CFS Is Like What Exactly?
February 25, 2007 by laura
Filed under Diseases & Conditions
When I am having a bad CFS day, I feel like I am carrying big cinder blocks on my back, my entire body is sprained, and that I feel like I am experiencing not only the worst pms ever (which isn’t necessarily the case) but that I am so tired that I want to cry, except I don’t have the energy to do that. I am purposely not adding the rest of it, because there is too much left to list.
When someone asks me if I am ok, I almost always suck it up, and say “I am fine, I have just been working a little too hard, and not sleeping well.”
Am I doing myself a disservice, by not coming clean to people? Possibly. Would it make a difference to those people if I did? Probably not.
The people in my life who need to know what CFS feels like to me, all know. The rest of them can just assume that CFS means that I am a little tired. They don’t need to know any details. If they are really interested to know what its like they can read this blog, or many of the other fabulous blogs that can be found on the internet.
I would be most interested to know what you all tell the masses of people in your life. I dont mean friends or family (the ones that support you). I mean the superficial ones. The people you work with, or the acquaintances that you have…or the other people in your life.
It would be good for me to get some other perspective.
Sometimes I tell people I have CFS. Usually this is to explain physical limitations, and to point out that I am not lazy just because I don’t play any kind of sport. I rarely go into the details, but if people ask I will try to explain that it is a little more than just being tired all the time.
Often I don’t tell people. For instance, last week I was on a field camp, demonstrating water quality monitoring techniques to students. It was quite a gruelling schedule, with our day starting at 7, and work not finishing until 9pm at night (with breaks for meals etc). Needless to say by the end of the week I was pretty tired (although until recently I would never have been able to do this at all). But I just told to my co-demontrators that I needed more rest/sleep than I was getting. They really didn’t need to know I have CFS, and they probably wouldn’t have beleived me if I said I did, seeing I was coping with a level of activity most people would consider fairly active.
PS, I’m sorry you’re feeling so bad! I do hope you can give yourself the rest necessary to improve.
I dropped the “C” in CFS when I discovered I had food allergies. This was long before I’d heard of CFS. In my case, it wasn’t really obvious to people that I felt like crap all the time.
When I discovered my allergies, it became a matter of avoiding the food and air-borne allergens that make me feel absolutely awful.
So I have many versions of the same (and to me boring but necessary) conversation about what I can’t eat, what foods might have it, “are you sure…”, and what my symptoms are.
I’ll do anything to avoid a three-week bout of allergy symptoms.
Ellie, I believe that is my problem as well. Since my activity level is “normal”, its hard for people to understand that I have CFS. So basically if I look like I am not feeling well, I tend to brush it off. However doing that, has gotten me in a bit of trouble the last couple of weeks….with my emotional state. Physically, I am feeling ok. A bit tiredish. But mentally I am very very run down.
The people who know and understand about my CFS have all stepped up, and are doing what they can to help me out. But I have to decide on whether I should be sharing this information with my employer.
Thanks for your insight. It was helpful as always : )
Wheat Free,
Rarely other people notice that patients with CFS or FM are sick. We look just like everyone else. The only way you can tell that I am sick (as opposed to when I am not) is that there are HUGE dark circles under my eyes, and my skin goes grey, and well my hair falls out (but that is linked to something different).
I know that food allergies also tie in, and can bring on a really big crash. And just about anything can do it. I do know that wheat is a big problem for some patients.
Thanks for contributing : )
Since I can’t work, I don’t have the difficult question of what to tell my employer. I also have little to lose by telling strangers the truth. So I tell people the truth, with whatever level of info that is appropriate to the situation. Even if they don’t understand (or care), it is one way to start “spreading the news” about this illness.
Laura,
It depends on how understanding your employer is. My old boss had seen me through from when I initially got sick, and so when I would go through a bad patch, I would get worse and worse, and when I finally spoke to him about it he would say “I was wondering when you were going to say something” and would be very accomodating. I definitely recommend honnesty when it comes to your employer, but as I said it depends how understanding they are, and you know them best.
Jennie,
I think you’re right. I sometimes feel I should be more honnest than I am, if only to spread the word about this illness. I guess it comes down to a case-by-case assessment of the effect on me as an individual versus the general benefit of CFS sufferers as a group.
Jennie,
Its good that you are telling people. I am glad that someone is. It takes a lot for me to tell people, and usually I only say anything to someone, if they see me decline. It doesn’t happen a lot…but occasionally when I am out shopping with someone, or out for lunch….You can see me go from somewhat healthy, to very not well in about 3 minutes. At that point, I think they deserve an explanation.
Ellie,
sounds like you had a pretty great employer. My current employer doesn’t give sick pay benefits, which makes me think that they wouldn’t be too thrilled to discover that one of their employees has a chronic illness….and has been thrown way too much work lately. Help has already been pretty much denied, even when a meltdown happened.
Technically, they cannot fire me, as I go to work everyday, and I do my job….but they can make it so unbearable, that I can’t stand to go in everyday, and that I will quit, so the problem (me) will go away.
