Bits and pieces- week 18

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What a week. It has been filled with highs and lows. The low’s been very very low indeed. I have had many a hospital visit (infiltrations, new medicine etc). ATM it seems like the second round of Rituximab has worked and I can finally (for the first time in over a year) reduce my cortisone dosage. Which is a small, good new step (YAY!).

This week has been the hottest so far and I can say that summer has officially started. Sleeping and feeling sluggish and heat and the sun for me in general are terrible. I try to hermit away in the day as much as possible because I just CAN’T. But it is nice to get outside and go on little strolls either to the beach or the park. Getting my legs out and freckles on my arms.

Thursday night was so nice, getting out for San Joan. San Joan is crazy, fireworks and fire and noise everywhere. We went down to our beloved Poblenou (our barrio) and watched the parade of the Corre Foc, with its amazing percussion band, go and ignite the bonfire. We then walked along the beach and watch the fireworks and chinese laterns before sitting in a park talking about our future and drinking a clara. Perfect.

Waking up in tears to the news on friday, manic family chats and feeling genuinely shocked and scared at the state of things here, there and everywhere. I feel sad and scared for my future as an EU Migrant/citizen. Now more than ever borders need to be opened. I can’t stand this “Great” Britain rule Britannia island mentality. Which to be honest I find embarrassing- its actually something I have noticed more and more when going back. I am also VERY angry that my postal vote did not arrive on time and my proxy vote was unable to vote for me. DESPITE sending everything well in time. I am shocked to the core at some of the things I have seen people I know think and believe (everyone has a right to their opinions and beliefs BUT when they are just down right offensive and racist etc it hurts my heart). I will write something more on this in the future as my head is fuzzy and still reeling from it all. Tuesday marks my 10 year anniversary so expect a post then.

Friday I escaped to my favourite place, sat on a rock and watched my busy, hot chaotic home from above and felt a sense of pride and belonging for one of the first times since arriving. It felt right to be where I was and looking at it all pan out from above I felt incredibly lucky and fortunate to experience it. I took a deep breath and felt instantly better. My favourite place is magical like that. It is healing and where I shall escape to more frequently.

Lets see what next week brings!

200 days of 30 years.

A bit misleading the title maybe. However today marks the 200th day of my 30th year on this planet. I will dedicate a 30th learnings in a separate post however I wanted to celebrate reaching my 200th day. 200 days of learning, struggling, fighting, living, enjoying, loving, laughing, travelling, working and in general being.

As if to remind me that its all the small little details in life my body has decided to slow right down, as you know if you are a regular reader and know me irl, you will know that I have spent most of two-thousand-and-fifteen in pain and suffering with a flare up/brote (flare up in spanish). We (my medical team and I) are working hard to get it all under control and I am having to trial new drugs and things to make my body be a bit kinder. It has given me a lot of time to reflect and re-evaluate what I want out of my little life. Any way, moving on. Lets celebrate these sweet days of my thirtieth year on the planet.

This project serves as my daily diary and has really pushed me, no matter how shitty or great the day has been, to record my best (or worse) moment. To document all those little things in life that I am likely to forget. Its pushed me to work in my little sketchbook almost daily and also to record the other goings on.

365

jan

The start of the year started in England. At my dad’s on the sofa watching Jules Holland with a hotwater bottle and period pain. I really hope this wasn’t an omen. I am starting to think it was. Not that I mind the quiet life.

It was good to explore and be back in the cold in England. However within a few days we crossed 3 different borders, crossed a sea, travelled thousands of miles whilst drinking coffee out of a thermos and eating far too many scotch eggs and sausage rolls. I love road trips and the wide open road and seeing different contrasting landscapes whizz by. We travelled back through France on the day of the Paris shootings. Horrible, however we were none the wiser until we got home. The rest of January passed by in a bit of a daze, shocked that it is now 2015. I had my thirtieth birthday and henceforth some sort of freak out. Ouch. My birthday was quiet, cinema (Paddington) and a meal. Just how I like it, the older I get the more introverted and quiet I become. January was long walks, trying and failing to be healthy, birthday breakfasts, starting of new sketchbooks, ink pen discovery and crazy insane sunsets.

