Hi there 4everyoung,

I am an unemployed, chronically ill, 35 year old man. Feelings of worthlessness are part of a chronically ill persons life. Most of these feelings, or at least the worst kind, come from comments made by dear friends and family. I have ups and downs like you, so sometimes I appear to function like a healthy, employable adult. I get ridiculed and put down for not working and supporting our family when I sorta well.

I attend a group meeting for chronic illness/pain at a church. The main reason I go is because of the relational issues that go along with being chronically ill in a way that people cannot visibly see. There are some very good books out there about this. Believe me... you are not the only one feeling like a looser. "Feeling like" is completely different then actually "being" a looser!

I clean our house, make meals, pack lunches and do basic household chores better than most wives. I decided that I had to do certain things every day to feel good about self and it worked. My family life immediately changed for the better also.

OMG when I am in pain or severely exhausted, I don't want to talk to anyone! It's too much effort.

I know what you mean about work-I just started a new job in August and I have to go 90 days without missing work, or the 90 days starts over again, I HAVE to go! I am praying for dear life that I make it the 90 days.

You are not a loser or inadequate, you wouldn't say it if you had cancer would you? We have a disease and we have to plug on day by day.

We understand and care.

If you have a diagnosis from a physician you could request to work from home for either part of or all the week. This is an increasingly popular option for many people, not just those who are ill. Depending on the nature of the work you may be able to pace yourself much more easily in that way.

It might be a decent option to look at moving to somewhere that doesn't put such a strain on you financially.

On the relationship front the only real option is a frank and open conversation about your illness to clear the air with your partner who might be a bit confused about why they aren't getting much attention.

That's the best I can think of, hope that help a little.

4everyoung1: All I can do is give you my moral support . . . not much practical help, but I do understand and sympathize with what you're going through. I've been married 26 years, so fortunately our relationship was pretty steady before I came down with this 4-1/2 years ago. But it's still a strain on my husband, I'm sure. I had to quit my job, I am sometimes incoherent, and can do very little in the way of housework and/or yardwork. You *want* to contribute to the relationship, but can't. You came to the right place to vent, is all I can say.

Being disabled can be so dehumanizing. We are forced to choose our priorties; if we choose our health and supporting ourselves, we cannot do anything else. If we choose our health and relationships, we cannot work. Both relationships and work are usually the big ticket items when it comes to defining who you are, ie married, a doctor, a student, etc. I have lost a marraige due to my illness; I too am choosing health and work over a new relationship, and sometimes I don't even get that!

We all feel "useless" because we were once very busy active people. I've had CFS for 14+ years and there are days when I have a kind of flashback to the person I was so long ago.

It's like grieving the loss of someone very close to you. That old me is gone and in her place is this sick helpless shell. My dogs help me to feel useful. They need me and I need them. Plus they love me unconditionally. I truly believe that God created dogs for women because he knew that women were going to need someone who would love them no matter what and would need them.

My granddaughter (that's her in the picture) told me one day that her friends were envious because HER grandma was always there when she called. There grandmothers are probably working or volunteering or shopping but her grandma is always there for her.

That showed me how valuable I still am. I'm the person she can be herself with. My daughter said Elly's voice changes when she talks to me. She sounds like Grandma's Little Girl. Which she is and she told me that she would always be my little girl.

I wish my relationship with my husband was better. But in reality it never was very good. I just kept hoping he'd get it. He takes care of the house and does all the grocery shopping. We eat at different times because he's married to his job and won't leave until they've squeezed every ounce of work out of him.

But he has stayed with me. I think because it's the "right" thing to do and because if he left me our kids would never speak to him again. He had no time for them when they were growing up but he sure does like them now.

I was diagnosed with breast cancer in 2007 and was happy about it. One because it barely stage 1 and two because I could say "I have breast cancer" and instantly get support and comfort.

You are one of God's creatures and he loves you. He does not make junk. He loves you unconditionally and is sorry you have to go through this. My son is a professor of religious studies and he said long ago when he was an undergrad that Golden retrievers are the closest model of God's love. And of how we should love ourselves and each other.

My Golden girl is the happiest creature on Earth. She loves me even when I clip her nail too short and she bleeds. My Westie would bite my face off. Well he'd let me know that he could.

Don't give up on yourself. It's a long hard road we walk but we are never alone. Thousands walk with us and know what we are going through.

God bless you.
Hugs
Vicki

Welcome 4everyoung1.

Yep I'm ME/CFS and Fibro too.

Long term married relationship.

My wife is my tollerant, understanding and compassion and sometimes I feel like she is my sword and my shield.

Dont worry, I sometimes feel like I'm a big like a loser and inadequate as a person too, but reallly its the opposite.

The blerb below started out as a Journal entry but I pasted it as a topic on the CFS group and again here because I want to share it with 4everyoung1 too.

Being an Aussie I can't get enough of the replays and Tour de France highlights. Yell for Cadel. Yay Cadel.
I've been watching 'The Tour' for 21 years now and conceder it amongst the greatest victories for any athlete in the endeavour of Australian Sporting history.

