Hey Beauties, this month has various ‘Awareness’ days/weeks that are very close to my heart. I will be writing about all of the one’s that I suffer from and wanted to kick start it with ‘Chronic Fatigue Syndrome/M.E’. Something I have had for quite some time now. Please share to help others going through it or to help others understand what we go through.
How Does It Feel??
My eye’s are burning and dry as if they’re full of sand
I’m struggling to keep them open
Invisible weights are pulling them but I cant hold them up
My arms and legs aren’t attached to me anymore
I can’t feel them but I know they’re there
I can feel every pulse in my body
Even the ones I didn’t know were there
What is sleep anymore??
I slept 14 hours but it feels like I slept only 2
I just want to be left alone
Close my eye’s and wake up when it’s passed
This is just some of the way’s I feel whilst having a flare-up of CFS. It is extremely overwhelming and effect’s my mental health insainly. I can go from feeling great the the following day, having a flare kick in, absolutely miserable.
People often get labelled ‘Lazy’ when it comes to CFS. They think because you sit down or go to bed and have that nap after not doing much that you just cant be arsed to do anything. That just isn’t the case. There is nothing worse than waking up in the morning feeling absolutely drained, knowing you need to get up and do the dishes, get on top of the washing, do the ironing and you know it’s going to take you ateast 3 days because you physically haven’t got the energy. Just a few minute’s of sorting through the washing and putting a load on can feel like 2 hours at the gym.
Have you heard of the spoon theory?? If not let me introduce you!!
Imagine everyday you get given 20 spoons. Each spoon is your energy and pain threshold that you wake up with. Doing task’s is going to cost you a spoon. Some task’s may cost you 4 spoons!! Now you need to spend them wisely. If you run out of spoons you’ll end up mentally and physically destroyed for the next week, so think of any important things you have coming up that you will need spoons for to be able to do those things.
Below is a chart for an example of everyday things and how many spoon’s they could use up.
This is how alot of people around the world live their lives. As you can see from the chart, all 20 spoon’s could easilly be used up with not many activites!! Thinking ahead for that day out may mean you need to save up some spoon’s over a few days before to make sure you’re feeling well enough. People think I can be fussy or obsessive when it come’s to making plans and I’ve lost quite a few friend’s over the year’s due to either having to cancel last minute or they just find it ‘annoying’ that I need to know time’s and details in advance.
I wish nothing more than to be ‘normal’ but I know if I don’t plan my day’s right it could very well end up with me cancelling plans and ending up stuck in bed. This all plays a part with my mental health creating anxiety, panicking over ‘if I get enough sleep’ making sure I ‘don’t over do it’ beforehand.
I am thankful to have a small amount of people in my life that are very understanding of what my need’s are when it come’s to CFS. Alot of people who suffer from it don’t often tell other’s as they don’t want to be labelled as ‘lazy’, so if you know anyone who takes alot of naps or always complains of being tierd, try and be a little less judgemental. Some people don’t even know they have CFS untill they become bed bound.
Remember these little tip’s to help you through the days –
- Keep in mind the spoon theory, know how many spoons you have and what your limits are.
- Plan day’s in advance.
- Get to know your symptoms so you know when you’re reaching your limit.
- Remember it’s ok to say ‘no’ to anyone if you’re not feeling upto it.
- Dont push yourself, it will only make things worse.
- If you need to sleep then sleep!!
- Try to get a routine but don’t stress over it.
- Make time for you!!
If you know anyone with it then introduce them to the Spoon Theory, it could help them manage life alot better!!
Much Love – Mrs Slee-Jones xx
You May Also Be Interested In Reading –
Chronic Fatigue
Managing Pain Without Meds
The Physical Side Of Mental Health
I’m Not Ignorant I Have Anxiety
Dear Teacher
Helping A Child With Anxiety/Depression
What Is E.D.D
Thanks for sharing and teaching me about this x
Noproblem!! Thanks for taking the time to read!! xx
I had a housemate who is similar sometimes he will be fine and other days he won’t be able to see people had to give up a really good job and a phd because he couldn’t consistently do it but now he does voluntary research on his good days. Really struggles with people not understanding it because he can not do a normal job and some of the proposed tests for fit to work that came out a few years back were really worrying him.
