Notes from this week/ Week in photos 13

NEWS FLASH! This weeks series is going to be #REALLIFE. Tune in next week for pretty photos and more fun vibes.
IMG_3749Came cuddles are the best thingIMG_3751IMG_3791Lunch on trays are also good!IMG_3774 IMG_3778Hospital bed selfies (cute gown!)IMG_3781 IMG_3782Weird hospital rooms and hospital “art”.IMG_3811 IMG_3815 IMG_3818Resting view innit (the lovely rain!)IMG_3835

So this week. A bit fat wobble of a week. The word of the week being HOSPITAL. I have been unable to escape it. Recovery also being a word of the week as well as wobble, emotional and useless.

Monday- Hospital appointment with my specialist that was quick and rushed > Home > Bed.
Tuesday- Bed and too tired to even move.
Wednesday- Operation/ Procedure day. Lots of lying on hospital beds and being wheeled about, prodded, scanned and poked. Left feeling in pain, dizzy and tired. They cleaned and swept my left knee with radioactive (!!!!) liquid to clean out all the bad inflammatory cells that attack my joints. My body creates these cells and they are evil. Why? Well we don’t know that yet. Monday is scan day and that will decide whether I have to continue with the same biological treatment as before or whether I will start with a new set of drugs. In the meantime its a waiting game. I am grateful that I am getting listened to and that this is being treated and that I am not just feeling like this is something I have done wrong and its all my fault (weird brain black holes where my thoughts disappear too!) Its also good to realise that this is REAL and not invented and as much as I have tried to hide it from people (especially at work) and am embarrassed by it it is there.
Thursday- Recovering at my inlaws. Being waited on hand and foot and being served food on a tray. Sleepy daze and barely human. I can’t describe how good it feels just to have someone looking after you and caring. I have missed this a lot as I tend just to get on with stuff here and try and ignore that I need that sometimes. I need to be spoilt and have “mimos”. It makes me feel weird to ask for help and I feel guilty that I am putting the other person out.
Friday- Yet more recovering and being spoilt. I got to go home in the evening though and had a dreamy sleep in my own bed with the pup and Borj.
Saturday- Sant Jordi and getting a rose. Also home made pizza club night ( a tradition in this house!).
Sunday- Yet more resting and netflixing and blog reading etc.
SO this week has been a tough one, one where it has made me feel not good enough and where I am the illness I have rather than Sarie who has this illness. I have wobbled and doubted and felt a whole lot of guilt and just felt like it has been too much. A drain on my loved ones and just in general a bit crap and useless. Next week shall be better and I can hopefully start to get out and about a bit more. I have also been quiet with a few of my projects because its ok to fall behind and allow my self time to recover, this doesn’t mean I am a massive failure (note to myself). Also all this time off is justified and medically backed up. Please remember this future Sarie if you are reading this!

So if I have been a crap friend/sister/daughter/colleague then I am sorry, I feel like I let a lot of people down and more than anyone myself.

 

Notes from this week/ my week in photos 12

This week has been much the same as the weeks before that. Hospitals, bed and trying to get little things done and producing things that make me happy. Spring/summer has definitely arrived. Its hot, this scares me. I hate the heat.
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My lovely stripey covers and my little doggy noodle. And trying to read as much as I can. Very interested in war time novels at the moment. Especially based around the London Blitz. Also recipe and cook books. I love the Elly Pear book thats just come out- yum!

DSCF5203 DSCF5204 IMG_3618IMG_3616 I had to go to Hospital de l’Esperanza in the north of the city (near Parc Guell). I had never really ventured up this way before besides visting the park. The buildings and every thing felt so different than other parts of the city. I had to have a few scans and was done fairly quickly (not the usual occurrence in hospital-land).IMG_3622
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It was fairly near Gracia, so I decided to walk very down very slowly. I adore this part of the city. Carrer Verdi on a week day is such a nice place to be. The weather was so glorious (breezy and cool in the shade but sunny and warm-not too hot). Everything in bloom. I spied some pretty shops, cafes and buildings. I stopped in a cafe that had nice tiles and wall colour.IMG_3629 IMG_3633 IMG_3634 IMG_3636
In the 9 years that I have lived in Barcelona I have always spied the flower market on Valencia but have never ever been inside. Its pretty cool. I did think it was bigger than it actually is though, but cool and pretty all the same. I then got my tired and achey legs on the bus home where I flopped into bed hugging my pup. I don’t get why or how he can stand being under the covers:
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I made a very good, if I do say so myself, shepherds pie. Yum!

