Showing posts with label Takayasu's Arteritis. Show all posts
Showing posts with label Takayasu's Arteritis. Show all posts

Sunday 19 April 2015

Kiwifruit & Public Personas

So, I've been having a really hard time lately. I've had many days this week where I've barely been able to get out of bed. I'm going through both a positive yet very rough patch in terms of my health, where I'm finally able to taper off the high-dose prednisone I've been on for 3+ years. This is a good thing - my Takayasu's is finally less active - but also very difficult as my body is now going through some pretty intense medication withdrawals and I am very unwell as a result.

Something that I've really been struggling with as a result is the disparity between my "public persona" and the reality of what my day-to-day life is like. Sure, most people probably display a different public persona to that of their actual lives. I mean, whose facebook timeline is a truly accurate depiction of their everyday lives? (Also, nobody wants to know what you're having for breakfast every morning. Sorry.) But I think that this struggle is particularly profound for people living with chronic or mental illnesses.
When I'm out, socialising, or posting pictures on social media I give the appearance of having bucketfuls of energy, effortlessly doing it all and accomplishing amazing things. I try to be (or at least look like) superwoman. This is the public me.
But in reality, I take several hours to get out of bed each morning because of my chronic pain, I am usually able to do about 1 thing per day because of intense exhaustion, I often spend hours crying and feeling sorry for myself and most nights I collapse in bed by 8pm. That's a particularly bad day for me, but I really struggle. This is the private me.
What freaks me out most about this is that most people know me as the "energetic, bubbly superwoman" that public me appears to be. She doesn't have struggles or stresses. She's totally confident in herself and able to do almost anything. But private me has different plans, and it's gotten to the point where I fear going out and meeting up with people (other than my closest friends) and then suddenly having to leave due to exhaustion, taking a whole bunch of pills for pain, or suddenly going silent and forgetting what they've said to me. Being asked why I only study part time, or why I can't climb a flight of stairs, or why I'm using a pensioner's card (but you're only 22??). Even small things like why I have to avoid sunlight, caffeine, and people with colds like the plague (um, I could die). It can be embarrassing, scary and downright awkward to have to explain such personal things about myself to people I've only just met or don't know very well.
But one of the things that has been stressing me out most lately is disappointing people. When people reach out to me and I have to say "I can't meet up with you", or I flat-out ignore their messages or emails - hell, even if I ignore people's sewing questions on youtube because I simply don't have the energy to answer them - I worry that people will think I either don't care about them, or that I'm lazy, or I'm brushing them off, because they only know the public me and public me is superwoman. She has time for everyone and can do everything.
I guess the point of me talking about this is because it's something that's been weighing heavily on my mind lately and it's also something I want to raise awareness of. When you live with a chronic illness, there can be such a disparity between your public and personal lives and this can sometimes become completely overwhelming. I also really want to reach out to anyone else also living with a chronic or mental illness to tell you this: You are not alone and you don't have to be superwoman (or superman!). It's okay to take some time to yourself, to be a little selfish and indulge yourself in the things that you love. It's okay to take life more slowly. Whether this is working less, not going out as much or dropping a subject at school or uni - it's okay to take life at your own pace. (Honestly, this should apply to anyone going through any kind of a tough time).
So right now, I'm working more on looking after myself, not being so productive, and not feeling so guilty about it or worried about disappointing people. If I have to reschedule plans, ask for help, take time off uni or even take some time away from blogging (though blogging actually makes me super happy so don't worry too much about that one), that's okay. It actually doesn't reflect on me as a person.

And for people who are fortunate enough not to struggle with these things, I urge you to be kind and understanding with everyone - because everybody you meet could be battling something you cannot see. Lastly I'd encourage everybody to read this article from "But You Don't Look Sick", particularly if you have or know a person with a chronic or mental illness.


But some days, dressing up and taking photos is exactly what is needed to help me feel okay. So here's what I'm wearing today!

Outfit details:
Top is thrifted
Earrings are from Wanting Collection
Skirt is thrifted (The Red Cross)
Socks are from Tutuanna
Shoes are Naot Kedma's

Much love and stay happy,






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Wednesday 5 November 2014

DIY Floral Two-Piece, Buggies & Takayasu's

First up I'm going to provide an explanation for my somewhat sporadic blogging lately! I don't want anyone thinking that maybe I'm becoming disinterested in this blog, because I definitely am not. Lately I've just been really knocked about by my autoimmune illness (which is called Takayasu's Arteritis if you're curious, ~because I know you are~).

If you don't know what it means to have an autoimmune illness, this cartoon below is basically the best way of explaining what that is (and can double-up as my science segment for today's post, hooray!):

The above picture represents some over-zealous white blood cells. While in healthy people white blood cells act to find and destroy unwelcome intruders (like cold viruses), in people with autoimmune disorders the white blood cells decide, for whatever reason, that the cells of the body are also unwelcome intruders, and destroy them as well.
To quiet down those over-excited cells, many people with autoimmune disorders have to take medications that suppress their immune systems. An unfortunate side effect of these is getting seriously knocked-out by little things like colds and infections, like the one I have had for the past entire month.

I've been pretty private about my illness for the past three years on my blog, as I have never wanted for it to be a defining feature of my life - and I'm still not going to talk about it much because that's not what this blog is about - but it is a big part of my life. Lately, a fellow tak-haver has lately begun trying to raise awareness of our illness and I want to do whatever I can to support that pursuit! Because it's a rare illness most doctors have never encountered it, making diagnosis very difficult, and it also means that there is basically zero research money for it. So if you would like to "Like" the awareness page, or even just tell someone that you learnt about a new disease today, that would mean the world to me. We even have a hashtag, #TAK ~what what, getting on that social media bandwagon!~

Now back to my outfit.
I wanted to take some proper, non-iPhone pictures in front of this cute car that parked itself near my house, but as soon as I tried it began to storm quite heavily. *Thanks, universe.* So you're all stuck with the quick-and-dodgy iPhone version of this outfit instead.
I made this two-piece set yesterday out of a thrifted vintage quilt cover. As soon as I saw the quilt cover I knew that it had to be converted into something that I could wear on my body. The print is one of the coolest I've ever encountered - not only are the colours gorgeous, when you look up close you notice that it's jungle-themed, and all these snakes, birds, gazelles and elephants jump out at you. 
Floral set is DIY | necklace c/o Now Or Never Jewelry | shoes are Rubi (old)

Not wanting to waste fabric, I even lined the top using the quilt's lining! This is definitely one of my favourite things that I've ever made.

Hopefully everything will become a little bit less stressful for me soon, and I'll be back to a more regular blogging schedule. Thanks again for sticking around, reading what I have to say, leaving such wonderful comments and supporting what I do - it's been invaluable to me when I've been at my lowest points these past couple of months.

Much love, and I wish you all a healthy, happy week!






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