Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

1,560 Members

7,095 Posts

0 Online

Ruby30 02/01/2013

So everyone, I am writing to vent today.

I will begin by first stating that I have (hopefully) been through the worst of this illness (the first six months) and I know that a lot of people are way worse than me but sometimes that just doesn't bring relief.
I have been part-time at work for 4-6 months now and can only manage 15-20 hours in the office on a good week, I do more hours from home.
I have a meeting with my boss on Monday because he "does not think it's working out". I have been with this company for 5 years and been sick for one of those years. I am assuming that he does not believe that I am ill as my work is getting done so I do not see what it is that 'is not working out'.
I went out for dinner last night for my sis-in-laws bday and could not eat anything on the menu! This happens at most places due to my very restrictive diet.
I thought I was better and added histamine foods back into my diet a month ago, I was fine for a whole month and then of course started getting excited about the foods that I could add back in like, nanas, tomatoes, eggs, lactose free yoghurt and more. Then the symptoms crept back slowly and now I have add to remove those foods, I removed them 6 days ago and still having issues, why does it take so long to get out of my system???
I managed to get to the gym for a 20min light upper body work-out, twice in one week but then crashed..............again! Not as bad as before I got put on thyroid and hormone medication though.

I am also sick of people asking how I feel, I feel like shouting I ALWAYS FEEL SHIT!!! ASSUME I FEEL CRAP!
Every hour at work is a struggle and goes soooo slow!!!

OK Sorry for the moping, self-pitying rant!
I am usually positive and most people think I am coping well but some days I just want to scream!

knufflesmcblimp 02/01/2013

Don't feel guilty for how you feel. In some ways, the 1st years can be the worst. For my first couple of years, I always tried to push myself to meet the goals of my "healthy self" and was always failing and crashing and becoming more frustrated. It's hard to realize you're not what you were, because it seems like yesterday that you were so able and hopeful. I think support from family is harder in the early stages too.
I know what you mean about always faking it for people. They ask questions like "How are you doing?" without even thinking about what they mean. It's hard to imagine how naive I was when I was healthy.

countr 02/02/2013

Sorry, I too am on a very restrictive diet. There is only one place I can actually eat at. If I am asked to go somewhere else, I pack and take my own food. It works for me, I get to socialize and not get sick from the food. I hope you'll be able to find a solution for you too. Hang in there. Feel free to moan, it's ok.

Genie61 02/03/2013

Hi Ruby, Good for you for venting. It doesn't change anything but it sure helps for the moment. Many of us know exactly how you feel and I agree that the first year is the worse. It's such a long learning process and hopefully you'll find the answers that work best for you and your particular symptoms.

And yes, the dreaded "How are you feeling?" question.......I still sometimes don't know how to answer that. I guess it depends on who is asking and why, but I know that feeling of wanting to bite someones head off for asking.

You don't mention what symptoms you had by adding back those foods but I thought I'd mention this.....Probiotics....I take one daily and find that it really helps with digestive issues. I'm very careful with my diet also and have eliminated or drastically reduced certain foods, the probiotics really help keep my digestive system in check. It's worth checking into and asking your Doctor about.

I hope you feel a little better, and don't ever apologize for expressing your feelings to us....that's what the group is here for.

Take care,
Genie

MaxPB 02/04/2013

Vent away. Feels good to get it out doesn't it. Even those of us who choose to be eternally hopeful have those days when it is just too much. Hoep you feel better soon.

lulu555 02/04/2013

Ruby 30, I can relate to your suffering, believe me. I was working for a company for three years, and the last year is when i became more ill and was reduced to part time work. I had CFIDS, many food sensitivities, and lost some weight. I worked 20 hours a week, and i remember how much I watched the clock during the last 2 hours, hoping to be able to get thru the day. I would like to offer some advice. Find out what your rights are as an employee. My company promised me part time work, and did the exact opposite. I was so sick i didn't even consider filing a complaint with the EEOC or talking to lawyers. Its worth a try. Just one of those things i wish i would have done. Keep coming back if you need to vent, too. This is really the only place I've found where people believe how sick I am, and have encouraged me. I also try to take note of remedies people have tried.

RosaQ 02/04/2013

Yes Ruby,
Thanks for your post. Like the others here, I too 'get it'.
And no problem letting off your aggravations. We've all
experienced them I worked also for several years
when I was ill and was
able to juggle my hours and then take breaks in between when
I was needed to.
. It's a real balancing act and I also didn't know what
chronic fatigue really was. which at that time was probably for
the best. I kept pushing ahead but it did catch up with me.
I also answer different for different people when friends
assume I'm 'fine'. That goes for family members too. I'm
just starting to explain some of this after 5-10 years so it
doesn't always happen overnight. As to eating in
restaurants, I have to know where I'm going first. Other
wise I'm not able to order much off the menu either.
Before, (10 yrs. ago) I was able to go just about anywhere
and eat anything I wanted. Those days are no longer.
So, good luck with your meeting today and thanks
again for letting us know what is going on.

Ruby30 02/06/2013

Thanks everyone for you great support.
So I was given two options, one was to have a 3-6 month complete break OR work 5 days a week over 4 days..
The second option is not realistic at the moment. I have not managed 4days for many months now. My boss does not want me working from home so therefore there is more pressure for me to come into work.
I will get the same amount of money as I would on a benefit, so either way I am really going to struggle with paying my mortgage and eating!
I am thinking that a complete break is the only option although I am worried what this will do to me mentally, on the other hand if I feel physically better then that will do wonders I am sure.
At least then I will be able to spend my energy on things for myself rather than struggling to work and not having anything left for gardening etc.

jaf264 02/13/2013

I was wondering what kind of doctor you went to for thyroid and hormone treatments? Also, about the probiotics, Genie, which ones do you use? thanks. I've had CFS for almost 20 yrs. The drs around here aren't very helpful.

Ruby30 02/15/2013

Jaf264, I went to a naturopath/Dr for my hormone treatments. I am in NZ and there are only two that I know of that work with hormones.

Join the Conversation