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I am enjoying drawing people a lot, even if they are a little weird. I like to imagine these girls in their own weird lost worlds. Floating on their own lonely islands. Its nice to get my hands messy and to feel like I am creating something.

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I had to pop into the centre to get some supplies. Paper and the like. I love Raima so so much, it really is a treasure of a shop. It is a paper supply, stationary shop in a really old street in Barcelona. It is on two different levels, with the more traditional stationary on the ground floor and the paper supply on the second floor. Its a paper lovers dream. I love how much character it has and the staff are lovely too.

DSCF5304 DSCF5308 DSCF5309 DSCF5339Pretty Barcelona streets. I also love visiting El Borne and El Gotic too. Getting lost in tiny dark streets, always discovering the weird and the wonderful.

So that was my week, I love how it looks so busy and fun. The other bits I don’t really show. It has been nice to get out a bit. I have had to cancel plans and be bad because I have felt so very tired though, and therefor have actually spent most of the week in bed- again.

This weeks Good things:
Spring (blossom against blue skies, lighter evenings, pretty light and wearing spring jackets)
Sitting on terraces having a coffee
Going on a few walks around the barrio
Planning for future things and feeling like: i can do this!
A few head revelations- good at realising things again and thinking clearly. Feeling stronger mentally than I have in a while. Black cloud is almost clearing!
Chats with friends and family on whatsap.

Next week: Knee op, MRI’s, Doctors appointments and lots of netflix I predict.

Notes from this week 10

I have changed this little section into Notes from this week. As it is more accurate to be honest. I can not get out every week and take pretty photos (sad face emoji) and I do love doing a weekly journal dear diary round up. So it will be a gaggle of things that have happened. Notes/videos/pictures/work etc/general gathering of thoughts and words and images. A little scrapbook of my life.

So this week. One long week of flat-prison-hermiting. Kind doctors, I dearly love my GP. Its so important to have the constant support and understanding of ones doctors when going through scary health stuff. I have been extra clumsy this week (i have knocked my self, fallen over and dropped one of my favourite mugs) and in such a fog. When I say a fog it is like having the flu and being feverish feeling like ones body is actual poison. My knee, jaw and left hand and wrist are ever so painful. There have been tears and wondering how I can get through it all. I have been addicted to snap chat, netflix and pinterest this week. I have also been enjoying cafe mocca’s and home made food (thanks Suegra!). Drawing has been tricky. This week has seen me round up a month of pattern making and I feel good that it is done, because phew thats a lot of patterns (pattern fatigue ha!) and also yay because I have learnt another new skill. I also keep reminding my self to look at the bigger picture as I tend to scurry along with tunnel vision and only look at small tiny details and trip up on them. I have come so far and I need to take a step back and breathe and remember all of that. Spring has sprung. Sunshine and rainy days and a nice cool breeze. Its been lovely watching the tree’s change and hear the bird tweeting.

So here are some patterns a few photos.

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Spring and all things new have really inspired my patterns, as has being ill and medication and my puppy. I also like these dark factories.botanicplantl came factory flowerbotanic handpill

 

That has been my week. Next week: hopefully venturing out, a swim, doctors doctors and doctors and catching up on some over due things.

My week in photos (sort of) 8

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So this week. I am having/have had a wobble. A big one. It has surely been one of the hardest weeks I have had to endure in a long time. I have had to go to a medical tribunal and that really tested my nerves and strength. I have also been so very ill, with a very swollen knee and general other ailments that happen when my disease flairs up. It its all consuming and draining and has made me feel quite rubbish. Thank god for friends and family chats to make all seem a little more bearable. I don’t really have much more to add, nor have I felt like taking any photos. Besides I have been in my bed-prison all week unable to walk or move. Onwards and upwards though as they say, next week is a new week and tomorrow a new day.
GOOD THINGS though:
-Rain and grey days
-Soft, warm pyjamas
-Hot water bottles
-Came cuddles
-Whatsap chats
-Downton Abbey. I am literally that bored ha! Also I have become a bit all consumed into the world and it has made me feverish and weird
-Comfort food like things on toast (egg, avocado, baked beans, marmite et- not all at once).

