CFS not coping to well :(

I just read your post and I've got to say it sent a tear to my eye.I have ME have had since 2008.

My marriage broke up I'm now separated in a town but I see my kids still and they help when they can.

I use a rollator to go out with.

But to hear your story it puts my disability and life to shame.

Its such a shame that you don't get help especially from your family,and they think your lazy,that has got to be so awful to hear even more so being your family.

I really don't know what to suggest

There are always people on here that are very good and treat you how you should be treated In life.

By all means if ever you wanna talk feel free to message me whenever

Hope this helps even just a little bit then that would be a point forward for you

Wow, Bonnie. I'm so sorry you're ill and not getting any support. I can't imagine having this illness and having children as well. You're not alone, as there are so many of us with ME/CFS all over the world. My doctor estimates as many as 17 million worldwide. We have different degrees of illness. And I've read so many posts here about just what you mention--lack of support and family not understanding, even thinking we're lazy. I'm beginning to think it's the rule and not the exception. I think it's great that you posted to this forum, where you can vent to people who do understand. Can you get out of the house at all? If so, might there be a support group you could attend in person? I'm sending lots of warm thoughts your way. 

I too have been living with the condition for a long time but fortunately I am quite active and up to a year ago I was convinced that my situation wasn't going to get any better. My GP is great as she has other patients with the condition and the story of one of them convinced me try and beat this condition. 

From everything I have read and chats with doctors there really isn't much they can do for you as there is no wonder drug you take and next morning you wake up and the world is better. 

I havent bothered with special diets as I eat regular good meals, so I concentrated on pacing myself. My GP said to rest for 30mins and do absolutely nothing, then some activity and then repeat the cycle. I started with extremely small activity and for ages I didn't think it was making a difference and then suddenly I turned a corner and found it easier to do more. I am now much better at listening to my body and catching the signs that I am doing too much and stop. some days I feel awful buy persuade myself that a small dose of activity is good and often it works. Only the body is very good at getting use to doing nothing. 

Have you tried getting your children involved, so that when you are active they do things with you. They need to understand that you are not lazy but ill. don't worry about the family they will not understand, mine don't. 

Every day try to do a little something and tell yourself that is a positive step. Everything must be a positive, never a negative, even if you only did something for 1 minute it's better than nothing. Remember that nobody runs a marathon right away it takes lots of training and we have to train our bodies again to get use to activity. 

Hi BB,

I'm sorry to hear how sick you are and, the lack of support is terrible. What I'm about to say is not a cliche it's what worked for me. I've had ME/CFS for 15 years and finally seem to have reached a plateau.  I think I was as sick as what you described. What helped me the most was finally accepting that a lot of people, family, doctors, nurses consider the illness to be an excuse for laziness. It's pretty common knowledge that CFS patients have been told or experienced that label. We can't change what others think or say. We can change our attitude toward the illness.

It's a b_tch, it's frustating beyond words constantly being disbelieved or labeled lazy. Sometimes we subconsicously label ourselves - or measure our worth by what we do, that just doesn't work anymore. I used to swim 3 miles, run 4 Km 5 times a week, cycle...I loved to do wildness canoeing, I was a powerhouse of energy. I got sick in 1997, following a flu shot and have never fully recovered.

 I had a really great counselor that challenged me to be a human BEING and not a human DOING. We live in a society that places high value on what we can do and once we are hit with a challenging illness we lose a lot of that external approval. We have to learn to accept and love who we are. It's not exactly how anyone wants to re-invent themself - 

I hope can find some support, especially other people with CFS. You  may know that it's not that unusal for friends and family to retreat when someone gets really sick, It's like they realize it could happen to them. I know several people with cancer that experienced that. My CFS friends have all experienced the loss of friends and some family.  I have a few good friends who have stuck with me over the years - but lack of common interests make it tough. Please know that you can contact me anytime you need some support.  

I live in Canada. If you are in north america I have free long distance if you like to talk. I can't leave an email address.  Postive thoughts and prayers are sent your way.

Emis Moderator comment: I have removed the attempt at including the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service. Do not try and get round moderation.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

There is a recent discuss dealing with the hurtful ness of professionals, friends and family ho seem unable to accept the very real severity of suffering caused by CFS/ME. There you will fine many expressing similar and even stronger distress.

I, too, am so sorry to hear about what you are going through.  I made me sad.  I am really sick, too, but I have a husband and a boss who are worth their weight in gold.  Without my husband, I don't know how I would survive.  I wish there was something I could do other than giving you my love and thoughts.  Please remember that we are here for you.  This site is the best place I've ever been to help keep my emotional head above water.  Hearing that there are others out there just like me reminds me that I am not alone.  You are not alone, either.  If you can't find a support group where you live, talk to these guys on this site.  They have saved my sanity.  Love and support, Ravenwood.

No wander you are blue Bonnie, you poor poor lady.  It always amazes me that people can still not believe us - how many millions of us around the world can be so wrong.  My close family believe me now, but I still have people who have known me all my life that think i just need to pull myself together.  I don't really bother with them anymore.  

You are NOT a useless mum, get that right out of your head!  Most people feel tired and a bit groggy when they get up in the morning so they think if we'd just get ourselves up and dressed we would feel better.  What they find hard to believe is that for cfs sufferers this feeling just doesn't leave us once we're up and about (if we can get up).  You can tell your sister from me it's like waking up with flu everyday, ask her how she would like that?

