The doom & gloom of my bedroom

Today, I feel in excruciating pain, not just physically but mentally. It's depressing to know that there is a vibrant world out there which I can't be part of. I stay in bed at least 60% of the time, whether sleeping or resting. It's like being in limbo. Everything is gradually wasting away, getting weaker, but I don't have the strength, energy or motivation to take control. I know that my husband thinks I'm a waster - he'd leave if he could. But I don't think I'd blame him. He's fit, active and wants to enjoy life. Do things and go places. Some days I can't muster up the energy to talk. Noises, lights all irritate me. My body is sensitive and I hate him pulling the covers off me as a joke. I don't find it funny. In fact, I don't find anything funny anymore. I wish I had something to feel passionate about. I can't seem to keep up with life. I guess you could say i'm a zombie. Neither living nor dead. I have no structure. What do people do to cheer themselves up? How do you stay cheerful? I feel miserable and tormented...,,,,,

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  • Hi Fuzzyrudd,

    I'm afraid you are stuck in a viscious circle. You are tired so you go to bed, the more you stay in bed the more depressed and lethargic you get... You need to break the circle otherwise it will just get worse and worse. By lying in bed you will not get more energy for sure. Your body (even with SLE) is amazing in adaptind to different conditions and now you are adapting it to some sort of hibernative state. Your muscles are wasting away, you feel weak physically and mentally. So what are you going to do about it? Get out of the bed is the only option I'm afraid. It might be tough at the beginning but you need to reprogram your body to be active again. And you need to find your motivation to do all that. Is the fact that your husband thinks that you are a waster not good motivation for you? Or the fact that you are missing out on all the little good things in life? Or the fact that you are basically just wasting your life??

    If you cannot find the motivation to take control over your life then maybe you need to find someone who can help. A family member, friend or a therapist. But the first step has to be yours. Are you ready to take it?

  • Dear Artemis5, firstly, thank you for taking the time to reply. I am hoping to reply to everyone who has commented, as I have found the suggestions quite healing. In all honesty, I haven't had the motivation to take control of my life. The vicious cycle of pain and lethargy has dictated everything. Equally, I have, since reading your message realised that I don't actually value myself. Most days it is a challenge to even eat, yet, with all the meds, lack of food makes things worse. You are totally right, I am in a hibernative state. Days and nights blur. I now recognise that I need help from a therapist. My family are too upset at how I have become and I don't want to bring them down with my issues. But, I am ready to take the next step and plan to make an appointment tomorrow. Thank you for such a positive message x

  • Dear fuzzyrudd, I know it doesn't really help when people say they know how you feel, but I've been to the dark place that you are describing, & I've managed to come back from there. I'm not saying my life is a bed of roses now, but I manage to do a little bit each day & feel more positive. I don't think there is any one thing that will help, but lots of little things that all add up to make a difference.

    Firstly, because your energy levels are so low, you are in pain & you are sensitive to light noise etc, you could be in a flare & need an increase or change of medication. So speak to your GP or rheumaotology department asap. Secondly think about antidepressants & counseling to get you through this awful phase. I never thought I would need counselling, I thought I was tough, but lupus is a tricky bed-fellow (quite literally) so you've got to do all you can to keep him in his place. Are you a member of your local lupus group? People there will support you & understand what you are going through.

    I thought my hubbie would leave too. Why would he want to live with a '100' year old woman who dressed like a bag lady & hardly left the house, after all! I even tried to push him away, when I was at my lowest. But he stayed, thank goodness. Your hubbie probably feels really frustrated that he can't do anything to help you or make you feel better. Your relationship will change because of this illness, but you can learn to adapt & make your way through it together.

    Do what ever it takes to cheer yourself up, the Vicar of Dibley & Jane Austen DVD's always did it for me. They are practically worn out now. The thing that made the biggest difference for me, though, was setting little goals for myself. That way you feel like you've achieved something each day. When I was very poorly, this might be only getting dressed & then I would be too pooped to do anything else, but it breaks up the day. Otherwise day & night become blurred & this effects your sleep & consequently, everything else. Also try & get a bit of fresh air, even if it's only sitting in the garden wrapped up in a blanket. This will help you sleep too, & get you out of the house & away from your bedroom.

    If & when you can mange it, try a little walk. Take your hubbie so you can lean on his arm, Mr D'Arcy style (there's definitely something to be said for having an old fashioned gentleman at hand when you are a poorly lupus lady). I could barely make it to the end of my road at first, & this is a short road. But gradually & very slowly you can build on this. Don't worry if you have to sit on a garden wall to get your breath, you will might even start taking to a neighbor you never knew you had.

