Overwhelmed…In The Best Possible Way

This post has been inspired by all the amazing support that I have received over the past day…

I have always been quite reserved about sharing my blog with people, and have largely relied on them “stumbling” upon it by accident, and then deciding to stay because they identified with what I have to say. It, somehow, seemed easier to share the often brutal reality of my life with strangers. Strangers are less personally invested in my happiness by the very virtue of not knowing me, whereas friends and family feel guilty when they cannot “fix” things for me. They take my honest expression of the struggles and frustrations personally – as though it is somehow their fault that my life is what it is. And I’ve never wanted to hand them that burden. I’ve presented my “happy face” to the world, and only allowed them glimpses of myself. Carefully thought out words and phrases on status updates and forum posts. I presented the “me” that I thought the world could deal with most easily.

On the 14th February 2012, my husband and I became British citizens. It’s been a long and arduous process to get to that point (not to mention hugely expensive), and we were so excited about it all. In fact, I was so excited that as soon as the Citizenship Ceremony was over, I posted photos of the two of us holding our certificates on Facebook, Twitter and BlackBerry Messenger.

At our Citizenship Ceremony

And then the questions started. I hadn’t really considered that the picture of me in my wheelchair would cause so much interest. But it did. Some people were simply curious, while others were shocked or devastated. I suddenly received messages and emails, and even my mother was quietly asked what was wrong with me. It was as though my carelessly posted pictures suddenly drew back the curtain, and allowed everyone a glimpse of the reality that I’d worked so hard to hide. I was more surprised than anyone at the responses I received. And it was wonderful. An out-pouring of goodwill from those I had kept at arm’s length for so long.

And, in that moment, I decided to share my blog with my friends and family. I realised that they were strong and gracious enough to deal with all the messy emotions that my illness spills out of me. I posted a link to my blog on Facebook (it was such a scary thing to do), and invited the world inside my head. Invited them to see me for who I really am, and judge me for it. Without question, it’s one of the best things I have ever done. The response has been more emotional than I could have imagined, for both myself and them. I’ve cried more happy tears in the last 24 hours than I have in a very long time. I touched their lives, and they in turn touched mine. Tentatively. Beautifully. And with such honesty.

I’m glowing inside.

8 Responses to “Overwhelmed…In The Best Possible Way”

  1. sarah Says:

    Thankyou so much for this blog, it’s so beautifully written and says so much to me, and many others I’m sure.

    • I’m glad that you’re enjoying it. And thank you for taking the time to post a comment. It lets me know that what I have to share matters, even if it’s only in a small way.


  2. Esther Says:

    Dearest Sam
    There have been some times when things are a bit rough, and because of pride (I’ll admit it), I don’t share it. I only talk about it “after”. And the response is always the same – “Why didn’t you tell me??!!” In fact, I think they are rather annoyed at me. And I’ve come to realize that they love me. They need to be apart of my life. They need to know that they were given the opportunity to help, even if it’s a simple sms. I feel honoured to have been let into your life. Because I feel I’ve been given to choice to help in anyway I can. Thank you for being so brave. Thank you for being such a inspiration. I love you. Es

    • After down playing the extent that my illness has changed my life for so long, it’s a very strange feeling to know that so many of my friends now know how much I’m struggling. And, really, all that I hope to achieve by laying myself bare like this, is to be able to say to people “I’m actually having a really crap day”, without them wondering why, or feeling that they need to make me feel better…I no longer have to explain myself and my situation. And, this blog has helped me connect/re-connect with friends who I only spoke to rarely, which has been amazing. When I’m as house bound as I am these days, the majority of my social interaction happens online, so having all these new contacts enriches my life no end! And, I’m really glad that you’ve been reading my blog – we have so much amazing history together! Lots of love.

  3. Corri Says:

    Not to jump on the bandwagon here but I have actually been composing a reply in my head since you started posting again. It’s a huge chunk of my physical and emotional life to sum up, but I suppose I’ll just go right ahead and hope it conveys my feelings properly as is.

    I know I’ve said it before, but I feel that I owe my current condition to you and your willingness to talk about it with me and make suggestions. To your taking me seriously sans diagnosis instead of doing like the doctors and passing it off as in my head, as not possibly ME. If the CFS/ME demon has flat out drop kicked you, he’s merely tapped me on the shoulder and I believe fully that that is in no small part attributable to you. My declination abruptly slowed, perhaps even plateaued, the instant I began taking all your advice and pursuing your research suggestions. Instead of spending precious time fighting it, I was able to immediately begin precautionary and appropriate reactionary actions. It may not work forever but I’ll take what I can get. Regardless of what the future holds for either of us – you are my hero and I can never express my unending gratitude. No matter how well or poorly you are doing, or how you may feel about yourself, know that you have my respect, my sympathy, and my open arms should you need them.

    • Oh, Corri! Reading your comment last night left me in floods of tears. Even Chris said that it’s the nicest thing anyone could possibly have said to me. I’m so pleased and honoured that my journey (and the time that I spent fighting in vain against the restrictions it imposed on my life), have made a difference to your own journey through ME/CFS. What a rare and wonderful privilege! You thank me for taking your symptoms seriously, yet all I did was recognise my own symptoms being repeated in your voice. So, I’m hardly deserving of much gratitude when all I did was listen. Regardless, I am grateful that (as crappy as it is), we get to walk this road together – it’s always good to have someone who knows EXACTLY what you’re going through. You and a friend of mine, Fiona, fill that role for me. We can talk about the hard times and the little victories. So, thank YOU for being who and what you are for me! I’ll be forever grateful.

  4. Just found your blog. Please have a look at http://www.cpnhelp.org. Also read about Sarah Longlands and her husband David Wheldon (both British) http://cockroachcatcher.blogspot.com.au/2008/02/multiple-sclerosis-iguanas-and-wrong.html.
    I’ve had ME/CFS for 30 years now and started an antibiotic protocol in June 2005 (the Marshall Protocol) and made progress. When I swapped to the Chlamydia pneumoniae protocol in August 2010, I made heaps more progress. Presently I’m off antibiotics and doing amazingly well for a 65 year old woman with such a long history of illness. Chronic stealth infections is what we have and they need chronic long term administration of different antibiotics. Here in lies the rub in Australia and sounds like Britain as well, getting a GP to come on board. I’ve had to pay for all my abx as they are ‘off label’ but my health fund has contributed some rebates. I can’t emphasise enough that long term antibiotic treatment is the answer. A colleague and myself are pitching a documentary on this very subject right now in Australia.
    I sincerely wish you and so many others who’ve fallen through the cracks much better health and recognition and support of these debilitating and devastating illness.es

  5. pamela Says:

    I have also suffered with M.E for 30 years. I have spent thousands on treatment that has not helped. I have tried everything possible, nothing helps. I read with interest that someone else also had Bruscelosis? I contracted bruscelosis in 1986. I had just given birth to my third child, and within a few months after contracting this, my health just deteriorated. I was treated for depression, and then had a lot of stress in my life, moves etc. never had time to get proper diagnosis. my health got worse , i got weaker and weaker , and the pain and continual fatigue was overwhelming. I experienced excruciating PMS and this is how i was enventually diagnosed by a GP in 1995. She tried Vit b12 injection, magnesium , belyrubin. no help. antidepressants no good. cant afford any more treatment either.

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