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...
I wonder if people realize how much courage and energy it takes for us to make appointments, get ourselves there, and try to follow through with any kind of possibility that might help us feel better.
After 10 and a half years I feel like I have tried EVERYTHING! I pretty much just do the best I can day in and day out and when it gets really, really bad I try to find something that might give me a bit of relief.
We have new insurance that allows for 4 visits to a counselor. I went twice and didn't find any relief. The counselor didn't know what CFS was. I went for my annual (many years overdue) gynecology exam and hoped to have questions answered about perimenopausal hormonal imbalance. No help. In both cases I was told there wasn't anything I could do other than what I was already doing. I thought I had found a support group in my area but I haven't been able to contact the gentleman who was in the process of starting the group. That's pretty much three strikes, isn't it? (Two more counseling visits available and the task of trying to search for a new one and starting over with all of the explanations--I'm out of energy for now. It will have to wait. I guess I need to sit in the dugout for a while since I'm too tired to step up to the plate again.)
I am feeling depressed, worthless, restless inside this tired body, questioning my purpose in life, and all the other thoughts that we have to fight when we feel like we've been knocked down one too many times....AGAIN.
I told the counselor that I feel gratitude every day, but I can't feel joy. I feel strongly that there is a difference between being grateful and feeling joy. She said you can't force yourself to feel joy and she was right; however, she didn't have any suggestions about how to work through my feelings. It's such a mystery to me how this illness (CFS and depression) can take away something so fundamental to our well being.
Speaking from a spiritual perspective.... I think I am a good person. I pray and do the things that would normally result in feelings of joy and good will. Isn't it strange that goodness doesn't always translate into joy when one is dealing with chronic fatigue?
It doesn't make sense to me. I've tried so hard over the years to accept my limitations, but it isn't easy, nor do I think it's possible to my nature to give up my desire to feel joyfulness. I try to hold on to the little things - the space in between the deep breaths, the moments of relief, but I feel only gratitude and not joy.
Does anyone else feel like they've lost the ability to feel joy?
After 10 and a half years I feel like I have tried EVERYTHING! I pretty much just do the best I can day in and day out and when it gets really, really bad I try to find something that might give me a bit of relief.
We have new insurance that allows for 4 visits to a counselor. I went twice and didn't find any relief. The counselor didn't know what CFS was. I went for my annual (many years overdue) gynecology exam and hoped to have questions answered about perimenopausal hormonal imbalance. No help. In both cases I was told there wasn't anything I could do other than what I was already doing. I thought I had found a support group in my area but I haven't been able to contact the gentleman who was in the process of starting the group. That's pretty much three strikes, isn't it? (Two more counseling visits available and the task of trying to search for a new one and starting over with all of the explanations--I'm out of energy for now. It will have to wait. I guess I need to sit in the dugout for a while since I'm too tired to step up to the plate again.)
I am feeling depressed, worthless, restless inside this tired body, questioning my purpose in life, and all the other thoughts that we have to fight when we feel like we've been knocked down one too many times....AGAIN.
I told the counselor that I feel gratitude every day, but I can't feel joy. I feel strongly that there is a difference between being grateful and feeling joy. She said you can't force yourself to feel joy and she was right; however, she didn't have any suggestions about how to work through my feelings. It's such a mystery to me how this illness (CFS and depression) can take away something so fundamental to our well being.
Speaking from a spiritual perspective.... I think I am a good person. I pray and do the things that would normally result in feelings of joy and good will. Isn't it strange that goodness doesn't always translate into joy when one is dealing with chronic fatigue?
It doesn't make sense to me. I've tried so hard over the years to accept my limitations, but it isn't easy, nor do I think it's possible to my nature to give up my desire to feel joyfulness. I try to hold on to the little things - the space in between the deep breaths, the moments of relief, but I feel only gratitude and not joy.
Does anyone else feel like they've lost the ability to feel joy?
WHEN YOU SEE ME
by Mary Hastings
written May 2003
When you see me on a "good day"
I may look as if nothings wrong,
But I, myself, am very aware
That the energy wont last long.
You may think that I am lazy,
Or I just dont like to try,
Or maybe I am just depressed,
When sometimes you see me cry.
You may not understand me,
Its not easy to explain,
The struggles that I so often endure,
As I live each day in pain.
People may offer their opinions,
Thinking that I just need some advice,
Yet they dont really comprehend,
Although they are trying to be nice.
