Can anyone give me any idea of the recovery from a Flare …..am into 4th week now and just beginning to feel like eating, need to regain my energy etc
It was so grim initially that had to employ a carer as live on my own!
This is the first flare have had!
Any advice very welcome!
Flares work to their own timescale, there is no set time. The main thing is to listen to your body and not rush to do things. Speak to your doctors so they are aware of your difficulties and can check blood levels etc. Try to eat well even if it’s microwave dinners as poor nutrition will not help. Begin to pace yourself to do a few activities each day even if it is just showering, dressing and sitting for a while. You will feel mentally better if you feel you did something. Mainly be kind to yourself.
Many thanks, v helpful and reassuring.
The first unruly flare can be so overwhelming, so as Hamptons brilliantly shared, you must listen to your body, focus on nutrition and be patient. I was also told that, and this is dependent on the severity of your symptoms but gentle stretches everyday for a very short period of time, helps as well.
Another thing to look out for is if you have a temperature, you should seek medical assistance. Hope you have a thermometer.
Lastly, I've also found that flares provide me with a perfect opportunity to observe my bodily signals. For example, for me, I get severe migraines or a strange (don't laugh) body odour that wont go away even after bathing. This is happens all before other symptoms manifest. By noting this, when it happens again, I can ensure that my lupus care kit is in place and this includes, comedy films/tv dramas because the depression or even low mood can also be crippling.
I know it's probably difficult to take in loads of information right now but for now, and what I always say to myself: BE GENTLE AND BE KIND TO MYSELF or if I become tempted to rebel against the flare, I then ask myself: BY DOING THIS, AM I BEING COMPASSIONATE TO MYSELF? The answer is always no!
Hope this helps and take great care of yourself
Thanks, another helpful response…..loss of appetite is a big problem ….thanks again.
Ask the carer to blend you a fruit and veg juice, perhaps and drink it through a straw? It is quite filling, believe it or not. If I want something warming, I then opt for miso soups - the individual packets. Boil the water, empty the sachet and pour the water.
Hi Provence, it’s so hard to give a timeframe for flares, I’ve had flares last anywhere from hours to months at a time. I’m still recovering from a recent 6-month flare.
When I’m flaring, I take extra painkillers, slow down my pacing, plan for more rest time—which sometimes means cancelling or rescheduling appts, and remind myself that while flares are outside of my control, my response is within my control. There are lots of things I can do to ensure I recover well. It’s hard, and often disappointing, to cancel plans—believe me, I know, I’ve just taken 6 months off work!—but we’ve only got the one body so we have to listen to it.
I wish you all the best, and truly hope this flare is not a prolonged one for you. 🌻🌈
Hey Provence - I'm so so sorry you are going through all this.. I bet you are usually a very independent person... I know I am, as much as I can be.
I have had two nasty flares in the last 5 weeks that lasted a week each... Intense. There was no thought of going to appts or going out period... the body just tells you, actually demands you, to rest, rest, rest. But, yes, you must eat and drink as much water as you can. The only thing I could do was not worry too much about struggling to shower, just had a little strip wash for the 3 days I could do nothing really (I couldn't really bend or even walk well) - it doesn't matter too much as long as you keep your nether regions clean to minimise UTI's and all that. But I ALWAYS make sure I have my little freezer stocked up with frozen veg (in my case spinach balls and green beans as I can't eat broccoli and things anymore due to iBS type stuff) and frozen fish, frozen fruit and all sorts.. so I know if it happens, I can pull on that lot.. I can put that in a saucepan, with the fish, and some wholemeal noodles and splash it with some Kikoman.. that is yummy and easy to make.. a lovely warming and substantial soup. Then I always have bananas and kiwi every day, and cantaloup melon I cut into slices and store in the fridge in containers.. so good for you. So I don't need to shop myself. but I order an Ocado and ask them to bring it up the stairs.. and realise I need to do that every week now, as, as I am writing to you I realise another flare is coming. It's s very distressing, I know.. but we know it will pass.
Have you friends in the area to help more with things generally? And you say you got carers in - so well done you. I did note your age (I hope you don't mind me saying, but even without Lupus things will be getting a little more difficult eh?). So I would say keep the carers going, and that means you do nothing around the house any more (I am going to organise regular cleaners from now on..although I haven't done it yet!), regular food deliveries of high nutritious food... no stooge, no white bread, no white any thing.. no good for us..leeches the body of our vitamins. and water all day.
Also I watch films and things I know cheer me up, never anything sad and too REAL.. Last night I tried to watch Blondie (the harsh biopic of Norma Jean).. well, I got upset, and probably helped bring on this flare.. so I won't be watching the rest of that or the news or anything difficult to deal with. We don't have the bandwidth to do that when being taken for a lupus ride, eh?
Make sure you have friends to talk to about it, and don't talk to those who don't understand.. I know that can be difficult to do, but the ramifications of "not being heard" are one of the reasons for one of my last flares... along with trying to do too much..
So - to get over it, rest as much as you like, sleep 12hours or more if you like, do not use an alarm, make sure you can sleep (that might need medication from GP and ear plugs!), eat highly nutritious food, fruit and veg, every day.. drink 2.5litres of water a day (unless some issue there), have carers always now, and ensure you don't have to do anything that they can do for you... and get a PIP or whatever - Age UK will help you if you call them... and Lupus UK! Just give them a call really... on Monday... as they are the best source of info.. and have you all the good stuff such as an over bath bath board? Great to sit on whilst showering with your attachment.. you could have social care come and do an assessment.. all free. Oh, and let your GP know this is all going on, if you haven't arlready... he can make the referral to social care if you like? And one last thing, make sure your Rheumatologist is very aware.. keep a diary.. but just call the rheumy nurses if you have them in your area?
Hope all that is ok to say. Basically, prevention (and preparation in case it happens) is the key here.. and whilst you are in it, have the care you need, on top of your carers, from friends and family if you have them around. Oh - and know it will pass... but recognise this might be a shift into something that your body is telling you needs to be addressed permanently going forward, to limit further really bad flares.
All the best to you, please let us know how you get on.
D
Or Cook are really good - you can order them and they deliver ready to use or keep in the freezer... all good stuff like you'd make yourself.. Or I love Bol soups... delicious!
Hello, I do hope you feel better soon! I have had a flare for 3 months at times I felt better and then would feel unwell again by evening time. It was a rollercoaster of emotions and I was bed bound literally. I was told to rest. Now if I get a bad flare I have an emergency pack of steroids which I’m thankful for. At that time I was only taking Hydroxychloroquine. Now I’m on Methotrexate which has helped although I have moderate myosotis so my muscles are tender and ache.
I agree with all the advice given. I will also suggest to use ice packs for the inflammation whenever it's burning. Eat foods that are pureed or juiced because of your jaw. Nature and meeting with people helps - it gives me something to look forward to. I like to leave music or an audiobook playing in the background so I'm not left alone with my thoughts.
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