How can I own this disease instead of it owning me 😞

[Kelihunt41]

I have Lupus for 9 years and I’ve managed to live with it for most of the time but just lately I feel like it’s running my life instead of me running it. I wake up with plans to do things then I lay there feeling unable to move due because I’m so tired and then I get demoralised and end up doing nothing. Any tips on how I can get over this funk?

[suzannah16]

I wish I knew. All I can say is we all go through it and somehow come out the other side.

[KayHimm]

You might want to talk to Lisalou. She describes this struggle well.

Oh, I do feel feel for you. Sometimes our illness is all that matters.

K

[Paloma25]

Yes, it is so exhausting and discouraging when this happens. I am reading a book by Toni Bernhard called How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. I find her suggestions help me see behind the edges of discouragement and not get stuck there.

[Roarah]

I wrote almost the exact same question at the exact same time as you! I so want to be like Michael j Fox or Christopher reeves but find my anxiety and negativity creeping back at times. Right now my husband's three year rectal cancer scans are happening and my anxiety and negativity is very heightened and then my stroke deficits seem worse than when my mind is calmer. I have been greatly benefitted by CBT mindfulness therapy and find meditation, yoga and daily walks are changing my mindset.

Practicing my CBT skills has allowed me the ability to shake things off better but it is kinda of a daily chore or job. I want to add joy minus the work. Sailing and yard work are my go to fun activities but for most with lupus those are taboo and in the winter I have a hard time finding joyful activities. What activities do you enjoy while well. Maybe we could brain storm for ways to modify those to spark some momentary joy while down.

[Buckley123]

I’m not sure this will help I’m awful at explaining things.

When my mum died I turned my Grief into gratitude 🙏 try and find the little things in life I am great full for.

From that I use pain as a good sign I can still feel and try to give a reason for my pain like if my muscles ache I go to the gym so they have a reason to ache.

I picture my muscles becoming stronger I also do all the things my mum loved and can not do even if it’s one a week!

I also Liston to music and sing weather it makes me cry or laugh( I am a bad singer) I find this lifts my mood. I eat right and take all my vitamins and drink plenty of water 💦 except days that you need to slow down xxx

[Buckley123 in reply to Buckley123]

Ps I was still awake at 2am crying over my mum

I have days when I think f*** this this isn’t fair

But that’s okay too.

We are only human ❤️

Not sure if I’ve gone off course here sorry to ramble x

[Roarah in reply to Buckley123]

(( buckley ))😢

[Buckley123 in reply to Roarah]

A heart that is broke is a heart that was loved ❤️

[Roarah in reply to Buckley123]

That is beautiful!

[Buckley123 in reply to Roarah]

When you think about it there is no other explanation for the pain xxx

[Hidden]

I’m so lucky because I’m an artist so I throw all my “funk” into my artwork. If I feel too crap to leave home I have a spare set of drawing things and I doodle or do whatever I can to vent my daemons onto paper this felt tip way 😈

Have you any private passions you can indulge in on bad days perhaps? Do you like writing or drawing, colouring, crafting eg stitch, collage, knitting, listening to favourite music, radio or plays - iBooks etc? Or do you play an instrument or enjoy singing?

My superhero is Stephen Hawkin so, when I feel the autoimmunity or related health problems and pain are taking over I think of him and focus on using felt tip pens to try and try to visualise the invisible sensory symptoms afflicting me. The nearest I can get to his work on black holes!

This works for me at least.

I really hope you can find a similar way to harness your Lupus suffering creatively or in any way that helps you. Xx

[Hidden]

PS CBT is meant to be good for helping us develop coping strategies to manage pain and chronic illness.

But if you’re in UK it can be very hard to access it and NHS referrals can take up to a year or more in Scotland where I live. There is a phone service for general CBT here but I have tinnitus relating to hearing loss and hate phone calls!

ocduk.org/overcoming-ocd/ac...

nhs.uk/conditions/cognitive...

[Lisalou19]

Hello kelihunt41,

As Roarah said she practically wrote the same post. It’s an impossible dilemma to solve , solely on your own.

We get so bogged down with feeling poorly , run down, exhausted and no real buzz for life . How do we begin to bring that buzz back when without realising we have created a non buzzing life. (Hope that makes sense)

I made a self referral for cbt therapy, I’ve had to wait since January so there’s no over night answer but there is light. Can I just express that my comment is not to bog you down with my therapy jargon. For many the word therapy can trigger the brick wall defence.

How I’ve changed my daily life. I now makes plans and stick to them, this has really got rid of that morning feeling “today is a bad day”. Once that thought is planted , that’s how the day will run, bad. With making plans I may still wake feeling yucky but sticking to them plans allows room for “I had a nice time” “that was fun” if we create these little positives we can create a better overall feeling within. I could never get myself to this point so I’ve definitely needed a little kick up the back side.

