Category Archives: Fibromyalgia

“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero”

I’m on the one month Netflix trial and I’ve binge watched everything that caught my attention. One of the best things I saw it was the documentary about Lady Gaga called “Five Foot Two”. I can’t call myself a fan of this singer, I only like some of her songs and think she’s a charismatic performer. But I really loved this Netflix documentary and I want to thank Lady Gaga for shining spotlight on chronic pain, hoping that it will raise awareness about this problem. Invisible illness is not invisible to the sufferer and the only thing worse than pain is not being believed by family, friends or even doctors, who think it’s stress, or all in your head or that you’re faking it looking for attention.

Lady Gaga reveals that she’s fighting pain that stems from a broken hip suffered on the 2013 tour. There’s a part of the documentary that shows her on the couch in tears, because her right side of the body is in a spasms and that her face hurts.

She reveals that when she feel the adrenaline from her fans, she can go, even if it doesn’t mean she’s not in pain. She shows the drugs she takes to control pain , the treatments she gets to ease it, the doctors she visits to find a permanent solution and it’s an incredible discovery for those who, like me, are used to see her full of energy, singing and dancing on a stage.

Honestly, chronic pain and invisible illness can be as limiting as any other disability and the fact that others can’t see them, doesn’t make them disappear. They’re fucking real!

So if you have Netflix, I really recommend “Gaga: five foot two” even if you’re not a fan of Lady Gaga. It also shows many her aspects of celebrities’ life as if that sometimes being reach and popular means also being alone, because bringing along a relationship may be hard for the lack of privacy.

Due to her pain, Lady Gaga had to postpone her Johanne tour and I read online a lot of encouraging and supportive messages from other celebrities and from her fans. Good for her: these are things that help, along to the right meds. I loved how she pointed out that she’s lucky because she has the money to get the right and the best cures, unfortunately many of the treatments that help with chronic pain are meant to be paid by the patient.

I wish I had the financial possibility to cure myself, I wish I had more support and not only from my friends and above all I wish I had half of Lady Gaga’s spirit and energy to face chronic pain and what it brings.

If I continue to define myself by what I can’t do any more or by what others do, I will destroy my self.

TRACK OF THE DAY: The Cure- Lady Gaga

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“Please mind the gap between your life and your dreams”

I know that the story behind the tube announcement would be more interesting than what I’m going to post, but it’s a bad health day, so my mood goes along with my pain.

(but in case you’re interested in the story of Mrs.Margaret McCollum who goes to Embankment station just to hear the voice of her deceased husband who recorded the Mind the gap message in 1965, here’s the video: https://vimeo.com/103459634).

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When we talk about dreams and desires, the most often heard sentences are “stop wishing, start acting” or “you’re not a tree: if you don’t like where you are, move” as if any dream we are chasing would be easy to be fulfilled just by working for it. That’s wise and sensible, but quite utopian.

What if your body is fighting against you, so you can’t get a proper work and earn the money you need to move to another country? What if you’re too old for the person you like? There’s no time machine, I’m sorry. And no, good will, a positive attitude, an optimistic view aren’t enough against objective difficulties. There are obstacles that can’t be overcame, no matter how hard you work for your dream. And this frustration and sense of impotence goes along with depression in a never ending cycle.

I will be very glad to fulfil all my wishes, I just need an healthier body. While waiting I must pay attention to the gap between what I dream and my life, I don’t want to get crushed.

TRACK OF THE DAY: To wish impossible Things – The Cure

 

“There is so much that people take for granted” Vivienne Westwood

This post may sound bitter and rhetorical, but it’s the result of a couple of good days when my disease hasn’t hit me that hard. I appreciated even the most stupid thing like waking up without crying for pain, being able to walk, to eat, to have a nice conversation without that fucking headache or brain fog. The pleasure to read a book, to go to the beach, to stay with my family, to talk with my friends without complaining.

Life is amazing, even in its simplicity. Never take things for granted, nothing, never. Be grateful for every little thing and show love to family and friends because you don’t know if it could be the last time you see them.

You mustn’t think you’re safe from negativity because you are young, because you have a house, a work or just because you’re a good person. Fate may hit hard on everyone at any time. And whoever said that life is too short to waste it being angry or sad, was perfectly right.

Take the phone and call your mom, go out for a walk with your dog, take time to ask your brother if he’s ok, surprise your friend with a letter, try something new to eat and smile!

I’m grateful for the good days and thankful for the friends who make them special.

TRACK OF THE DAY: Good ol’ days-The Script

 

“But in the end one needs more courage to live than to kill himself” Albert Camus

I’ve been thinking a lot about suicide lately and that’s positive because the people who can think about it in a lucid and analytic way, are those who will never commit. I made a couple of attempt when I was younger, for problems that, in the end, had a solution, not like now where I’m struggling against an invisible enemy. I’m without a clear diagnosis and a working cure, alone with a new pain or disease everyday. I’m ready to fight, I’m a tough warrior, but I’d like to know what I’m fighting against.

I try to focus on the positive things left in my life (honestly thinking to those who have a worse situation doesn’t work and it also makes me feel guilty), but sometimes pain and deception wins. So I feel tired to ask myself if tomorrow will be a good or a bad day, to cancel plans, can’t be sure of anything, of being called lazy or that it’s everything in my head. Then the dark cloud approaches and I can’t help thinking that my family will be better without me. I feel useful and a waste of time and even if I struggle not to let my disease to define who I am, there’s no doubt it’s silently deleting my life, my positive thoughts, the goals I want to set.

I read an Italian book “La Casa Blu” about the will to find a more decent way to pass over than let people finding you hung somewhere or crashed downstairs. I found this sentence I related to “today I’m too tired to live and to live, hope tomorrow is a better day”

Hope. There’s still hope, even in the darkest situation and I’m going to use it as a rope to escape this well of pain. So, come on girl, put some music on, wear your invisible superhero cape and kick this day in the ass. Remember to turn the pain into power and that tomorrow is JD’s birthday.

Ps. I wrote  a fanfic about love and suicide: its title is “The Reasons Why”, maybe one of my best piece of writing.

TRACK OF THE DAY: The Reasons why- The Cure

 

“Always find the funny” – Amy Susan Crohn

I’m experiencing one of the worst migraine episodes of my life. It’s like having something crushing my head like a lemon and no sleep or rest can mitigate it.

The worst thing about being sick is not pain, but the lack of independence, the lack of enjoying everyday things (even typing on the laptop is painful) and the difficulty in doing everyday’s tasks. It’s something that destroys you physically and psychologically. And people get easily tired of having around an always complaining human being so expect no compassion, above all from those who think “it’s all in your head”.

I haven’t been diagnosed yet, but the more I read about it, the more I identify my invisible illness with Fibromyalgia, a long-term condition that causes pain all over the body and that has some awesome friends I usually hang with, as

  • Extreme tiredness
  • Muscle stiffness and paresthesias
  • Troubled sleeping
  • Fibro-fog, a lovely confusion in your head that brings problems with memory and concentration.
  • Headaches
  • Fucked up stomach and bowel (I also have gluten intolerance)

I consider myself a fighter, I try to face everything, but it’s hard and sometimes I’m paranoid because I always fear to die. That’s why yesterday I molested all my best friends telling them I loved them, because, well, you never know.

I don’t know if and when I will get out of this shit, but when I have money, I want to tattoo, beside a triquetra, these lines from The Script: “every day, every hour, turn the pain into power”.

TRACK OF THE DAY: Superheroes- The Script