Sick with worry

[butterfly1964]

I am feeling really anxious right now, I am trying to keep calm, but having Lupus nephritis, although it is at present under control.

How are all you Lupies managing with the worry?.. 😞X

[Hidden]

butterfly, I think there’s a real mental process adjusting to all of this. At least for me there has been and things haven’t been nearly as bad for me as for many on this site. But you’ll get there. You’ll learn a lot about your disease, come to terms with a lot of things, fight through other things, but you’ll figure it out and you’ll get there. And on the other side, you will stop and realize how very strong you are! So don’t let it get you down, or at least, not too much. It is an adjustment, but you can do this, and you have this group to lean on for support. They’re great! All my best to you in your journey.🙏

[butterfly1964 in reply to Hidden]

Thank you for your reply, I have had Lupus for 22yrs and have had some worrying times, but have been relatively stable for awhile now.

The media has really scared me and would like advice from others regarding how they will deal with the situation..

I practice mindfulness and yoga, but the panic is still there.. jx

[Hidden in reply to butterfly1964]

I personally have gone to an alternative healer. The meds for life scared me. Side effects, etc. I’ve totally changed my eating and eating habits. I love yoga too, as it’s peaceful and is a good stretch for the entire body.

For me, this alternative route is working. I’m not 100% yet, and may never be, but I am overall, so much better than I was. Could be a fluke, but I believe it is working. Yet, we each have our own path, so I understand the use of medication. I actually use a medicated crane for the rashes, soaringly, but hopefully after all the supplements, etc., the rashes, which have vastly improved, will not plague me as much either.

22 years, wow! You’re a warrior! 🙏

[butterfly1964 in reply to Hidden]

Ha ha I wish I was a warrior, not so much.. 🙏jx

[Hidden in reply to butterfly1964]

Well, I think you are!

[butterfly1964 in reply to Hidden]

Best wishes to you too... We all have to get through our own struggles jx...

[Hidden in reply to butterfly1964]

Amen. 🙏

[Roarah in reply to butterfly1964]

I have a history of generalized anxiety and after my dh was diagnosed with Colorectal cancer and I suffered 2 strokes I started treatment for ptsd and GAD. I have combined therapies of mindful based cbt, acceptance and commitment therapy and EMDR ( eye movement desensitization reprossesing).

I am so much happier and calm now. After life filled of ruining today with fears of what might happen I am actually living well in the moment. Fear and anxiety has been replaced with happiness and hope. It has changed my life and I feel physically great too. I will continue with therapy for the rest of my life for like lupus, anxiety is a chronic illness that without maintance has a high recurrence rate.

[butterfly1964 in reply to Roarah]

Thank you for your explanations, I try relaxation, yoga, mindfulness and I still worry especially with all the media reports..

Best wishes and your story is an inspiration to us all jx🙏

[Roarah in reply to butterfly1964]

My thirteen year old came home from school today saying all her friends are so worried about the coronavirus and she calmly stated, " I just can not understand worrying about it for it will either infect us or it won't and worrying will have no effect on the outcome so why waste time doing it?"

I am so glad she did not inherit my anxiety gene. It has taken a year of reprocessing my thoughts to learn this simple fact. Worrying will not change anything but it will ruin today. I do believe yoga and meditation can be great for maintance health but sometimes it takes a trained professional to properly help us reprocess our thoughts to combat anxiety. We aquire a habit of worrying that after a lifetime takes profession help to break.

Stay well xo

[Hidden in reply to Roarah]

Wise daughter.

[butterfly1964 in reply to Hidden]

My goodness wise indeed, you have I am sure you can take some credit for this, she sounds very mature..

Best wishes and thank you jx

[Tinkabell555]

Sorry to hear this, it is pretty scary at times and like brook side says it’s all an adjustment and learning to live with the uncertainty! It isn’t easy but I find it helpful to focus on the here and now and take the good days as they come n really appreciate them! I guess we’ll never take the little things for granted again n talk to someone too don’t keep it to yourself, it’s ok to be vulnerable n let ppl know your struggling. Also have u ever looked at any mindfulness stuff? That’s pretty good for relaxation n u can do it in any form such as mindful walking mindful breathing mindful colouring mindful yoga. Focus on the things u can control n make sure u do one thing every day u enjoy! If ur worrying about things try to contain it to one part of your day n then focus on other things so it doesn’t take over ur day! X

[Lupiknits]

My heart goes out to you. This is a place where we can be ourselves and share.

I think the day at a time approach, as Tinkabell suggests, is one of many. If you get very tired, pace yourself as much as possible. Let others know about your health. In my case I then steer others away because I don’t want to be defined by it, or want to talk about health at the expense of other subjects.

Whatever you can do, in terms of mindfulness, helps. Everyone here is bored stiff by my knitting, but that’s my thing. There are other crafts, if you like them or want to try, a good book, an audiobook; all these can take you away from the worries that can whirl around. There are meditation tapes that help with relaxation.

