Me

Me

Saturday, 26 October 2013

Flare up plan #fibromyalgia #spoonie

Its cold, damp and the clocks are about to go back. That means only one thing, I need to get my head into winter mode and allow myself longer to recoup energy and try to make sure what little i have is used for things i want to do and not wasted.

I have no amazing tips or wisdom, its really down to planning ahead a little.

Some givens:

-I will have a flare up.
-I will spend more time either in bed or my recliner chair.
-I will have more pain and less energy.
-I will spend more time at home and less out gallivanting.
-I know 100% I will get through it.

That might seem defeatist but it's not meant to be, this is my fifth winter, the first three were spent trying to carry on as usual and it resulted in ever increasing relapses and I don't fancy another one.

Things that make my life easier:

Lotions, Potions and pills
 If you haven't already, book an appointment with your GP and ask for at least two months worth of meds in case you can't get out - failing that make sure you are registered with your local pharmacy and get them to collect and deliver meds.

Stock up on a few things that make a different my personal list includes:
-Deep Heat
-Freeze gel
-Multi vitamins, especially B1 and Vit D
-Tiger balm - I find a little bit at the base of my head can help
-Extra medication


Upstairs, Downstairs (unless you live on 1 floor then its in 2 rooms)
 I'm either in bed or on my recliner chair when I'm at home - regardless of where I spend time, I make sure things are to hand as having to go up and down stairs or room to room just takes energy I don't have. So I have two duplicate boxes of everything- I keep one in my bedroom and one in the living room.

-Tablets etc - I have a pencil case with my meds in, I just make sure I have one in each box
-Bottle of water
-Cardigan/wrap/bed jacket of choice
-Something to read - mag, book, kindle, what ever
-Water spritzer for those hot flush moments
-Boiled sweets - I find it helps with a constant dry mouth sensation from the meds
-Notebook and felt tips
-Hankies

You can put what ever you want in it, but having things handy that are always there is great if you wake up and know it's a bad day and don't have to worry about trying to gather things together.

Do you think I'm sexy...
Getting dressed. I found long ago that the more lax I was about getting washed and  "dressed" the more it affected my mood and very quickly created a cycle which was very hard to break. I don't like the idea of giving up and reject the notion when it comes to positive choices like using aids etc but in this instance it's very true. The excellent fly lady website says get dressed to your shoes every day. The idea is simple, if you get dressed and ready you mentally prepare for action.

To adapt this for a spoonie day where you might want to be ready for action but paring it down and recognising this might be a flare up kind of day.

Wet wipes - yep I hold my hand up and say there are days when the mere thought of a shower is too much, even with carers. But if I can I have a proper wash.

Dry shampoo - see above but it does at least give you a sense of looking passable.
I don't wear makeup much so it's no biggie but I do try and moisturise.

Getting dressed, some days that's a big fat no but I own some lovely PJ's and Jogging type outfits, the comfy ones. Comfy knickers and those soft no wire bra things. Even if all else fails and it's a wet wipe kinda day - changing out of what ever I slept in into some nice jim jams/jogging stuff makes me feel better and reminds me to make that effort and be ready for action.

Snacking V real food
Its so easy to live on toast, and cereals when you feel crap - I know I've done too much of it this week, last week of term and me being off colour was never going to end well. But back to planning ahead even if you have zero cash having some basic tinned stuff in is better than toast.

Flasks - when I lived alone I filled a flask with hot water and added cuppa soup, tea bags and milk cartons (the little things you get from cafe's) to my box of tricks so at least I had something nutritious, taking meds on a totally empty stomach is grim. Plus i only needed to get up once.

I will get through it memory box
When days stretch into weeks it's really easy to think you will never get back on your feet, the flare up will become permanent and the little rays of sunshine are gone forever. Even if 99% of the time is hard, you still need hope it will get easier at some point or at least less bad.

our amazing anniversay trip to a posh resturant
I make sure I have pictures of good times around, videos I can watch and smile of good days. I keep in touch with people via the Internet and I love getting letters. I must ask this year for friends to send me letters, it beats the brown envelopes.
Plans, I love making plans big or small and it makes me happy.
I love motivational quotes and just being open to the fact I can do this helps.

Other stuff that makes me happy
Kindle
Laptop
Phone
Sewing stuff
China tea cup and saucer
Posh hand cream
Open windows and curtains
Stretches
Wobble walks
DVD collection of Sherlock Holmes
Miss read Books
Phone calls

One tidy space
I'm a bit of a clutter bug and not a naturally tidy person, but I do try hard to keep at least the living room tidy. When you live virtually in one room making it as nice and bright as you can helps oh and open the damn curtains, natural light helps.

This blog post has gone on for long enough, if you are newly diagnosed, or still struggling with boom and bust, it's not easy I know. Be kind to you, and while pacing is commonly used - planning isn't. I find I can manage more, feel better about me and generally cope when I plan ahead just a little bit and forgive myself when i don't. This list seems huge and when you feel crap, it's overwhelming but if you do one thing at a time you will quickly have your own plan, this just happens to be mine.

Please do add your tips and ideas - I'm sure i haven't thought of everything and it's always good to hear other people's stories...

Other people's tips and ideas...

-Travel kettle 
-Tray with hot drink making things and snack box
-Ipod with fave music
-Talking books *free from libraries
-At home library service *they will bring things to you and its a nice way to see people.
-Teasmaid - I'm very tempted by one I must say
-Lots of pillows *pretty ones
-Pretty bed linen/throws/cushions
-Mobile beautician/hairdresser 
-Skype - you don't need to do video chats but it's free and easier than phones

***and if you are reading this and are less housebound but know someone who is, then do send them a card or letter with newsy gossipy stuff in it or even a saw this and thought of you type thing. It really really does make a huge difference. 

I will add more as people send me them.
 




4 comments:

  1. My daughter has fbmy and l am always impressed with how she tries to be 'up'despite pain. Kids are helpful and l have huge admiration for her and you too for making life as normal as poss under diff circumstances

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    Replies
    1. Thank you :) I enjoy the moments, sometimes you need to take the game face off and im lucky i have my husband and people I can do that with. x

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  2. This is ace!!! I seem to be spending time between two rooms so will make some boxes up with what I need!! Thank you for sharing :) xx

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  3. I also have fibro and really identify with the recliner and bed as the two places I spend my time. I retired last February (2013) because my brain would just shut down and I would have no idea what I was doing or why. NOT a good thing when you are a Medicaid biller for a hospital. Being retired lets me do the resting to avoid most brain shutdowns but I still hurt all the time everywhere. Knitting and reading help me relax some but I just wish there could be more. My hat is off to anyone who has children and has to be anywhere at a certain time. Not one of the things I can do on a regular basis.

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Happy to have thoughtful, funny or imformative comments..abusive crap will be deleted