As for feeling like a rubbish mum, why should you? I was helping around the home from about the age of at least 12 (washing, tidying, hoovering, even a bit of cooking).  Look at it this way, even if you were fit and well why shouldn't your kids of 13 and 15 be doing a bulk of the chores around the house, even if it's just on certain days to start with to bargain with them? They may not like it now but they will thank you when they are older and indpependent.  I would hate to have grown up being like some of my friends that had no idea about anything when they left home.  If you were prone to cfs anyway for some reason, no wander you got sick if you have 3 kids and none of them help you. 

As for your sister, tell her the child sitting help will resume when she helps you to get your kids to help around the house - you cannot be expected to get them to do this yourself if they are already unwilling and you don't have the energy to deal with them, you'll only end up feeling worse (if that's possible).

If your sister refuses to help you do this one thing that could improve both your situations, why should you look after her kids?  I never asked for help, as due to other peoples reactions I kept thinking that perhaps I just wasn't coping like other people do and perhaps I was just lazy compared to other people (which would be quite backwards thinking back cause i used to enjoy being active and could not understand other people at work that (by their own admission) were too lazy to use the stairs - perhaps like them I should have conserved my energy a bit more!).  Not asking for help and not thinking I really deserved it cause I should be able to cope like everyone else was probably part of my downfall - so please learn from others mistakes and don't feel selfish or lazy by needing help.

For years I couldn't get anyone to understand how bad it felt, I am now lucky enough to have a partner who uses the theory that we only have a shared amount of energy between us, so we will use just that amount of energy even if that means he's taking the strain.  I fully appreciate your sister has her own life to lead but the more help she can give you (even if it is just by encouraging your kids to do more) the more capable you will be of sitting for her when she needs.

It's good that you still see your children as a reason to not give up, I think the majority of sufferers have contemplated giving up at some point.  For many years I thought things would never change and don't get me wrong I am no where near fixed but I am glad I stuck around, life can still get brighter in the future even if you can't see it yet

sorry if i've gone on a bit but it really angered and upset me to hear about you going through this alone when there are people that are capable of helping you but won't  

 

Well stated Kisty!  I hope that you gain some comfort from these posts BB. You sound too hard on yourself -

Hi Bonnie,  When I first read your post a few days ago, I didn't know how to reply.  I have thought about you several times since and I would like to join the others who have given you encouragement.

You must talk to your doctor about the severity of your depression.  Tell her that you think of suicide and that you need help.  There may be some help available, such as occasional home care assistance.

Once every hour, get out of bed and move about your room, even if it is just for five minutes.  So for five minutes, straighten out your night table or hang a few things in the closet.  Then back to bed, knowing that you are doing the best that you can do!

Improving your relationship with your children is so important for your happiness and for theirs.  Muster all the energy you can to spend a few minutes a day with them.  When they come home after school, could you have a snack ready and then spend a few minutes talking about their day?  Nothing serious here, just some chat and hopefully some laughs wtih them! 

Now this is the most difficult of my suggestions - work on being grateful.  I know how difficult it is, but you must find things that you are grateful for.  Keep some notepaper by your bed a jot down a few things each day.  The gratitude will bring better things your way.

I hope that the responses have given you some hope and that you gain strength every day!

 

Bonnieblue79, I just found your post from a search this morning because I have been feeling so desperate and yes, suicidal, because of my medical condition and, living in the US, feeling that there is no safety net and only increasing social shame because I have a disability and am under 50. 

I won't go into my particular circumstances, but just wanted to say I really commiserate with where you are and I thank you so much for sharing this us. By reading your comments I feel less alone and crazy this morning, when I otherwise thought that'd be impossible. One of the most maddening aspects of this condition (mine is related to my Ehlers-Danlos Syndrome, so I'm not sure it's ME/SEID/CFS, but the exertional exhaustion is debilitating) is how isolating it is because you're too exhausted, and your exhaustion level is too unpredictable, to get out and build any kind of social support network beyond the family members who may be toxic for their own reasons and eagerly blame us for our medical condition. Some days I lay here helplessly and wait for my fiance to leave me, my crazy alcoholic ex-husband to manage to get custody, my invalidating mother/sister who are awash in cash to finally triumph that the one family member who ever did anything for herself (I too was very successful and that was threatening to the sick family system) is finally crushed in bed. 

Not being able to get out and get support from the many compassionate people out there is what is the most debilitating to me, because I firmly believe that through other emotionally healthy people (and my faith in God through that community) I would have enough strength to, as another poster said, be a human "be"ing and not a human "do"ing. 

Anyway, have to run to do the five daily tasks I can do each day before collapsing, but I just wanted to say I hope you keep posting and that I admire your tenacity and your commitment to your children. I have them too, and they ARE THE REASON TO KEEP GOING. Keep the faith, and keep posting. Warm thoughts to you from the southern United States. 

Im sorry to hear what your going through and the hard time that your having. Sometimes it seems those closest to us take advantage and help us the least of all.

It is a support to know that we can come onto forums like this and share our feelings and problems knowing there are others out there too who are experiencing similar things.

I hope your family dont take advantage any more and that things get better for you. Best wishes

Hi Bonnie..So sorry to read your post, but i know how you feel. I have three adult children in their late thirties. They don't do a thing for me or visit. I am home alone all day,the younger daughter may phone and ask if I will have her three kids, and I often say no as I am in so much pain and that it. The phone goes down and never hear from her for weeks. So its just me and the dog, at least he listens to me and he's great company. You can pm me if you want to chat..