Saturday, September 22, 2012

Mourning Losses

I have had ME/CFS for ten years now.  You would think that I would be past all the disappointments and be done mourning the life I once had, that I would have adjusted by now to this new life filled with restrictions and limitations.  And I mostly have, but once in a while, the grief sneaks up behind and takes me by surprise, feeling almost as fresh as in those first years of loss.

I am generally quite happy and content these days.  That is simply my outlook on life.  I have always been happy with my life, during each of its unique phases, bearing up fairly well even during that devastating period when I first got CFS in 2002, mourning and then moving on.

But this has been a difficult week for me.  Three times this past week, I was out in public and suddenly felt so horrible, so fragile that I had to flee and felt as if I barely made it back home in time before collapsing.  This is unusual for me these days, in part because of medications and in large part because I so carefully monitor and restrict my activity level, living a very cautious life.  All the caution in the world didn't matter this week, though, and I crashed badly during my book group meeting Wednesday evening, as I wrote here earlier this week.

I have been trying to rest and recover, but it is slow going.  Some emotional upsets (probably caused in part from my crash - the emotional and physical effects of CFS are a never-ending cycle!) on Thursday set me back again, then I spent 90 minutes yesterday meeting with my disability lawyer, trying to prepare for my final disability hearing in December.  That was, again, both physically and emotionally exhausting, as our discussion focused mainly on how to prove that I am as sick as I claim to be (more on that later).

This morning, I was still feeling pretty crappy but trying to make the best of it - sitting out on the deck with a good book - when that sense of mourning just snuck up on me again.

The weather is gorgeous today.  We were supposed to go camping but had to cancel, in part because of how sick I've been this week (another sore point - the Social Security Administration thinks that since I can go camping, I can work).  Friends on Facebook are posting about all their fun activities this weekend, and I am feeling isolated and trapped.  Our local Oktoberfest is this weekend; we used to go every year with friends, to eat German food, drink beer, and watch the kids play the games and ride the rides.  There's no way I could manage a festival today.  The weather is perfect.  It used to be our family tradition to take a hike every weekend.  That's not even in the realm of possibility today!  Our house and yard are a mess, but I can't help with those.

Despite the sunshine, I am feeling a bit gloomy, just missing the old, active me.  It seems that with CFS, the mourning never really ends - though, of course, it is much rarer these days.

I am feeling a bit better, just writing about it.  It is so good to have a place where I can express these feelings, a place where everyone understands, where I don't need to worry about making anyone feel uncomfortable in the face of the realities of my illness.  Thanks for listening.  I am heading back out to the deck, to my very comfortable lounge chair and my very good book.  Hope you are enjoying your weekend!


upnorth said...

It is amazing all the losses we suffer. And initially when it happens, it's really hard, and then as you say, we move on.

I bet talking about it for disability doesn't help. It puts the focus on everything you can't or haven't been able to do because of this illness. Unearths some of those lost wishes and desires.

I participated in an interview this week as a participant talking about access to care for M.E. patients in Ontario. After the interview I was shaky and I realized part of it, was having to talk about these ten years of absolute struggle with illness and the lack of support (socially, medically). At the same time, a day or two later, I realized it had also been cathardic. Perhaps the disability process can be a bit like that for you too.

Anyways, I hope you are able to mourn these losses again and move past them. I would think something was wrong if we didn't. Sometimes it's a little like mourning a loved one who's passed. You move on, and then something small triggers the loss, and we mourn again.

Treat yourself with care this week. Thinking of you, Gail

Renee said...

I hope you enjoy your good book and the sunshine, Sue. I agree that being able to share openingly and honestly is such a relief. I, too, am grieving. And have been for several days. It just needs time to work through and is part of our lives as you say. I just get so frustrated at how much stress takes from our energy sources. Praying for you Sue....

The Herbalist's Cottage said...

((HUGS))) I wish I could express how I feel and going through. I have only a small glimpse into what you are going through via our dd. It breaks my heart watching her have to give up dream after dream. People not living with CFS have no idea really do they!

It is not fair!

The added stress of having to prove you are sick must be horrible.

Letting you know I care. Wish I could be closer so I could pop in and run the cleaner over for you and cook a meal or two.

Love Leanne

Anonymous said...

Know exactly how you feel. Next weekend it'll be 9 years for me. I've had a rough week too where another virus on top of the M.E. has floored me. I hope you feel a little better soon x

Sue Jackson said...

Thanks so much for your warmth and understanding, as always!

Hope your interview didn't take too much out of you!


Sue Jackson said...

So sorry that you are also going through a rough time, Renee. I feel as if you are such a close friend, even though we have never met in person! Thank you for the prayers - they are much appreciated.


Sue Jackson said...

I wish you loved closer, too, Leanne! Though you really couldn't get any farther away, could you? lol It would be so nice to sit and chat with a nice cup of herbal tea (the mess in the house could wait)!

Thanks for the warm thoughts -


Sue Jackson said...

I have been wondering, Irene, if exposure to a virus has worsened me this week, too.

And those anniversaries can be rough.