Finally, if you feel the worry is getting you down, have a word with your doctor. 💕

[Hidden in reply to Lupiknits]

I second this response and ideas ,but would add for myself two of the most helpful things for.me : classical music and practising the presence and relationship with God through his Word , and His son , Jesus. As he said , he gives us

" living water" .

[butterfly1964 in reply to Hidden]

Hi rosiaz,

I agree I do get comfort knowing God is watching over us, definitely 🙏...

I also practice yoga, mindfulness and meditation, although at present, my anxiety is not good 😞...

Having a good day today though, God bless jx💕

[Hidden in reply to butterfly1964]

Ah , I do sympathise and must say this is an anxious time for me too. My husband and I have decided to more or less self isolate ourselves from enjoying usual family and group times . As we do not choose to have a car , not going on bus and train for country walks will also be missed.

I will remember you in prayers and wish you as much peace as possible.

[butterfly1964]

I appreciate your comments... Thank you jx

[new_panda]

Hi butterfly1964, I totally understand how you feel. I was diagnosed with SLE with lupus nephritis class3 3 weeks ago and went to my rhematologist yesterday, all my dosage is doubled as it’s active now. But the doctor seems confident that it will be controlled. This reassured me a little. Still worry and yesterday I almost passed out at tube station. It’s not easy but like everyone here says we will get through this. We just have to believe xx

[butterfly1964]

Bless you, thank you for your reply, we will get through it, we are strong together all of us, on here...jx

[Oshgosh]

I know where you’re coming from.

I have lupus ,alongside NSIP ( lungs)

I worry about my lupus,the lung disease.my kidneys.

I had to go for a creatinine blood test last week,As my creatinine was a bit high at my last blood test.

Also worried about the coronavirus.

I don’t think I’m coping very well,but. I’m putting a brave face on it? Hope everyone is coping ok

[butterfly1964 in reply to Oshgosh]

I thank you for your reply and understand your concerns, sending you my best wishes and a huge hug🙏💕

[Oshgosh]

Thank You

[Hidden]

Hi Butterfly. I too have been getting sick with worry due to media and a decision I’m trying to anticipate about whether or not I’ll be allowed back on immunesuppression in a few weeks time after a few years off it.

I have Sjögren’s and some form of Scleroderma overlap rather than Lupus, so they main risk is to my heart and lungs rather than to my kidneys - although I do also have mild CKD and an enlarged liver.

This morning I stopped worrying. I didn’t decide to as such but I just stopped. I think it’s because I had a crazy and really lousy day yesterday where I ended up sitting having late lunch in a cafe with two of my sons and husband. And I realised I wasn’t enjoying their company or listening to what they were saying - I was just too uptight about everything going on around me and was rapidly tipping into depression.

I know i want to restart Mycophenolate because I feel mildly fluey 24/7 all the time and my skin is starting to thicken. And these are bigger worries to me than corona virus because I know that I’m already quite isolated from others, my social life is more virtual than actual - and if I’m going to worry about anything it’s got to be stuff like bad finances and having enough food at home for 2 dogs and me and my husband so we don’t need to go to supermarket and can just extend our existing bubble of dog walks in quiet countryside, working in a large airy studio and warning friends to stay away because I have a compromised immune system.

But also life is for living. The sun is out, spring is starting here in east coast Scotland. I should have relaxed and enjoyed my sons’ company and my day out in the city. I can only live in the moment because immortality isn’t on the table for any of us human beings anyway and the best things in life are free so I must grab them while I can. Sometimes we can be so worried about something that may never happen to us or ours, that we almost step out into the oncoming traffic - as happened to me yesterday.

I mean imagine worrying so much about Covid19 that you get run over by a bus?!

So a different take on what others here have said but the gist is the same. Worrier of all worriers decides to stop worrying, wash their hands as described, stay away from direct with people as far as possible for the coming months - but still to somehow seize the day. X

[butterfly1964 in reply to Hidden]

What a lovely reassuring thread and thank you for taking the time to respond.

We are all in the dark here and worrying is so destructive to us. I totally know when you said you don't really listen to what was being said, when you were out with your family,.

Let us be positive, thank you lots of love and thank you jx💕

[Hidden in reply to butterfly1964]

🤗😊🤗

[Hope240220]

Hi,

I was diagnosed in December, right now it's making me tired and sore, especially in the mornings and evenings. It worries me too, especially as I'm starting a new job on Monday. But trying to stay positive! There are loads of groups in the UK, I'm going to one in Perth next Sat, hoping it will help to share and get advice, especially re diet and exercise (I'm a runner). Check out the Lupus UK site, and try not to worry too much.

Cath x

[butterfly1964 in reply to Hope240220]

Thank you for taking the time to reply, I appreciate it.

