The darker side of lupus #4

For me....... not being a morning person anymore..... why, I can here you ask....

My Lupus is a slow riser....

I used to be up at 5am, walk the dog, sort the lunches for ex hubby and daughter, breakfast, put washing on, you know, all the usual things people do before lupus strikes.

Now, depending on the previous night, where or if I have slept, my pain level or if I can even move, it can take me until lunchtime before I am ready to begin to face my day and thats not including the days when the lupus fog settles for the day and a duvet day is needed........

I miss seeing the sun rise after a decent nights sleep, rather than feeling omg another day has slipped by.

I miss walking my dog on the beach in the morning light - beaches are not made for wheelchairs or even sticks for that matter.

I miss the best part of the day, when the world is calm before the storm of the days activities.

I miss the feeling of joy in greeting a new day because my body is racked with pain and all I want to do is cry and hide.

I miss knowing that i can do a full days work and still have time left in my day for fun.

I miss working

I miss that amazing feeling of achievement for something other than getting dressed.

I miss not being able to drive at 4 or 5 in the morning to see the aftermath of a big storm upon the beaches in Falmouth

Mornings for me no longet exsist in the happy way I was used to. It has taken me a very long time to accept this and even now I struggle with losing the hours of 6/7am to midday.

I have learnt to be productive in other ways, my exercises, meditation, writing, e baying, routine etc but I still find myself in tears on some of those mornings. Not because if the pain but because sometimes I cant forgive lupus for taking my mornings, for what else it has taken and what it is still taking.

No one can be positive all the time. I cant forgive myself all the time for what lupus has done to me and my family. If one more person says to me, there are people worse off, I think I will possibly shoot them...... I know that, it doesn't make it easier.

Mornings can break or make my day. I used to love mornings, I dont anymore.

Thats the darker side of lupus.

Approch each day with a smile and it will smile back - the saying of someone who does not have lupus.

20 Replies

  • Hi, I hope you writing this post has helped you to know that all the losses you have described relate to the life you lived before Lupus was active.

    Has writing this post been therapeutic & helped you identify the way you feel? Writing is therapeutic to me & helps me identify how I'm feeling in that moment. I love to write poetry as well anywhere that I feel like.

    I can totally relate to your post. In the last 5yrs, I had a lot of ill health & now live with 9 health conditions. I don't know what my body is capable of. I don't get depressed but was having a lot of odd days. Then I realised that I have more anxiety & fear due to health trauma. Like you, I was grieving for the active life I had before as I'm out of touch with myself. After ill health, I go thru a healing process not just physically but mentally.

    To be able to move forward, I've had to forgive myself for not respecting my body (having an over active stressful life), understand my mind, body & spirit, change/improve my lifestyle & accept that I can't do what I used but I'm going to learn new things & have new experiences. We can't give up so it's better to accept & adapt.

    It doesn't matter what others think of you, it's what you think of yourself that matters the most. I pray you find peace & adapt to your current self so you can be thankful for the present, start to look forward to the future & feel blessed that you had those wonderful experiences in the past. Sometimes it's difficult to let go of something truly loved. I hope you find new things to satisfy you not to replace the old but to add to your life.

    You are not alone. Your feelings are valid & I know mine are now cos' Im not the only one experiencing it & I'm the one going thru it.

    Be kind to yourself x

  • Thank you.

    I write the posts because 20 years of lupus allows me now, to see both the funny side of lupus and the dark side of such a complicated, manipulative and frustrating illness.

    I have never been one for sharing but something in me changed and after many many years, it was time to share my experiences, feelings and emotions.

    I am happy with me and have been for a while, i just wanted to put into words what others may not be able to. Writing helps me with the continual healing of my own soul.

    I am no longer angry, bitter or resentful, well only some of the time, bad days mostly.. lol...... but allow myself the luxury of expressing in words, my past and present emotions, feelings and experiences.

    I enjoy the good, rest on the bad and laugh at the funny side of lupus but i also now take the time to acknowledge the feelings that lupus stirs, sometimes every day and I thank the universe that I am strong enough to admit that lupus ruined, changed and bettered my life all at once.

    May your thoughts, emotions feelings and writings, enable you to view the things around you from all perspectives.

    Please, if you are willing, share a poem or two - i am very jealous, that is a gift I definately do not have.

    With love. X

  • Hi,

    I know exactly where your coming from. I used to love my job and love the adrenaline rush of a real busy day where at the end of it you can sit back and think, yeah I did a good job there I enjoyed that so much.

    But then I started to suffer with my pelvic pain which made me start to have time of sick, which lead to my depression, then my lovely job became a problem as I couldn't cope with the demands that it made of me. My boss didn't understand why my sickness was taking over my job which then lead to me self harming to prove to them that I was ill.

    It didn't help with all my operations and examinations coming back normal and clear all the time. Until I was then getting more aches and pains and 10 years later diagnosed with Lupus.

