It's been a crazy ride the last well I'd say 6 months. Back in Feb I went to A & E with pain on my right side where my ribs were. After a lot of waiting and tests, they suspected a blot clot Thankfully it was not, it was put down to a viral infection. I had previously had a chest infection in November and January. It took me months to recover from it. I'm okay now regarding that and I've been given aspirin to take again as my blood clotting markers are high.
Sadly in April my father suddenly passed away very unexpectedly and since then I haven't been right. It was a complicated relationship and a shock. And it's knocked me a lot. I was already struggling lupus-wise from being sick and having stress and problems at work. It took me 6 months to hear back from my consultant at Guy's. I went 3 weeks ago and was given steroids 20mg and upped my azathioprine to 125mg. But the 20mg pred which usually works straight away just has not been. So I've been told to carry on with it for another 2 weeks until I try and reduce it to 17.5mg.
Whilst this has been happening I was put back on an attendance plan at work because I've had lots of time off. Well, the verdict of that from Tuesday's meeting is I am being given my 1st written warning which lasts for 12 months. I've honestly been struggling so much with my workplace. I tried to reach out for help about my mental state to a deputy and he ignored me and didn't care. I then twice in one week broke down to the other deputy. She offered more concern. But I am just at a loss.
I went to my GP last week and I take amitriptyline for pain and restless 30mg. She suggested I up it to 50mg for a month and see how I go with my mood and pain. I've only upped to 40mg because I'm worried about increasing to 50mg and needing to stay on it.
I work in a school and there is only one week left. So I am just trying to make it through that till September now. But I am worried about how myself I don't always feel. I'm hoping the time off work will be good for me to find myself again and rest and sort out little things I've neglected. But I honestly over the last few months haven't felt my lupus this worse in my whole journey. I obviously believe that my father's passing has made it worse. I had started to get slowly better from my chest infection, A &. E visit and viral infection. Lately, I've felt like I haven't got anyone and that I truly can't tell people how I feel pain-wise and mentally. The steroids have helped but I think I'm also disappointed I didn't get the steroid boost I wanted or usually get. The nurse told me if I find it hard to reduce to ring back again. So I think I will next week or the week after when I am off.
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LouLamb
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A lot has happened.Sorry to hear about the sudden passing away of your Dad. I think this is what is impacting so much.
I became ill after similar loss and found that the local branch of CRUSE helped. If you have not already contacted them, it may be worth giving them a phone call. I had 10 free phone sessions then more sessions offered if I want to go back
It was possible to talk about other things too. I think it helped with the stress and my well-being improved.
It is good its soon the school holidays, and a chance to reflect on that too. If they aren't treating you well, they don't deserve you. Often I had issues with work HR, once my GP even put them in their place. But sometimes I have found life really improved with a change of scene, and then I wish I had moved earlier.
If you think about what you really want you may see another job, which is nicer. Nothing to rush into but you might feel better and have other options if you are on the look out for something, related, but maybe a bit different in that it provides better opportunities.
The stress doesn't help. Only when I'm able to relax, eat well and exercise gently do I go into any sort of anti- flare mode.
Hang in there you have done well to manage so much. When you look at the tapestry from one side it looks a mess with all the knots. But when you look at the other side, it is a beautiful picture. You have achieved so much, in that your recent medical journey has been so up and down. Honour all this and reward yourself as much as you can each day. What you have achieved is really brilliant seen from the perspective of dealing with unwanted things in life. Take care. Wishing you the very best.🌸 🤗🙏🤞💐
I am so sorry to hear about the loss of your dad . There is no doubt I’m sure that such a shock would cause a flare 😔.
You’ve had some amazing advice from striatedcaracara and I agree that work don’t deserve you . You’ve got some amazing skills and they will all be transferable should you wish to change paths at ant point . For now though focus on getting through the final week and then using your time initially to care for you not others .
Sorry I don’t have any other medical advice I just know from experience any stress kicks our illnesses off and you’ve had a terrible shock . Big hugs , please be kind to yourself and share on here when you need to as it’s a safe place 😘xx
Just wanted to send hugs. You need proper helt for the mental health aspects - and your employers sound a right load ... Once upon a time there was a duty of care. xxx
Bless you. I am so very sorry for your loss. Sometimes the most difficult losses are ones where the relationship was complicated. It is no wonder that you are struggling. Reading your post made me angry at the lack of support you are receiving at work. Are you in a Union? Have you been referred to Occupational Health? You have an illness which requires support and planning. My guess is that your school is using the Bradford Score to record absences due to sickness and for someone with an incurable condition it just does not work.It actually penalises workers having short periods of absence. Please join a Union, and request a referral to OH.I hope the increased steroids help you. Be kind to yourself xx
I am in a union. And I have had OH done twice before and being referred again for it. My union man has helped so much. Me and him are appealing the first written warning decision in September.
