This post was originally written for my newly-founded Instagram and Facebook community The Fibro Witch, which is meant to be the first positive and hopeful Fibromyalgia / Chronic Pain community on Instagram/Facebook. Please go follow and like!
1) I NEVER expose myself to the cold weather. In winter I always wear the most thick winter coat and turn on my bedwarmer long before I get into bed. I also always wear thick gloves because my flares always start from my hands.
2) I do bath rituals with bath bombs and candles to warm up and relax mentally. Even without the ritual part which is mainly related to my Wiccan path, I strongly recommend this.
3) I listen to my body. When I need to sleep, I try to arrange my schedule setting time aside to sleep. If I need to sit down on a crowded bus, I say I’m ill and usually someone stands up to make me seat.
4) I TAKE MEDS. This is crucial. Don’t ever give up on this. I know there are some people who haven’t ever found relief from meds and my heart aches for them. But that’s really a rare thing. Usually, meds should work. Discuss this with your doctor and seek a second opinion if you’re not happy with your meds. Also, please don’t suffer in vain: take pain-relief meds. You deserve a pain-free life even on flare days.
5) I exercise. To be more specific, I take ballet classes once a week. This may sound nonsense but light exercise, even just light stretching, is crucial ESPECIALLY on flare days. I know it’s hard to bring yourself to do it but please try, you’ll find immediate relief.
6) I tell people whom I have to work/study with that I have fibromyalgia. Sometimes it’s hard for them to understand but I’ve found an explanation that works. I say “Imagine flu-like widespread pain — ten times stronger”. Usually they get it.
7) I try and never sit in the same position for more than ten-fifteen minutes. That way I stop pain from flaring up in my legs and back.
8) I write all my tasks and to-dos in the Calendar and Wunderlist apps on my iPhone. I love paper notebooks and diaries but I just can’t survive without the alerts the Calendar app sends one day before a task is scheduled. Find whatever works best to beat your #fibrofog!
9) I ask my partner to remember things for me when I know I’ll forget them, like important dates which are far away in time.
10) I eat a lot of fruit. I’ve found it’s extremely helpful.
Celebration. If there is one thing I will never forget, it is how celebrations make you feel when you are severely mentally ill and not (yet) in remission. I will never forget the deep, unescapable dissociation which you really get, maybe for the first time, that it is a horrible tool but for your body and mind it seems like the only tool they have to escape, to be away, away from everything and everyone, just away. Away is the only hope when a mentally ill person is forced to take part in a celebration they don’t feel – not because they don’t feel the atmosphere or anything of that sort – they just DON’T FEEL. That’s it. Their illness’ ultimate end is to suppress all feelings to stop the pain coming from them, without making any pitiful distinction between hurtful feelings and joyful feelings.
And so there the ill person stands. Or sits down, or whatever seems more likely to make them invisible. I have been that person so many times. I have been that person at Christmas celebrations, at family members’ birthday celebrations, at friends’ birthday parties (those rare times when my social anxiety did not stop me from going) and at my own birthday parties.
I’ve been officially diagnosed with mental illness in October 2014, when I entered my psychiatrist’s office for the first time. I had just been discharged from an oncology ward where I’d got my second surgery to remove melanoma and its cancerous, malignant cells from the skin on my back. My fabulous – I’ve never found a better adjective to describe her – roommate had been spending all the days we were in there together convincing me to accept the full help offered by the psychoncology ward of our hospital – where I had just started talk therapy – and get myself into psychiatrist treatment. She was 70 years old, maybe even a bit older, and she was there for her third or fourth surgery. She had no lymph nodes left in her lower body and was due to start radiotherapy – I’d got more luck, my melanoma was at an earlier stage comparing to hers. And I’ll never forget her looking at me, smiling – she was always, and I mean always smiling – and saying to that scared, depressed and panicky mess that was me then: “Why the hell should we care about whatever little pill we have to take to make our brains happy? I’ve been taking mine for thirty years and never regretted that!” The day I was discharged I phoned the psychoncology ward and got myself an emergency appointment with the woman who still is my psychiatrist today. The day after that, I walked into her office. My roommate’s name is Caterina. Yes, I said IS because she still rocks life, SCREW YOU SKIN CANCER, and luckily depressed and panicky me was still able to ask her her phone number before my discharge day, so that in the future I had the chance to thank her for practically saving my life: And to check up on her from time to time, which I still do.
