Unhappy chappy!!

Unhappy chappy!!

Hi all, my name is Johannie and I was diagnosed with UCTD, Fibromyalgia, Raynaulds and lupus last year September. My life hasn't been the same since then. I had to go back for more blood tests but I gave up. I stopped going to see the doctors and are trying to cope with this on my own. I have two lovely kids and a husband which makes me happy. If it weren't for them I guess I wouldn't be here. I'm am a fighter and will fight this battle with or without any doctors.


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18 Replies

  • Hiya I've reynauds myself and been told that I have tested posted on the anti s DNA test and that test is used to indicate lupus .Been referred to rheumatologist and I'm waiting possibly three months before I can get somewhere to find out what the hell is wrong with me !

    I know very little about this lupus condition but it seems very serious potentially and from what I'm reading it's not some thing that you Can monitor on you're own . .I hope things work out for you

  • Thank you for your reply. I do hope you get positive results. Lupus is a very bad disease which has taken over my life. I'll pray that it is not something serious. Good luck!

  • I suppose the only thing you can do is to keep going to doctors to make sure they monitor the condition .Is it an option to not take the medication ?

  • No it is not really an option. With lupus you have to take your medication everyday. I guess I have to go back to the doctor again. Don't really feel like it

  • It's easy to get frustrated with the medical profession but this disease is difficult to diagnose and I have always tried to remember that they want to support us, it's in their interests to make us feel better. I love your positivity and your mental determination. I was upset when my symptoms presented but I changed my mindset to fight mode. I made myself go out for walks and my body and mind are stronger because I focus on what I CAN do. That's not to say that you can beat this disease with a positive attitude but I'm a great believer in mind over matter and it's certainly helped me to claw back some semblance of a good life.

  • Thank you for your reply. It is very encouraging and I will try harder to be stronger and to push myself to do more... it is always great to hear from someone with a strong will and personality. Have a great week further

  • Hi Cjmi,

    Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information.

    May I ask if there was a particular reason you stopped seeing your doctors?

    It is important that you are at the very least monitored from time to time because sometimes with lupus it can be causing damage without any noticeable symptoms. For example, around 1 in 3 people with lupus have kidney involvement and it tends to present with no pain or other symptoms until the later stages.

    If you are concerned about taking treatment, it would be best to talk about this with your doctor. If you are worried about certain side effects then you can discuss the likelihood of these occurring and what action you can potentially take.

    If you would like more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Thank you for your reply. The reason I stopped seeing my doctor was for a few reasons. 1. Most of the time I'm alone in the office running everything around here and there is always an issue if I have to take off the see my doctor. 2. Then I have to sit there for almost the whole day before getting helped because I do not have a medical aid. 3. Everytime I go back to the hospital to see the Rheumatologist there is a new doctor, it isn't always the same doctor so then I have to explain everything from the beginning. I just thought that if everytime there is a hassle just to see the doctor it is so much easier just not to go there anymore. After a few munites sit and wait my body is paining even worse than before I went there. They send me to this part of the hospital and that part of the hospital because obviously they have to do different tests and it is in different departments but I feel I just can't do us much as I used to and it is a struggle. I feel exhausted and terrible after just an hour there... Now atleast I am managing on my own so far, it is not very nice and more symptoms is coming and going but atleast I don't have to torture myself to sit there the whole day and when I get back at work the boss is angry at me...

  • Hi Cjmi,

    I can appreciate how it could be awkward for you to see your doctor. I'm afraid that I am not familiar with the health care services in your country so it is difficult for me to offer much advice. Is there anyone at the hospital who you can discuss your concerns with to see if anything can be done to make seeing your doctor more manageable?

    Is your GP able to help at all? If you are assessed by the rheumatologist and prescribed treatment, can your GP then continue the prescriptions and monitor you?

    It takes a while for the treatments to be effective, but they could possibly help to improve your symptoms and quality of life.

  • Thank you for your kind advise it is certainly nice to see that there is people who really cares and want to help as much as they can. I'm not sure if my GP would be able to assist me I will see him and find out from him. I know he was the one who directed me to the Rheumatologist. I think it would be best if he could monitor me and go on with the medications. Thanks again it is much appreciated ☺

  • I know exactly how you feel. at a certain point, you get fed up with all the hospital visitis, controls, medication. sometimes I think I just want to stop with all the muck I'm pouring into myself everyday. Hate the waits. wait for an appontment, wait for the doctor, wait for the tests to come thru. Hate being dependant on all these people that seem to rule your life.

