I was diagnosed in February of this year with, 'mild' Lupus. Been struggling with acceptance. I did not think that 'mild' could be so painful and restrictive. I'm on meds but not sure if it is the proper dosage. Apart from inflammation /arthritis (I have poly arthritis which means every bone in my body pains), I'm also constantly sick with minor illnesses such as flu, tummy bugs etc. I sleep really badly and am so bitterly tired.
I get it when people say that typing is painful. I've constant chest pain, which the physician diagnosed as pleurisy. Tonight I'm in bed with some kind of nausea... Good gosh.
I'm concerned about my job, income... Like so many on this site. I'm a teacher and in management. 42 kids in a class, no assistant. I don't know how long I can do this for. I used to work 12 to 14 hours a day, now I can barely get through 8 and I hate not being able to pull my weight.
Fortunately, I have an amazing husband. He may perhaps not understand, but he's supportive and does a lot of the house hold chores.
This is just difficult. Typing, climbing stairs, cooking, driving... Never in my life could I imagine that I would say that even my pinky toe pains. I can't even hold a cake when I'm having a flare.
I used to be really active. Danced, jogged, played tennis, swam, love cooking. Suddenly I'm 40 and old.
Thank you for this forum. Thank you for your posts. I learn and relate, and that's the most important thing. That one feels less alone.
God bless🌻
Written by
ChantelF
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I remember how awful the last 8 years were for me, when I worked. I was a Registered Nurse.
I retired after much ill health and struggling. I was 64 years old. I loved my job.
A few months after retiring, I collapsed. I was eventually diagnosed with Sjogrens syndrome/?lupus.
It took me 2 years to regain any sort of good health days. I could not believe that I had pushed myself so hard, for so long. My rheumatologist told me that my bloods had shown my AI some 9 years earlier, when I had presented with very bad pain in hands and feet. I had not been told.
I regret not listening to, or respecting my own body, as I continued serving patients. If I had known why I was struggling so much at work, I would have walked away.
In no way is the above suggesting you walk away from your job. However, I would urge you to find ways to reduce pressure on your body.
I am now 4 years into retirement, I will never be extremely healthy. Though, I do now listen to my body. I never push myself. Rather, I cancel anything I'm not up to. I eat gluten free, minimal dairy, walk, read, enjoy social groups that interest me.
Thanks so much for your response. I'm sorry that you are going through so much as well🌻
I was diagnosed by a physician who has now finally sent me to a rheumatologist as the medication isn't helping much. I really hope for some relief.
You're right in that I need to relieve the pressure on my body. Have gotten someone in to clean and iron once a week. Also interviewed for another teaching post closer to home, smaller class etc.
I cannot tell you how thrilled I was to read that you are using your fantastic teaching abilities on bettering your own life and wellbeing.
My daughter was a teacher in a mainstream secondary education school. She was so good at her job that she was promoted to lead teacher in many subjects. However, the strain was enormous especially when she put her firstborn into nursery, returning to work after maternity leave. The head teacher would not accommodate her request to have a room at lunchtime to express her baby milk. My daughter got sick with guilt and stress. Left the job and is now head teacher of her own independent school. She loves her new job, the school children, and of course, her lovely 2 daughters, and her hubby!
Jobs can come and go, we only have one body, let's ensure we care for our body the best we are able.
Hi Supul, we are so similar. I too am a nurse but work on agency as I couldn't do a full time job. I too pushed myself for years to look after others without a second thought to myself. I was off work for nearly a year some 28 years ago after being diagnosed with ME. Spoke to my rheumatologist last week who said that given all the other symptoms I had and have since had, it's more than likely that it wasn't ME but probably Lupus all along. Now I work sparingly but haven't done so for the previous 4 weeks. So ChantelF please listen to your body and rest when you need to. You are young and need to ensure that you have some quality of life, learn by our mistakes
It's not selfish, everyone initially feels that way, sometimes I still do. Others expectations of you have to change, you really need to focus on yourself as it's so so easy to do too much
I so understand how life altering this is..I used to be an athlete. I used to enjoy sunshine.I had enough energy to make it through the daily activities....I do not have to hold down a job...if I did, I would be found sleeping in a corner someplace...I mowed the lawn..after I couldn't make it up the front walkway ..I was SO FATIGUED i just plopped down and rested on the ground....all this while slopping sunscreen wearing spf clothing and extra clothing covering that....I will say that since taking Hydrochloaquine, my hands wrists feet do not hurt anymore...that is HUGE!!...My Best to you as you learn to cope...I'm still learning
Thank you for your response. Last year I did a 30 min waltz class and had to lay down for the rest of the day. Ridiculous!! That's when I told husband that there's something very wrong with me.
I'm on Plasmoquine and haven't felt much change yet, if any. Early days I suppose.
