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I’ve been in bed sleeping since Tuesdaday lunchtime. I’d spent the morning feeling good, doing non-demanding housework and food prep when suddenly, Bang! Felt likeI was hit by a sheet of iron. Total fatigue. I was just about able to chuck the chicken in the fridge and clean up that area. I stayed in bed without enough energy to even eat anything but a bowl of cereals . Yesterday I made myself get up and out for a couple of hours to the hairdresser but had to com straight home to lie down again.
Today I’m awake. I know I should cancel my Pilates class and Core and Stretch today as tomorrow I have a walk planned and my sister is coming to stay for a couple of days.
These are the sensible conclusions I have come to.
I cannot bear this life.
I want to scream and shout . I want to cry. I don’t want to be this person. This is not the real me.
I have no interest in continuing this life of pain and fatigue. I’ve told no one this as I don’t want to admit out loud to myself or anybody else that this is me. I also don’t want people feeling sorry for me. Nobody has any idea as I put on a brilliant front.
What is the point of me having alife like this.?
have no fear of dying, though maybe that’s easier to say when you’re not actually facing it.
I didn’t plan writing this. Guess I needed to rant. I know there are people very much worse off than me. Im just coping less well.
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IsleofWight1
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I’m glad you ranted .. it’s much healthier than keeping dark thoughts in . Sadly fatigue and pain are probably the 2 biggest issues on this forum . There is no magic 🪄 wand .. trust me I’d be sending one over to you if there was .
With this illness (and prob other illnesses that cause extreme fatigue ) it’s sadly a case of pacing and saving energy for the things you absolutely HAVE to do .. ie wash and dress yourself, eat food , pay bills . If you get into a spoon 🥄 deficit by over doing it boy we pay for it . The fatigue hits us like a train 🚆 coming from nowhere . Also the body reacts with rashes , swollen lymph etc etc .
I can’t lie , it is depressing . I’m prob not even a 1/4 of person I was energy wise but it helps me so much to have this special group as I don’t feel so alone .
I’m sending you a hug and please please if you feel like dark thoughts are overwhelming you POST again and/or ring Samaritans . You are unique and so precious don’t let this vile illness win
I do understand . You may get better more positive replies than mine but apart from going to Glastonbury Tor to track down a wizard 🧙♀️ with a wand and prob a lot of weed I never can think of any solutions .
Thank you for replying to let me know you’re ok xx
First take a hug. Then please hug me back. I totally empathise with you. Your words could be mine.
I'm pleased that you voiced your feelings, and know you're definitely not alone. That probably doesn't help, but knowing other people understand your feelings might.
I HIGHLY recommended screaming, shouting and crying. (Maybe choose the right location though, adding an arrest to your life is probably not a good idea!)
hi Isleofwight1 - this is what this forum is for - I’ve ranted on her a few times as have half the people on this special group.
The fatigue I think is one of the worst things we have to put up with, Ive I have a busy weekend seeing family etc on Monday I’m feeling done in and really pay for it. Have you any member of your family you could talk to or a close friend?
What I do to make me feel better is I’m grateful for my life even with pain as I think there are worse people off than me with someone that is blind- I couldn’t bare that.
You’ve done the best thing by sharing your feelings. I’ll admit here there has been a time when I thought “ this is enough “ and wished a one way to Switzerland was an option. I rang the Samaritans to get someone to admit it to because I didn’t want to let anyone else know.
Be angry: this is something to be angry about. A long time ago a friend said I must be experiencing grief for what I’ve lost. She was right.
I'm so sorry to hear how you feel, I can fully understand how you feel.
A couple of years ago I planned my suicide I was so low and couldn't except how my life had changed. I was grieving for the life I once had. I reached out for help which was very hard for me to do.
It helped to talk. I still have times when I hate my life and don't want to go on.
It's a very cruel condition.
This forum helps me understand that I'm not alone.
Please if you can reach out for help. You have taken the first step by posting your feelings on here.
