Silver Linings

Today’s post has been quite tricky…. I hadn’t expected the response I received to yesterday’s Lyme post and just feel a related, positive follow up is what should be done.

So, what are the silver linings to my own long and arduous storm clouds?

Music just sorts it all out: Another Lymie wrote a great post (sorry I can’t recall who!) about how heavy metal music made her feel better….I wholeheartedly agree, it is great for anger and stress relief! Muse Uprising is a good shouty fighting tune, a selection of the rest of my personal medicinal tunes are listed at the end of the post… I did a lot of angry shout singing and “letting it all out” – wonderful therapy….and gets the oxygen flowing and the heat up!!

Perspective: on life in general, what life is about, what is important, what should be ignored, what is real and what is just drivel. On what I really enjoy, on what I really want from life and on what truly makes me happy. On what the point is…

Limits: Whilst I entirely advocate doing everything that doesn’t kill you, limiting my life to suit my circumstances was quite liberating, limiting unnecessary drains on personal resources was freeing and limiting who I put myself out for was a huge burden lifted.

Lyme made me less fit and able than my 94yr old Grandmother…….Lyme also freed me to behave in ways only old folk can get away with: I now feel that release that older people say they get after a certain age – shrugging off all the insecurities and insignificant worries that younger folk suffer from. It’s marvellous!! and it’s happened, like thirty odd years early whoooop!!

Chronic illness, especially of the little known variety, sifts out true friendships: At first, the feeling of people disappearing from my life as they learned that I was diseased was pretty depressing….however, it clearly strengthened other relationships and I have now got the most fantastic set of people in my life. My goodness does quality outweigh quantity in this sphere!!

Years of anxiety, worry and angst have given way to a new way of thinking: Has anyone died? Is anyone or anything going to die? Is the world going to end? No? Right well, let’s just not get unduly stressed about it.

Longterm deprivation of all things pleasurable makes every tiny thing a great joy: I will make sure I never forget the soul-destroying feeling of having to concentrate intently, pulling every ounce of physical power and psychological strength from nowhere, and work my absolute hardest to put one foot in front of the other…..just to get to a place of safety to collapse. I’ll never take the little things for granted again.

Self-Sufficiency: Not in the funky sense…although sort of, as well, I guess. I feel empowered, obviously with hindsight, that I was able to learn all that science and sift through the rubbish information and, armed with just a CD57 test result, the Burrascano guidelines and a name of an antibiotic from the LLD, get myself back shipshape….myself! It is possible. Doctors can’t know everything – mine all used google search, even the good ones! Really we’re all in the dark together and should work together to solve the testing and treatment issues…..but that seems a wee while off yet. I think there are a few American corporations that would rather we didn’t!

Ferris Bueller was right: Life does move pretty fast and it’s just so worth stopping and looking around you,……..more frequently than, “once in a while”, though!

So, even though I spent most of, according to previous generations, the best years of my life, wallowing in pain and misery, sweat and spirochaetes, exhausted, frightened and broken….there seems to be some pretty good stuff the other side. When lucid during treatment I used to feebly whisper, “if this is the down, imagine what the up is going to be like”, not really meaning it….. I genuinely didn’t feel I was going to survive for a while there to be honest. It’s quite difficult to remain resolute in the face of an organism that is so cunning, adaptable, all-pervading and advanced – I kinda respected (and still do,) from a biological and evolutionary perspective the little squiggly telephone wires….which is annoying! The more I learned, the more interesting and impressive they became  – but I always felt that if human beings hadn’t evolved beyond bacteria then we’re doomed anyway, so I used my brain (what little of it worked by then!) and learned their behaviour and habits and looked at electron  microscope pictures and read endless theses on borrelia and spirochaetes and syphilis etc…….and then double-bluffed the little brutes! I don’t necessarily advise it, but one example is that I used to jump in the river to get really cold…..stay cold for as long a possible to perk them up a bit and then hit them with pills and heat and exercise haha!

During my treatment, I was able to narrow the symptoms of a relapse down to one solitary marker: caffeine suddenly makes me sleepy. So nowadays, for me, “a coffee a day proves the buggers are at bay!”  If it happens ever again, I do have a stash of Cefuroxime which I will just start all over again. Come ahead if you think you’re hard enough – I’m armed and ready!

My fighting tunes:

Muse: Uprising

Carl Orff: Carmina Burana

Nirvana: Breed

Metallica: Master of Puppets, Nothing Else Matters (the album with the New York Philharmonic Orchestra is awesome!)

Elgar: Pomp and Circumstance

Iron Maiden: Bring your daughter, Run to the Hills, The Clansman, Phantom of the Opera, The evil that men do, Wasted Years

Eminem: Lose Yourself

Smashing Pumpkins: Rat in a Cage

Prodigy: Their Law

Deep Purple: Cut runs deep

Killers: Human

Therapy: Trigger Inside

Rage Against the Machine.

5 thoughts on “Silver Linings

  1. jeanvieve7

    Wow, amazingly written and so true. I have just come to the point in my fight over the last several months where I am coming alive again. Partly because of acceptance of my situation, and partly just because I am a little better with mental clarity and energy then I was. It is a little empowering to start taking part of your own care, and doing everything you can do to feel better, rather than spending years feeling like a hopeless victim. Here is to empowerment.

  2. Nightmare Logic Post author

    Thank you very much. It sounds as if you’ve turned that all-important corner – may you find great strength and motivation in that empowerment and keep feeling better and better. The most significant piece of advice I was given was from a GP – I was desperate and asked him, “I just can’t work out if I’m supposed to be resting to heal or fighting to heal….what do you think?” He told me to fight all the way….. and he was right! Keep positive…

  3. Nightmare Logic Post author

    Thank you for your kind words. This particular playlist is a way of channeling anger, distress, upset, particularly if I found myself feeling broken and self-piteous (it happens to us all!) I find the lyrics particularly helpful. Muse Uprising, for an example, allows me to shout at the spirochaetes, “…… they will stop degrading us……we will be VICTORIOUS!!!” It gets the blood up and, whilst I am at heart a pacifist, some things require serious fighting spirit. Nirvana allows a more teenage attitude of “I DON’T CARE!!” and of course Iron Maiden Wasted Years reminds me that “we’re living in the golden years”! I did enjoy more relaxing tunes as well but found aimlessly happy or shallow lyrics hard to bear for a time there… we’re all human! Thank you for visiting.

    1. Nightmare Logic Post author

      That sounds a little weird so I should probably expand a little in explanation; I asked the sensible doctor if I should be resting or fighting – different ailments require different approaches. He said fight and so I did. I chose to see the spirochaetes as the issue rather than the disease….which gave me ‘individuals’ to fight rather than the blanket ‘lyme disease’. Me n them had words and decided it was a Mohammed Ali v George Foreman scenario…. naturally I decided I should be the one to float like a butterfly and, more importantly, sting like a bee! Music has always been able to change my mindset…


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