I feel for him so much, it really is a frustrating situation to be in.
The spoon theory was really enlightening when someone told me about it. I’ve not officially been diagnosed with CFS, but it made so much sense for my life.
I think it can help with many different illnesses not just CFS 🙂
This was very enlightening for me. I don’t have this experience and I am not close to anyone who does but I have heard about it. Thank you for sharing so it can help others to have compassion for people who struggle in this way.
Noproblem, thanks for reading!! x
Omg rhi,,
You need to start a YouTube channel, youd get so many hits, you could do vlogs, fashions, storytime, itd be sooo good!x
Ahh I don’t think I have the confidence to do youtube haha!! I’d love to but don’t know if I’ve got it in me x
I agree she be the “boss girl” of youtube, do it rhiannon!
Haha Thanks!!!
Dear,
Just like you have detailed here, chronic fatigue is easily labeled ‘lazy’ – and it is not the case at all! I see it everyday as I work with lovely people who are the envy of others – yet they have no ideas what happens behind closed doors – away from the limelight!
Not every one has an understanding support system. But when you do, you cope better with this kind of fatigue.
People are dealing with very difficult things in their lives – but they put on their bold hats and go out each day to do exceptional innovations, running thriving businesses and do outstanding work of impact that sets them apart.
It reminds me of Steve Job’s quote:
‘Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes…
the ones who see things differently — they’re not fond of rules…
You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things… they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.’
So glad that you shared this. I have pinned and shared on Twitter.
H Emma | https://thextraordinarionly.com
Thankyou so much for such a lovley comment that really does mean the world to me!! I absolutely love the qupte that you shared, it’s one I will create a pin for for sure!! Thankyou for sharing and pinning it!!! x
The spoons really help visualize energy expenditure and fatigue. My mom has CFS, and her fatigue frustrates her. Every post you make about CFS will educate others so they can be more empathetic. Thank you for sharing!
Im glad you find the post’s helpfull!!
I don’t have this condition but I’ve heard of it and know of plenty of people that do have it. My old best friend from primary school had it and was off school for like half of the year. It was really difficult to understand, as a 10 year old, why your best friend suddenly couldn’t do anything anymore. This was such an informative post for me and I’m sure for plenty of people who don’t have the condition but would like to learn more xxx
I’m so glad you found it informative!! It really is a hard condition to understand when you’re not the one going through it. Thanks for your comment!! xxx
The spoon theory is very interesting, and something I’ve not seen before. I’m going to show it to my partner, she has fibromyalgia and quite often over does it one day, and struggles for days afterwards.
Awah I’m sorry she suffers with that, the theory works well for fibro as I have that also 🙂 I hope it can help her!!
Good read! My mom suffers from a disability and energy drain constantly. So I described to her what the spoon theory is. She may start using it!
Oh I hope it helps, please let me know it she does and what she thinks of it!!
Thought provoking for sure, great blog!
Thankyou!!
Thanks for bringing awareness to this issue. It would be so hard to live with chronic fatigue!
Noproblem at all!!
I have heard of the spoon theory but never quite understood it. Thank you for this easy to follow explanation!
I’m glad you found it easy to understand 🙂
Wow, the spooning information was brought to my attention recently. You have stated it so well. Some days I’m fine and ready to take on the world. I’ve socialized, hung out with families and by the end of the day I’m ready to crash. Don’t plan on me doing anything else that takes effort. I’m out of spoons.
Love the spoon concept. Thanks.
I can add from my experience ..on my really bad days I feel like I woke up and someone took my day’s rationing of spoons, so I have to go back to bed.
My daughter pointed out how well her iPhone functions when charged, not so much when it needs to be recharged. She encouraged me to think of my forced naps as “power naps while my body recharges”. I like that ; )
Keep sharing. It helps.