feb

February, you brought grey skies and broken worried hearts. Things changed that month and started the long reflection. I lost my faith in humanity but had my eyes opened to many things. Making it clearer where and what I want to be. Came my baby Pup as ever by my side. Naughty hiding doggy. The light as ever is the very best in Barcelona in winter. The sunsets and winter sun. Dinners and chats with the very best friends, glad to have these memories and hang outs. The best food (roast dinner, key lime pies and lotso pizzaaaa). I was attacked with the dreaded lurgy and therefor a mini flare up (on going its just flared and flared). Basically February was a celebration of food and trying to be together and there when needed. (A cryptic month).

march

March. You were good, healing and restful. What was needed after February’s sluggishness and black cloud. I watched my doggies pups being born on skype with my sisters and my dad. The very best memories and excitement of that. Long soul searching walks in my small town and along the country fields. Alone in cafe’s and walking around Cambridge. Birthday parties and curry. Catching up with all the family. Falling in love again with London. Back in Barcelona I discovered walks at the top. Still up and down with health. Planning and learning new skills (caligraphy).

april

April you were the start of this bad health and rest. You bought family (sister) visits and yet more quiet days (see a theme for this year yet?). We celebrated and enjoyed our little boys birthday (doggy). I can’t express in words how much this pup means to me. He is always by my side when a lot of humans are not. He knows when I am not ok and just lays next to me. He licks my face when I am crying. He is a sweet, but grumpy, little soul and I would be lost without him. Here’s to seven more years little boy. I also did a lot of planning and started to draw the faces I have in my head. They collect there and need to come out. Yet more turmoil and talk of future plans, it seems like we only ever talk about things. However slowly getting things in place and plucking courage and strength. Also had scary hospital visits. I hate the places they make me nervous as do new doctors.

may
May was done and gone in a blink of an eye. Spent more time in doctors waiting rooms and in bed than should be normal. Read 5 books on my kindle. Again my boy (both of them) were by my side. One of my best friends brought her beautiful bebe Maia into the world. I can’t believe she is here and its incredible to think she made her. So amazing to meet her and have our first cuddle in the hospital. There was a street party in my street for a weekend, people painting walls and houses and lots of food and music. The heat started, the kind of heat that you can’t even breathe properly. To combat that I have been having cold showers and drinking loads of water. May also brought good news. Once again I have been thinking about change and where my life is going. Lots of anxiety about not being able to control my current health situation.

june

June. You made stifled me and made me unable to breathe. Its too hot. I do not bode well in this heat. It literally kills me. Marvelled at the view of the hospital waiting room, its become my second home. I can’t quite grasp that it isn’t June still, which I suppose shows you how June went for me. I drew, rested, hibernated, stressed and worried. I reflected and thought about everything. I made new friends and connections, for which I am so grateful. Good news from friends and family have lightened my heart. Rested and slept and felt nauseous. I feel like I have lost control of my days, they seem to slump and sweat along. Its too hot to do much else.

july

July, you only have a week or so left of you. You bring my (other) boys birthday. I do appreciate that one, 8 or 9 hours sitting with me in hospital holding my hand constantly by my side and never complaining through painful waits and procedures. I am so grateful. My mum has come over with a days notice to look after me. I will never forget this, I often try to get on with things and not show people my pain so it was very nice to have the distraction. July though, you have been hellish and I don’t know when its going to end. This heat, sweat in places I didn’t know were possible. Some drawings have been done for my sister and my brain is clinging onto being a human. I have become even more anxious about future and realise I am living in some sort of limbo. My body is up and down and in pain, just want to get on with normal life now! Evening walks either “up the top” or to the beach have been my savour. They clear my head and heal my heart.

I hope the second half of the year is more healthy and positive and I am able to inflict the changes in my life that I have been reflecting on so much through these past few months. Never has the expression “the days are long, the years are short” been more apt for this year so far. I just hope I can feel more positive and make some very needed changes. I want to feel like I am doing something again.