Adjusting The Sails

( Updated and Extended, on August 14th )

I'm lying here feeling .... welll, honestly, I don't even know what I'm feeling.

I'm fairly sure that this post is going to be somewhat of  a rant ... a gush of feelings that have been brewing inside me for so long, I feel like I'm going to go mad if I don't get them out. I just have to write!!!

Sometimes it's really difficult to figure out what it is that I'm feeling!!! Everything gets so overwhelming, and it makes it hard to process things, and to pick out & identify individual emotions.

 My whole body is pulsing with twitches, spasms, buzzing & a sort of pulsing - and I've spent most of the last few hours barely able to move. Barely able to even think, through the pulsing.

I feel that I'm a really gloomy person when I feel, and especially when I post, like this. I'm very aware that I need to find the peace and the joy that comes with finding something to hope on once again... but its alluding me right now. I'm not depressed I don't think - not any more than anyone dealing with my kind of life and situation wuld be. But I am really overwhelmed right now - there's just too much happening all at once. New scary symptoms, flare ups, stuff going wrong at home, the issues (ongoing) with my doctor, who still hasn't delivered on promises ... and now various appointments to sort out and to somehow find a way to get through without ending up in a full blown relapse. On top of that we found a lump on my beautiful dog Jessa, yesterday, so she has to go to the vets (without me!!) today. :( I can't even do that, and it makes me feel so useless!!! To be honest, (big tough me is about to admit that ...) I'm scared, and I feel small and once again,  on a running theme, invisible. Nothing seems to be going right, or easily. (Gosh I have so much to tell you guys and I don't even know where to start! I can't do it now anyway. I'm surprised i've been able to keep writing for this long!)

I'm feeling so frustrated with myself, too. So utterly useless. I can't manage to do any of the million and one things that need doing... and unless you've been there, no-one can know just how hard that actually is. Lying in bed all day is not all it's cracked up to be!! I really, really hate watching Anna (my carer) struggle to do things for me, and I can't even help. I feel like a waste of space too much of the time.

You know what I hate about M.E.?? I hate that you can never fully adjust to it.
You can never get used to it, because suddenly, bam!!!! something else, some new symptom, changed intensity, or new disability hits you full in the face, and you have to statrt adjusting and coping all over again. 

Blowing Away by Jon McGovern

On top of all that, yesterday I had a full on, in my face, flashback of my ex husband attacking me. (I'm a survivor of domestic abuse, for those of you new to this blog) Just what I needed to get through the day, huh? Honestly, I thought I'd pretty much got over what he'd done to me, and all the fallout from the years of abuse, and other people's reactions to it - but this flashback was pretty intense and afterwards I felt broken. Heartbroken. That was the man I had loved, but he used me and he hurt me. So on top of being overwhelmed, scared, and everything else - now added to the mix is a grief so massive that I feel like I'm breaking into tiny pieces and being flung to the wind. All over again!

Recently it seems like I keep putting my hope in things, trying to find someone or something that can help ... but my hope gets hit every time and then the only things to do are either give in to depression and panic, (which I'm simply not willing to do!) or find something new to hope into. But I know I'm strong enough to get through all this - and whatever else life throws at me. I have up until now! Afterall, I have Anna, my best friend in the whole world, fighting my corner and caring for me instead of going off to live her own dreams. I have some amazing online friends, who have got me through so much over the years! I have my dogs. And a family who loves me even though they don't really understand and can't really deal with it all. And I have the online ME community, which is also making such a difference in my life. Perhaps those things are the only hope I need right now, they're sure strong enough positive's .... afterall, there are so many people out there going through so much more than this. And well, because of the people 'around me', at least I'm now standing up (well, not literally, HA ... ooh, the irony of that statement!) and trying to get the help I so desperately need, and deserve!!!!!!


◦ - - ღ - - - Because I do deserve it. We all do!!!!! - - - ღ - - ◦

And on that note, albeit it something I know in my head but not yet my heart, I'll end this post!

Note : Sorry about all the mess of this post. I'll try to edit out all the typo's etc, tidy it up, maybe add pics, and tag it etc, tomorrow .... somehow i just needed to get this out... though i feel i've done a very poor and very short job of expressing myself.