    If all this sounds a bit Mary Poppins, sickly sweet & unrealistic, that's because its my way of coping with this horrible disease, & therefore it may not be right for you. But hopefully this will plant a few seeds of thought in your mind as to what will work for you. And when you do feel a bit better, & are looking for something to be passionate about. How about helping those who are going through what you are now, for whatever reasons. After all, no one should have to feel like this.

    Love & gentle hugs. X

  • Dear Roobarb - thank you so much for your 'gentle hugs'. It is really appreciated, as is your message. I have tried to reply to everyone personally, as I felt quite overwhelmed by the kindess and positive thoughts. Your message, in particular, has made me cry. It is reassuring to hear that your husband supported you. I know that I need to change. So,I have decided to join the local lupus group and also go for a walk tomorrow. It has been some time since I left the house. I even missed my last rhemi appointment, because I couldn't face the world. Everytime I bump into someone I feel embarrassed. I sense their surprise as to how much I have changed in appearance. I have been told by some people that I'm barely recognisable. The steriods have made me gain about 3 stone, plus my skin and hair have become fragile. Equally, I don't have the strength to put nice clothes on anymore or makeup. I plan to see my GP too, to get some help. He has suggested anti-depressants before, but I was unwilling. I didn't want to add to the cocktail of drugs and my husband was so negative about them. However, I know that I have to sort myself out. The illness is probably 80% of the problem. My mental health is causing the other 20%. Thank you for sowing the seeds. My heartfelt thank you to you x

  • Hello fuzzyrudd, thank you so much for your lovely reply, & how nice that you wrote in person to everyone. I have been thinking about you & hoping these messages would help, & obviously they have. Take care of yourself & be kind to yourself, there will be up's & down's for you on the future, but you have made the first step on the road to wellness of mind. And even if your body doesn't want to come along for ride, you can still find a happy place to co-exist. You sound like an amazing person who has really been knocked around by lupus & other health problems, & it's not easy as this site testifies. So remember you are not alone, you have lupie friends all over the world, who are rooting for you. Love & more hugs. X

  • Dear Fuzzyrudd, I guess if you can't stand your life as it is, then it's only you that can do something about it, but I would get as much help as you possibly can from other people. Please go and talk to your GP (the most sympathetic one at your practice) and be honest about how you're feeling; some antidepressants may help and they may be able to refer you for counselling or pain management or hydrotherapy. It might help to go for some counselling with your husband - I think men like to fix things and struggle when they can't. Talk to him as well - it is hugely difficult when he is fit and lively - maybe just go to the cinema together or as above a short walk together but longer everyday - then maybe he will feel a bit more involved in trying to get you better.

    Also try to watch intelligent television - I find it hard when all my friends have been on exciting holidays, or have interesting jobs etc, but if you know something about current affairs or have watched a good documentary and can talk about it, then it makes it easier socially.

    May be a good idea to timetable your bedtimes e.g. make yourself be up and dressed by 10, rest from 2-4 and bed at 9 - that would give a bit more structure to your day.

    Hope that helps a bit xxx

  • Dear Mary, thank you for message.It does help. I'm living in such a blur. days and nights are merging. Its nearly 2am and I can't sleep, yet I'm so tired. I've snuck out of the bedroom and was feeling fraught, but reading everyone's kind replies, including yours has given me things to think about. In particular, I have decided to take your advice and follow your suggested timetable as of tomorrow. Thank you for your advicex

  • Really glad it helped a bit - unfortunately there aren't any magic pills - but you can just chip away a bit at a time. Hope you feel better soon xx

  • I agree with all the others, I WAS YOU 30 years ago,I saw a new doctor he was a 'stand in' and he asked me what was wrong, I just burst out crying and it all came tumbling out, he put me on antidepressants and told me to try and get a bit of fresh air, if only sitting on a chair with my coat on at the kitchen door. It was hard just to do that. I also saw a new Lupus specialist (who is my HERO) and he 'saved my life' he asked if I could swim and said to try just a length. Well it took me a month to get there, some one to get me in and out with the pool chair lift. and now I swim 1 mile a day (64 lengths) 5 days a week. AND YES it hurts like hell for the first half, then I hit the wall and get through, as I do not want to die a Cabbage or a big fat lump in bed and in pain. GET TO THE DOCTORS. BE HONEST both with him and yourself. Then it is a LONG CLIMB and very slow. BUT YOU HAVE TO WANT IT MORE THAN ANYTHING ELSE. Tell yourself, when you can walk and swim you will reward yourself with something. Oh my Friend I DO understand, you have just brought back so many painful memories and I am sat with tears rolling down my face for you and what I went through. I am 65 and a Stubborn old B.. and intend swimming round 'till I am 100. Good Luck - PHONE THE DOCTORS NOW.

