Sunday, 8 May 2016

M.E. On...

I don't make a point of talking about being ill on my blogs.  Though I don't go out of my way to hide it either. I reference it occasionally, usually when explaining a long absence from blogging! I've had it in my mind for a while (since last year or perhaps even before then) to make more of a regular thing of blogging about what it's really like living with a chronic illness. It's not like it's a big part of my life, it's my entire life (and has been for almost 14 years) and dictates everything I do (or rather don't).  There's several reasons why I haven't spoken about it in-depth before. The main one being not wanting to come across as a moaner or to talk negatively. My blogs are my "happy place", they keep me going and I'm a firm believer in emotions being contagious (even through reading) and I'd really hate for this blog to be a depressing read or have you go away feeling sad and thus liable to avoid my blog forever more! The last thing I'd want is to alienate readers or drive you away when you've likely come for shiny shoes! I've realised recently that despite what I'm going through, I'm quite a positive person, so it wouldn't really be a fair representation of me if it was all doom and gloom (though my everyday life generally is if I'm forced to think about it).  Certainly when it comes to blogging, I try to be chirpy and positive and when I'm talking about things I love (hello shoes!) it's not difficult. I let the words flow the way they would in real life (if I were talking to a friend), the result naturally being enthusiastic and upbeat. So it's out of my comfort zone to write a post that doesn't have either a happy conclusion, something constructive or even a lesson to be learned.

Lately I've become more aware of the way I do things and why I do them that way (more on that another day), so perhaps my way of coping with being ill, is by not dwelling on it or thinking about it too much.  However, I can't help but feel like I have this platform and am perhaps doing a disservice to other chronically ill people, by not using it. Whether that's sharing similar views with others going through the same thing, spreading awareness to those that don't know what it's like or discussing differences in the illness (because it's one of those that varies a lot from person to person). I constantly play down the struggles I'm going through, but I'm recognising this now and even forced myself not to begin this post with an apology for not blogging for a few weeks! I have to stop making excuses, stop apologising for being ill and stop feeling bad for not managing to keep up the workload of a "normal" person. I'm not normal, I'm ill! That in itself is an injustice to fellow sufferers and it's not fair to me either. I also realise it's how some of you found me on social media or this blog and then what do I do? I don't talk about it! That's not right.

So, I'm starting a new feature called "M.E. On..." (see what I did there?) and whichever subject matter I feel like discussing.  I'm going to be completely honest and sometimes there won't be a happy round-off, but life isn't perfect, bad stuff happens and there's no use pretending otherwise.  There will still hopefully be time for shoes and makeup and the fancy, fluffy stuff, but interspersed with the serious bits for a more authentic or realistic reflection of what's really going on in my world.  I realise it might not be as 'popular' or appealing as the other stuff, but it's important to me.  How can I expect others to understand what I'm going through, if I don't discuss it or gloss over it?  Let me know what you think, though like I say, it's something I'm wanting to do regardless.  Each time, I'm happy to answer any questions you may have in the comments below or use them as a discussion topic next time, if it's worth highlighting for everyone.    


  1. You know I will always, read, enjoy and comment on whatever you wrote-you are an engaging narrator!! So please do talk about it! By the way, you never finished, 'when life sucks...' -am still waiting for that!!!x

  2. Thank you for this! As a chronically ill person with Type 1 insulin dependent diabetes, borderline autism/ Aspergers, chronic fatigue and fibromyalgia (all from CBS 699 mutation), this is a big deal to see. Those of us who are chronically unwell seem to our families (or at least mine) or to the general public to be whiners and "It's all in our heads" even though scientific medical testing can prove otherwise.

    For this reason, we are silent to the world, and though we might look ok, and of course stylish, on the outside, it doesn't mean we are feeling well, or having energy on the inside. (I mean, I always try to look stylish, no matter how bad I feel, because you can't let your illness take everything from you, and looking good makes you feel better)

    And people can take it personally, if we can't be there for them or cancel dates with them, when its not about them, but about our pain or energy level. I even do that myself with my friends who have similar issues and I have to remind myself that they are not ghosting me, but most probably trying to get their needed "beauty rest" as we sometimes need more than a person without "issues".

    This is a hard thing to admit or write about in public, and so I applaud you. The more of us who speak up, it will encourage others to come out of the closet.

    In my personal life, I am very gregarious and speak to anyone I meet on the street and if the subject comes up, I do mention it, and it turns out many people are dealing with some health issue or another, but also, do not mention it for fear of being looked at as a negative Nancy, but my feeling is, is that if someone dealing with chronic illness gets their butt up and does stuff, like all the blogging and photoing you do, or they get themselves out of the house or whatever, then they are being the total opposite of negative, because to keep on keeping on in spite of a large chronic illness millstone around one's neck, it the very epitome of positivity.

    People used to say sometimes that Kurt Vonnegut was sort of negative, but I disagree, because the truly negative person gives up and does nothing, and yes Kurt grouched a bit in his books, but they were also funny and he took the trouble to write them, and a truly negative person creates nothing. Anyone who creates, even if they are sometimes negative, is in actuality a hopeful positive person because they are making the effort and keeping on keeping on.

    So thanks again, for this post! It took a lot of courage and I really appreciate it! :)

    PS: If I was more computer savvy, I would put a photo of that cheesy 70's poster of the guy that says "Keep on Truckin'" or the cat hanging from the branch "Hang in There Baby". At any rate to anyone reading this who is dealing with some sort of chronic illness, "Keep on Truckin'" and "Hang in There Baby"!

    1. Thanks Rebecca, you're right, it is twice as hard being an 'invisible' illness and I find because I think people won't understand, I avoid talking about it. So this should be a good thing to share it all. Yeah, I found blogging was the only thing I've been able to (mostly) maintain throughout illness. I've given up designing, sketching, pattern making, dressmaking etc and a whole lot more, but this does help me stay in touch with topics of interest from my "past/healthy life".

  3. "I have to stop making excuses, stop apologising for being ill and stop feeling bad for not managing to keep up the workload of a "normal" person. I'm not normal, I'm ill! That in itself is an injustice to fellow sufferers and it's not fair to me either."

    This is exactly right. There's a lot of pushback against this notion, too, because folks often need to blame something for that struggle: you didn't try hard enough, you inconvenienced someone, etc, etc. But in reality, a disease is both blameless and yet to blame: it is the illness draining your strength and fogging your mind. You are just as inconvenienced and held hostage by it as your readers.

    That isn't a burden that needs to be assigned to you, but to your illness. You'really just trying to get by.

  4. I really look forward to reading your posts about ME Gemma. xx

    1. Thank you Leah, you always write so well about it, so I thought it was about time I recognised it more in my blogging life.

  5. I love reading your blog and I'm looking forward to reading your 'M.E on' posts too. Thanks for being so willing to be honest about how you're feeling and sharing that with us xx

  6. Always interested in hearing about your life, lovely. I have alluded to but have never quite been brave enough to go into detail of my illness, so I do understand how hard it can be to share.

    1. Thank you. I can understand the inner debate of what to share and what might be TMI, it's hard to know. I guess you just do what feels comfortable for you and that'll be different for each person.


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