If you’re so sick, why are you here?
It’s a question that hardly anyone has the guts to come out and ask me, but one that is definitely on their minds whenever they see me out and about. I’ve got to admit, it’s a valid question. I certainly don’t blame them for wondering.
When I was healthy the only experience I had with being sick were days I confined myself to bed. I remember seeing a friend with a chronic illness out mowing his lawn and thinking, “He’s totally faking it. How could he possibly be sick- he’s mowing the lawn!”. As if I had any reason to believe my opinion meant anything back then. The only authority I had was from the PhD I’d allotted myself in Arrogance. When I became chronically ill myself I realized there are more options to feeling sick than simply being stuck in bed with the flu. To understand chronic illness as a healthy individual there are a couple things you need to know.
First off, while my fatigue can be compared with the fatigue that comes with the flu, it’s just different. It works different and feels different and can really only be completely understood with experience.
Secondly, I’m just plain tougher than healthy people are. Sorry guys, but it’s true. When you feel sick for years on end you just learn to function when you feel horrible. What would put others straight to bed is just an everyday occurrence for me.
Because I don’t want YOU to have to learn from experience (chronic fatigue is not something I would ever wish on anyone), I’ve made up a little explanation complete with pictures. 🙂 I hope it helps you understand a little more how Chronic Fatigue works.
I also hve CFS & Fibromylagia & hve had it for years! I would like too communicate with you & others who like me, deal with this disease day in & day out. How can I get. In contact with you? My e- mail is [email protected] Thanks!
thanks for the comment Donna! I’ll shoot you an email 🙂
Super duper, excellent post!! You described it so well.
The only thing that’s missing in that picture is the difference in reserves and recovery in healthy and CFS challenged people. If a healthy person goes into their reserves they recover after a nights sleep. If we do we crash and burn and then we have even less beans for anything from a couple of days to months.
This is so true! It would make a good diagram on it’s own!
This should be used in a poster format for GP surgeries, in schools & in the workplace as an awareness campaign. Really good explanation.
Thanks Susan! Getting a good printable format is on my To-do list! Unfortunately we just moved and I am definitely crashing from all the extra work 🙁 hopefully in the next few weeks I’ll be up to making files again!
A perfect link for my Facebook page for awareness month. Thank you.x
thanks Lorraine!
Yep. Don’t I know it. That lawn needs doing again among a host of other chores. It may mess up the next few days but there are standards to keep up dammit!
Hi Jessica! Your website has been SO helpful to read. I have ME/CFS and it’s so nice to read about someone else who actually understands what I’ve been going through for years (and how to articulate it). I was trying to email you but couldn’t find any links. My email is [email protected] (yes, really) and would love to connect. -N
i agree with the comments here it is good to read about someone who understands when close family really don’t.Oddly enough i never realised how bad i was feeling until i started to get better. Two years ago for about 10 years i was totally housebound and bed bound on occasion. But now i’m heading for college and trying to sort my timetable out so i don’t put myself back. It’s only really now looking back at myself i realise what a state i was actually in. i guess i didn’t have the energy to think about it so i didn’t and just got on with what i could do and now looking back it’s like – how the hell did i manage to get through that without going totally insane.
I have just recently(3 days ago) been diagnosed with CFS after being sick and not able to work for 6 months. I am trying to learn as much as I can so I can figure out what to do to get better or at least get somewhat of a life. Any words of wisdom? It helps to read everyone’s comments – thank you!
Patty- I’m so sorry to hear about your health! CFS is so different for everyone- I wish I could give you a list of things that would definitely help you. Here are some things that have helped the most for me- maybe one might help you bit!
– Pacing is huge. It’s important not to over do it when you feel well. Also, I’ve found it’s important to do preemptive resting (I’ll lay down for 30 mins BEFORE I do a big activity and it seems to help get less of a crash) I heard once that the way to pace yourself with CFS is to make a list of the things you absolutely have to do to survive, then cut it in half. It’s kind of a joke… but kind of true 🙂
– My CFS is correlated with POTS. It seems like a lot of CFS patients find they have autonomic disorders. It might be good to get that checked out, some autonomic disorders can be treated easier than CFS (some can’t- so don’t get your hopes up too much, but it’s something to look into)
-Physical therapy is so important. You can’t over do it, but if you lay in bed for years on end your body will grow weak from disuse. Find a therapist who believes you’re sick and won’t over work you. Your ‘exercise’ might just be lifting your legs while lying in bed, but it will help keep your muscles strong.
I an a physical therapist & a survivor of CFS for 18 years. Every patient is different & every day is different . PT with a therapist who understands your condition can be super helpful. So can cognitive behavior therapy. Not because there is anything wrong with you, but because once CFS affects your life you have to pace yourself & change the way you deal with every aspect of life… Don’t let CFS control you. It may be here to stay, but it doesn’t have to be who you are.
I could write a book on all I have learned & am learning. Every aspect of your life- spiritual, relational, emotional, physical, mental,,…stress, sleep, nutrition, etc. – affects your CFS. My biggest lesson – Be Still & Know…