Introduction

FibroLily 14 Comments

Okay, so a little introduction about myself.
My name is Lily (not my real name) and I initially started this blog as a way to vent away my frustrations at having Fibromyalgia and the other auto-immune illnesses that have arisen as a result of it…also because Farm Heroes Super Saga wasn’t downloading and I was bored.

I was first diagnosed with Fibromyalgia back in 2007. Before that, I was fit, healthy and regularly attended weight training, yoga, Tai-Chi and kick-boxing. I also had an active social life and loved nothing more than a stroll through the park, attending music festivals, going to cinemas and ogling relics of the past at various museums, and all with my little Demon Seed by my side. Then I caught swine flu and suddenly my life as I once knew it, was taken away.
The after effects of the flu left me with a chest infection and then gastroenteritis and after a few weeks, I begun to suffer from violent body tremors which left me unable to walk or talk. I was sore and stiff and when I could eventually walk again, every step that I took, resulted in pain and tiredness. Eventually, a rather unsympathetic consultant diagnosed me with Fibromyalgia. No details were given nor were there any explanations. I was simply given a leaflet and told to go and look it up, so I did. I now know more about the condition then the so called experts.
The body tremors which contracted the muscles in my back, have never relaxed causing difficulty in walking. This affected my hips and then my legs and now I use a walking stick to get around. As well as the numerous symptoms of fibro, I now also suffer from ME, Osteoarthritis and Hypothyroidism and recently, was diagnosed with arthritis of the eyes. Yep, that is actually a thing.
Most days I am bed bound and my Demon Seed has now become my carer, even though he has to also contend with having high functioning autism. The guilt I feel about this is enormous. No child should ever have to take care of their parent. EVER. I still haven’t mourned the life that I once had and though I often feel like giving up, I still hold a little hope that one day, a cure will be found.
Wow, that was all a bit depressing. Bet you wished you hadn’t bothered to stop and have a read. 🙂

14 thoughts on “Introduction”

  1. I’m certainly glad that I bothered to stop and have a look. I had no idea your situation was quite like this. I knew something was up, as you would occasionally make slight references, but I was clueless on the whole picture. I miss the digital conversations we have had in the past, and there was a growing block of guilt that we hadn’t talked in a while. But now I am determined that we are going to talk again, even if it means stalking. Stalking can be fun, when done right and you wear the proper outfits. (Some nice jazz playing in the background helps as well.)

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    • Oh Mr Lageose, how I’ve missed you! I purposely didn’t mention the details of my conditions because I guess that I wanted to keep it and myself, separate from ‘Incoherent Ramblings.’
      I too miss our digital conversations. There were times when I thought, ooh, I need to talk to Brian about that. Like when a certain blogger that we both follow used the N word (I actually started sending you an email about that one) or when you posted something quite deep and meaningful on Facebook. But alas, sickness kept getting in the way and I let it slide. So feel no guilt, you wonderful man. And yes, stalking can be fun, although the men chained up in my cellar don’t appear to see the humour in it…killjoys. So I shall endeavour to stalk you once again…right after I have a nap. 🙂

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      • Ohhh, you hit the nail on the head, as I miss the exact things that you mention. When that certain blogger threw out that word, and was DEFIANT about it, I was all in a tizzy. I felt dirty that I had actually tried to help this person gain followers. (For the record, I haven’t been back since that happened. I actually composed a lengthy comment in response, but then I just let it go. I shouldn’t have, but I did, because you have to choose your battles to remain stable in this life.)

        And yes, those “deep” posts of mine. I’m not lying when I say that there are still times when I peck out a particular line and think “oh, I bet Lily/Not-Really-Lily-But-I-Don’t-Pry would LOVE those words”. So we need to rekindle our passionately platonic relationship just for our own sanity, as we both offer each other unique balms that are rare but strong. (There’s a poem somewhere in that last sentence, really.) And by the way, if any of the men in your cellar contingent shows a fondness for Sarah McLachlan songs, send him my way. I’m sure I could turn him. Cheers!

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        • I gasped. I actually gasped when I saw that word and my heart kinda stopped a little. The funny thing was that the next day, she put up a post thanking both you and I and one other blogger for our continued support. When nobody replied, she took it down. Turns out she wasn’t so thankful after all. You did the right thing in letting it go. Even if she knew she was wrong, she would have fought snaggle tooth and talon claw for her right to say whatever she wanted to say. Suffice to say, I haven’t been back either.

          Okay, the fb posts may not have been deeply profound, but there were a couple where you didn’t reveal much but what you did write provoked a reaction, and it wasn’t to go take a nap. The thing about me is that I’m like the shy kid in school when it comes to social networking. I get scared that I’m going to say the wrong thing, or that my opinions are worth nothing. Therefore, I just let it go…ooh, I came over all Elsa there.
          Btw, Lily is a nickname, as in Lily of the valley, that highly poisonous plant. I think my friends were trying to tell me something…bastards.
          And there is indeed a poem in that sentence. Let me know what it is and I’ll plagiarise the hell our of it.
          As for my cellar dwellers, I’m pretty sure that all it will take to turn them is you helping them escape. Seriously, captive men can be so ungrateful.