I feel stuck behind a bit at the moment, with projects and with life in general. Hoping my next round of medication improves things somewhat for me and I can start taking back some of that time that has been stolen from me. I have a list that as long as my arm that constantly needs rejigging and just feel like a bit of a failure in general. Until I stop and think that I am fighting on getting better and living with this disease, which is just good enough. I need to lay off on the bad guilt feelings and stop being quite so nasty with myself and just realise that the little battles and effort are good enough. And if my good enough is another ones ok then so be it. I do get angry and want to scream and shout and ask why me? Why did I get chosen to have this bloody vile body eating disease (auto immune means self attacking- my body quite literally HATES me which doesn’t bode well for my self esteem hmmf. Much asked questions like how can I really love my self if my body has chosen to hate me and attack me and eat my bones, vessels and skin?). Then I remember there is just no bloody use in going down that path, it doesn’t help. I hate when those dark thoughts creep in and I just don’t feel good enough for the world. I have to reclaim what is good enough though. Barely there survival. Brushing ones teeth and doing ones hair, being able to tie my own laces and butter my own toast.. and even on the darkest days being able to get to the loo on time. Those things are in the minor success club and those things are good enough. I can’t expect my body to be nicer to me if I am not nicer to me. Minor successes and the good enough club need to be celebrated. I just need to constantly remind myself of that fact.

Week in photos 6

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Notes from this week (jotted down on my phone as they sprung into my head- I like this way of recording thoughts)

-So February you are over. You’ve been a tough month that has been swallowed up into a black hole. I can’t even recall much of your events as you have passed by in such a daze. Waiting for news, getting news and then feeling so switched off from it all. March you will hopefully bring new blooms, better news, and cheerful spring like feelings.

-This past week has been another one of those weeks. Doctors >flat > dog walk> supermarket and drawing. Nothing else. I wish there were more notes from this week. This week I am struggling, this week is hard. This week I have cried when I don’t want and when I do want to cry I have become blocked.  Next week though, next week shall be better. 
-Kindness of strangers Monday found me back at hospital (again- I know!) Whilst sat in the waiting room for what seemed like ever, watching people slowly have their turn and visit the doctor and filter out until I am one of the last. Get chatting to two old ladies, one in a wheel chair, and they were the kindest and sweetest with me. When people genuinely are lovely and compassionate. I keep thinking that this is what makes the world go round. Kindness, especially from strangers. It can make such a big difference. 
-Thinking a lot about self care and acceptance. Accepting that I need to look after and love my self a little more and also stop being so nasty to my self and to rid myself of the guilt of being sick. Also be more accepting of my limitations and illness and give my self a bloody break. I also need to realise that I am a bloody super human for dealing with this stuff by my self (with the help of my boys and others of course) and I still come out of it fighting and wanting better. This all done in a foreign land far away from home.
-Thinking about goals and asking where next. What do I really want out of life? What is best for me? Where do I want to be and also how can I get there and do it. I feel stuck at the moment. Stuck because of health and other worries like being able to work again. And when I am able to work again- how and what. I want to be happier and owe it to myself to do something about it and use my skills and talents and not hide them away and trying to fit in somewhere that makes me unhappy and stressed and really affects my health. After being so sick this year I deserve something good for myself, also it makes you realise how short life is when faced with challenging health issues. I can’t wait around any longer.
-Asking for help and it being ok. It is not failing, it is not going to make the other person feel better than me. Its ok to realise that I have limits and its not my fault.
-Good things (YAY): soups, dog hugs, sweet messages, kindness of strangers, pink bubble baths, lavender oil, scissor shopping, face masks, changing tree’s, clean balcony, making plans, realising I am making progress even if it doesn’t feel like it.
-Brain breakthrough: its about what I am doing and not about the numbers (followers etc), its about slowly achieving bit by bit a body of work and a good community. Lost followers and all the numbers do not match up to this feeling. Slowly but surely building up my work. Stop and take stock, look at the big picture every once in a while. This is a reminder!
-Little things like going off my self and having alone time and getting a hair cut. Makes me feel more human. Making time for myself and wandering alone. Time to think and also time to treat myself.
-Mothers day. I wish I had a choice to turn it all off for a while. It seems like everyone is a mother or becoming one lately and it hurts my little heart that I might not ever be able to or it can’t just happen in one lovely spontaneous surprise. This is a difficult pill to swallow. Not that I hold it against others. My heart is just hurting about all the could be’s, would be’s and should be’s. Then I realise that hopefully one day my time will come. Please stop asking though, as it hurts my heart to be reminded that I am not able to.