Since then I celebrated two birthdays.
2014 was- well, I actually don’t remeber a single thing from that day so I can’t tell you. That says enough I guess. Last year – well, last year I got diagnosed with Bipolar Disorder just a few weeks before my birthday, and then- then my dog died the morning before my birthday. She had been like a sister to me since I was 8, and I was turning 22, do you see what I mean, do you? I just couldn’t bear the thought of celebrating, I canceled the small party I had organised and ended up eating sushi with my then best friend, which would be a nice and lovely memory, if we still talked, if she still were what she used to be to me. But we don’t, because she cut me out of her life completely some months ago, causing me the greatest trauma I could ever imagine I would suffer from. She really was my sister, I don’t care about blood, she fucking was. We planned to go live together in her little adorable house and we’d just finished redecorating. I still have the house’s keys. I’m currently actually grieving and I honestly think I’ll never get over any of that.
And then, there it comes, 2016. I guess you’ve already figured out that the day of my birthday is October 29th. Where I am is currently 1:40am, so that means it’s been my birthday for one hour and forty minutes already. And you know what? I AM FUCKING EXCITED. I am!!! I’m excited about the presents, I’m excited about having treated myself to a gift today, I am honestly, honestly excited. That doesn’t mean my mental illnesses are not trying to intrude and regain control. I’m still anxious as fuck, actually I’m so anxious that I have social anxiety for my OWN party with my OWN (and few) friends. I panic at the thought of my dad waking up in a dark mood (I sometimes think he has bipolar too, even though it could be a milder form – no he doesn’t know, or even aknowledge the possibility of it and I’m not brave enough to tell him). I panic because me and my little brother don’t seem to be getting along anymore since he’s entered teenage-hood. I panic even more at the thought or lunch-time all (happily?) together with my grandparents because my grandma is literally a walking trigger. I panic at the thought of ME waking up in the middle of a bipolar episode and, like the voices in my head love to tell me, ruin it all. BUT, I now can breathe and remind to myself that I AM IN CONTROL. I am in charge. Like the Doctor, I can shout that THIS PLANET (my head, lol) IS DEFENDED. Because I will defend my childish excitment. I will defend my birthday party. I will defend myself and I’m gonna be the winner this time. After two whole years in talk therapy, psychoterapy and CBT and, of course, on meds, I now am a warrior. I fight a war every day from the second I open my eyes in the morning. So I bet that makes me eligible for the fact that I FUCKING DESERVE A BIRTHDAY PARTY!!! 😀 😀 😀 😀
Recently, after reading Miranda Gray’s Red Moon changed my life, I have been trying to fully embrace my newly-discovered cyclic nature – so, guessing I’m now in the Virgin/Mother phase of my cycle, that could be the reason why I felt so inspired tonight to finally just do it and open this blog, giving birth to a project that I had been cradling silently for weeks. Except the reason is an approaching mania – in that case you’ll know straight away, because this blog will probably end up being abandoned once the mania will have faded 😉 Hoping that’s not the case, I guess this could be my way of honouring my first conscious cycle as a finally empowered and aware woman. Especially given the fact that I’m couch-ridden due to a horrible flu and have been for quite a few days, I consider that a personal success, something I should remember to be proud of.
Here, I’ll try and get back to Words, which once were my primary (and beloved) means through which I expressed myself, because I have been feeling the growing need to. I don’t know if I’ll manage to, I don’t know if I am going to just abandon this blog like many of its predecessors; but for now, in this night that is leading me to one of the days I have been dreading the most (the first anniversary of my beloved and unbearably missed dog’s death), I am feeling peaceful for writing this and my presentation page (check that out!), and that’s honestly such a beautiful feeling. I had forgotten. Blessed am I and blessed be you who are reading. )O(