I suppose that is what they are doing.
I always feel like this is a difficult problem. It’s hard to know how people will take it. In the past I’ve been surprised by how understanding people can be when I explain my situation to them. Even so, everytime I take the jump and explain things, it is still frightening.
Fralie,
I always feel frightened when I tell people…some times its worth it, and sometimes it isnt. I guess you just really have to know the people that you tell. And if they understand great. And if not, then we should decide on whether they are friends worth keeping.
Maybe that sounds a little harsh.
I tell people as much of the truth as they need/would benefit from hearing: from the very simple “I have a long-term illness” right through to “I have FMS and CFS, which involves…” I think it’s my responsibility as a PWC/F to educate and raise awareness, since no one but PWCs is going to do that!
I guess that I feel that I have no right to complain about people not understanding if I haven’t explained what’s going on for me.
When I was working, by the way, my employers were wonderful – because I had clearly explained what was going on to them throughout. Sadly they couldn’t accommodate the job to suit me, in the end, because I became too ill to work, but they did try very hard to make things work for me. Had I not explained things and educated my employers, I don’t know if things would have been as amicable and positive as they were between myself and my employers. I hope that when I return to work, I can be just as open and create equally positive relationships with my employers and co-workers.
As for friends who consistently fail to understand or take me seriously, though, I’ve stopped bothering with them. Being housebound and a wheelchair-user is a fascinating indicator of who your true friends are, and I’m happy to be surrounded by people who I know actually care. Someone who is willing to travel from one end of the city to the other to visit me, on a regular basis, as well as coming to cook for me, bring me things or just sit and talk when they could be doing many more interesting things, is showing themselves to be a real, true friend. Just having a few of those is enough for me.
i tried to tell people about my cfs and the different responses i get always amuses me.
at first all my friends came across to be sympathetic but i later found out that they thought i was making most of it up and i was milking it to get off school and course work. this came like a knife in my back to find that my so called “friends” could be so cruel.
other people responded by saying well im tired does that mean i can drop a GCSE and miss school. this was so infuriating, if i simply wanted to just miss school then i wouldnt make up an illness that meant i was in bed most of the time and that i had to miss seeing my mates.
when my teachers found out, some where kind but as i still denied the fact that i was ill, it seemed to me that they were being patronising. Others took a totally different view and whenever i asked for extensions on work as i was struggling with the work loads, i was met with sceptical looks and disbelieving words.
unless you have experianced this illness your self no one can no the frustration and sadness it comes along with. no matter how much people seem to care and sympathis you there is always a part that just thinks go away. One of the most annoying things to hear is someone saying, “i no how you feel i slept so badly last night”. it makes me want to scream and say, you have no idea what i am feeling, one say of tiredness doesnt even compete, i feel tired, achey, frustrated, annoyed and overall ill.
so advice to anyone who has a friend with CFS. dont assume they are making it up
stick by them no matter what because that is all they want
offer a shoulder to cry on but dont ask what causes the tears because they may not no
and overall be there for them right thro to the end, dont make them lose there friends as well as energy
Lil,
you have a great attitude. one that I find to be very inspirational. Thank you.
(looks like your comment got lost for a little while, sorry that it took me so long to find it
)
Georgina,
that’s great advice. thanks for sharing.
I think we have all had problems with friends and families not understanding. My own cure for that may be a little harsh, but I tend to cut people out my life, and have them drop out of site, because I most certainly don’t need the added stress of being around people who think that I am making things up, or decide to give ultimatums because you have had to postpone an outing more than once.
hi all.
i’m 15, and i’ve had CFS since I was 11. I’ve grown up in family that hasn’t been very understanding of what CFS is, and how I feel when I have particularly bad days.
Lately, I haven’t been doing so well to say the least. I’ve been suffering from that too familiar exhaustion and soreness, which has no progressed to diziness, odd vision and focus problems, and irregular heartbeat and exhaustion at even the slightest physical activity.
I’m in the marching band, so I’m up at 5am monday-friday. I play volleyball as well, so I’m rarely home before 10pm, then I do homework until about 12 (I’m a strictly AP student.) Saturdays and Sundays I sleep as much as possible, and then spend the evenings with my boyfriend. (We’ve been together for almost half a year now, and things are great!)
It’s not a very healthy lifestyle for someone with CFS, but because my family is so ignorant to it, I’ve developed the mentality that I should just “suck it up”. It’s harder to just “deal with it” when CFS affects you mentally and emotionally. Just the other day, my boyfriend and I had to have a talk because it seemed like I “didn’t care anymore”. I have never considered that maybe CFS wasn’t just affecting me, but those around me as well.
I haven’t told any of my friends or my boyfriend that I have CFS, because up until recently I was convinced that CFS wasn’t all that bad, and it was just an excuse for lazy people to be lazy. I had always just thought that it makes you semi-tired and sore once in awhile. Now that my symptoms are horribly worse, I’ve decided that I need to find ways to cope.
And first things first; I need to tell my close friends and boyfriend. but how do I do this without seeming like I’m just complaining or making excuses?