new empowher article: 10 Observations About Recovery From CFS

[Jody]

I've written a new article for empowher.com called Chronic Fatigue Syndrome: 10 Observations About Recovery From CFS

 

[lisann]

hi Jody -
I don't think your link is working - at least it doesn't for me.
Lisa

 

[Jody]

Thanks for letting me know Lisa. I usually check the link but obviously, I didn't do it this time.

Give that link a try again, I fixed it. I think.

 

[Dreambirdie]

The link worked fine for me. GREAT article, Jody. I am behind you in recovery, but can relate to several of the points.

I am learning to not HOPE, which is a kiss of death for me, but rather to stay focused on where I am in the current moment and focus on what I CAN DO in that moment. It keeps me from getting too forlorn through all the ups and downs of this freaky illness.

MAYBE has become a very useful word in my vocabulary.


PS btw, did you ever watch that film on the link I sent you?

 

[lisann]

Thanks Jody, it works fine now.

Over the past few years I haven't been 'well' enough for long enough to think about it much .... but in the past I've tried several treatments that started to work (for a few weeks when they didn't anymore) and I remember thinking I have absolutely NO life to go back to - what would I do if I did get better? Excellent article.

I completely understand if you'd rather not say - but I'm so very curious which treatment finally helped you? And is the same treatment helping your son? I can only imagine how difficult to have a child w/ this horrible illness, but as painful as it must be it sounds like it has created a very special bond. (Like I said, if you don't talk about that, forget I asked!)

I'm very happy for you to be recovering!

Take care, Lisa

 

[justy]

Hi Jody, this is such a thoughtful and useful article -thank you!
I am now in what i feel is a recovery stage of the illness (ive recovered once before, but it was quicker last time) your thoughts on the mental and emotional aspects of recovery really struck a chord with me, i have also just started to take an interest in the wider world and go out and about a bit with my family and i realise that new people are working in the shops and libraries and swimming pools..... new shops and facilities and roads have been built that i dont recognise. A group that i set up in the town for breatsfeeding mothers is now run by women ive never met and who dont know who i am. Its strange and so daunting to be back out side and see that i dont know how everything works anymore. My confidence is slowly coming back but i still feel too vulnerable to go out alone and would love more independance.

Im becoming pretty fed up with the one steps fporwards one step back thing. I jumped in too fast and am now feeling pretty bad -i should recover quickly but today i realised i havent felt this bad in ages and the worry is that it will stay with me for months again.

Dreambirdie -i know how you feel about the Hope thing -Hope is a double edged sword for me - i need some, but too much so often leads to dissapointment when i try to over reach myself or believe that htis time im nearly there only to crash back again weeks later, losing all the ground i made.

Take care, Justy x

 

[Valentijn]

I have trouble with the hope thing too. Recently things got quite a bit better with my NMH, and my mom and fiance were pretty much doing a non-stop happy dance for a couple days. I've had things get somewhat better before, then stop getting better, then get worse, so I was reluctant to join in. I don't think they quite understood why I couldn't join in with the happy-dancing right away I imagine it's much much worse for someone that's been sick for years, instead of months.

I guess it was just a feeling of dread getting in the way of celebrating, the fear of it getting worse again. It's hard to celebrate when feeling that.

 

[November Girl]

Thanks for a good article. Sometimes I think that the saddest part of this illness is the isolation.

 

[Jody]

Hi Jody, this is such a thoughtful and useful article -thank you!
I am now in what i feel is a recovery stage of the illness (ive recovered once before, but it was quicker last time) your thoughts on the mental and emotional aspects of recovery really struck a chord with me, i have also just started to take an interest in the wider world and go out and about a bit with my family and i realise that new people are working in the shops and libraries and swimming pools..... new shops and facilities and roads have been built that i dont recognise. A group that i set up in the town for breatsfeeding mothers is now run by women ive never met and who dont know who i am. Its strange and so daunting to be back out side and see that i dont know how everything works anymore. My confidence is slowly coming back but i still feel too vulnerable to go out alone and would love more independance.

Im becoming pretty fed up with the one steps fporwards one step back thing. I jumped in too fast and am now feeling pretty bad -i should recover quickly but today i realised i havent felt this bad in ages and the worry is that it will stay with me for months again.

Dreambirdie -i know how you feel about the Hope thing -Hope is a double edged sword for me - i need some, but too much so often leads to dissapointment when i try to over reach myself or believe that htis time im nearly there only to crash back again weeks later, losing all the ground i made.

Take care, Justy x

Hi Justy

It's a rude shock to see how much the world has gone on without us. People changed, or moved away, kids grew up. I go for a walk through my town almost every day and it's like a ghost town for me in many ways. Lots of old memories here, and many people I could contact on a casual basis but I have no friends here anymore. It's eerie.

