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
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Managing Pain Without Meds
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I’m Not Ignorant I Have Anxiety
Helping A Child With Anxiety/Depression
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