I've been really ill for past 4 weeks especially with my throat and voice! I have had a high course of penicillin and it's still no better....I have been working from home as I daren't phone in sick due to my recent absence when I first got diagnosed
I am really struggling to accept what's happening to my body, losing confidence, friends and taking everything to heart. I love my job but recently I feel very vulnerable and that they are really testing me and pushing me over edge. I tried to explain I'm on altered hrs and duties but still due to workload working 40hr weeks even feeling like this.
I have spent all weekend on my own in tears and just feel so down and don't know how to pick up and fight............can anyone share their story and how you bounced back up please?
Thank you
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LSurtees
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Hello Linds: am v glad you posted...in my lifetime of this tough stuff, it's reaching out to others who Really Understand that's most helped me bounce back. I think you are a 🌟: it's taken me many many years to get the hang of speaking from the heart about these feelings...instead of just stomping them down into my soul where they didn't help anyone, especially 😉 me.
You ask how we bounce back...so here is a bit of my story: i think it's 4 months since your diagnosis & treatment process got going, sorry if I'm wrong. I just mention this cause, after decades of diagnostic ambiguity, those first 4 months were pretty overwhelming for me...the 'adjusting' I found happening in all aspects of my life was much more involved & unsettling & scary than I ever could've imagined. And I needed all the help I could get to stay on an even keel.
Fortunately I found this wonderful forum & my local Lupus UK Support Group coffee gatherings...these helped me begin to learn to be open, honest, accepting and less low due to my health...meanwhile I was continuing to see my Alexander Teacher for Counselling (she is also a qualified Therapist...if I hadn't had her, I'd have turned to my gp for guidance) and she was helping me to be more open, honest & accepting about how I felt my personal & professional life was changing (I'd relatively recently had to take early retirement/redundancy on health grounds which upset me a lot) .
So the 2 types of support (lupus uk solidarity & professional counselling) overlapped...and, gradually, through contact with lovely, supportive, encouraging people, i began to gain confidence, to accept & not be daunted by my situation and see my way forward '1 step @ a time'...and, yep, my bounce came back!
Still every now & then, something feels Too Much...and the pain is just as great as ever, but I tell myself: you know how to help yourself, go on forum & tell it like it is! this forum is The Best 🌟🌟🌟🌟🌟
I'm sure you'll get deeply helpful replies from many others here who've felt their way back to 'bounce'
For now, am sending you a big gentle virtual hug
🍀😘🍀😘🍀😘 coco
PS the other thing that helped me a lot was getting into reading Scandinavian crime thrillers 😉...they were being translated & published in great numbers at the time I started in the diagnosis & treatment process: I found I could disappear into them. The relief was tremendously therapeutic 😊...and I still turn to them when my health stuff is particularly challenging & I'm feeling low (like right now!)
It is four months since my diagnosis back in November so guess like you were I'm in that overwhelmed stage. May be I need to speak to my gp regarding some counselling.
I normally use work as my escape or my horse, however I lost him and finding work a challenge with difficult conversations and losing my confidence.
Funny you should mention using your horse as an escape....cause i'd almost made my reply even longer by adding that going for a walk 'in nature' (meaning somewhere like a park) or even doing a bit of very gentle gardening tends to help me get my bounce back 🤗
Yes, it would be worth speaking to your GP. They might be able to suggest several different approaches, so you can choose what suits you best. For instance, some areas have good support groups such as Expert Patient groups (for people with long term health issues) or for specific conditions (I've been in touch with someone from a Chronic Fatigue Support group who does home visits for instance). If you fancy some specific mental health support, there might be group sessions on mindfulness or CBT, or one-to-one counselling or CBT sessions in the surgery or community.
I've had to leave work altogether recently, and am very nearly housebound, so had to come up with some ideas of my own to keep the demons at bay. One thing that helps is setting myself achievable but meaningful tasks; another is pottering around the garden and watching the birds (I'm trying to train my garden Robin to take food from my hand!) ; another is having regular treats through the day to give myself a lift - a cheeky chocolate biscuit or a bubble bath....it doesn't always work, but I guess we can only do the best we can....x
Feeling tired, sick and pressure from work can get anyone down and make one tearful. I find it most challenging of late myself, more so recently, so it is helpful to read suggestions made to you and realise others feel the same way. I was trying to help my daughter this week with how to pay for college next year and I just couldn't understand the systems for finance here and they kept talking in acronym's, I was getting really stressed and finally took a long lunch to make all the phonecalls to varies folks to get on top of it...she a lovely person and deserves the best I can give her and sometimes when I have to rest I feel like I am letting her down.....Gosh I think we both need a virtual hug ........some fresh air and a DVD helped me today...being inside all week gets a bit down...take care of yourself....ml
Hi. I couldn't really share some motivational story because right now Im still stressing out because of hairloss. Yes it looks simple but its a problem for me because my hair is getting thinner. But, Ive experienced this and Ive got better before so I believe that I could be okay.