But we must hope. Even when we don't know any longer what to hope for. Hope for better things to be at the horizon. Expect soundness to come. I mean, if we don't ... then what?

 

[Jody]

I have trouble with the hope thing too. Recently things got quite a bit better with my NMH, and my mom and fiance were pretty much doing a non-stop happy dance for a couple days. I've had things get somewhat better before, then stop getting better, then get worse, so I was reluctant to join in. I don't think they quite understood why I couldn't join in with the happy-dancing right away I imagine it's much much worse for someone that's been sick for years, instead of months.

I guess it was just a feeling of dread getting in the way of celebrating, the fear of it getting worse again. It's hard to celebrate when feeling that.

Hi Valentijn,

I know what you mean. At present, I am much healthier than I was say five years ago. I am working online fulltime in a great job with great people. My husband and son are both getting better, though very slowly. But I am still at times almost levelled by fear of whatever may be ahead.

When you've been through hell, you don't forget what it was like. And for me at least, it crops up at times and shakes me.

 

[Jody]

Thanks for a good article. Sometimes I think that the saddest part of this illness is the isolation.

Hi November Girl

This illness is terribly isolating. I guess lots of chronic diseases are but not many are treated like it's some made-up condition, or some overreaction from wussy people who are just a bit tired and need to suck it up.

Thank goodness we have the internet and support from each other online. I remember what it was like not too many years ago to be sick, and not have that. To just have ... my bedroom. My living room. My husband and kids, thank goodness, and a wonderful naturopath. But nobody else outside of my four walls.

The realization of just how un-wanted and un-acknowledged and forgotten I have become as a result of this illness still takes me by surprise every single day. It still shocks me and leaves me feeling, How can this be?

 

[Dreambirdie]

The realization of just how un-wanted and un-acknowledged and forgotten I have become as a result of this illness still takes me by surprise every single day. It still shocks me and leaves me feeling, How can this be?

Hi Jody! Good to see you here again. Rereading your article I feel those familiar and painful pangs of longing to be well, but I know have a long way to go. A long long way. And yes, I am always reminded that it is NOT a straight line and that I need to be disciplined about not overdoing on days when I feel better.

The isolation of this illness is the absolutely worst thing about it. Having MCS on top of the CFS, I can't ever go out in public with too much risk to my health. That worsens the isolation and increases the feeling of being far removed from the flow of life.

I am so grateful for the online CFS community and this forum and our FB group. Before that I spent close to 30 years with no real support. Having it now makes a HUGE difference in my life.

 

[Jody]

Dreambirdie, good to hear from you. I haven't been here much for quite awhile. I love being able to work online fulltime, it's wonderful to be able to support my family finally. But it gets in the way of my spare time.

I came on here today because of the article I wrote for my friend Lynda who passed away. While I was here, I saw some posts I had not seen and had not answered.

Hey, someone sent me a friend request a few months ago. I kept it, and was going to click on it today but it looks like site renovations have made that obsolete? Doesn't seem to be any place to click.

 

[Dreambirdie]

Hey, someone sent me a friend request a few months ago. I kept it, and was going to click on it today but it looks like site renovations have made that obsolete? Doesn't seem to be any place to click.

Yes, there are some significant changes to how things work. I have no idea how or where to click for something like that...?

I am happy to hear you are doing so well. Good for you!

 

[Jody]

Thanks DB. I am hoping that your health will improve with great strides.

 

[Seven7]

The one thing about recovering (start to AGAIN!) I just realized how much my family has to give up for me. Trips on weekends, the type of activity we do is conditioned to me not walking too much.... And the feelings of how self centered I have been not to noticed this is a whole family sickness.

 

[Jody]

The one thing about recovering (start to AGAIN!) I just realized how much my family has to give up for me. Trips on weekends, the type of activity we do is conditioned to me not walking too much.... And the feelings of how self centered I have been not to noticed this is a whole family sickness.

Yeah, Inester 7, it really is a family sickness. My kids have been cheated out of so much. I barely dragged through two of my kids' weddings, could not help them beforehand, could not have been what I wanted to be, could not build into them how important they are, how much worth they have, how much they should have been given. But at least I was able to attend because they were in my area. Many chronics can't make it to their chidren's weddings.

Another daughter graduated from college with awards and honours. I couldn't go to the ceremony, couldn't take her out for lunch to celebrate, had no money to buy her a gift. She had other people there, but we weren't there, and it was not what it should have been.

In small ways every day my kids and husband were not shown how important they are. Did not have what they should have had. And in bigger ways, no family trips ... we were able to have a family picnic at a nearby park this year for the first time in a decade. We hardly knew how to act.

Everybody suffers.