Everytime I feel good for a couple of days, I think I am cured. LOL!
Even got to believing I could work full time. I just cancelled an interview with great regret, because I woke up walking into walls, dizzy again. Ugh! Also, I can't seem to process what I hear too well, and speak words that arent real words. My husband and children make fun of this. Maybe that is what I need to do, start laughing more at myself.
I know I am not ill enough to get disability, nor will I ever try because I am too proud.
I again, tried to explain this disease to my husband, and he did not respond with anything but do you want to get an MRI for the dizziness. I just cant seem able to explain this disease to anyone ! My brother keeps telling me its my state of my mind...be positive...so do my in laws who dont acknowledge this illness at all.
Everyone has their own set of problems. " Sorry for your luck kid " is usually what I get from my brothers and sisters. Two of my sisters are in such denial that they just ignore whatever I share with them.
If it wasnt for this site, I would be so alone. Thank you for being there these 3 years.
I need to accept the fact that I may not be able to work. I struggle with this everyday because I have always worked so hard my entire life. It is difficult for me to get out of the house these days I am home. I guess I am depressed. I am worried what I will do when my girls are graduated and off to college.
Thank you for listening.
Written by
Natura
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Hi Natura I totally understand where you are coming from
Firstly I would say discuss this with your GP. We have to look after our mental health as much as our physical health. Coming to terms with having a long-term health condition / disability such has Lupus has a big impact upon ones mental health. Also depression can be a symptom of Lupus (and not just due to coping with accepting limitations)
Secondly don't be scared of the "disabled" label. the definition of disabled (under the Equality Act 2010) Is that you’re disabled if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
Accepting the label can help you get the kind of support you need if you do want to try doing some kind of work, and If you can't work you may be entitled to get disability welfare benefits, (don't be too proud to get what you are entitled too).
Under the equality act Lupus is a "disability" under equality/disability law --- hence the equality act (previously known as disability discrimination act or DDA) has to be taken into account by employers if you do try to do some kind of work
Lupus can reduce the ability to work and may mean that you have to look at such things as reductions in working hours and/or changes in the nature of a work Some people with Lupus can't work at all, some can do some kinds of work, some can work but need a lot of flexibility, and some manage to work with not too many problems .
I would advise have a good honest assessment of what is realistic for you as an individual, and fully discuss all your problems and difficulties with your GP ... they can help not only in helping make sure you are getting full treatment, and access to any other support that you may need, but also help when it does come to dealing with employers and if you do need to claim social security benefits
For me I am not well enough to work, and I had to retire due to ill-health. Having to give up work was very hard to accept, and going through the whole process of losing my job applying for welfare benefits etc etc was a really hard process. I " fought" myself for a long time trying to work when I was not really well enough, working then becoming unwell again etc etc.
I went through a grief process of learning to come to terms with Lupus diagnosis, learning to accept that I needed to ask for help and support , and learning to accept that I could not work. This link may be useful helpguide.org/articles/grie...
In hindsight not working and taking medical retirement was the best thing for my health as I can now fully rest/ sleep/ pace myself as needed and I have less stress, all of which helps me stay "as well as I can be"
Thank you. I will look at those links. Unfortunately, my health insurance is bad and i have to pay out of pocket for any dr. That being said, I was considered low end because of a low ana. Then it went negative, and wala...lupus gone. Though i still have symptoms and problems with my liver, kidneys and lungs.
I will cross the disability bridge when I have to. In our state, they follow you around and watch you when you are on disablity. And we all know how well lupies look on the outside.
I had a woman at my last job not believe me because I do not have the classic butterfly rash.
I can totally identify with the eternal optimist feeling. Every morning at around 10am, my early morning grogginess has worn off and the meds start kicking in and I think - "Hey, I feel OK. I could be at work!" But since I am on sickness absence, I put my boots on and go into the garden, thinking I can clear some leaves before lunch. Five minutes later, I crawl back into the warm, and slump into my armchair. It takes about an hour to recover.
And that is the best part of the day!
