Sunday, 1 May 2011

An Ocean of Grief

I've had a few really difficult weeks in terms of increased symptoms, after over-extending myself in various ways, and have had no choice but to not be online much, & to rest as much as I can stand it. I haven't had any spare energy to give, so I've had to just stop, and deal with the emotional fallout of that - which has been quite extreme given the amount I am repressing already on any given day. I have so much grief and hurt hiding inside me - and the main way I keep it shoved down deep inside is by keeping my mind busy.

So unfortunately, the side effect, for me, of slowing down is that I have more time to think not to mention feel. There's nothing to fill the silence inside my mind. When I'm able to stay a little busier - be online, connect with people, write on my blog, do small jobs on the forum I work on, read books ... it gives me less time to really feel what I'm going through. Less time to focus on how difficult, uncertain, scary and intense it is to be so ill, dependant, and isolated. Less time to remember all the things I've lost, and the things I may never have... To feel guilty about the burden I place on everyone around me... And most of all to remember that with each passing year I am missing the chance of finding a special someone to share my life with, who will love me as me, and with whom I can bear a child. At 35, with an pre-existing infertility issue, the chances of me ever having a child of my own are probably now completely lost. When I can't keep my mind busy, those long hidden things tend to come flooding back in .... So needless to say, I'm really struggling right now.

Image © Tran Nguyen - 'Drowning in a sea of uncertainty' - Permission granted to use by artist
Sometimes I think my life is rather like I'm constantly swimming in this huge ocean of emotion ... and on a good day, when I can stay busy, I manage to swim, and so stay afloat - but bad days feel like I've been pulled under by a rip tide, and bashed my head on a rock. I'm stunned, and these waves just keep hitting me & I'm powerless to do anything about it. Unable to keep my head above water. I know it's really bad when I don't even feel anger anymore, just a deep, dark sense of despair, fear, fatigue & hopelessness.

There's been so much grief in my life, and often that's all I can see ahead of me, too. I don't see that as depression, or even a sign that I'm giving up hope ... it's just that the reality of my situation is that there's not even a little bit of certainty in my life or my future - and there's an overwhelming likelihood that this state of loss and grief will continue indefinitely, until I've missed every major milestone in a 'normal' person's life, and lost most of the good things that I did have.

Image of woman sinking into the ocean, copyright MJ Photography and Design - View her Flickr page here!I don't plan on giving up the fight, but I feel that every year that goes by with me still so severely ill is another battle lost ... and takes me another step closer to losing the war. And maybe that's another reason for the strength of my feeling right now - it's my 35th birthday next month - another year gone by without me being able to leave my bed and live my life.

I try so hard to hang onto the good things, and not to give up hope - but it's the hardest battle I can imagine! Honestly, this life I'm living could barely be called a life, and it's really, really hard to keep fighting when everything seems to be against me, and when I'm just so darn tired of it all. I don't even have to simply fight my body, my illness ... I also have to fight just to be recognised as genuinely ill. To get the medical treatment I need. The acceptance, support and love I need. Nothing comes easily when you have M.E. I'm sicker & more disabled than the majority of people with (for example) MS, Cancer, Aids ... yet am treated like there's nothing really wrong with me physically. I just can't begin to describe how completely soul destroying that can be.

Hope is a choice, not a feeling! - Photograph copyright Ashley Rose - View her Flickr page here
I am so alone medically - half of my symptoms haven't even been officially documented, never mind tested & diagnosed. I sometimes think ME is loneliness. I may as well be in a country with no medical care, because I receive barely any support or treatment. This situation doesn't exactly render my default setting 'hopeful', rather, that's something I have to fight for. Have to earn.

My conclusion? Hope is a choice not a feeling!!

My life ... I suppose all of our lives, are a complex twist of pain, joy, hope & grief all muddled into one. Some of us have more pain and loss than others - but the principle remains the same however much we hurt - we have to choose whether to go on and live through it, try to forge out some semblance of happiness - or give up and fall into our pain and stop seeing the joy. For most people, there's probably a close to even balance of good and bad. Sometimes, for some of us, our lives overbalance into the negatives and we then have to work even harder to see the positives - and to find enough of a reason to go on.