To think that Lance won 7 of them in a row does my head in.

Just one is a spectacular achievement.

The thing I love about The Tour is the telecast Via France 2 apart from the exquisite scenery is how you can see the grimace and the courage riddled into the faces of the riders for mile after mile after mile, day after day after day.

I cant ride a bike any more because of Orthostatic Intollerance in my quadricepts muscles in my legs which is a symptom of dysregulated Nitric Oxide blood gas production which is one of the aspects of symptoms of my walk with ME / CFS / CFIDS / NEID's, if I do ride a push bike on the flat, too much Nitric Oxide is created and it catalyses to ONOO and I body crash, however when I think about this illness ME / CFS, its made me take one day at a time, frequently one hour at a time and sometimes one step at a time.

When I search a thesaurus for 'one step at a time' I find no results but 'one at a time' yields 5 results - independently - individually - one by one - separately - singly.

The tour de France seems like so much like so many individual riders even though its made up of teams who have such incredibly intricate, integrated strategies that adapt to every change in circumstances of other teams and weather conditions etc.

Ironical this illness ME/CFS can be a darn frustrating and very isolating experience, like a lone cycalist forging their own wheel up and down an Alpine climb on a twisting mountain road with hairpin turns (unexpected events) and steep decants (body crashes) also requiring us to adapt to every change in circumstances and condition sometimes at a moments notice or else we face days or weeks in bed recovering.

Being a part of D'S' CFS support group is like being in a big 'peloton' of fellow team riders even though we are each forging our own wheel up our own mountain climb.

When I fall or crash or have to re-learn something, in order to recover my mojo, my groove, my hum or my rhythm on this unpredictable path, I find I have to discover my correct pace again which varies from day to day and even hour to hour, all the while looking out for the tiny speaks of new colour (gold/ the maillot jaune) amongst the dross and frequent discouragement of this experience.

The specks of new colour are there every day but it takes a keen eye to find them. The more experienced I become at finding them the easier they are to find. Thankfully too, brain fog and cognitive fatigue do not limit me searching for the bright specks of new colour that can sustain me for a disproportionate amount of time.

Although this is not the 'preferred ride' I was expecting in life, its like my body is rewarding me in different non physical, non cognitive ways for the perseverance in observing the beauty as I ride this unpredictable all too frequently steep and sometimes dicey alpine ascent.

Just like there is always hope, I'm finding there is always beauty in this frequently gruelling challenge the Doctors call ME/CFS and NEID's.

Just like Lance Armstrong and Cadel Evans, at the end of each day, wether we feel like we have won or come last, we, each one of us through enduring whatever ME/CFS throws and has thrown at us with the grimace and the courage riddled into the faces are even 'better' champion hill climber, as we have conquered another stage and collected the speaks of colour along the way.

Every individual moment of shared support makes the ride so much easier.

Each one of you are increadably unique, filled with courage and you are really wonderful champions wether you know it or even feel it or not.

Its an honour to ride this bumpy road with you. The end of the story is like a fairy tale come true Team DS CFS wins through.

Your really a Champion even though you may feel like crap.


Al

I am currently separated from my husband. I cant say the illness was entirely the issue as I was the one that wanted out. My husband would stay, but this relationship and all my relationships (parents) have had that dynamic of me needing someone to take care of me. Part of my healing requires me to look at the physical and emotional/psychological aspects of my dependency.

When you feel worthless, you can be a magnet for people who take advantage of that. And being dependent financially is as demoralizing as not being able to move off of the couch. I did a ton of work on myself before I got to this point and I have a lot less stress with him gone. But I know that is not always the case. There are so many factors involved. It has taken me quite a few years to strengthen my immune system and digestive tract enough to start doing some intense detoxification. I started about a month ago.

I am grateful to have just found this group. It is healing to hear from others in the same situation. Talking to "regular" people can be exhausting for me.

This is my prayer, that we may be as compassionate with ourselves as we are with our friends here on daily strength.

I was a young wife and mother when I contracted CFS 25 years ago. I know how you feel. The support from my family members was almost non-existent. They accused me of having depression. Thank G-d I had a good doctor who believed in CFS. He really couldn't help me with the condition, but that validation meant a lot.
My husband even had said to me when I was really, really down for the count that I was ruining his life. Boy, did that hurt.
After some years, I "recovered" enough to get back to work and to fun activities, school stuff with the kids, etc. But then I became ill with Multiple Chemical Sensitivities and I was even WORSE OFF than when I had active CFS! Housebound, toxic, and totally misunderstood. I was accused of mental problems, attention-seeking (yeah, I lost my job, my health, my activities, my religious attendance, school, everything, because I wanted attention?)
People have to be the stars in their own movies. They can care or not care about you and your illness. But you don't have to buy into a premise that you are less because you are ill. Like someone above said, you wouldn't be that hard on yourself if you had cancer or MS or other debilitating illness. Hang in there. If I improved, you can, too.