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          • Oh, I didn’t realize that she did a shout-out to us for support. I suppose that’s the result of me being supportive initially, in that I really did like how she spoke her mind and I said so, several times. I just didn’t know what was going to eventually come out. (Although, to be honest, I did get a sense that something untoward was bubbling to the surface. There was a mean streak there that I should have acknowledged before I did.)

            I was also the shy kid in school, very much so, but somewhere along the line I eventually bucked it, becoming Class President as well as Student Council President in high school. Not looking for undeserved praise, just saying that some inner something drives me to grit my teeth and drive forward. It’s not easy, it never is for folks like us who missed a bit of validation at some critical point. (Well, several critical points, really.) But it feels good when you speak from the heart and another heart out there chimes in. Kindred souls. Like you. So write what you want. The pointless chaff of haters will fall off during the threshing.

            I also have a long-standing nickname that was slapped on me at an early age, in this case a certain physical education teacher in elementary school whom I detested but his belchy utterances were considered gospel by my peers: “Goose”. I’m sure he un-creatively came up with that based on my last name, but the moniker stuck for years. Hate him a little bit.

            Finally, keep those cellar dwellers primed and ready at the thought of escape. If I’m going to rescue them, I want them to really, really appreciate my efforts and reward me accordingly, unlike certain phys ed teachers who torment little boys in elementary school…

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            • Oh same as you, I loved her straightforward manner and wry sense of humour, but also like you, I kinda guessed that there was something darker lurking underneath. (especially in the way she treated her step-daughter) Such a shame really.
              As for ‘bucking it’, you may not be looking for undeserved praise, but you’re damn well gonna get some from me, so kudos to you. Me? I only wish that I’d had that same inner drive. I just hid in the shadows and have never quite emerged fully from it. And yeah, it does feel good when you meet a kindred spirit. So I will dig deep and try to find my own inner drive when it comes to being free with what I write.
              Why is it that all P.E teachers are arseholes? Why the need to feel powerful over a bunch of kids? Methinks if we reach back further into their own childhood, we would find the very same kid that they now pick on. Mine looked like a female version of Caitlyn Jenner…before she became Caitlyn Jenner.
              The cellar dwellers are crying out for your rescue, though not too loudly as I just poured rohypnol into their water. So it’s more a whimper really. Seriously, most men pay good money to be whipped and beaten! Ingrates!

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              • Yes, dig deep, and try to post as much of what you really feel as you can. Way back in the age of the dinosaurs, when I first started posting on stone tablets, I would agonize over every word for hours before submitting. Then I would agonize for hours and days AFTER the post, mortified that someone might make a negative comment.

                That was roughly a few thousand or so posts ago.

                Now? I clean things up a little bit, softening some of the sharpest edges, so I’m still not 100% transparent. But I found that honesty in writing, even when it’s given a nice shellac of humor, is the best way to go.The right people will find you. And that applies to life as well. I spent so many years seeking validation, not realizing that validation was not needed. I am a good person. You are a good person. It doesn’t mean squat what Sally Buttwedge down the street thinks. As hard as it may seem, we have to break free of the low-esteem that OTHER people placed on us. Easier said than done, but we are never going to be completely happy unless we create our own happiness.

                When I run into these people that are super-confident and have no qualms about anything, I know that most of them have never had to deal with situations where they were forced to feel inferior, inadequate, shameful. On the one hand, it’s nice that they didn’t suffer. On the other hand, they can’t fully relate to me. I would much rather be around people who have tripped and fallen and felt broken, who have their hang-ups, who have experienced the downside and the invalidation. Those are the friends I want, the folks who know of disappointment and solitude and distant longing.

                Excuse the rambling and the lack of witty wordplay, but I sense that you know exactly what I mean.

                P.S. to the Cellar Dwellers: Daddy’s coming. Be sure to work out extra hard on the rudimentary gym equipment that Lily has lovingly provided in her Lair of Licentiousness. Things will be more satisfying for all involved during The Rescue if you are sweaty and buff…

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                • Hahaha! First of all, stop giving hope to the cellar dwellers. Being sweaty and buff only serves the fact that you will not be able to get a firm grip on them, (no matter how hard and repeatedly you try) and thus you will not be able to spring them to freedom. Dammit, now they’re crying again after I’ve dashed their hopes. Time to get out the chloroform…again.

                  I do seem to write better on the days where I don’t give a fig leaf about what others might think. But sometimes I get so hyper-sensitive about it all. I guess it’s because I was only ever good at two things in life, my interaction with children and writing.
                  We are good people, and we are funny and intelligent. But I think that somewhere within both of us, resides that shy, uncertain child. But you are right about those super confident folk. I used to hang out with a bunch of musicians and after gigs, we would all crash back at their house. We would be splayed out on the floor in various positions and states of inebriation, blankets draped over our recovering bodies and just talk into the early hours of the morning. One night, we started sharing stories, dark sombre stories and the lead singer suddenly burst into tears. She cried because her childhood had been one of happiness and laughter and she hadn’t experienced any of what we all had. We spent the next hour comforting her and telling her that she should be happy that her life thus far, had been a good one. After that night, our bonds were stronger then ever…apart from her. She could no longer relate and shortly left the group. Like attracts like, and one wounded soul always knows another.

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