Living in a State of Emotional Darkness - Photograph copyright madamepsychosis - View her Flickr site hereSome days I'm really struggling to find that reason. Much of the reason I do keep fighting is for the people I love - because I don't want to hurt them by giving up - but that isn't enough to make me happy, only enough to help me survive. I feel like I'm living in a state of emotional darkness. That's not to say that the light doesn't occasionally manage to flicker through. There are moments of love, of beauty, of memory - but those moments are all shadowed to some extent. I honestly can't remember the last time I felt pure, unfiltered happiness - and that in itself is a massive point of grief.

I feel like I should try to end this post on a positive note ... but honestly, I just don't think I have it in me right now. Life is tough sometimes, and this is one of those times.

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. Whoa. It sounds like you and I have been living the same past couple of weeks.

    I have been struggling as well. Sunday (yesterday) I had a total meltdown. The idea of month five in a severe relapse, more time in darkness and reduced talking and listening was just too much.

    I'm back on top today (I think) but I just kept finding myself asking "how does one continue to do this" or "how does one not talk, see or listen" even if just for hours, days or God forbid, weeks."

    I'm really proud of you for writing this post. I agree with you that this isn't depression, it's our reality and getting it out into the open (or the light as I say) I think helps us to process it and then let it go.

    BTW, no need to reply if you need to rest! It's totally okay with me.

    Just wanted you to know that I think you rock and I really am proud of you!

  2. If you are open THE WORDS you NEED Will Appear! Or ?.
    I posted A video on YouTube A few years ago--Because NO ONE
    Else to talk to & I needed too scream! Alot of PEOPLE need to
    Scream Because I got ALOT of response for my honesty.

    I cried At Other people's Fibro Hell Stories ANd The comments
    Gave me strength to keep posting.

    I don't have MUCH energy now, My Posts can be Googled
    Fibro Hell Michelle, Mcertonio, Michelle Certonio,

    THE WORDS I NEEDED are yours, Thank You!

    F-H--Fibro Hell--Many have asked me to post or do A video
    For Their families to understand & I did, When I could.

    Today my Younger brother Asked me why I did not travel to
    Utah (from Florida) For My other Brothers Funeral.

    IT RIPPED MY HEART OUT! My Mother-Elly, & My older Brother Mark, Well I have TRIED TO TELL THEM FOR YEARS! I have been
    Completely Disabled since 2004--Of course fighting For my entire life. I emailed my Big Bro, Asked him to explain Why I could not attend--BECAUSE MY mom Elly, Made it clear sine 1999
    She DID NOT BELIEVE MY ILLNESS. I think it is because I did not
    Give her money any more. ANY WAY my story IS WELL documented! And I have helped ALL as much as I can.

    Since I could no longer work, I was A Singer--I painted, NEVER thought I could BUT The emotion had to GO somewhere!
    I painted, Wrote & added Pictures For A NICE TRIBUTE, I Asked
    My Bro to share, I asked many times, Now time has passed
    NO ONE from my family said or acknowledge--Which I am used to BUT to have--ASK WHY was Another Knife to my Heart.

    My sister killed herself--No More pain was epitah, My Grandmother--More MOM Than Elly Died AND she suffered
    With Un-Diagnosed Pain her entire life. I Lost my life BUT HEY!
    I STILL LOOK GOOD! AHHHG! Thank God your words were Here
    When I needed them! I am proud my words have helped other people. family, needs to be CHOSEN, because our life is too difficult to fight people that are supposed to love & support us.

    Forgive my Grammar & ALL! Fibro HELL MICHELLE

  3. Hi,

    In my 26th year with ME. Took 10 years to get a diagnosis, during which my doctors tried to tell me I was imagining it all, or making it up. 10 years which cost me my health, my marriage and, eventually, my sanity.

    Diagnosed in 1995, I'm still waiting for anyone to suggest treatment. Trouble is, there isn't any, not really.

    So I self-medicate - like many with ME I depend on a selection of supplements to keep me on my feet (and they do work - if I run out, I get worse' I have a stringent test procedure too).