I've always been "financially dependent on someone. My dad and then husband. It was a choice I made to be a stay at home mom. That was my job. I loved it and I did it well apparently. I have three grown children who are all gainfully employed, honest, kind, and care deeply about the world's underprivileged.

I did work once they were all in college. I loved my job and I miss it. But my reality is I have CFS and while I hope and pray that someone will find a cure or at least a treatment, I have to live in the here and now.

Some say they have recovered or gotten better. That's wonderful for them but I would be reluctant to tell someone that because I got better they could too.

It's unrealistic and it sounds like there is something they aren't doing to help themselves. We promise to be nice and part of that promise is to realize that we are all different.

I never had allergies. Now I have allergies. I'm staying at the beach and it's very humid. My allergies get worse when it's humid. I have MCS which I never had before. I can't stand any kind of air freshener. I used to love scented candles. Now I can't even have unscented candles. I have battery operated candles.

I'm just saying that we all have to be careful how what we say might sound like to others.

Hugs

Marriage is a constant work in progress even when all things are good:) My husband and I have always made a habbit to go with each other to doctors appointments. Mostly cause it gives us an excuse to spend time together. So he was at almost all of my appointments during the long time it took to get diagnosed. He was able to ask the doctor questions as well as express his feelings and what he had observed for changes in me. I learned a lot about how he felt and what he was going through by listening to him talk to my doctor. She was able to tell him in different words what I was going through and how I felt and also express the importance of me not over doing it. So he was learning about my illness from a doctor and she gave him lots of stuff to read about CFS. He does pretty good. He gets frustrated but not with me, more with the illness its self. A few weeks ago we had people over helping us move into our house. I was so exhausted I could hardly stand up. I laid on the couch for a few minutes and he got irritated with me. I thought he was irritated that I was exhausted, but come to find out he was irritated that I let my self get to that point. Knowledge is power. I find that if I tell him something about CFS he doesn't believe me, but if it comes from my doctor or the internet he believes. (not that you should believe everything on the internet). But heck if he believes it then Im all for it:) We work very hard at our marriage every day. I also make a point to express how appreciative I am of him and acknowledge what he does. I find it is also important to make a big deal out of it when he does not feel good even if he is just being a bit spleeny!

I am encouraged to read all your responses. It seems like there are several Christian people on here. Why does no one ever mention the possibility of getting divine healing? Or maybe the Lord God is allowing you to have this illness? Or are you like me in that this illness came about because of a sinful activity in my life, and you think you deserve it? Thanks.

I believe that bad things happen because we live in a fallen world. God gave us free will and our choices aren't always the best. But, I didn't choose to be ill. And I don't believe that God punishing me for anything I did or didn't do.

I asked my therapist ( an Episcopal priest) if my faith wasn't strong enough and that was why I was ill. She said absolutely not. If that were true, we'd all have CFS or something. My brother believes in himself. He thinks he is in control of his life. So he has NO faith and yet he's healthy and wealthy.

When something bad happens to us we ask, "Why me?" But, if something good happens to us we rarely ask "why me".

Please Endzone don't put such a heavy burden on yourself. And don't make God a punitive being. He weeps when we weep. He laughs when we laugh. He provides what we need. I firmly believe that He created and led me to each of my dogs in His timing.

I have a little Westie who is devoted to me. He loves me unconditionally and rarely leaves my side. Then God gave me Emma. Emma is a beautiful Golden retriever. She is the happiest creature on earth. But, she is also my assistance dog. I fell in the garden one day. No one was home and our closest neighbor is too far away to hear me yell. I lay there wondering how I would get up and get over the short fence.

I called Emma to me thinking if she would let me hold on to the thick fur at her neck I could pull myself up. When I grabbed hold of her she began to back away. I thought she was leaving me but quickly realized that she was pulling me up. And she did pull me up and let me hold on to her as I stepped over the fence and when I let go she pushed her head under my hand. I took hold of her collar and she helped me up the slope to the house.

I was stunned. She'd had no training. How could you train a dog to know what to do in a situation like that? She lets me know when I go out in the yard what my balance is like. She stays with me when she senses I'm wobbly. I don't feel it but she does. Other times she runs off to play with her little brother or find a good stick to chew on.

I could tell you so many more stories about both dogs and how they've helped me. I know that a loving God created these dogs for me. He sent angels to be with me. He's not punishing me. He's helping me cope.

I hope you'll let me be your angel so I can share the good news of a loving forgiving God. It hurt me to read that you see CFS as a punishment. God isn't like that. That's Old Testament thinking.

I'll pray for you. God bless you.

Vicki B, I couldn't agree more. Illness is not a punishment from our loving God. In fact, knowing I am not alone in my pain and difficult issues makes it easier. Blessings to all !!

Thanks for your response. Yes, it is so important to abide in the love of God. I couldn't agree more. You all kind of dodged the question though. Do you believe the Lord wants to heal you?