Gingerly Ginger

I am day 19th of the Youtube Advent Calendar!!! If you are wondering, there are the channels why:

http://youtube.com/gingerlyginger

1. The illness I live with is: Cluster Headaches

2. I was diagnosed with it in the year: 1999

3. But I had symptoms since: 1990

4. The biggest adjustment I’ve had to make is: suddenly withdraw from life responsibilities and engagement for 2/3 months at a time when a cluster appears.

5. Most people assume: That it’s a headache.

6. The hardest part about mornings are: Actually being afraid of going to sleep cause usually an attack will come during sleeping time or within a couple of hours of waking up

7. My favorite medical TV show is: Scrubs, it’s apparently the most medically accurate one.

8. A gadget I couldn’t live without is: Imigran injections. I have a very bad relationship with needles but the automatic release made it bearable to have to do injections multiple times a day with their system.

9. The hardest part about nights are: I can never get enough rest to feel sort of ok or acceptably functional during a cluster. which again, lasts for at least 40 days in my case

10. Each day I take: Verapamil, Imigran

11. Regarding alternative treatments, I: tried different kinds of triptans in the past, including the melt under your tongue tablets, horrible since it did nothing for the pain but at that point I couldn’t add anything else so I just had to “ride” the attack off naturally. 4 hours usually.

12. If I had to choose between an invisible illness or visible I would choose: visible would make it easier in work related environments, although I would fear the prejudice and the possibility of having chances taken away from me because of it.

13. Regarding working and career: I switched to Imigran when I started my first internship as a cluster started the week before and lasted well 2 months into it. It changed my attacks pattern to once a day to multiple randon times, but became manageable in the sense that after an injection the major pain would subside within 5/10 minutes, however it could return after a couple of hours up to 6/8 attacks per day. That made it very challenging work wise.

14. People would be surprised to know: I feel like stressing the name “headache” is misleading as it describes something everybody thinks they have experienced, while believe me, it just addressed the fact the pain center is located in the head, nothing else in common with a regular headache. More like a cramp if I were to say.

15. The hardest thing to accept about my new reality has been: Unfortunately I have been dealing with CH since I can remember (elementary school) and it got more severe in time, so in that sense I got “used” to it, having lived with it for more than 25 years at the moment.

16. Something I never thought I could do with my illness that I did was: be socially functional, whilst some of the most important work assignments I’ve got actually came around at a cluster time. It made it harder indeed, but I still delivered to great results in the end.

17. The commercials about my illness: they just aren’t there.

18. Something I really miss doing since I was diagnosed is: the idea one day this will stop completely. It doesn’t, however my remission times have increased and everytime I get deluded into thinking it was the last time, it never is.

19. It was really hard to have to give up: control over awareness an actions during an attack.

20. A new hobby I have taken up since my diagnosis is: again, we’re talking about more than 2 decades, I’ve mainly learned to truly enjoy remission times.

21. If I could have one day of feeling normal again I would: actually focus on the fact I feel nothing, not even a shadow in my head.

22. My illness has taught me: invisible illnesses are very much real.

23. Want to know a secret? One thing people say that gets under my skin is: “I know, i get bad headaches too”. I know the word “headache” can be misleading but believe me, you don’t know.

24. But I love it when people: understand and give me space

25. My favorite motto, scripture, quote that gets me through tough times is: "it will end”

26. When someone is diagnosed I’d like to tell them: it is manageable, do not think your life has been stolen from you even though it might feel so at the beginning, you can learn to live and still live fully with it, actually appreciating healthy times a lot more than normal people probably do.

27. Something that has surprised me about living with an illness is: how it can affect every single aspect of your life, regardless of strength of will.

The DarkLight Project (instagram / facebook)

As part of this project I was given the chance to express what my light and dark sides are and, given the oxymoron I am, Rupert allowed me to bring an even internal juxtaposition in the pictures themselves. The light side is the "façade" side to me, where by being exposed to people I have to worry so much about them and making them feel comfortable that I become what they want or need, sometimes even detracting from myself. On the dark side though I can be me without worrying about the impact on anyone so to me really is the happier side where I can be myself just for my own self sake. On a side note, after preparing my first outfit for the light side, I was made notice how the colour palette sort of gave a "little Mermaid feeling" so embracing my naïveté in recognising the "Ariel" in me I went and fully channelled my inner "Ursula" for the dark side (with full on purple socks and petticoat to try and emulate her tentacles!). I think like with every dichotomy, this also goes to represent how differently we embrace our own personalities at different ages. For the people pleaser I have always been, growing into self appreciation and conservation is a huge step, and ironically, I think that might be way in a film like the little Mermaid you might start rooting for Ariel as a teenager, and end up sympathising with Ursula once you've grown up. 

I can tell by the sound of squishy wet tires outside in the street that London is living up to the impeding Autumn. In fact, it clearly is in full throttle rehearsing and it’s going well.

I was never quite the meteoropathic so I am not going to blame anything going on inside of me to the weather. In fact, had it been sunny, maybe I would’v felt worse about staying in and not taking proper full advantage, not properly fully enjoying it.

Fact is, I am and have been for quite some time now questioning my place into the world, as the world as I knew it and thought I grew up in, either changed dramatically or likely was never quite there as I thought it was, so the lack of “belonging” feeling wasn’t quite a phase.

But the matter of today is different, I am not broody, I am not “sad”. I am quite strongly anxious about the day, be it for a number of reasons that might include the fact events are sometimes making me question myself, to see what I can better of me to better the situation around me. I still believe that is the healthiest approach to life and the most rewarding cause it drives us to develop into our better self. Lately, for a length of time I would like not to acknowledge in its entirety though, if I were to be very attentive I would admit I haven’t received from the world the kind of feedback that used to make me believe for the previous three decades that “i am doing fine, things will get better, I will get better”.

Difference of today though is, despite all the elements that would define today’s gloominess, I refuse to just give in. Yeah it doesn’t sound like the best of weathers out there, yes life and Fate haven’t confirmed my path in a while, but that doesn’t mean this is sad and pointless, this does not invalidate yesterday (in the larger definition of past) and certainly does not define tomorrow.I am genuinely starting to consider maybe the kind of feedback Life and Fate are giving me is just grown into something different from what I was used to so my eyes still need to adjust and look for signs and things that, because I never had to, I never looked for and therefore never seen.

In my lower days I would tell you my life has been steadily falling to its lowest point ever in the last 3/4 years, but truth is, nothing of what I did in these last years is much different from what I did before: I took chances, invested resources, possibly sounded crazy and devoted all I have to define very practically a goal. Not a dream. A physically reachable goal.

Now things in those terms have been woozy for a while at best, but I accept that a readjustment of views and therefore attitude and battle plans might have to occur at some point in life.

I suppose what it is now is: I am having a harder time to adapt now that I have to consider for the first time not only adapting my ways (which as a social sponge was never an issue) but to which degree my core values can mould and adapt.

It is definitely raining outside, and I am possibly more unsteady now about what I want to do and can do than I was 2 years ago when the company I founded and thought to be my future collapsed and shattered to pieces.

The difference that I suppose is making me a bit sturdy in giving in to the possible hopelessness and gloominess of today is the fact I define it as “what I do” rather than “who I am” now.

I suppose that’s adapting too.