It’s very understandable to feel completely fed up, sad, angry, and everything between, when you’re trying to manage chronic health issues and the impact that can have on your life. Though it can feel that way sometimes, you are absolutely not alone in this. You matter and your experiences matter. There is always going to be someone “better off” than you and someone “worse off” than you – that doesn’t mean that what you feel matters less, counts for less, or that you are coping less well – you are dealing with something difficult and it’s okay to reach out, rant, or get help with it. I have met lots of people who have been in a similar situation and, while they still have difficult days, are absolutely living good and fulfilling lives with and around lupus.
I know it can be challenging to reach out and talk to people or ask for help when you’re feeling this way, but I would urge you to do so. As you’ve mentioned, it can sometimes be difficult to talk to people you know about these things, so that’s where helplines and mental health services can be really great. Speaking to a stranger can be that tiny bit easier sometimes! There are lots of different ways you can talk or text with someone, depending on what would suit you best:
If you need to talk right now, these helplines are free and open at all times:
o Samaritans – 116 123 (UK-wide)
o A.L.L. – 0800 132 737 (Wales only)
If it’s hard to talk, you can also text SHOUT (UK-wide) on 85258 and have a text-based conversation with them.
If it is an emergency or you feel you may harm yourself, call 999 or go to A&E. Your mental health is just as important as your physical health and you are not wasting anyone’s time.
In the longer-term, speaking to your GP, specialist nurse, or rheumatologist, whoever you feel you can talk to, and ask about mental health services they can refer you to or what additional support they can give you. If you prefer not to talk to them, there is also the Wren Project that someone else mentioned, which is an emotional support service specifically for people with autoimmune conditions, and you can refer yourself without going through a doctor first. You can find them here: wrenproject.org/
As others have said, rant as much as you need. Reach out for support. You matter and you are not alone.
I don't know how long you've been living with lupus, but I'm in my eighth year (longer if you count the lack of diagnosis). What I've learned is:
- Medication does help, but it takes time to get the right combo.
- Your life isn't the one you had before. You have to make changes to accommodate lupus. Sometimes those changes feel really negative, like lots of losses, and sometimes they are gains, such as learning how to take better care of yourself (e.g. diet) and putting yourself first as often as you can.
- It can be boring being ill - being in bed all the time is no fun. But you have moments, days and maybe even weeks where you feel like you can live a relatively normal life.
- Bodies are resilient. They do heal. I'm not talking about the underlying disease, but some of the damage caused by uncontrolled lupus.
- You have to find things to do - work, leisure etc. that works with your disease.
- Your family and friends need to be absolutely clear and on board with the idea that things are different, and what your needs are now.
That's all I can think of right now. At the moment you feel hopeless. My point is that it won't always be like that. Take care of yourself xxx
You can self refer to local NHS mental health services - I found them really helpful last year. Also talk to your GP - antidepressants do help. Lupus is a really tough disease to manage - it’s painful, exhausting and unpredictable. After 14 years, I think it’s easier to work on staying calm with it than let it get you stressed and unhappy. Gentle exercise, not rushing around and talking to good friends will help.
Sorry you are struggling IOW. Sometimes it doesn't always pay to put on a front, a brave face or say "I'm fine". We often complain people don't understand us, how we feel or what we endure but they never will if we don't open up and tell them. It's nothing to be ashamed of. It took me a long time to accept I can only cope with one thing at a time but it is what it is I'm stuck with it so I may as well find easier ways to work with it then use my precious spoons fighting it. Don't be afraid to accept help from your gp depression is a chronic illness nemesis unfortunately. Many of us are years down the line from where you are now for me it's 10 yrs but we are still standing,still here to give support,advice and virtual hugs. You will find your coping strategies like we have but it takes time. Big hug 🫂 xx
One thing I've found. Good times can follow the down days.
In fact the good days become more brilliant, and bad days we understand more.
I found good friends adapt too, and the future is always holding what we treasure.
Life is a bit like a walk and sometimes the ground is a bit more rough and challenging, but we find ways through finding where to step.