I think I just needed to speak, to vent as many of the things that are
splintering me, crack by slow crack, as possible .....
for my feelings to not be so invisible as I myself have begun to feel!!

Update : 14th August

Thank God, Jessa is ok! The vet found quite a lot of lumps actually - but they are, as I was hoping, just fatty lumps, which she's had a couple of times before. He doesn't even want to bother removing them right now, and won't, unless they get bigger or start to bother her in some way. So that was a huge relief for us!! :) :) :)

We had my other dog, Kiya, checked out at the same time, and ironically, the story there was more worrying. A while ago, a different vet at the practice found a lump on her liver. Kiya's starting to get old now, and has a lot of really severe skin and immune problems, so we decided (on the info the vet gave us) not to bother doing anything to get it further checked out, because I wouldn't want to put her through any intense treatments as she is going through enough already. However, the vet we saw this week (One of the practice owners) checked the lump for us, and he thinks that it's on her spleen, not her liver. He can't be sure till we get a scan, which we're doing next week - but if it is on her spleen, it would be a fairly simple operation to remove her spleen. A completely different scenario to it being on her liver!!!!

Jessa, on a walk with me & Anna, on a rare holiday to Scotland in 2009

Kiya, curled up behind my knee - she loves to be close to us! In 2010

I'm pretty mad with the vet we saw initially, as this issue could have been sorted months ago ... but then at the same time, I'm so glad that he was probably wrong, because this means that Kiya's life will probably be much longer than I was thinking! Guess we'll have more information after she's had her scan next week. It means a general anaesthetic, (which is always very stressful and worrying for me, because of the risks) but hopefully it'll be worth it - and my dogs usually come out looking less harried than I do, rofl!


I've finally got to adding pictures to this post, and getting rid of all the typo's (sheesh there were a lot!!) - I had hoped to do it the day after I wrote this post, but I've been really struggling to get online, and my cognitive functions have been pretty poor, so that just wasn't gonna happen. Ah well, got there in the end!! :)

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! :)

Adjusting The Sails

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Creating a strong network for survivors of abuse on Twitter at #5petals

Over the last few weeks my health has hit some pitfalls, probably caused by having to deal with home visits from dentists then going out to the surgery. As you know, my insomnia has been causing me problems again, and the night sweats are back with a vengeance ... and now a chest infection has taken hold - I have asthma so that's not great - plus I'm struggling with side affects from the antibiotics I'm on to combat the infection. All adds up to me being a miserable girl right now!

Except that oddly, I'm not. Actually, for the most part, I'm feeling kind of happy right now because despite all I've got going on, I've managed to achieve something over that time. I probably pushed myself too hard to do it - but there are some things that are just so worth it!

Though my blogs have been mostly about ME since I began writing here, I'm also a survivor of abuse, and (as much as I'm able to be, given my fairly drastic physical limitations), an abuse activist and supporter of other survivors.

11 years ago, I founded an online support group for survivors of abuse, at a time when there wasn't really any positive places online for survivors to go. I was in an abusive marriage, and I guess began the forum as much for me as for the members we hoped to bring in. Somewhat surprisingly and amazingly, that support forum has continued to thrive over the last 11 years, and is still going strong today! We've had our up's and downs as a forum, but the up's have always been more than the downs, and CS is still a really amazing place to be! We have many loyal staff, some who have been with us almost from the very beginning (!) and many wonderful members! :)

The first time I became bedbound, I had to give up being frontline staff on our forum. I just wasn't able to give our staff and members the kind of consistency & stability they needed - and it was simply too much for me personally. That loss is one of the things I've most grieved for over the years. My role now is much more in the background. I handle the finances, oversee the staff, help determine the direction the community forum goes in, and work on the backend of things in terms of the forum software and website. Basically the jobs that need doing but don't necessarily need to be done on any time scale - so I can fit things in as and when my body lets me. The staff team there have been really amazing at running the forum in my absence and also so supportive of me during these years - though it hasn't always been easy, going from working alongside each other many hours every day - to me popping in and out of things like a yo-yo!