I agree with Cecily, you are covered by Disability Act so should ask for OH assessment so that appropriate measures can be put in place. Also ask for an access for work referral so that you can be assessed for appropriate work adjustments. Beds to be clear you are not just ill but suffering a flare from a chronic illness. I would suggest printing out the Lupus Uk information for employers about their obligations.
Log all interactions following those requests as you have legal rights. Always blind copy emails to yourself as well as leaders so you have a record.
I was a teacher in a PRU and could do that with awareness and appropriate adjustments. The school has legal obligations to support you whether they like it or not.
I asked for an access to work and because of the size of the school and its a county council one my boss would have to pay for it and she refused in the budget.
YOU HIT THE “JACKPOT” for TURNING on LUPUS to the MAX 💜🫠😩
DEATH, WORK, ALREADY in a FLARE, STRESS, ………
Yes - prednisone usually will pop me back from a big flare UNLESS I am NOT lightening my LOAD - STRESS LEVEL will push you over and cause more deeper organ damage if you don’t STOP - MEDITATE- RELAX- “LET GO” - make arrangements for others to help with some responsibilities…..
I’ve seen this type of EXTREME STRESS cause major Flares and it can take MONTHS for some to get to feeling better-
Re-examining every part of your life-
No EXTRA ACTIVITY
No SUN
Don’t COOK - FIND QUICK “Healthy” alternatives, quick VEGGIE/Fruit Smoothies, already BAKED CHICKEN in grocery store & steam Veggie quick,
Call In GROCERIES to just PICK-UP ??
No excess energy in activities-REST “everyday for SEVERAL HOURS” after work, before dinner,
SARA GORMAN - BOOK
SHE-LEARNED the HARD WAY.
Despite Lupus: How to Live Well with a Chronic Illness
Reach out to FRIENDS, Family, WORK RESOURCES (as indicated above).
“MASSAGES” would help to RELAX your MIND & MUSCLES & get blood flowing CORRECTLY to your ORGANS
Acupuncture- could be another NATURAL WAY to bring BODY back in BALANCE.
And PRAYER for STRENGTH when you have none -
HE will carry you. We just have to ASK and God is always there to work through our WEAK BODIES. I have seen amazing times, when I couldn’t go another step & God reach out thru an odd Source that I wasn’t EXPECTING to lift me up & get me through.
I am so sorry to hear of your loss and the dreadful time you have been having. Your employer's do not deserve you! They clearly don't understand the severity of lupus. I hope you will be able to relax + focus on yourself over the summer holidays . Sending lots of hugs 🌷🌼💐🌻xxx
Im sorry xxxI work in a school, council one. Are you council or academy?
I asked for a referral to OH. I was assessed and a report with guidance, adjustments, etc was sent to my headteacher. When I had finally started to make her understand, she left new head came in.
So eventually I had a meeting with him. I did this on a good day so I was in the right frame of mind.
Showed him my occupational health report, asked if there was a copy in my file, he checked, there was. I asked him to read it while I was there incase he needed me to answer any questions re my condition. I pointed out OH had written in the report my illness comes under the disability and equality act .
I then forwarded my emails from nhs about tge boosters , antivirals, etc.
Finally I explained that when in a flare I varely know my own name, particularly first thing in a morning the symptoms are horrible. So I would not be able to talk, explain why I'm not at work so woukd he accept a call or a text by 7 am to say I'm ill and am explanation later in tge day when I've come round. He agreed.
I honestly had had enough. Felt like I going round in circles. So got my soldiers in a row, was well prepared and finally took a stand.
I'm in unison. I didn't need them this time but good back up.
I am a council school as well and I am in unison. I believe mine is trying to push me out and finding every way possible to because they can not flat out say because of my lupus.
Hi LouLamb, sorry to hear about your dad and your workplace situation. Losing a complicated relationship can be stressful, and we know stress is a big trigger for lupus flares! I must say it’s strange to hear about your workplace giving you a written warning for being sick…they can’t fire you for having an illness…hope you get some good support with that. I was off work 6 months last year with a bad flare, so I learned all about my rights then! (But I am in Australia, so check your rights where you are.)
Look after yourself. Try to minimise your stress where possible (easier said than done, eh?) and cut yourself some slack. You didn’t create this situation, and it’s not your fault. Hope you get some nice self-care today. 💚🌻🌈
I am so sorry to hear that you have been struggling with many areas of your life and the sad passing of your father. I can see you have had some replies from our members and hope you are finding the platform useful and supportive.
I have attached below some links to some bereavement and loss helplines that you may also find useful:
If you need advice or wish to speak to someone, you can call our helpline at the LUPUS UK national office on 01708 731251, which is open from 9am until 5pm, Monday to Friday.
So sorry LouLamb that it's all so difficult at the moment, sending hugs for the loss of your dad. Your posts are usually so positive and you've grown so much over the years! I sincerely hope work start helping you as they should. Take this break to have a well earned rest, and find support on the loss of your dad. Here's wishing you a brighter future that you so deserve. Take care
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