What for some may be so easy,
Is almost impossible to me,
But because I may look healthy,
Many around me fail to see.
Perhaps it seems that Im sloppy,
If I would only take more pride,
Its sad that many dont stop to see,
The person who is inside.
Planning things is so hard to do,
With each day uncertain fate,
The best that I can do is try,
And oftentimes I have to wait.
Life can be so stressful,
Even when you have your health,
Many people cannot even imagine,
Giving up their dreams and wealth.
While some people may worry,
How to fit everything into each day,
Others of us must struggle,
To even find a way.
So often misunderstood,
Some say that is must be "in my head,"
Yet there are days that it takes all I have
To even get out of bed.
Youd think that if one is weary,
Then why not just take a nap,
But the fatigue at times is so severe,
That nothing seems to help.
If exercise were the answer,
I would just move into a gym,
But intolerance and unbearable pain
Makes it difficult to stay trim.
Thats alright just take a pill--
Medications can always do some good,
However, sometimes the effects are far worse,
Oh, but how wonderful it would be if I could!
Living each day fighting defeat,
Knowing that you cant give up and quit,
Even though it gets hard to do,
Find ways of accepting it.
I guess it would be a better thing,
If there were a little more support,
Everyone longs for acceptance and love,
As they keep their life in sort.
If I could make the world aware,
Help them to see things in a new light,
Be careful on what they base their view,
That they may receive a new insight.
Then maybe when someone else comes along,
Who is going through something unknown,
They may not feel so hopeless and scared,
And will know that theyre not alone.
Whether it be a terminal thing,
Or something chronic with no known cure,
There are many processes that will be faced
In this we can rest assured.
The grieving over loss is hard,
Whatever the loss may be.
What may be just a bump for you,
Could seem like a mountain to me.
Everyone responds so differently,
We all have our own ways to cope,
But the one thing that we must never do,
Is believe that theres no hope.
I've got no advice for you, kife, but listen to this: A friend left her puppy in my care this past week while she's at the beach. This little 4-month-old Blue Tic hound, Eddie, finds joy in EVERYTHING: chasing my two grown dogs around the yard, galloping up and down the steps, parading around the living room with a chew toy he discovered under the couch, eating/eating/eating, riding in my truck (head thrown out to the wind, tongue flapping crazily on his cheeks), baking in the summer sun, and curling up in my lap while I watch TV. Even pooping seems to make him unreasonably pleased with himself!
How do I know he feels joy? You can't miss his wide happy grin, propellor of a tail, and bright, eager eyes. Plus, he kisses everyone, all the time, as if he is bursting with gratitude and needs to show it. I am a little jealous but mostly I'm inspired by the way he embraces every sight, sound, taste, and smell.
So, what's the moral? Get a puppy! Well, maybe not. All I know is that I'll miss him quite a bit when my friend takes him back on Saturday.
Cheers,
Jeb
thank you.
kjfe - I can understand where you are coming from. I think that it is very hard to find joy when you are experiencing difficulty, pain and exhaustion.
I have spent a long time thinking about things like this recently. I realised, over the past few years, that I am judging quality of life, happiness, joy etc., based on the parameters of healthy people and I started to understand that perhaps the way for me to experience joy is to look at things in my life or environment that could bring me joy. It's like learning to find other ways of achieving it - finding the things inside you that make you tick... because nourishing your soul and being in-tune with yourself, will make you feel happier and happiness leads to joy.
Changes in my feelings came when I was able to let go (to some extent, am still working on it) of the fact that I am not well... by allowing myself to simply 'be' and not fight the CFS, I started to feel mentally a bit better. I think that years of struggling have worn me down and years of feeling guilty and as if I have to prove myself - either by achieving things that are somewhat ridiculous considering my health problems or by proving to sceptics that I am actually physically unwell - have taken their toll on me.
I believe that I will always feel 'lack' if I look at the things I cannot do or am unable to have because of the CFS, but by looking at things I can achieve and being aware of things in my environment that I am able to appreciate (which many other people are simply too busy to notice or do not place any value on), I am beginning to experience feelings of joy that I had lost. Feelings of lack, do not bring joy - they only make you feel down and negative. I have many things I can feel a lack of... but there are also things I can feel happy for... I have a beautiful Yorkshire terrier dog, who loves me unconditionally and every day, this tiny bundle of fur brings me a lot of joy and happiness. I can look at her and marvel at how something of her size has a brain, a heart and a mind and will of its own - I always find that amazing for some reason.