My week in photos- 5

What a week! This little project/series/diary has really made me realise that even if the majority of the time is a bit (a lot) shit the best bits and things are about stopping and appreciating the small little tiny details and capturing them, holding onto ones breath just to breathe it in and saviour it all. Time goes so so fast and in a blur and its easy to get stuck in it all and just trudge along. So this week, lets start with the not so good:

  • Monday starts with stressed trips to the hospital (typical Sarie style I wrote down the wrong time). Also scary MRI results (bleed in my spinal cord and having lesions on it). Also bad bad back pain and a buggered knee that just won’t give up. Finding out that the strong medication is not doing the trick and walking into my consultants office to find 6 dr’s al wanting to study you because you are such a weird rarity. Scary stuff.
  • Scary test results resulting in yet more tests and uncertainty. I now have to visit a neurologist as have CNS involvement to add to my list of ever-growing symptoms. More MRI and more medication. More doctors and more diagnosis’ and more puzzle solving. I have had enough of this.
  • Bed has been a place I have been for 80% of this week (these pictures and weekly posts are quite deceiving!). My body has felt like sludgy led iron and the tiredness (plus pain, mouth ulcers, burning face and flu-like symptoms). These do not make for great pictures though.
  • Behind on my drawing project and being so uptight about trying to produce the impossible and not letting my self off the hook. I am too ambitious and then end up being late and not doing anything at all.
  • Bad moods and black clouds. I get angry, ashamed and feel so trapped and stuck with this all. I also have the imposter syndrome and constantly feel like I don’t deserve stuff or that I am not good enough.
  • Feeling isolated with my illustration stuff and work and like the above point illustrates. I JUST DON’T FEEL GOOD ENOUGH. Also working on it alone with NO feedback is hard. I just don’t know if what I am doing is achieving anything or if it is any good. I am finding it really hard to judge my own work and have lost all confidence in my self (thanks to health and other traumatic stressful situations which I will write about in the future when I can ;))
  • News on having to go to a tribunal to be judged by people who don’t know me on whether I am sick or not. This is so stressful and scary. I know I have all the facts behind me. I just want this all to be resolved and to feel better. I don’t want this unknown hanging over me. Its one of my trigger points for anxiety and such a cause of stress and worry.
  • Being that flakey annoying friend who can’t ever keep a date or a promise.

Lets get onto the GOOD things:

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The view from my hospital is pretty spectacular. Also my medical team are amazing and have seen me and are working so hard and are so passionate and amazing really.

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My dearest most -querido- Poblenou. I love this place so much. Its industrial glory (it was once all waste land and old factories).

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Can we just take a moment to look at these great textures, colours and lines? Its spotting little details like these that make me happy.
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This week has been one of spotting great vans. I love old vans. I want one, and often day-dream about travelling around in one and stopping off at the most amazing places. One day!

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Finding really good little places tucked away inside of old warehouses. Pretty foliage and good installations (see bird houses <3).

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Sushi for lunch when I am too tired/ill to cook!

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Going to an event with my partner in crime Borja . He was invited to a Instagram Spain event. Free food(!!). I was umming and ahhing about going (didn’t feel up to it and guilt about doing anything). So glad I went though. We were totally awkward and joked around together in the corner and ate all the free food. It was so nice to get out for a few hours and just be doing something a little different from hospital or lying in bed. The place was amazing. Its places like this that is why I love Poblenou so so much. It’s also good for me to try to do semi normal things, even if it did mean straight to bed after only a few hours out. Had the best time though, thanks Instagram!

IMG_2882 IMG_2883Finally sorting out little prints and all of my illustrations!

IMG_2906 IMG_2909Oh the moon and night-time walks to the beach with my little family. I need these mini adventures to clear my head and feel like me again. The moon oh the moon. How can you not feel better by seeing this big guiding light in the sky?

IMG_2966My outfits are literally just the most comfortable things that I own. I don’t think I have worn proper shoes in so long now and just live in trainers. These are new, a present from the sales.IMG_2977My little family keeping me sane, I am not the nicest to be around when I am so ill and in pain. I am like a grumpy old woman. It’s these two that are always by my side. Thank you both, I would be lost without you. (even if I am a grumpy beast 99% of the time!)