    Now I'm 44 living back home with my mum and now not working at all, no relationship as he couldn't cope with my illnesses either. Now I'm like you I get up at 6am to take my medication and have breakfast, but I have to go back to bed as I'm still so tired, but then don't get up till 10-10:30 am when half the day is gone to do anything. So I leave my bed to lie on the sofa instead for the rest of the day. Wow what a life I now lead.

    Now I just constantly think what will happen to me when anything happens to my mum as I can't afford my own place, or bills etc. So I'm just terrified and get upset like I am now while writing this. And it's all because of this God damn thing we suffer with that's ruined our present and future.


  • Hi Georgie63,

    I'm really sorry to hear that you're struggling at the moment and that you were struggling at work. How long have you been out of work now?

    We actually have a booklet that might be able to help you. The booklet is called 'I Want to Work: A Self-Help Guide for People with Lupus.' There's a number of sections towards the end (pages 23-24) that might be helpful for you. You can find the booklet here:

    It also might be worth making an appointment with the local Citizens Advice Bureau and asking if they have any recommendations for your situation.


  • I think that is so beautifully written and I feel you are writing about me !! I so understand where you coming from life as we know it will never be the same and I too struggle to adjust and feel that get up and go we had is gone for good !! Sending hugs your way xx

  • Oh Mandy every darn time you do this to me and the tears start to flow, how you can say to magSLE that you don't have a gift, you are one person I look out for every day and I really think your should consider putting all of the "funny side of Lupus" and the "Dark side of Lupus" into a book and send it off to publishers.

    What a great book, you, Twitchytoes with her drawings and now we have magSLE and maybe some poetry to enjoy. Wish I knew an editor.

    Love you girl, take care noonoox

  • Bless you, noonoo. X

  • Hi I don't often come lupus site although I have now been told I have lupus anti body's now , I have sjorgrens, fibro , Gilbert's , raynaulds, neuropathy pain , chronic fatigue, divererticulitus, I can not obsorbed nutrition from the food I eat , I have alopicia ,

    I have a unstable bladder so am being taught to self catharsise! , insomnia,fatty liver and of course I am forgetful ,they also say I have depression and as my GP says who wouldn't with what's happened to me ,I have difficulty walking ,and things I have probably forgotten to mention.

    I am taking hydrochoquinne, dulexatine, gabapentin, co codamol , nitrazepram ,folic acid , vit d , magnizium, milkthistle, all these things are taken daily !

    I used to walk dogs ! Hence my name , I used to fly sports kites para gilders , power foils , carting kites , ride bike 10 miles as often as possible , Hyde , work 38 hour week

    And was out 5/6 nights a week , now it's maybe 5/6 a year ! I am the mother of three and used to call me super mum or Wonder Woman !

    I miss my life ! The one I had !

    I have done a pain and fatigue clinic which has helped with exceptance, pacing , asking for help ! It didn't help with me missing my old life ! It didn't help with being made to feel like a beggar while trying to clame pip , the first time ! The second time there was now doubt I should have it awarded I doubt I will ever recover from my first clame ,

    I can no longer work , I lost my job ! My children now take care of me , don't ask about the ex husband, the eldest has relocated to try and help me stablize !

    I went to Drs because after my last rumatolagihst appointment he said that most of my issues were down to fibro , they decided I need counciling for depression as I was crying as I had chronic constipation, and it was not my regular GP , I was sent along to counciling and it turned out my new councillor has all the same as me ! With diagnosis! I am the first person she has met with these health concerns, so she's told me I am not depressed in fact I am handling my self better than she is , so we are going to start up a support group for mid Wales ! And she has joined HU , as I have told her how much help and support I have found on HU , I spend most of my time on HU on the fibro site as they make me laugh ! On there , they know that I am more lupus than fibro but there fun !

    I read the weekly what's happening on HU and have come across your posts today

    And think there brill ! I felt so much empathy with your post , I have lost nearly all my friends where I live as I can't walk , cycle , go to the pub , go dancing , I have a dog walker , I lost some friends because I now m getting a mobility car , an automatic and I am being giving a bungalow as I live on a hill and have been told it's dangerous for me where I live ! Again said ex friends are cross as apparently I am jumping the que , the fact I loved to be healthy and well and out and about , people have no idea what these conditions do to us , and the weight gain in my case has been horrendous, did you know that if your vit d levels get low you put weight on as you can't break fats !

    I am hoping as my hair is now starting to come back I may now start to lose some weight !

    I would again like to thank for your post as it made me want to post to you !

    Good luck with your health issues

    Gentle hugs

    Shadow xx

  • Hi Shadows-Walker,

    Welcome to the community! I'm sorry to hear that you're unable to do most of what you used to but I'm glad that you've found someone close by to confide in.