I am also sometimes able to sit in my parents beautiful garden and notice the birds, the insects, the flowers and trees and I know that when I have been able to do some work, my life has become so busy and I have not had time to do that or to appreciate those things... and at that time I have longed for a moment to just sit and contemplate it... whilst I wish that that moment was not because I have CFS, I do find joy in my surroundings.
I don't know if any of this will make any sense to you. I still have my down days/weeks. Living with CFS is a struggle and I don't think that aspect will ever go away completely, but finding a way of not losing sight of yourself and what makes you 'you' is really important.
Vicky
P.S. On the counsellor note. I am hoping to commence training to become an accredited counsellor and am intending to specialise in working with people who have chronic health conditions (such as CFS, MS etc) and people with alopecia. Perhaps there is a counsellor in your area who does have experience of working with people with CFS?
I am still thankful about stuff. Thankful for the odd day when my GI tract isnt IBS-d but they are a long time between drinks.
Thankful when I can do something with my kids or when they are obedient but its often a long time between drinks there too. Im thankfull everyday however for my tollerant wife who doesnt nessecarilly understand GWS or CFS or Fibro but we just make the best of what we can. Im thankful for a place to raise my family and school free bus and the kids school which the love so much. Im thankful for my little vegy patch thats taking shape. I think joy would be closer if I had the energy to stand and sing at church but unfortunatly I have to either sit and sing or just stand. I cant stand and sing which is I find very frustrating. Joy would be closer if I could put on my knicks and ride a bike or let 10 kms roll out from inside my Nike Air Pegasus shoes while my
i-tunes play inside my noggin but sadly with GWS and CFS and Fibro I cant do either of those things . Joy would be closer if I could play 18 holes of golf or even swing a golf club or get into the lap machine zone and do 20 laps of the Olympic pool in town like I was able to dopree CFS/GWS but I cant do either of these. I know joy would reapear if I could take my family crosscountry skiing for a weekend dut that not possible. My sister and her husband took their 5 boys X-Country sking a month ago and when she told me I felt absolute joy. I smiled for a week because I knew for some of her boys it was their first time skating on back country trails. As for joy in my daily or weekly life it seems to have been left in one of the household uplift and removals of our goods and chatels in the last 4 years. There are still a bunch of boxes in the shed still unopened, maybee one day I will find it in one of them. Professor de Meileir dis say that my neuro toxic profile was elevated because of GWS (GWS=CFS+Fibro+MCS+IBS-d+Migrane) and that these neuro toxic loads of over produced NO and H2S afected the balances of my neurotransmitters Seratonin, Dopamine and NorAdrenaline so I guess that hads something to do with it.
Tha last time I felt reall Joy was when my beloved Hawthorn Football Club the Hawks, the mighty Brown and Gold), won the AFL flag in 2008. It was an absolute unbelievable fairytale that came true when they beat the most winning team in the history of over 100 years of AFL football the Geelong Cats. They didnt just beat them in a nailbighter they crushed the Cats in the big one that counted. My Hawks were 1:5 against to win, I was glad they had just made the Grand final but they were the only team to beat the Cats last year and they did a job on them in the Grand Final. Glenferrie Rd was still brimming with overflowing joy a week later when I finally made it down there. I think heaven will be filled with such a sence of absolute joy. I think the neuro toxic effects and the Fibro pain and the Chrinic Fatigue and the diabolical guts steel the Joy I could be enjoying. God bless the GWSand CFS researchers. May they find the biomechanics of these cruel diseases in our lifetimes.
Al
We are born with it mostly, but as life goes on and gets to be filled with too many sorrows, it's harder to find. Most older people seem to have less than the young, but not always.
I don't feel I am entitled to it. Life is a gift, unpleasant as it usually is these days, and I try to appreciate the bitterness along with the little tastes of sweet. But joy is a fleeting thing, very scarce in times of war and plague.
In our infirmity, I think we appreciate moments of joy more deeply than those who expect to have it like their morning coffee, dependable and on time.
I find some joy in gardening. The work is hard, it hurts a lot...but the rewards are pretty special. It's hard to beat picking sun-ripened peppers and tomatoes...there is a primeval joy in that. I imagine it dates back to the earliest days of mankind. Even in pain there still can be joy.
