to arise,
You were only waiting for this moment to arise.
by The Beatles / Blackbird / 1969
Thank you, that's really beautiful, I hadn't thought of it like that, my son has learned to play it on the guitar, now I have the words I will see if he'll let me sing along with him! I'm feeling really weepy -still adjusting to being weaned off the steroids- so hopefully I can sing without crying!!
Wow. What a coincidence your son plays Blackbird on his guitar!?! Kismet.
I like your plan to sing with your son.
If a few tears fall, or even an ocean of tears, no matter. Let it go. Let it be. Release the negative and breathe in the positive.
Link: youtube.com/watch?v=AgGUfNo...
Sungha Jung (South Korean born 1996) playing Blackbird - with comments from Paul.
(for those of you who can't open the link)
Paul McCartney : Nice.
Sungha : Thanks.
Paul McCartney : Now sing.
Sungha : *Poker face*
Gifts a smile every time. Thank you Sungha and Paul. Both are inspirations to us all.
Wow what an amazing kid! He plays so naturally. Thanks for sharing xxx
SOooooo glad you're on a happier level Dryad :0), I've sufferered depression etc (lost count of mt suicidal attempts, never ming thoughts & have loads of bits of paper with 'funeral songs' etc on) since at least the age of 8 years old (i'm 40 yrs old now!) & now I know what causes it, I get though it. Just hang in there, with the knowledge that you will feel better, 1 day at a time, roll with the punches & keep getting back up! :0) (there's always an 'up' after a 'down' ;0). Nature can & DOES cure :0) Healing thoughts & hugs.
Nouska, I love your words & thoughts & am on a very similar wavelength :0), I use healthy eating, drinking, exercise, meditation, nature, colour therapy etc etc etc. It's fabulous that you're another believer in alternative therapies :0).
6 words for you all................'The PH Miracle' by Dr Robert Young ;0) best of luck & you're NEVER EVER alone! May the force be with you :0)
Thank you Smiler1 .. may the force be with you too!
You're welcome Dryad :0). I hope that you're seeing/seen some light since 'rock bottom'? (when i feel that way, I know for sure that there's only 1 way to go from there....& that's up :0).
Thank you :0).
Don't forget, there's ALWAYS support, ears to bend, shoulders to lean on ;0)
HELP PLEASE???
Can't figure out why my skin feels like it's burning.
Another pointless appointment...
Just been diagnosed 
On the bottom 
