Do you worry if/how you will cope living with CFS/me?
Can you 'not' see an end to this illness?
Are you feeling at a loss?
In this post, I'm going to share the ways that help me 'live' with my own CFS/me!
If you're here because you have CFS/me or even think you do, I hope on RuralGreyStar you find something that resonates and helps 'you' to spark 'Yourself' forwards...
Perhaps a family member or friend of yours is struggling, then omg your so sweet for trying to fig out wtf is going on, you're a star...
Feeling like a failure
Every day one of my main battles is to NOT feel like a failure to my family, or to myself.
Living with CFS/me makes me feel;
*Weird *Worthless *Sad *Anxious *Angry *Guilty *Lonely (not in a social way, just in the world) *Different *Random *Hated *Misunderstood
Then there's the pain of course;
There is literally no-where that doesn't;
*Hurt *Ache, *Twinge, *Burn, *Tingle, *Feel numb or even *Broken at some point, each and every day. *Random, pain that builds and pain that will take me to the floor in no time!
So how do I know my limits = I Learned (and am still learning) how to listen to my body!!!
Easier said than done, but I'm defo going at a better pace than I was 12 months ago (which was a virtual standstill, without the standing!)
Suffer again 24 hours later
If a part of 'your' body is screaming at you to stop, it may help to listen. If not, the chances are that you'll pay for it at that moment as well as 24 hours later, this can lead to being unable to function at a moveable level!!! & leaves me feeling;
*Sore/bruised feeling skin *Electric shocks, anywhere *Hips, seized *Migraine *Speech slower *Sore throat * Along with magnified symptoms from the list further up the page. It suck's baaad...
6 is what I class personally as a goood day. Never less than a 5. Regularly at a 9!
I jot the number from The Pain Scale in my little a5 page a day diary that I'm currently using. I was never able to track my pain before as it made me feel overwhelmed at where to start, so this has been perfect... Give it a try 'yourself'...
Here is a link to the pain scale I use to keep track of my pain in a morning, afternoon and evening. link = Pain Scale Chart
Try it, Print one off, stick it in the front of your diary and track your day's, simple method.
Here is a link to the pain scale I use to keep track of my pain in a morning, afternoon and evening = Pain Scale Chart
There are still days where I push myself too far, but its ok, I just start again. Forget what I didn't manage to complete and re-set my priorities. Which are mainly; *Kids homework *Planning/cooking food (which mainly is a bunch of crap chucked together and hope for the best they will eat it, by crap I mean omelette, noodles and cheese or Yorkshire puds, melted cheese and veg or Chicken, nachos and beans!) *At least one laundry load-ish.. I do delegate jobs to the kids who aren't always that impressed, but if I leave them to it they generally don't cause a fuss.
Helps me to 'not' feel like a failure
So not an extensive list above, to allow some energy for conversation, possible crafting and family needs, all of which are quite minimal but enough that makes me feel useful!
A few things that help my day
*Take a mindful shower - No other thoughts, other than how the water feels as it splashes all over 'you'.
*Focus only on 'you' - Cuddle up and watch a movie or craft maybe.
*Prioritise your day, minimalise it - Write a list, number it, go by it - Screw the laundry, but feed the kids kinda thing.
*Slow your pace right down - Rest lots throughout the day if you are trying to complete tasks, like, really lots.
*Inform others in your pain scale - This can help them to understand your limits and where you're at.
*Do not overwhelm 'yourself' - Don't take on to much and keep your environment calm.
I do my best to organise although definitely need to do better! Organising and planning is awesome but having Cfs/me limits how far ahead I can go. This irritates me, so when I have a 'blip' and can't keep too the plans made, the diary/planner (depends on which is currently the fave) gets left on the craft table and ignored until the 'blip' is over.
Then back to making plans, managing my time and sticking rigidly to the plan until, well you know!
Love Diaries and Planners... Teeny bit obsessed...
Over to you
What about yourself?
Tell me, how do you manage your pain, your time, your life etc?
How far ahead do you plan?
Have you accepted your illness?
Do you need to re-evaluate your life?
Whatever you do, Listen to 'your' body, CFS/me can and will take you down!
Have a look through RuralGreyStar if you made it this far. See if it gets 'Your' inspirational vibes going.
Take care of 'Yourself'...
Love Jorja x