When I feel down, actually sometimes I look at the people who had the same disease such as selena gomez. I saw her being okay and we all know how great she is in her career. So it may seem cliche but I just look at her and see if she could do it maybe we all could do that too (not in the singing thing lol) but in our career choice.
I believe that we all could still have a career even though we are having this. My doctor said that some of his patients work in offices and being so great with that. I think we just need time to take a rest longer than normal people.
So sorry to read your having a tough time with your health as well as being newly diagnosed!. That can be a big shock with lots of TLC needed whilst you come to terms with it!. Had you been ill a long time prior to diagnosis?.
A thought you might like to consider is working less hours. I know you probably need to but working with this illness can be very stressful!. You might like to contact Citizens Advice who can do a benefits check to see what help you could get if you did reduce your hours. They will help you claim for any benefits as the form filling needs to be done in a certain way to maximise likelihood of success.
It's good your working from home, hope it's helping you. A lot of the lupus treatments can make us so vulnerable to bugs and make recovery slower too. Trouble is antibiotics don't always work for throat infections!. Have you seen your GP about them not working?. I hope you feel better soon, we can all do with Spring now, winter is a long season.
I have never been right since 19 always catching different virus and have other long term conditions which they are now linking to lupus. I am 38 now.
I have been to my gp several times as this has been going on for five weeks and it just won't shift. I have had to cancel plans and meetings. It's taking over my life.
I have appointment with Rheumatologist and neurologist on Sat so hoping they may change my treatment plan.
I'm sorry you have been ill such a long time and like me have collected other illnesses along the way. It's really tough when you want to do things!. Mine started when I was 14 yrs old and I'm now 44!. It's like being in the middle of a nightmare you can't get out of!.
Good luck for those appointments on Sat. Fingers crossed they help. Let us know how you get on. X
Please don't be alone - reach out for help - pick up the phone and call someone. It is such a "hidden" illness - TELL people you need them. It will help
I have to add something - I am having a dreadful flare because my beloved brother died suddenly just 10 days ago. If I sit too long I get worse - occupy yourself - even if you are not able to get out and walk - do crossword puzzles, play computer games - read a book or magazine. Do reach out for other people - they will be there. Do not give in, you are so young and there is a life to be enjoyed. Take pleasure in small things - give yourself a task and when completed reward yourself with a sit down and cuppa or half an hour of TV. It does work - enjoy nature - even in town - go and look at the spring shoots arriving - look up at the tops of buildings it is fascinating to look at things from a different angle - and last of all - my throats is bad so I suck Jakemans throat sweets (you can buy them in most supermarkets or chemists) and try Turmeric - go to Turmeric4Health - read their page - it has worked for me. You could mix half teaspoon of Turmeric in a Tabkespoon of genuine Manuka Honey and pour hot water on it, it really soothes, add lemon or ginger if you like. It sounds like you might have Sjogrens Syndrome with Lupus like me - look it up. Keep us posted. We are here, do not be alone.
I should think it did, terrible tragedy for you and your family!..Your previous reply to lsurtees had all the right ideas for getting thru.It was great. One day at a time is all you can do. TAKE CARE.x
I'm sorry to hear that you are struggling at the moment. Have your employers made any adjustments to help you manage better in your role? If you haven't seen our booklets about work and lupus, you may find them helpful. You can read and download them at lupusuk.org.uk/working-with... or if you need physical copies posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address.
Have you spoken with your GP about your low mood? Have they offered any additional support such as antidepressant treatment or a referral for counselling? If you need more information about support services that are available, we have a leaflet about lupus and depression at lupusuk.org.uk/lupus-and-de...
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Unexplained symptoms 
JUST NEED TO RANT!!!!!!!!!!!!!!
Disappointed and hopeless
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