Christian Survivors (CS), our community, was 11 years old this week. What an amazing milestone for an online group! It's one of the things I am most proud of in my life, bringing that group to life and seeing how wonderfully it has sprouted wings and flown - seeing how many people it's touched over the years, and how many lives have been improved by it being there! We cater to survivors of every type of abuse, and have members of any and all faiths and beliefs. This year is bringing lots of changes, as our staff are working on moving to a brand new forum software - our first such move in many, many years - and bringing in some new functionality for the forum, and newq goals for our organisation.

To mark the milestone, myself and my best friend & carer, Jo, who is also a staff member at CS, have been working on a couple of new things to launch there ... and I've managed to get an astounding amount of work done over the last few weeks despite all the up's and down's with my own health! I'm pretty much in crash mode now, lol, and will have to take a complete break for a couple of weeks to let my body calm back down - but it's just so good to actually achieve something!! So worth the push!!

What we've launched this week is a brand new project, based on our organisations' logo (an almond blossom with 5 petals). We've had a brand new version of our logo painted & designed to go along with the project, because we're using the image of the flower to sum up the 5 most important things about CS, & those we believe to be most important for survivors of abuse : Hope, Healing, Friendship, Safety, & Hope. The project we're launching is something we'll be using hopefully many times over the years, to give the survivor community a focus through things such as art projects we can work on together.

Along with this, we've launched a Twitter account for our organisation, which we hope to use to reach many survivors, and to network with other similar organisations. As the first & probably the most longterm 5 Petals project, we want to try to help provide a stronger network for survivors & survivor support agencies on Twitter. There are quite a few abuse hashtags on Twitter, but unfortunately most of them aren't used very well by survivors, both because they've been taken over with discussions on things like addiction recovery instead, and because many survivors simply don't know that they're there! So, we're going to be trying to start a new hashtag trend, specifically geared towards survivors and survivor issues, & also providing a place for bloggers and support organisations to network, and for activists to promote abuse issues on Twitter. In addition, CS will be regularly providing links to many great survivor resources all over the internet, including many abuse survivor blogs. If you're a survivor of abuse, or interested in promoting our cause, you can now find us at #5petals & CS's Twitter account is @SurvivorOasis. You can direct message us if you have a survivor blog or website and would like to be considered for us to promote your site.

I'm so excited about this project, though I'm aware it could take a long time and a lot of work to take off - and even more aware that we can't do it alone! If you'd consider working with us either as an individual, a blogger, or an organisation, to strengthen the survivor community on Twitter, please contact me & our team at email us - We'd love to partner with you in some way! You can help in the smallest of ways, simply by letting friends and family know about #5petals, or by officially partnering with CS to get this hashtag going! Sadly, up to 1 in 3 women experience physical or sexual violence at some time in their life, and one out of every five to seven men are sexually abused by the time they reach their eighteenth birthday - so the chances are that you know at least one survivor of abuse, and probably many more.

We're running an event right now where we're asking people if they would be willing to speak out for & to abuse survivors (to help them do the same!) by switching out their twitter avatar for a while, to use one of our #5petals avatars, to change their location on Twitter to #5petals, or to add a button to their website or blog. Doing so could provide a life line for someone you know! I really do believe that we can change things for the better, one person, one act, at a time. If you'd be willing to help out, I'd be really honoured! Please feel free to grab one of the buttons below. I've provided a grab code and a one click add to blogger button, or you can simply right click and download the image to your own computer. :) You can also find different buttons and banners on our website. I'd love to know if you decide to get involved!

"Small acts, when multiplied by millions of people, can transform the world." Howard Zinn

<a href="http://www.christiansurvivors.com/5petals.html" target="blank"><img src="http://www.christiansurvivors.com/banners/5petalsimage.png" alt="Find out about the new #5petals Twitter hashtag for survivors of abuse & abuse activist & support organisations!" title="Find out about the new #5petals Twitter hashtag for survivors of abuse & abuse activist & support organisations!" width="162" height="162" /></a>

<br /> <center><a href="http://www.christiansurvivors.com/5petals.html" target="blank"><img src="http://www.christiansurvivors.com/banners/5petalsimage.png" title="Find out about the new #5petals Twitter hashtag for survivors of abuse & abuse activist & support organisations!" alt="Find out about the new #5petals Twitter hashtag for survivors of abuse & abuse activist & support organisations!"></a></center><br />

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! :)

Creating a strong network for survivors of abuse on Twitter at #5petals

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There Will Never Be a More Beautiful You!