This year has been the first that my daughter has been in college and I've had no work to fill the gap. I have found ways of coping - researching things on the internet for her coursework, or for friends who haven't the time; trying to become an expert in some arcane branch of knowledge (16th century Celtic poetry?) And besides that, its a full time job, this being ill business!
Couple of years ago i was so sick of my financial state and i said i will desperately look for a job. I was called for an interview, so i took the whole week to prepare for the interview. Sunday (a day b4 the interview) on my way back from church, i became very sick in the taxi. The taxi driver thought i was hungover so he said i will pay him £25 to clean up his car and my trip was just £2.50 bcos it was a short distance.
After that experience i sort of gave up. The thing with lupus is that u never know how u will feel the next day. It is unpredictable and that is sad. I have thought to my self, i cannot achieve anything with my educational degree. But i have now focused my energy of my church. Started a carers coffee morning once a month, and starting my church youth group. It takes my mind off my disability. So take ur time relax and God will inspire you in the direction he wants u to go.
For family members who dont understand just pray for them or invite them to one of ur hospital appointments. I am sad when people like us dnt get support from family. I am blessed to have my mum and i thank God for that.
As i have said to you b4 dnt worry about 2mro but cherish each day as it comes. I will continue to pray 4 u.
Thank you so much ijea for those caring words. My cousin thinks i should finish my bachelors degree. But, they dont understand this disease either. They mean well. But, as i sit here trying to catch my breath yet another day, I know driving to school will be exhausting.
I dont really like The reverend at my church. Maybe its time to find a New church.
Hi Natura the comment from ijeasike about family members reminded me ... the spoon theory is good to help try explain things, for example you can say I don't have enough "spoons" to tidy the house and also cook today. It has also helped me pace things as I try to think along lines of "how many "spoons" do I have today? , how many do I need ?, can I build up some spoons over next few days so that I can then also do a supermarket shop?, how much rest do I now need so that I can replace some spoons butyoudontlooksick.com/cate...
Hello - I note that you applied for a job then cancelled an interview. Could you look for a part time job to begin with, perhaps two to three days a week and see how you get on? x
The only part time jobs are sales or cashier jobs. I wont do sales. I am not a salesperson. And cashier is tough for me to stand that long. I am hoping something will come up. I look all the time.
I'm an infrequent visitor to this site but I signed up in 2013 when I was diagnosed with SLE. My heart sank for you when I read that many of your family members have such a lack of understanding towards your Lupus. I went through a phase of feeling as though I was just becoming lazy and losing my enthusiasm for my job and life at the ripe old age of 51 (I'm a scrub nurse in theatres) as every day became a battle to get up and go to work and then push push push to get through the day.
My appearance changed, I looked and felt haggered but thought this was normalish for my age. I tried so hard to keep things together work/life balance etc because that's what a lot of women do and I hated the thought that anyone would think of me as not pulling my weight. I made myself ill because I cared too much what other people thought of me.
Four years down the line I'm again on long term sick from a job I loved (politics excluded) but I don't care anymore what people think and neither should you. Only you know the real daily battle that is fought within you. Your family should be ashamed of their attitude knowing how you were pre Lupus diagnosis. You'll have had all their doubts about this cunning disease being anything more than 'all in your own mind'. I know how it feels, and I feel supported just knowing we do have each other on Healthunlocked. Please know my thoughts and I'm sure many others on here are with you.
Thank you sleepynellie...I dont need my family to believe. I have given up trying to explain. My one sister keeps telling me its aging. She doesnt see me when I look really anemic. Or know my pain. I explain how I have a terrible time breathing, scarred kidneys and liver pain, and she still doesnt get it. It is what it is. My natural treatments are working well, as I am healing my gut and liver daily. Sometimes I get really scared, but have found work a good distraction. I will be able to provide health ins for the family with this job. I keep pushing through the dizziness and foggy brain. I need to put in 10 more years of work. I am 54. I only hope I can continue to get out of bed. Hardest part. Always been a hard worker my while life like you. Pushing through the day. I look for support and get it from many on this site. I thank you all. Keep moving, and living a full life. 🙂
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