I think of joy as happiness, fulfillment, contentment, reverence, satisfaction, a manifestation of smiling soulful exuberance! How blessed we are to understand the simplicity of joy and how sad we are to know that our illness affects how we can experience it. I'm quite certain it is biochemical. I'm also pretty sure my hormones and CFS-brain stuff are directly related to my interpretation of joyfulness. I know there is joy in and around me and I feel sad that I can't feel it in the same way I did before.
I really like the point that I need to learn how to feel it differently. I know I am far more sensitive since having lived with chronic illness for so long. It isn't that I don't sense goodness and light. I guess I've been trying to feel the lift of spirit that comes so much less frequently when my symptoms are weighing me down.
Like I said, I can feel immense gratitude and swelling in my heart for my blessings - even the smallest of blessings that we know others take for granted, but feelings of joy are elusive. I try to hold on to them as tightly as possible, but I'm wondering if they are not meant to be held onto so tightly. Maybe watching for another moment is what keeps us tuned in to our blessings.
The sadness feels too heavy sometimes. I get so tired of trying to lift myself up and lift myself up and lift myself up. Thank you all for giving me permission to float in my sorrow once in a while. I need the rest. Perhaps joy comes most often when we let ourselves be who we are. How hard is that when the world is telling us we "should" be something different?
I guess that's why we come here. thank you.
You said: "Perhaps joy comes most often when we let ourselves be who we are. How hard is that when the world is telling us we "should" be something different?"
I 100% believe you are right... It is very hard to just 'be', because everything in this life seems so caught up in what you have, what you do, who you know... and for me: I don't have a house, car, and am not working etc. So I feel STRIPPED BACK to the bare bones and I actually appreciate that for the first time in my life. So many people seem to want to reach this state (not with the pain and circumstances, which is probably why they don't reach it) because they believe this is how they can "find themselves", but few people actually respect it...
That's not to say that I do not feel sorrow, guilt, frustration, dark feelings.. I do, but when I don't feel them AND when I am true to myself (not trying to please people or be something I am not ) I feel goodness and happiness and wonder and excitement. I believe that even in my circumstances, I can achieve things and perhaps these are different to the things I 'thought' I would be achieving at this point in my life, but I have hope.
Kife that you have shared and opened it up.
Thank you for this. I see myself in many
of the things said here..both the 'highs and
the lows'...I too don't have any advise..really..acceptance comes to each
person in its own way..and sometimes maybe
not at all.
I do know that when I had my
adrenals checked and started taking some
supplements to boost my saratonin levels,
that did help. But everyone has different
levels of fatigue and illness. And some
people respond well to some treatments that
others don't.
I am older than most of you and have
been fortunate to have had fairly good
health up until I turned about 50. I
raised 2 daughters as a single parent and
worked and watched them go out into the
world. (Yes..) that was good. but I also
had some expectations for my retirement
yrs...travelling..being active ...and
social and all the things people look
forward to.
I still can do some of these
things..I'm, very fortunate in this way.
.but I did not plan on spending
most of my retirment funds on doctors
visits and every kind of vitamin and
supplement and treatment on the planet and
going from dr. to dr. for 10 yrs. like some
kind of 'nutcase' wondering what was the
matter with me..while everyone would pooh
pooh it..or say.."I looked fine!'
Getting back to joy..I do find that it's
much easier to experience it when I'm
feeling decent...then the colors look
more vivid, people seem friendlier..the
air smells better...my quirky dog becomes
a gift....it's easier to feel
loving and grateful..
Thank you Vicsta too for your post.
It was very powerful..and I needed to be
reminded..I hope you make it there..I
feel that you'd be a fine counsellor.
And we're all counselling each other too
it feels like as we so candidly share our experiences through this site. it might not be a total 'joy' but it is amazing that we do have the internet. available.
It's definitely a
source of strength for me... blessings to all....
I can't take myself to the doctor and so my husband has to take off work to take me. I feel GUILTY for that..his only days off work, he's taking me to the doctor and it's a half of a day wasted. We don't find out anything new or any new meds that work. I kind of feel like what is the point in going to the doctor?
Counselors: my counselor sucks. After over a year, I feel worse after seeing my counselor because every appointment she makes me explain WHY I can't work. It ticks me off.
You deserve better, please rethink your arrangement with this counselor.
It's only about twelve bucks at your local vitamin shoppe or health food store.