Best wishes in your journey and for your new job..jx

[Spotty-ewe]

Hi Butterfly,

I think one way to alleviate your anxiety is to prepare as best you can for the worst. We have stocked our freezer and also our store cupboard with dried and canned foods, long-life milk (which I hate!) in case the Coronavirus reaches our locality. If it does we will self isolate and if our stocks run low we’ll order from Tesco. Our medicines might be harder to organise as we live in a small rural community but we’ll cross that bridge when we come to it. I’m on Citalopram for anxiety but having made preparations for the worst scenario has eased the anxiety a bit. 👍🏻

I have an atrophying kidney, which can’t be removed because it has attached itself to other innards, and I have SLE and Raynaud’s. Hubby has a heart disorder and is waiting for ablation having had open-heart surgery 2 years ago. We are both in our mid/late 60s so neither of us can afford to get this virus and it is a worrying time. But we are trying our best to avoid it and preparing to self-isolate. What else can we do?

Take care and keep up the mindfulness - I find it helps too. 🤗😘 Spotty

[butterfly1964]

I wish you and your husband well, we will have to hammer down the hatches and get on with things, sink or swim 🏊🤔, it's good to know we are here for each other...

Best wishes, love jx

[Spotty-ewe in reply to butterfly1964]

Thanks Butterfly. I agree wholeheartedly that it is great we are all here for each other to encourage and prop each other up during difficult times. It is a huge comfort to know whatever happens the lovely people on this forum will be here for us, and us for them. 👍🏻👍🏻

All my very best wishes to you. Take care. 🤗😘 💕

[Seaheart01950]

When I was first diagnosed with lupus (I also had lupus nephritis, class 3), there was a sense of horror, grief, helplessness. I was so sick, and ended up being hospitalized for a week with lupus meningitis while my daughter was only 5 weeks old. It was so chaotic and shocking, like my life had changed overnight.

I was fortunate to have a good family support system and good healthcare. I finally went into remission. But the thing that has helped me is to focus on what I do have control over. I’ve educated myself about lupus. I am sure to comply with my treatment and appointments. I exercise regularly to keep my body strong and keep as active as I can (and to prevent osteoporosis from my prednisone). I use sunscreen and protect myself from excessive sun (though I don’t avoid it, it makes me happy!). I try to eat healthfully. I try to minimize stress (although no one can avoid it altogether) and find things that help me feel better when I’m stressed. I take the time to do things which bring me joy or peace. I try to focus on the things I have to be grateful for.

All that to say. although lupus can make you feel helpless and out-of-control, change the focus to all the things that you can control and make sure to take really good care of yourself. And if the anxiety is still overwhelming, talk to a therapist about it, they can really help.

[butterfly1964 in reply to Seaheart01950]

Thank you Seaheart01950,

We all have our stories on our Lupus journeys and yours isl one which resinates with us all..

Thank you for sharing and keep being thankful for your family..

Unfortunately I was unable to have children due to infertility problems which was Lupus related..

Best wishes jx

[Spotty-ewe in reply to butterfly1964]

I didn’t manage to have children either Butterfly. 😔 I lost 2 boys at 20 weeks and 22 weeks which at the time was a mystery to the medics but is now thought to have been due to sticky blood related to my Lupus but of course they didn’t even know I had Lupus back then. I went to train to be a teacher after my second miscarriage and all the lovely children I taught over the years in tiny rural schools were my family.😄 Not the same as your own of course, but I have happy memories of them all. 🥰

Love and best wishes 🤗😘

[Buffy14 in reply to Seaheart01950]

Hi , you have had a tough time as I have , I also have lupus nephritis type 3 , I'm told I am in remission even though I am still positive in bloods for lupus . You say you had lupus meningitis , I haven't heard of lupus meningitis , I almost died in 2011 from meningitis but nobody said it was lupus connected . I had an acoustic neuroma removed by surgery in 2008 and sometimes following this surgery you can get meningitis if you have a leak of CSF but my ENT surgeon checked and there was no leak at the time of the meningitis he said the meningitis could have been due to my immune system problems but no-one called it lupus meningitis although I must say that everything that has happened to me over the past 18 years I believe has happened because of lupus either directly or indirectly due to the drugs . The latest thing is I've been diagnosed with Kappa light chain MGUS which is very worrying , another thing to add into the mix and knowing my luck I will be one of the ones who's MGUS progresses to multiple myeloma or amyloidosis . Ah well no point worrying unless it happens .

[LittleSteve]

Hi Butterfly. Although it treats us all differently we all know that the anxiety about Lupus can be just as crippling as two broken legs. It has taken me years to come to grips with it and one of the ways was by letting go of the things I cannot do anymore. I fixated on not running, working, socialising, keeping up etc and got more and more anxious about how limiting lupus was becoming. Once I got my head round concentrating on things I Can do, however small, that brings a little more peace. None of us know what tomorrow brings whether we have lupus or not. Today I managed to get out of bed, wrap up warm and have a coffee in the garden listening to the birds. Bliss. I hope we all find our little moments of calm in the madness that is living with lupus. 😊

[Hidden in reply to LittleSteve]

Well said. We all need to find joy in our journey.

[butterfly1964]

Wonderful words and we have to find solice in the good things ie nature and our hobbies whatever makes us happy.

I know we have all made many adjustments to our lives since our diagnosis.

My life changed considerably, now it's about pacing myself and doing what I can on the good days.

Best wishes.. jx