Everyday, do something that makes you feel happy and something that gives you a sense of achievement. Even if it takes 5 minutes, even if it makes you feel tired at least there is room to sit back and reflect on something that allows you to feel good.

Xx

[WinterSwimmer]

I prioritise the things I love above all.

I’m very familiar with the whole routine of ‘waking up with plans and then letting the day waste away because you feel so exhausted’ - so when I am like this I try not to over-plan but to achieve just one thing every day (so at the end of the day I can think back and say - I have done x). If things are really bad - that one thing might just be a short swim - which always lifts my mood.

Hang in there. It will pass (but just maybe the way you feel is a sign that something has changed with your lupus and you need to talk to your specialist).

[Djlr in reply to WinterSwimmer]

I totally agree.

Most of the flares we go through, will pass.

We need to keep that in mind, and just go with it and “give our bodies permission” to rest a couple days and not push and do anything until we are coming out of the flare.

But if it is definitely something new and something you cannot kick on your own by your medication, means of meditation, music, art etc. then yes “call your rheumatologist”.

It could be something they can help you with because it could be a new variation to your Lupus that needs to be addressed.

Don’t go too long without making your rheumatologist aware that you are having a worse “than” normal time of living with Lupus.

We do all understand 🙏💜🌷

[Kelihunt41]

Thank you so much for all your advice. I know I mustn’t ask too much of myself and it’s ok to rest. I will try and do one thing a day, even if it is getting dressed to gain a sense of achievement. Thanks again for listening. Keli xx

[WinterSwimmer in reply to Kelihunt41]

Sometimes, getting dressed has been my achievement for the day

[DJK99]

Hi there - so sorry to hear you are feeling this way. I know most on here feel like this from time to time. I certainly do. I had 6 sessions of psychodynamic therapy last year and it really helped me realise I had to come to terms with it... I accepted it. The therapy also made me realise I needed to stop working somehow. I was killing myself with utterly no work/life balance, crying all the time. And I did that, about to be on a v small pension (I’m 56 now). I had another 6 sessions this year and therapist said I am grieving for my old life. Again, I have come to even more acceptance and even have a sense of calm about it at the moment -although that can come and go! I realise now to take each day as it comes... I do plan, but don’t plan too much, so I don’t beat myself up if I don’t feel up to it. Happy if I do one thing from my ideal list, however small. Acceptance is key, I feel... I’m downsizing my life too. Moving to smaller place, so I don’t worry about keeping housework on top of so much where I am right now, which is too big. Friends know I can’t do much so I am at home most evenings unlike when much younger , and as for my very personal life, I’ve given up! But I have accepted this now... I don’t know how old you are mind, so hope the above is helpful and appropriate. What does your rheumy say about trying different meds? I go on low level predisolone )5mg) for a while now and then which helps, but methotrexate is the only major med I can take as allergic to hydroxychloroquine. You sound down, so maybe some sort of mood enhancer might be worth trying? I do try and stay active - even when my bod wants me to stay in bed - but it’s a matter of degree ie do as much as you can.. and obviously if my joints are really up the spout I take anti inflamms and know I will be better soon, so it’s not the end of my keep fit regime, however minimal it is these days. I’ve always been into keeping fit, having a v nutritious diet, drinking lots of water, and trying to limit the baddies such as alcohol (pretty teetotal these days as makes me feel v rough). I take lots of vitamins - high b complex, vit c and magnesium/calcium/zinc combo which is a life saver as totally gets rid of bad leg cramps. Chrondoitin and glucosamine are meant to help too but I stopped after some surgeries this year healed. Expensive all this! Do you take Vit D3 as prescribed? Supposed to be essential for lupees I think. Also have you tried anything like natural remedies - Bach Flower or homeopathy? Might be worth a research or pop into Neals Yard or H&B for a chat? Anyway, all I can say is everyone on here is very supportive - oh and the Lupus UK factsheets on the site are really good too - one on fatigue and another on depression. Or call them for a chat... I spoke to Paul a year and a half ago and it really helped as I was v down/feeling helpless. Hope that helps Keli. Sending gentle hug. D x

[Hamptons]

When it’s bad like that I find making victories however small gives a lift. So, trying to achieve one thing on my list however small. Getting dressed, sitting downstairs not upstairs. Just makes me feel I have stuck my fingers up to lupus. I find one victory can then slowly build to two etc.

Mainly be kind to you, don’t push too hard and know that they are called flares because they come and go. Just stay longer than we’d like.

Be who you are even if it’s ant world scale for a while. Do things that make you smile

[damage]

I feel the same way. Please reply ********

[Paul_Howard Partner LUPUS UK in reply to damage]

Hi damage . I just wanted to let you know that I have edited your email address out of your post. As this is a public forum you may not wish to share your personal contact information in comments. If you wish to give it to someone then I would recommend doing so in a private message.