  • Dear Hazel, its quite ironic really, as I am 35, so quite literally how you were probably you 30 years ago!It is so inspiring to read about how you have tackled things and the fact that you are swimming 1 mile a day. I am truly grateful for your reply

  • You are welcome and that is what we are all trying to do, help each other. Do try a bit my friend, YES it will be VERY hard. I wish you all the luck in the world and pray that things are now going to improve - YOU made the first move already by asking for help. YOU CAN DI

  • I echo many of the comments above- it really is tough- but it is often about getting the right balance of a number of factors: see GP/ Rheumy re depression/correct dose of Lupus meds, mental stimulation, fresh air & exercise. A friend of mine used to drive me to the park everyday- i would sit in the cafe while she walked her dog- then gradually i started having a short walk too. I then got a rescue dog- i wasnt really well enough to look after her properly - but it forced me out of bed & i then had to walk everyday- i called her my therapy dog as it really gave me something to focus on & company during the day when everyone is out- & when i was feeling really crap she would just lie down next to me. Have you got friends you can contact? when i was very ill friends would bring me lunch or just pop in 4 a chat- mostly people dont understand lupus or chronic illness so you need to ask for help & try to explain how ill you are- most people are willing to help & in fact like to be asked- the real friends will stick by you. Like many people with lupus i have found great problems with concentration & have problems reading & retaining info- so reading a book is too difficult, but i have tried doing crosswords & now do them everyday- i even won a prize- so am totally addicted now. So please believe us when we say it will get better- but it will probably be an up& down ride- that's the way it is with lupus. Best wishes, s

  • PS

    Someone i saw on TV who has a hideously disfiguring disease said 'you have to live the life you have & not mourn the one you don't have' - this is the key to coping wih Lupus- you have to adjust - but it is easier said than done- and i think you have to do this gradually & you will get there in the end- also have you read Spoon Theory? If not do so- then make your husband read it & then email it to all your friends- it will help them to understand what you are going through. xx

  • Thank you or your message Sheilainaction. It has put things into perspective. I think that I have been indirectly mourning the loss of many appearance, my career, my relationships and loss of my brain - words come out wrong or I say stupid things!!. But, as you say, I have to live the life I've got. Unfortunately, through becoming ill, I lost most of my friends. I couldn't manage relationships, found that I was always cancelling things or generally unable to keep up with their active plans for socialising. It was too hard and I guess people eventually end up stop ringing. I do still have a few friends that I could contact though. I was avoiding it as I feel that I have nothing say. However, that is something that I can work on. I also live very near a local park which has a cafe and, your message has made me think that I should make use of it. I guess there is no reason why I can't go alone and, like you, try a cross word and walk. I have just read the spoon theory. I plan to send this to my family. My husband on the otherhand probably won't be interested. He thinks all illnesses are in the mind and that even phyiscal ones are in the mind. Luckily, he has never been sick - he doesn't even get a cold! Thank you one again. I feel reassured that things will get better.x

  • May I ask when you were diagnosed ... how long you've been battling for?

  • Dear Tigerlily I was diagnosed in 2009. However, I had the mild symptoms from about 1993, following a year long episode of glandular fever. I was initially diagnosed with fibromyalgia in 2006 by my GP. Then in early 2009, following severe chest pains which resulted in hospitalisation that Lupus was discovered. I was covered in malar rash, and had many of the typical symptoms. I had, up until that point, thought I was a sickly person and generally coped. have also recently been diagnosed with Addisons disease, following 3 years on steriods. Its the fact, that progressively things have got worse. I used to be a solicitor, but had to leave my job. Through getting sick, I have also got in debt, which hasn't helped.

  • Awww, big hugs, sounds like you've hard an especially hard time <3 Co-incidentally I worked within the legal profession in London for many years too so understand exactly what you're missing and why. The wretched lupus (and I'm sure Addisons, about which I know nada) can feel like and often is in fact one long series of losses. It's normal/healthy to go through periods of mourning for each, being careful of course not to fall into total despair (with the help of anti-depressants when necessary). Once you learn how best to manage your symptoms and reach some kind of stability, different life opportunities will occur and give you back a sense of purpose and self-worth. Some of us might not ever be well enough to return to gainful employment but I know for sure your expertise would be greatly valued by any one of a number of charities as a volunteer in due course, on an "as and when you feel up to it" basis, either solely online or otherwise, depending on how much you feel able to comfortably give. This will give you a fantastic boost and also become a great distraction. Distraction is one of the most powerful, natural weapons I employ to manage my disease. Unfortunately, drugs can only do so much and the rest is ultimately down to us. So please don't despair - it IS possible to go on to have a fulfilling and productive life, just a different one from that we initially had in mind :) xxx

  • I would suggest asking for antidepressants, even if just for the short term to turn you round.