Hang in there and rest up - hope you are feeling better soon!


hkd said...

oh sue - your post just brought me to tears - i feel all those i have encountered through the blog world with this illness try and try so hard to put on the brave face - fight through "explaining" how sick we are sometimes endlessly - and trying to find hope and appreciation where we can - but the loss of self at times can be crushing - and i think you deserve a bit of grief like we all do - it doesn't have to consume us or define us - but i think we also owe it to ourselves to acknowledge our grief - and with that be so proud of yourself for moving on and living well in spite of the loss - i agree lately i feel just like you - thanks so much for sharing - it matters. with love, heather

Pamela said...

{{hugs}} I know exactly how you feel! You have such an amazing outlook on life, but seriously - one can't help but mourn every now & again. I do think that crashes make the emotional part of it harder, too!

Bloomin'Chick Jo said...

I'm sending you much love & many (((hugs))) right now because I know all too well how you're feeling; I've been going through a rough time lately too.

Anonymous said...

Hi Sue! I recently came across your blog and I read it nightly now. I have had CFS for 8 years now so I can relate to every one of your posts and I have found that so very refreshing. Your post today really hit home with me. Tonight is my 20 year class reunion but instead of attending with my fiance (who I graduated with) I am sitting at home feeling a bit sorry for myself and wishing I had my old life back. Mourning the loss of who I once was. I am usually an upbeat person and try my best to see the positive in things, I don't like to play the "woe is me" card. But tonight, I can honestly say, I feel a bit "woe is me". And much like you, I have come to accept the fact that I now have to live a more cautious life, and usually I am able to accept that. But it's times like tonight, not being able to attend a social function and visit with old friends, that triggers the mourning of my old life. But reading your post tonight has helped me through this bump in the road, to know that my feelings are normal makes a world of difference. I hope that you start to feel better soon. I too have had a recent crash and have had to flee many public places lately for the respit of my home. I understand what you are going through. Thank you for sharing your life with us who are dealing with this same illness. It takes great courage to put the words to paper. I hope you are feeling better soon and can get beyond this crash. Warm Regards! Krisi L.

Toni said...

Like everyone above, I know just how you feel. This is a rough weekend for me. Tony has gone to L.A. to visit our daughter and family. Our granddaughter is about to turn 12. He told me over that phone that she's suddenly acting just like a teenager. It made be very sad. She was born six months before I got sick. And so here she is a teenager and I feel like I missed all of her little girl years. Like you, I'm pretty good at accepting how things are but some days...some days...are just so hard.

ME CFS Self-help Guru said...

Thank you so much for your eloquent sharing. I think periodic re-emergence of grief is something we all go through. I usually find that given free expression and acceptance it soon flows to its conclusion. Unexpected crashes caused by things out of our control (viruses? season change?)are often the hardest to cope with. We get so used to believeing that if we are really careful about our illness management we can keep it under control, but its not always the case. I hope you feel better soon both physically and emotionally!

Cusp said...

Oh Sue, I think all PWME know exactly what you mean: know I do. Grief is never a 'linear' always takes many twists and a game of Snakes and Ladders and it only takes a chink of a past memory to have one sliding down the board sometimes :(

I think the stress of these disability assessments just cannot be under-estimated or understood by people who are well. They are SO demoralising and make you investigate and set down everything you cannot do anymore: make you focus on all the stuff you have to 'put to bed' so you can get on with living the new life.

You cope so wonderfully well with everything normally. Try to take things day by day and give yourself little treats in between.

We're always here to listen and support.

Sue Jackson said...

Thanks, Heather. It really means so much to me to hear that my sharing and writing matter!


Sue Jackson said...

Hi, Krisi -

Welcome! And thank you so much for taking the time to comment and share your own experiences.

I am so sorry you had to miss your 20-year reunion. I did make it to my 20-yr HS reunion but couldn't drink or stand much or stay very long - it was great to see everyone but I felt separate from everyone around me - that was right at the start of my illness so it was even harder.

I have never been able to make it to a college reunion, and my college friends sometimes get together for fun trips...and I could never manage that, either.

So, I totally understand what you are going through! I hope you had a good, cleansing pity party last night - sometimes it's just what we need.

I hope that you are feeling a bit better today - I'm sure you will feel ready soon to resume your "new normal"and move forward again.

I'm glad you're finding the blog helpful - I hope to see more of you around here!


Sue Jackson said...

Oh, Toni...I am so sorry to hear you are missing your granddaughter's birthday celebration. I know how important your family is to you.

Hope you are feeling a bit better about everything today and that Tony shared plenty of pictures with you!

Thinking of you...

Kat said...

I'm so sorry for all that you are going through. I have fibro/cfs also and was reminded of that yesterday when I tried to do lunch and shopping with some friends. After lunch and about an hour of shopping I was so wiped out that I barely made it home to bed while my friends went on shopping without me. It makes me sad and angry that I can't do more than a couple of hours out of bed each day. I feel like I live in bed now and it is isolating and depressing. I really sick of being so tired all the time and being in pain. :( I hope things work out for you and I will try to follow your blog from now on. Take care.