    I also have severe COPD and (now) heart failure, and for the last few years I've been writing a blog offering information and support to those suffering from the conditions of which I have experience, plus a whole raft of more general disability info. Blog's pulled in a bunch of accolades from medical professionals, too.

    I've had to call a halt to giving personal advice - I'm way too ill now and it's not going to go away - but my blog's there for anyone who cares to hunt through it (use the search box), added to pretty much every day.

    Oh, and I'm the rantsfromron who's just followed you on Twitter.

    Take care - and don't give up hope (and I do know how hard that can be sometimes...).


  4. Great post, it's so hard to deal with the emotional fall out of having me/cfs.
    I think birthdays are one of the worst things about having me/cfs as is the 'onset' anniversary. So I'd like to put birthdays on hold officially until we work out this frustrating illness. Okay. I've tried putting them on hold for various reasons before, like avoiding wrinkles/growing up/responsibilites etc but this time I am more birthdays!

    Something else you wrote really resonated with me and I wanted to share it with you, the darkness that surrounds me when I am too tired to distract myself and yet still unable to sleep...This is when thoughts and feelings press down and try to ambush me with facing the seriousness of this illness. When this happens i have two responses, one is to check my blood sugar levels (depressingly helpful) and two is to write a gratitude list. If those to responses don't help, well sometimes all you can do is cry and try not to get mascara on the pillow.

    Great blogs keep it up.

    xx hope you feel a bit brighter soon.

  5. This is just to let you know that I reposted this on facebook. Beautifully said, Susannah. I hate how the grief creeps in to all those empty hours.

  6. Susannah

    Your blog is beautifully written, although sad.

    You have described being at the 'bottom of the well of ME' trying to see up into the daylight so accurately.
    Your honesty in describing your struggle with not only your illness, but the raw feelings that come with this illness struck such a cord with me and I'm sure with many others.

    I agree one of the worst aspects is when your so ill you can not watch, listen to, read or even have visitors, it does give you too much time to think and mull over our lost lives. But there is nothing else to do but keep fighting the awful thoughts, frustrations and anger we feel.

    Your right HOPE is a choice
    Magic and miracles dont exsist, so HOPE is all we have
    Your going to have HOPE (I will send it telepathiclly if needed)
    I'm going to have HOPE
    Everyone fighting this illness needs to keep on hoping things will get better

    Writing things down is said to have a cathartic effect, so although writing your blog may not help your illness, I HOPE it got a lot out of your system.

    HOPING your feeling stronger soon


  7. I'm so sorry all of you that I haven't been back here to comment until now. I've been struggling to keep up with ... well, pretty much everything, lol. Thanks to all of you for your kind words - they're so appreciated, especially at a time like this!

    Dominique, thank you so much for your support - I actually have felt much better about things since I wrote this post. I think you were right that getting it out into the light helps us to process things then let them go. This is my reality and it's not like it's likely to get dramatically better anytime soon ... but I feel a little more settled, somehow. Perhaps a combination of writing, and what I've been doing by researching my symptoms and taking it to my GP to try to get them dealt with better, is making me feel more like I'm in control again.

    Michelle, I'm so sorry that your family doesn't understand. I know how hard that is!! I guess sometimes all we can do is take care of ourselves in whatever way we need to ... and hope that other people will eventually come to understand.

    Ron - Wow. God. I can't imagine another 11 years living with ME. You must be an astonishingly strong person!! I'm so sorry it took you 10 years to get a diagnosis. I can only imagine how that must have affected your body and your life! May I ask what supplements you are taking? I have never been able to get hold of a list of what things might help me if I were to take them. I found your blog and am now following - thanks. :)

    Hi Kiwi, good to see you here again. :) Wouldn't it be nice if we could put birthdays on hold?? ;) I'd quite like to just not get any older too, while I was at it! I'm sorry that you resonate so closely, because I know how hard it is ... and honestly, no-one deserves to live like this!!!

    No Poster Girl - Thanks so much for the repost, wow, I so appreciate that!! :) Thanks for your kind words, too. :)

    Suz - The bottom of the well of ME : Well described!! That's exactly how it feels. I'm so sorry that you also relate to these feelings. I guess we're all in this together, even when we feel so alone, huh? I'm hoping for YOU, also!