    Don't expect to make all the changes in one day either... Just one thing a day, even if it's just walking to the end of your garden path and back again...

    And you will have steps backwards, we all do.Xx

  • Dear Adamine, thank you for your advice. I've finally reached the stage where I recognise that I need to take anti-depressants. My GP has offered them before, but I didn't want to take them. I sincerely want to get out of this rut of pain, lack of energy and living like a zombie. Thank you once again xx

  • Please act on the suggestions the others have given when you feel that low you need professional help you don't have to live like this.

  • Dear Copdber, I've tried to reply to everyone, to say thank you. The last 2 days have been horrendous. I have felt in such a dark place. I know I can't go on like this and plan to get help from my GP tomorrow. Thank you x

  • Hi there,

    I've been in that dark place that you are describing. I had to take a year out from my studies and I had no friends because they were all away doing what i should have been doing. Most people were like, 'you can take this year to do the things you've always wanted to do! Like travelling, learn a new language!' Oh come on! Some days I can't even get out of bed! It was a lonely place, I watched a lot films just so I wouldn't have to think and tried to exhaust my brain out so I'd just go to sleep by going on the internet. I admit though going on forums like this did help me.

    When I did see people, I was afraid that I looked ugly because I had really thin hair, I was gaunt and had no spirit for make up or nice clothes, I had no conversation because I didn't really want to talk about Lupus and I didn't have the normal conversation topics you'd have from living a normal life. It made me sad that I was afraid of hanging out with my friends.

    At the beginning I was incredibly low and my mum didn't know what else to do but tell my GP. He was lovely, he was really supportive and I am so grateful for the people who care for me. So I'd suggest talking to your GP, they can be really helpful and can be your friend too.

    I'm already thinking of what Christmas card and gift to get him because he has been a complete star.

    If there is someone who you wouldn't mind seeing, ask them to pop round for tea and do irrelevant things like make greeting cards like at school with glitter and felt tips or go for a stroll with a dog.

    It's a small things. Please take it one step at a time and its a dark place, but you can get out of it.

    We're all here for you.


  • Dear Flippityfish, I relate to so much of what you say - my appearance has drastically changed and I have lost contact with friends and turned into a recluse. My husband often jokes that I a misery and questions why I don't like people anymore. I try to explain, but he doesn't get it. The fact is that I have no conversation left in me, can't think of what to say, or when I do, I say something jumbled up, which comes across as peculiar or stupid . I've also become out of touch with normal things. I guess its because I am alone most of the day. My family visit weekly, but are often complaining that I should take more pride in my appearance and wear nice clothes & makeup. They say things like you used to be so pretty and dress nicely, but now you're like an old bag lady. I find it hard to take care of myself, but know that I need to. My GP is also nice but I try to put on a 'face' when I see him. I often pretend that all is well, as he knew me when I used to be a solicitor. I have decided to call him tomorrow and have an open and frank discussion about how things have got so out of control. Anyway, I just want to thank you for taking the time to reply and showing such care. It means a lot xx

  • anybody who says they don't have 'down' days where they really just wanna stick 2 fingers about 2 the world & curse this bloody illness till they run out of breath is either a) a liar, b) deluded or c) 1 of a kind. I find that being able 2 try & have a laugh about my situation helps even if I'm feeling like I just wanna crawl under my quilt & stay there. Luckily, my other half already knew about health b4 we got 2gether so kinda knew how it COULD get. Granted I was in 'remission' & he hadn't really seen me 'bad' with it. It HAS been a shock 2 him but I'm very lucky that he is supportive & give him his due, he reads all the garb on lupus that I fling in his direction. What helps the most is that he 'gets me', he knows when I need 2 b left alone (he'll take the kids out 4 a few hours), when 2 hug me & when 2 completely take the mick out of me 2 make me laugh. The only reason he KNOWS this though is because I've always been totally honest & open about how lupus affects me personally and what's going on in my head at various times so he's learned 2 read the signals by my facial expressions & the kind of tone I use when I ask him 2 stick the kettle on ;0)

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