To ignore or not to ignore?: When it comes to... - LUPUS UK

LUPUS UK
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To ignore or not to ignore?

When it comes to illness - charge through it or stop and recoup? Curious about what others have found in their own experiences. What do you find is more effective in the long run? Thanks.

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I’m a great one for trying to charge through every time. I’m terrified of giving in to or pre-empting flares. However I wouldn’t advocate this approach for others - it’s just ignoring symptoms until I can’t is the only approach I know.

But then I’m in a sort of permanent state of not really believing my own autoimmunity -despite firm diagnosis and symptoms. Probably a hopeless case I think?!

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I've been trying to carry on like normal and then I notice it all catches up with me and I end up missing more time off work in the long run. I'm now trying to admit when I need to recharge instead of being too headstrong and downplaying my bad health.

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I used to “push through it” before I got a diagnosis, but I got a diagnosis because I landed up in hospital after pushing through it for years.

The pain team psychologist that I saw told me that you can push through a headache in a day, you can carry on work and push through a cold, you can push through period pain. But if you have an auto-immune disease and your symptoms start to flare up you can’t push through it because it’s your disease becoming active and flaring up and all that pushing through will do is make it a lot worse. Those were her words and I tend to agree.

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I resonate with all of your responses! I’ve pushed through until it flattened me and I’ve been feeling guilty for not getting up and pushing through again. I was scared that if I stopped, I might not get up again. It sounds like all 4 of us (and others) need to feel like we’re not letting it call the shots and so we push on. I’ve been vascillating between fighting it and embracing it - because after all, it’s given me so much compassion and it’s redirecting me back to myself. And I’ve finally decided what to do. I’m going to embrace it. And I’m going to kick FEAR’s *ss. Starting to see that Lupus is not the enemy; fear’s the enemy.

Thanks for sharing your experiences and for being a sounding board.

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I agree whole heartedly. I'm in 'acceptance' because illness just stopped me. But I'm still being diagnosed and getting "There's nothing wrong" answers. This pushes my mind back to square one. But my body is worse than square one.

Due to see Dr Hakim Wednesday and a local Rheumatologist soon after that. I have EDS. They've never sent me to a Rheumatologist before, only to the physio department of Rheumatology but insinuated it was a Rheumatologist.

So I'm hoping I have some diagnosis that allows me to be in 'Acceptance' It eases the conscious. 🌻🌻🌻

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Usually I just bash on through and find that exercise helps. This time, however, I'm on the floor with pain and exhaustion, ESR is very high and the more I do, the worse I seem to be. It goes against the grain to put my feet up but perhaps just once won't hurt . . .?

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...might even help. I say put your feet up.

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I’m same today Clare. Both my PV/ESR and CRP are high - even for me. When I collected my latest blood results yesterday (it’s the only visual evidence I have for how I’m feeling so I did insist on print outs!) all was normal apart from CRP of 21. My PV is presently 2.00 - which is very high.

Applying these to my intense leg and back pain really helps give me a reality check and forces me to accept that I have lots of inflammation in my body at present.

So I think some of us need these blood markers to help us accept or even fight it. I only ignore mine if I can’t find evidence of it in physical swelling or in my blood. My approach will be to sit and nap in the car all day as we are driving north. But we will stop off for lunch and I will climb up the track by a beautiful highland waterfall because my knees only hurt when I’m still, resting or standing - not when I push on through by exercising.

Until my rheum gets my knees x-rayed (hopefully) in 3 weeks time I’m determined that it’s all nerve and tendon pain and that, even with OA, exercise is key.

On the NRAS HU however, the rule of thumb re exercise seems to be that we rest painful joints if they are hot to the touch, puffy and swollen - but otherwise we should try and push on through with gentle exercise if they appear normal. Mine look innocent enough but they so don’t feel it! X

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I had my bloods done yesterday morning and didn't expect anything dramatic but, true to form, my GP phoned at 6pm to say that she suspected I would be very symptomatic with my high ESR. The relief that I felt was ridiculous, suddenly it felt as if it was ok to slow down a bit and be kind to myself. My feet are so sore that I've had to put orthotics in my walking boots and have been using them all the time but the pain is is from top to toes but nothing to be seen other than ?malar flush and swollen eyes. It seems to be the new 'norm' for me to have fewer visual clues - I guess I need to recognise this pattern.

At my recent rheumy appt, they told me that I was at the max amount of Mycophenolate that I could tolerate and steroid boosts were the way to make up for any lack of symptom control. The letter, however, told me that I get optimum symptom control from my 1.5g of Mycophenolate - this isn't true at all, I'm far from asymptomatic ATM. The letter also proposes my Hydroxychloroquine Holiday - if my SLE is under control as it could be a rare side effect that is causing my hearing fluctuations. I'm a bit annoyed about this as I clearly said that it seemed to occur during flares.

Sorry to have deviated. I'm still learning (even after so many years) that the only one to suffer from bashing on stubbornly is me and exercise doesn't always help at these times . . . Twitchy, I'm hope that your rheumy will sort out some X-rays of your knees and (?) hopefully they will be clear. Mine were completely normal which I didn't really expect but I'm glad not to have erosive joints. Safe trip to Orkney today xx

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Good for you.twitchytoes being positive.I wish I had your drive bit to much.happening to my body all at once im scared.enjoy your track.and waterfall .I think this sight is keeping me going.x

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Positive or just foolhardy?! X

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If I push through, I crash and burn. Pushing through a decade at work led to forced early retirement. Pushing through has cost me a LOT!

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We should all learn from what you've experienced. I hope you've gained some level of control since retirement xx

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I try and push through, it’s my stubborn mentality of I look fine therefore I am fine as nobody will believe me anyway. But there comes a point where my body says I’m in the danger zone and I end up off sick, doesn’t help I don’t gave understanding bosses. 2 of my colleagues are fab and they understand I’m fine means I’m not but I’ll keep going and will ask for help, 1 colleague is oblivious, 1 apparently knows all and tells me what I should and shouldn’t do and tries to use me as a stepping stool for promotion and my manager just says that they can’t adapt anything else like working in other branches as it will reflect bad on my capabilities and she constantly demands I drop hours as we are soon going to be over staffed. The stubbornness in me tells her no because I can’t afford and when 7 ask why she doesn’t say anything to the other members of staff I get told it’s because of my situation. Xxx

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I think some of us need to be believed in order to truly believe that we do have this invisible stuff. If others are sceptical of the impact of chronic illness then it’s extra hard for us to be guided by what our body’s telling us. It’s a case of denial breeds denial I guess.

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I think because I have a hard job accepting I’m actually disabled it makes it harder for others. But it is also complete ignorance on the management side as well as they see it as I’m off again. This time it’s a chest infection and management don’t understand with our types of conditions what is easy to get over for them is harder for me as by treating one issue I aggravate another xx

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I’m self employed so don’t have a workplace as such. But each time I’m confronted by any scepticism about the impact of my autoimmunity, I go back into a state of denial and do things which I know will cause me more harm than good. Basically I have a horror of being thought a liar or shirker and I think many of us feel this way.

This is why awareness raising campaigns by charities such as Lupus UK and BSSA and Arthtitis Research UK are so important.

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