IMG_2994 IMG_3002February has been a month of focusing on little favourite things and birds are top of my list. I do love them, and drawing them too. Swans and magpies. Ideas swirling around in my brain.

IMG_3019IMG_3029RAIN, it has really rained like it only can here in Barcelona. I’ve enjoyed the wet and damp so so much. Pretty pavements and reflections.

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Lastly enjoying how weird people and things are in this city. Very random and strange.

My week in photos 4

This old week most certainly has not been a great one. One of those weeks to write off really. I sometimes write about how difficult it is living with a chronic illness. You feel like the biggest flake in life, that you are constantly letting everyone (including yourself) down by shrugging everything off to while away your time under the duvet. The pain and the fog and tiredness are indescribable and to say “I am tired and in pain” never seem enough to describe what it is actually like. This week has been soups, drawing where I can (its my escape and the only thing that makes me feel productive and like me), trips to the centre to stock up on lush (baths are my saviour!), scary MRI scans and yet more doctors visits. I haven’t picked up my camera all week, because well, I have been in a sore coma state and not really wanted to do anything. A lot of the time I don’t really want to make much of a fuss about being ill, and it doesn’t really notice on the outside (apart from the hobbling and mong like state). I like to keep it that way, I don’t want to feel stigmatised by it all, although I am on the inside. Good things, however, have been meeting with my lovely Silje, walks around the park listening to a multitude of podcasts (Serial, Womens hour, This american life) and Netflix (Luther again!). Its also been drawing and dreaming up future plans and goals for when I am better (If I am better). The cold and the grey have finally arrived here and its been nice to go out all bundled up. I decided to make Friday my getting up and going out day as I had to go into the centre to collect my MRI results and also had other medical like errands to run (doctors and the like).

I wanted to do the day in the life photo diary by taking a photo hourly but some of the time was stuck in a doctors waiting room or trying to rest and ignore being in such pain so here are some “glimpses” of my day.

8.30 am Woken up with a cup of tea in bed. Is there anything better than this? NO!

8am

9.30 am (Yes it takes me a full hour to warm up my body and to be able to move in the morning). Finally up and out and a quick circuit of the local park to take the pup out. It is both a blessing and a curse having a dog when you feel like this. Its amazing because it forces you to get outside and in the fresh air and a tiny bit of soft exercise. But on the other hand its so hard to move and walk when you are in pain (I would liken it to knives stabbing your joints and being so wooden and stiff that each step is like running a marathon). Its good to get out though and notice the world around you and enjoy the fact it has rained after a 90 day drought in Barcelona.

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10am- Time for breakfast (Marmite on toast and a cup of coffee)

1030am

11am- Some planning and yet another cup of coffee (did I mention I am TIRED  have chronic fatigue).

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12pm-

Time to do my daily drawing. Todays love/inspiration comes from right outside my window

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13:00pm House chores and general pottering about at home. I liked the way my clean washing looked together. Good textures and colours. A little sit down with my pup.930am 1005am 1130AM

14:00pm Time to get showered and dressed. A mammoth task in itsself. Always makes me feel better though.

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2:30 And I am ready to go! See you can’t really tell there is anything wrong and I look “normal” or “you don’t look sick/ pero tienes buena cara).

14pm

15:00- 16:30 Not pictured as I had to go to the doctors and also had lunch at my inlaws (Soup and croquetas!)

16:45- In the centre and ready to pick up my results

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17:20- Time to meet with my lovely Silje for an early tea and chats. We went to Flax & Kale. It was my first time there. Alright, not totally amazing and a bit hyped up. My “english muffin” was quite dry and the service was a bit too “I am too cool and hipster to serve”, also it was quite pricey and slow for what it was and would’ve enjoyed a bigger menu choice. It was pleasant enough though and the place was super pretty. But a bit style over substance IMO.

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18:30- We decided after the “healthy” snack we would need to indulge. My lovely twin Camille once told me about this good Doughnut place called “Donuteria”. And it really did the trick. It was quite a walk/hobble there (what with my bad joints and Silje being nearly ready to pop)..

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19:15 We arrived and it more than lived up to the recommendation!

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Long chats and having someone to listen to my silly rambles is such a good medicine for me and I am so grateful that I have a few friends/sisters that I can do this with. And off back home on the metro and changed back into my pj’s and back in bed I went. Content and happy I was able to have one day of feeling like Sarie.

Sorry  not sorry if this was a bit too honest and moany. I want these weeks to be a honest memory of my time.