    We've got a free information pack about lupus, if you're interested. You can request or download one from


  • It's ok George I have had the info pack from other admin on here I have been a member of this forum for 2 years I believe , but because at the time not having a definite diagnosis of lupus full blown really felt like I didn't belong on this site although deep down like many new I did have lupus ! It's just a hard rd to travel !

    Thank you for your reply


    Ps you may see a bit more from me as I am now following this lady !

  • Okay, I thought you might have had it already but I didn't want it to go un-offered! Please feel free to be a part of this community as much as you'd like. We have people at various stages of diagnosis here and we're always happy to hear more people's experiences.


  • Dearest Shadow. Thank you for you kind words, honesty and bravery to put into words your thoughts, fears, feelings and issues.

    I am honoured that you find my posts helpful and hope that you can find empathy and sympathy within my words.

    I am not one for giving advice, I just like to write what I feel, wether its funny or dark and hope people can relate to each snippit.

    Please do talk to the amazing people here, many who are so much more qualified than myself, for help, advice or just a rant.... you will always find people who care.

    I am sending you love, hugs, strength and universal health and happiness to help you through today, tomorrow and days to come.

    Much love. X

  • Hi Shadows-walker, love your name, welcome to the Lupus forum, if you stay with us you will find as I did many people that are happy to share their experiences with you. If you want to vent just as I did the other day then just vent we are all happy to listen. You will find some very interesting people to chat to and some are extremely knowledgable due to life experiences with the diseases that they endure every day and some have for decades.

    I have not been through anywhere near as much as some but I can tell you I think this forum saved my life.

    Nice to find yet another dog lover, a few of us have dogs and we do bring them into the conversation with one thing very much in common we wish we could walk them. I am lucky that my husband loves her as much as I do and she still goes out am and pm and down the fields which she loves. I hope the PLAQUENIL that I have just changed over to will get me back to excersising her again.

    Take care Nx

  • Hi initially hydrochoquinne or plaquinel did give me more energy but unfortunately I overdid it , and burned myself out , so word of warning remember to pace 😊


    Chris x

  • I understand your pain, both mental and physical! You described me and my life to a T!!! I too used to be a morning person and so busy that I never had a moment to myself to think let alone enjoy life! So much has been taken for granted in my life and regrets always have a way of attaching themselves to me like a leach sucking what's left of my life out of me!! I can chose to ponder on my past and how easy things seemed to be back then and sit myself up for my own special pity party for the day or I can thank God that I have been blessed with another day to live and experience life in whatever means that may be! I Thank God everyday for the experiences I have been given in my past but I must live in the here and now and continue to make memories with my children and grandchildren even if it's on a much smaller scale! Lupus has a way of making you focus more intensely on the smaller, but oh so very important details of our daily lives! You may not have a choice that Lupus has chosen You, but you do have a choice not to choose it!! Choose to Live and find meaning in your life now, today!! You have a purpose and reason why God has put you here!! That was not an accident!! Maybe it's just time to do something different for you!! God Bless You!! Thank You so much for sharing your Beautiful feelings with us!! It really touched my heart!! HUGS!

  • I feel like all day is wasted in waking myself up! miss being normal. doing everything..

  • Hi amandalilley

    I too can so relate to your post about losing mornings to lupus and have had to adapt my life because of the illness in the last 29 years of it. You grieve for your old life and then make a different one. It's tough but it can be done with help and support of doctors, family/friends and fellow forum users because it really does help to share things.

    I'm glad it's helped you to share. X

  • Hi I really know how you feel. My lupus didn't really kick in until after my inlaws caused so much trouble within our family it almost broke my marriage. None of which had anything to do with me. I too had ajob i loved was a nurse practitioner. I loved walking my dogs and my garden looked lovely because i couldn't wait till spring so i could plant beautiful flowers etc. I do sew now my husband bought me an all singing and dancing sewing machine that i love and i have taken up quilting . It's all straight lines and you don't have to use scissors. I still mourn the life i had and everytime i have a flare,end up in hospital and of course the constant pain, I focus my anger and frustrstion at my inlaws I hate my inlaws and don't talk to them anymore. I have to have brain MRI in 2 weeks, i am terrified. I know anger doesn't help but they are all living their lives and going on summer holidays abroad in the sun . I was always an outdoor person lupus has taken away a big part of the person i was and I can never forgive that. Sorry first time i've said all that. X

  • Thank you for being so strong as to share. I really can empathise how difficult it is to express true emotions to people you have never met.

    Not being one for councillors, I have found that writing my posts has been the best therapy ever.... and its free...... lol 😆

    I hope by replying to my post, it has given you the strength and determination, as well as hope, that moving forward to meet your needs and not that of everyone around you, will be a little easier.

    Sending you Lupie hugs for today, tomorrow and the days to come.

    Much love.

  • Thank you . God bless you and sray strong. X

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