I think you will. You seem naturely an adventurer. Look after yourself, rest up, eat the right foods, and things can be very different day to day, week to week.
It is different to other illnesses in that things are in flux back and forth and sometimes symptoms are less and things are much more normal.
Getting the right treatment is key, so let your rheumy know what you are going through. They then may change treatment plan a bit too.
Thanks again. I reread this thread last night and I wanted to cry. . I am not a soft ‘soppy’ person, so your replies have have really touched me deeply., I am so sorry that you recognise my thoughts and feelings.p, but your empathy means so much.
My sister is coming to stay for a couple of days . I’ve been indoors all week so hoping I’ve got some energy stored now. Hoping to go to the Scarecrow Festival and/or the Sea Shanty Festival.
Sorry you were feeling so bad , but glad that your thoughts have returned to feeling more positive. We all feel like this sometimes , but these feelings do pass and each time we get back on the horse we get stronger in ourselves and the lies get easier.Glad you will have some support from your sister and I hope you have some energy.
If not , as you are going to a scarecrow festival you're going to an ideal event where you can get away with not brushing your hair and wearing a hat.....and you could even get your sister to push you around in a wheelbarrow!😆😆😆
Joking aside , looks like it will be a warm weekend , so just remember not to do too much , get in the shade in the middle of the day , and have plenty of sit down rests as you go, hopefully you will be alright.
I’m so sorry you feel like this x I can totally empathise as I’ve been in bed since Monday following a Covid jab. The slightest thing can knock us for six. But your sister’s visit will help. Let her know how you fell- don’t put on the usual mask! It will pass and there will be good days.
Think of something to be grateful for and keep on thinking of that.
I hope you feel much better soon x sending love and gentle hugs ❤️
Dear isleofwight1- I hear you, I totally empathise. You’re not alone in going through this, nor these thoughts. Please know this, and I hope it helps. Friends, nor anyone not having this type of vile life sentence, cannot and clearly no not understand (in my experience) - and they’re the lucky ones. Especially those with no family nor partner, and even then, because try as they might, they cannot understand either. So sorry, but we are always here. We understand. We have to take it day by day, well, hour by hour… but always reach out… to this site, or maybe the Lupus uk helpline.. or Samaritans.. Do you have a lupus group near you? Or one you can call when times are so bad? Be great if you did. And there is always ice cream - and cups of tea! Hugs to you, keep talking.,, D
Desr IOW I cried reading your post because I can identify so much with what you wrote. Lije you I had done to the conclusion that a one way ticket to Dignitas was my only option. I was not even depressed just worn out and nit getting anything from my life. I was saving up and went as far as filling in the contact form but I never sent it.
Everyone here understands how you feel. It is soul destroying at times the sheer relentlessness of autoimmune conditions blights our lives. This community of wonderful, caring, humorous people have been a real life saver for me and of course my wonderful dogs.
I sincerely hope that this weekend you can get sone fresh air out in the wheelchair. I recommend the amazing tomatoes and garlic on your beautiful island. Eat something wonderful, laugh at something hilarious and smile at rye sheer beauty around you. If you can do as others have advised here and get some help or talking therapy or confide in someone close please do. It dies really help. Hugs help too or Cwtches as we call them in Wales. I send you these across the screen and hope that today you find some joy xxx
I hope your weekend with you sister goes well, the good days help us through the bad and as everyone else has already said living with lupus is a tough challenge. Forums like this really help us through the tough times as everyone here understands exactly how you feel xx
this is totally NOT what the rheumatologist ordered but l have a nice glass of wine. My liver functions are obviously tested atleast twice a year in the battery of tests. And quite frankly Lupus could have serious issues at any time so now lm nearly 62 l don’t worry about it.
Again not all the time or in excess: it just helps me.
Oh IOW I hope you are managing to have a good weekend. My old GP ,sadly retired now once said, you can't put Lupus in a box like say diabetes or asthma . It's your disease and its like no one's else's. How true is that. We all have different symptoms on different days, totally unpredictable . I can't believe I had such a reaction to the latest Covid jab, never had before ( 8 times) . Internal in my case, bowel and lungs , but also feeling soo tired. .