Thoughts on Negative Self Image

I was browsing the net yesterday and noticed one of those ad's for some kind of photo enhancing software, where there was a photo of a woman before and after they had manipulated the image. God it made me sad ... and so angry! In the first photo, the woman was beautiful and natural - and they'd taken that image and taken away everything that made her, her - turning the whole thing into something completely unattainable (they even removed her freckles!!), and quite honestly, nowhere near as beautiful.

What kind of a world do we live in when we're teaching our kids, not to mention ourselves, that they can never be beautiful??!!?? Where we believe that the photo's on the front of Elle or Vogue are real - that the models in the images actually look that way in real life. It teaches people lies. It teaches us (guys, not just girls!) to hate our own bodies!!

And it's not just the media to blame either. People are cruel to each other, from childhood right the way up to old age. Kids are teased, bullied, & abused at school (and even at home!) for being overweight, 'ugly', for not having the right clothes - for being different in any way, basically. Tiny kids as young as 5 or 6 are getting eating disorders because they believe people see them as fat, ugly, & disgusting - and they go on to be cruel to themselves, repeating all that same rubbish within their own minds, over and over again, for years - sometimes for a lifetime!


I've had body image issues, along with self esteem issues in general, since I was in infant school - that's kindergarten for you American's. I'm 34 now, and I still hate my body, my face, my weight, myself!!! I still don't know if what I see in the mirror is what I really look like! Schoolyard bullying started the whole thing off. For me, I was different purely because my family were Christians. I was isolated, degraded, and punished because I wasn't like the others. I was bullied in FIVE different schools, right up until age 18 - and every single one of those bullies used taunts about my physical image as an arrow straight to my heart.

And guess what? I went on, only around 4 years later, to marry a man who didn't know how to love me, and who repeated over and again all those messages the bullies at school had sent my way - only more severely, more violently - & with an even more damaging result. I didn't even realise for a long time that the things he was doing and saying to me weren't ok, because I'd spent almost my entire life being treated like that!

This man, my husband, the man who I loved and who I thought loved me, encouraged me to take laxatives so I'd lose weight; & he often refused to have sex with me without my being hidden under a sheet, with the lights out ... and it made me feel such deep, traumatic shame about myself - I can't even describe it to you. I hated myself!! And you know, I wasn't that fat, or that 'ugly'. I had some nice features, actually. I can look back now and say, ok I wasn't a beauty queen, but I wasn't that bad - and I made a lot of effort for him - but nothing was ever enough. Because the issue wasn't with me - it was with him


I think back to that time in my life now, and I think my view of myself was so broken. (I think it still is broken, though perhaps not quite so badly.) I think societys view of me/us/you is broken. And I'm angry at myself for letting other people, and the media, tell me how to view myself - not to mention angry at them for treating me so badly. I don't know what the answer is. I don't know how to change how we view & treat each other & ourselves. I just know that I don't want to live like this anymore. I don't want to look in the mirror and see some ugly freak looking back at me - I just want to see me.

It's National Eating Disorder Awareness (NEDA) in the US this week, and one of the featured organisations is Operation Beautiful, whose goal is to end negative self talk, one person & post it note at a time! They encourage women to leave encouraging notes on bathroom walls, for other women to read. When you see the huge amount of notes posted on their site, it somehow gives you faith in the human race again. So - post a note, take a photo, and send it to Operation Beautiful. You might just change someone's day, or even their life!

I'm confined to these 4 walls, so this is my post-it-note to all of you! You are beautiful. You are unique! Don't ever tell yourself otherwise!

“We do not need to change our bodies; we need to change the rules.”
~ Naomi Wolf ~





Small addition to original post :

Please also check out this music video which I happened upon after posting this blog this morning. It's by Jonny Diaz, and it's called 'a more beautiful you' - absolutely perfect for this post!

I've had some great feedback on this post so far - just wanted to say thank you! It wasn't easy to write about some of it ... but it was well worth it! :)

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! :)

There Will Never Be a More Beautiful You!

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