Hi
I am 57 work full time in a challenging physical job I do my best at home bu am often so tired I just want to rest or sleep. I was diagnosed with lupus over a year ago but feel I’ve had it for years. My partner thinks I’m lazy he is retired he thinks I’m just to fat and if I lost weight a magic wand would be waved and I would bounce about full of energy.
I find it hurtful and patronising today he said all I do is lie about in my pit.
Hi Mockingbird, I'm sorry to hear that you have had such unkind words said to you. Being lazy is totally different to suffering from fatigue. You do well to hold a job down!
I feel for you and encourage you to keep posting (see my latest post above) xx
Thank you I think the problem is I still think I am lazy
Anyone with lupus who puts one foot in front of the other, gets out of bed to face the world, and spends more than her share of time in doctors’ offices deserves a medal. And you work! Maybe your husband could benefit from lupus education. You are a courageous woman.
Sometimes I wish that you could hold other people’s hands and they could feel what you are feeling...sooo sorry your mate was feeling discouraged. I hope you get to feeling better, as with all things, one day at a time. Hopefully one day soon they will find a cure. I’m glad to hear that you are listening to your body. Rest as long as you need to. I’ll pray for you and for your mate. 😉😇🙏🏻 Sincerely Lp
Thank you for your kind words
You stay in your pit, think about you. Xxx
Well I think U do amazingly to be working full time!!!!
I’m 39 now but have worked part time 2-3 days a wk since my early 20’s because of this....so I wonder what he’d say about me??!!!! I now have even had to cut down further to just 12 hours a week as I was struggling so much. I do have a 5 and 2 yr old too.
It must be so hard when a partner just doesn’t understand and makes such remarks. Have u considered taking him to ur next app so he can hear for himself about the condition.
I think it’s hard cod sometimes it’s a generation thing as how u have been brought up too.
I know that my dad who is 70 his answer to my back pain and limp is that I need to do a lot more walking then it will go away and that I don’t get enough exercise, which yes is partly true but I’m so exhausted the last thing I want to do is get on the treadmill!
Hope things get better x
Thank you for your support xx
Sending hugs xxxx
Not that I do not work hard around my home/Yard, but at least I can take a nap when that horrible wave of fatigue washes over/through me......I was Dx'd at 62 last fall...explains a lot of mystery feelings /symptoms over the years that I didn't bother the drs with...but last summer it was so obvious that something was off....anyhow, There is No good(fix it) answer from the peanut gallery(our people who make remarks) thank you very much!! I am sorry you are being called lazy....Xx
Thank you xx
I'm so sorry you are hurting! I haven't read other replies but I'm sure they can identify with the feeling of not being understood or feel like we don't do enough.
I'm 56 and have just given up a business of 17 yrs. So if your still running around with a full time job... I TAKE MY HAT OFF TO YOU! You should be so proud of yourself for still carrying on. 👍👍👍
Well done you! 🌻🌞🌼🤗
Sorry you’re going through this 🙁 The fatigue is one of the very worst symptoms for almost all of us. It is not laziness but I think we all (especially in the earlier days of the disease as you are now) have sometimes worried that maybe we can overcome this with our attitudes - but we can’t, it’s a horrible, frustrating and often life changing part of our disease. The only part of it we can try and control is our reaction to it (learning pacing, adapting etc) and trying to educate our family and friends to be more understanding and supportive and not make unhelpful comments.
Once you get the disease under control or it goes into a quieter phase the fatigue may get a lot better.
My husband wasn’t great about this aspect with me. A lot of comments and resentment that I’d leave jobs to him because I was in bed. What changed his attitude and he’s completely different now in his view of the need for me to rest (too far the other way, he keeps wanting to get me a wheelchair 🙄) is coming to see my consultant with me followed by me then being in hospital. He still sometimes says he’s ‘shattered’ and I still sometimes tell him it’s nowhere the feeling we all suffer most days but think ‘normal’ people just can’t comprehend it.
You’re doing amazingly well to be working - lots of people with lupus just can’t.
Have you got a good rheumatologist and a treatment plan? Hopefully that will help with the fatigue and all the other symptoms.
Lots of love x
Hi Mockingbird13 ,
I'm sorry to hear that your partner is not understanding and supportive. Have they attended any medical appointments with you, read any literature about lupus or possibly spoken with other people affected by lupus through a support network? It might help improve his understanding if he learned a bit more about lupus and maybe met some other people who have lived with the condition for a while (and/or their partners).
We have a booklet called 'Caring for someone with lupus' which may be of interest. You can read/download it from our website at lupusuk.org.uk/wp-content/u... or if you'd like me to post you a copy, just send me a private message or email paul@lupusuk.org.uk with your name and address.
If you'd like to attend a support group meeting together, you can find the one closest to you on our website at lupusuk.org.uk/regional-gro...
If you need further 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...
Update
Family ignorance !
Struggling to get any doctors to listen to me.
Despairing after a new Rheumatology Visit
London lupus center appt 