  • Thank you!!! It is exactly how I feel. It just makes me even more tired than I'm already... It's just not getting better and it frustrates me and stresses me out even more!

  • Cjmi,

    I think many of us can appreciate how you feel about Drs and stress of taking time off work. We have all been there.

    What strikes me, as someone who seems to have walked a little in shoes like yours,

    1), Your job is making too many unreasonable demands on you.

    2), Your illness is getting on top of you;especially when it comes to managing a life work balance.

    3), You are caught up in a 'crazy, stressful, medical system (aren't we all?),

    4), You feel alone with your struggles, (we all do, at times, that's why HU and other good friends are so necessary). We a need support. Seek it everywhere, as you have today.

    5), You are not helping your condition, beating yourself up, and denying yourself what you need, will only exacerbate your symptoms.

    I implore you, take stock of your life. Be nice to yourself. You matter. Get well. Focus on that. With everything else, do your best but lower your expectations of yourself, and of others. Take a day at a time, this difficult time your having will surely pass, as night becomes day..

    I write the above, not to dictate a plan for you, merely to tell you, I have been there, I have, and do continually learn, life pacing is the only way..

    Take care, get well soon.

  • Wow!!! I don't even know what to say... I do work very hard and try my best to keep everyone happy. For one person to do 6 people's jobs at work I should be proud of myself but it never was a struggle I always did my job on time and no problems but now I just can't seem to keep up anymore. I'm trying not to show my pain and emotions and try to keep on doing more and more... Even though my boss is happy with my work he just does not seem to understand that I could be ill just over night. I've been working here for almost 10 years now I am literally part of the furniture now. I am locking up after work and I am opening up in the mornings and most of the time I'm alone in the office doing everything around here. He does not want me to take off to see the doctor because they do not know what needs to be done around here. They are always in meetings. I know I need to think about myself more and about my health but I literally felt like just giving up like my body has given up on me!!! Thank you for your kind words and for caring! People like you amazes me and give me courage to go on eventhough I am hurting so bad... Have a blessed day! xxx 'Gentle hugs

  • Great advice! Can't add anything to that. Well said webar4780.

  • Cjmi,

    It seems to me, your willing attitude within the workplace, has been taken advantage of.

    After struggling like you, with working and illness, for far too long, I finally left a job I loved because I could no longer drag an exhausted body to work.

    Within 3 months of leaving, I collapsed and was ambulance blue-lighted to hospital.

    I hope you manage to change your punishing situation soon.

    I spent a year forgiving myself, for not listening to, nor respecting my body, or myself enough.

    I always used to put the needs of others before mine. That is a behaviour pattern I am well rid of.

    Take good care of yourself. X

  • Hello. I'm just reading your post and the helpful replies you've had. I can't add too much really. And my story is a long, frustrating one. I have fought battles and lost but am getting there now. I think my lupus was kicked off by the birth of my 3rd child in January 2008. I got diagnosed in 2013. I have learnt a lot of lessons during this time. I no longer work. I got to a point last year where work was slowly breaking me bit by bit. It was taking all of my energy. I had nothing left to give me family, my husband and 3 children. My deteriorating health forced my husband and I to take stock. With lupus you HAVE to take care of number 1. You. No one else can do that. If you don't look after yourself you can't look after your kids. They need you to be as well as possible. If you push yourself too hard and end up seriously ill , who will look after your children for you? I know it's hard. It's such a life changing illness. Sit down with your husband and have a real open, honest chat about this. Together you will find a way forward. And get your GP onboard. Get a new Rheumy. Fight. Fight for you and your families sake. Best wishes. X

  • Wendy, thank you for your amazing reply. Thank you for the advice. Sorry to hear about what you had to go through. It is tough!!! It is so true that we have to look at ourselves and care for ourselves... The only reason why I'm holding on to this job is because jobs is scarce and my husband's salary won't cover all expenses. So I have to keep on working and force myself to stand up everyday to go to work. Weekends I spend my time staying in bed. It really frustrates me because weekends used to be my time with my kids and family and now I'm in bed the whole time. They are still very young and active and want to play and not sit and watch over mom... I hate being in this situation!! But then again thank you for your reply and kind words. Amazing people like you make things easier... May God bless you.. Gentle hugs xxx

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