I am sorry, this is a bad time for you and it probably feels like your life has flipped and you are not in control anymore. You do not say what medication your Physician has you on. The Rheumatologist will probably be able to help you a lot more with your symptoms and do more specific blood work. If you are on now, or Rheumi puts you on Hydroxychloroquine, keep in mind that it takes time to start working. It was a good six months for me before I could see big results. During that waiting period I was still very sick and thought that it would always be that way because I was on meds and still felt awful. Get lots of rest, taking care of “yourself” is your number one job now. The harder you push yourself the longer you will feel like you do.
I’m so sorry to hear your struggles - finding what’s going on with your body takes the medically trained so so long, the gaps between appointments seem so long and the process takes forever.. the path we have to tread is out of our hands and waiting for appointments and results is just so hard.. you have my sympathies. I am walking that path myself at the moment.. the words my consultant uses are mild lupus and possibly sjogrens and lots of words with algia at the end with a sprinkling of neuropathy, and disc degeneration.. it’s taken nearly 5 years to get to this spot. Your not alone here, the information that people have is amazing and they are so supportive and happy to share their painful moments and still laugh.. it’s an awful rollercoaster of a ride to diagnoses and treatment but here there is always hope and support and so much strength and resilience it’s heart warming..
I wish you well and a brighter tomorrow, it’s really scary wondering if you will complete the working week this week every week, but the secret is to listen to your body and if you need a day or two in bed alone quiet or on the sofa feet up you have to be selfish and just do that..
medication does take time to kick in it was 4 months on hydroxychloroquine before I felt I had turned a corner so don’t give up give it time..
patience is really needed all day every day, what ever I’ve got needs all the patience I can muster most days - that and the ability to laugh at yourself and I mean proper belly laughs
Take care, good luck, don’t loose yourself and the things you love to do during the process.. adapt and find time to enjoy things that bring you happiness
Hello, I feel for you and I appreciate how frustrating this life changing condition is. I am still in the waiting for blood results and to see the rheumatologist. I was diagnosed after a skin biopsy from a dermatologist. I get so tired all the time, I used to be very active and realise that over the last year or so my energy levels definitely were so much lower than they should have been. Walking to school to pick up my child (10 minutes - slightly up hill) was like a marathon. I also suffer from pains in my hands, wrists, ankles and toes and sometimes even my ears. I try to listen to my body more now and take things easier when I am feeling bad. I am starting an intensive teacher training course in July - and I know this is not going to be easy for me. I also find myself hiding in the shadows whenever I head out, even with factor 100 sun screen and sunglasses. I live in Barcelona and it is sunny most of the time which makes it very difficult for me to be out and about during the hottest periods of the day. I tend to go out after 6.00pm if I have to. The sun just wipes me out!!!
My face is a mess and my scalp hurts - I am impatient also to find out what is going on with my body. I am also feeling sick today - I have to go into the city later on and I really don't feel up to it but I don't like to disappoint my daughter.
I won't be seeing the specialist till late June..... had blood tests last Monday.
I have found this site very helpful and I take on board what a lot of people suggest regarding taking things easier and not to blame yourself. It is the only way I can manage at the moment. I am a divorced mum with 3 children, luckily the 2 eldest are more or less independent.
Guess we have to hang on in there..... wait for meds etc.
Welcome to the LUPUS UK Community Forum. I'm glad to hear that you are already finding this a valuable place for information and support.
What treatment are you currently taking? Did you start it in February when you were diagnosed? You mention that you're not sure the dosage is correct - is there a reason for this?
Is your employer aware of your lupus? Have they made any adjustments to help you manage better in your role? We have a couple of employment booklets which you may find helpful. You can read and download them at lupusuk.org.uk/working-with... or if you want physical copies posted to you, just send me a private message or email paul@lupusuk.org.uk with your name and address.
5hanks for your message. I'm on Plasmoquine, Prednisone and Arcoxia. I felt that the dosages might be too low, as the pain just did not get any better.
I can report now that I am feeling better, and only take the Plasmoquine.
My employers know about my condition, but no adjustments have been made. I am not sure that they understand just how bad this can get for me. I also don't want to insist on things as it might then be seen as nagging or that I want preferential treatment or am exaggerating.
Having a class assistant for example would help a lot, but when I ask, I'm ignored or told there's no money.
So for now, I keep my head down, do my job, stay positive (not always easy) and look for something else.
Getting assistance in the workplace isn't about nagging or preferential treatment, it is to help you to manage better in your role and help you continue to work. This is beneficial for you and your employers!
Regarding the cost of any adjustments or an assistant, there is a lot of support available towards these expenses and your employer may not even have to spend anything. Please take a look at the booklets I provided a link for and read about Access to Work.
It is much better that you have the support in place now, when you may not need it, then carrying on potentially it being too late to help you.
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