Then the depression sets in because you feel you are never going to be able to get out and about again. You feel you are letting people down , try to explain , then they say, what's that when you mention Lupus. I hate that I've missed so many days out, sometimes when I could have gone but brain says dont risk it.
Then suddenly I realise I'm feeling 100% better than I was 2 days ago, that's not saying much !
However, I am grateful that I do get good days and have good friends locally who understand.
Again I hope you are managing to enjoy your weekend , weather is great so far . I love the IOW , used to live just over the water. Don't forget you can talk to us lot anytime and as others have said, there is a lot of professional help out there.🙏❤️
My heart made me respond, as one who like all of us here, tug at the heartstrings and together we play a symphony of understanding, and a harmony, of love and support. Storm sends his blessings, and the peace that surpasses all understanding to you. Just a moment to smile . Keep trying as he does.....
Completely understandable! Life with Lupus is very hard, unfortunately fatigue and pain as Tiggywoos mentioned the two most difficult to deal with.
My daughter has just turned 23 and has been living with lupus for over 3 years. It has been very hard for her. She regularly remarks on how she doesn't recognise herself or doesn't know who she is anymore. And also unfortunately at times is struggling with depression and thoughts about not being able to continue.
It has helped her a lot to talk to a psychologist specialised in (amongst others )chronic disease and how to deal with that.
We have also found that it is very important to talk to your near ones and friends about how you are feeling. It is helpful to know that you are not having a good day/week (s) and what it is that you are feeling. Be honest. I recognise that you do not want to burden others with it (as my daughter doesn't like to) but it helps with understanding and also you will find sympathy and a listening ear does wonders for your spirits.
Unfortunately for now you will have to learn to pace your energy and not go overboard, it will only make things worse. Don't try to be brave or deny you have this illness, again this will make things worse.
And always keep hope, my daughter is fortunate in that she is seeing the doctors at the London Bridge hospital who are always trying to make her feel a little better/more comfortable and there is lots going on research wise.
That’s a lot to cope with at a young age.I don’t know how I would have coped . I understand how depressing it must be for her. She’s very fortunate to have you and a good medical team. I hope she manages to find her way and to have a fulfilled, happy life which seems entirely possible armed with all the knowledge from these posts.
It must be so hard for you too, as her mother. I hope you have support too?
Please don't think you are alone in this struggle. All of us on this forum know exactly how you feel. This condition takes the person you were into someone you don't want to be. Please remember we are all here to share your thoughts with. Take care and lots of hugs 🤗 and love 💕 xx
I totally resonate with how you’re feeling, this life is both physically and emotionally exhausting! Please do rant, we all need to do that at least once in a while—some of us daily ☺️
It can be very discouraging when things don’t seem to be getting any better. But they probably will. It may take weeks or months but most things will improve if we give them enough time.
In the meantime, we’re here for you. Hugs, self-care, chocolate, rest, self-kindness—may all these things gently enter your days.
Totally identify with your sense of utter misery - I don't have the same AI disease, but those 'hit the wall' shocks have been slamming me down since my early thirties. What others have said about 'pacing' is absolutely accurate. Whilst you sound like someone who really loves to live life to full capacity, you will crash if you don't give yourself 'buffer days'...EVEN if you aren't really tired. I used to, (and still occasionally do) cram the diary so I had to have all systems going all the time. You can't do that. But try to shift arrangements along a little, so you never have that annihilating sense of 'failure' when you crash; you'll still have a really full life but one you can see through. Also, might be an idea to ask your GP for a recommendation for an organisation that offers a listening ear to people in your position, so you feel that there are many who understand exactly what you're going through. Stay safe..xxx
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Is there a point of life anymore?
I would like to know if anyone receives any benefits because they cannot work due to their lupus. I find it hard to get up on a morning, 
Lupus life insurance is it possible!
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