Prepare for a Flare!

[WendyWoo50]

I’m not being pessimistic but let’s face it it’s going to happen one day - so why not prepare for a flare?

I thought I’d share this - it may help you!

On a pain course I went to they told us we should prepare for a flare. They advised we get a nice box and put in it things like:

Music, meditation music or led meditation, colouring kit (colouring or drawing helps take the mind off pain) , a favourite boo ( if you have read it before, it’s easier to re read), a magazine, bean bag (to heat and place on your aching muscles), a rub - like deep heat, a pack of soft tissues, a list of people who you can phone when you are down or in pain (we often forget to reach out when we need support), basically put in it anything that you find helps.

They also suggested we write a letter to ourself telling ourselves that this flare will pass, and listing what we have found helps us in the past.

It also helps to have some good quality ready meals or preprepared meals in the freezer so that we can eat well when we aren’t able to cook.

Recording films or programs (having DVDs or memory sticks in the box) and keeping them for when you are in a flare is also a good idea.

But sometimes I understand we feel so bad the pain takes over and we can barely get out of bed and we just have to lie there and wait.

I hope this helps you. When in a flare we just need to try to stop fighting and focus on looking after ourself. So... Pamper yourself. Even book a pedicure or manicure at home to help or a massage or complementary therapy. I even put on a bit of makeup and some jewellery - I don’t care what others think - it makes me feel better.

Try not to allow yourself to get depressed because soon you will be looking back on all this.

Namaste 🙏🏼 Xx 💋

I’d be happy to hear what others find helpful when in a flare or what you would put in your box. 🤗

[Lure2]

I must be unique (am I or what is special with me?) but I must say that I do not know what a flare is. I am primary APS (only APS but triplepositive with persitantly very high titres all the time) as my Rheumatologist thinks but as long as I keep my INR in range I feel rather good. If it drops I get first of all neurological symptoms back. That is probably why I always talk about the INR and how important it is to keep it in the correct level.

I put in my box exercise, healthy food and try to enjoy life as much as I can. I will be 75 very soon.

Someone else like me?

[KellyInTexas Administrator in reply to Lure2]

You are incredibly unusual! ( lucky!)

[Lure2 in reply to KellyInTexas]

Am I unusual? We have too sticky blood. I just try to keep my INR in target all the time.

[Anabanana25 in reply to Lure2]

I hope to be in your shoes as and when I manage to get on the right meds.

[MaryF Administrator]

Yes I always prepare for flares, as they are unpredictable, some are not with me, but most are, I always have food in the freezer. Thank you for the timely reminder. MaryF

[Anabanana25]

Good tips. I keep meaning to keep a self care pack at work with similar items but to help if I'm struggling and can get by with a bit of help.

[Fra22-57]

Look on the bright side.if a flare comes it comes.I try to eat well and exercise a little and more when feel stronger but luckily I have my husband to look after me and I find rest is a good way of mending and time.Time I find the most impatient with as as I want to be well and get planning for holidays etc.mind you planning that stresses me and makes me ill...lol

[KellyInTexas Administrator in reply to Fra22-57]

🤣🖐🏻

[Kerlampert]

Great ideas! Thanks!

I will try these suggestions. I think I'm "semi-conscious" when it happens and I don't remember too much. It's been over 20 years. Mostly gone since menopause.

Thank goodness.

I'll add that I'd write a letter to give my doctor in case I cannot talk, and have my "Five Wishes" document up-to-date.

Kerstin from Hawaii

[WendyWoo50 in reply to Kerlampert]

Hi I hope today is a good day. Reading your reply, what is the five wishes document? I’ve never heard of it. X

[Kerlampert]

Aloha,

Five Wishes is a booklet which describes your wishes for end-of-life treatmen... eg

"The person I want to make care decisions for me when I can't", etc

It's good in 38 states.

I wish had a way to attach a photo....I could copy it and send to you.

Kerstin