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.

 

My week in photos (sort of) 8

DSCF5170 DSCF5173 DSCF5174 IMG_3328 IMG_3329IMG_3332IMG_3334

 

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.

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:

DSCF4850 DSCF4851

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.

DSCF4854 DSCF4855 DSCF4857 DSCF4859 DSCF4864

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

DSCF4865 DSCF4881

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.
DSCF4882 DSCF4883 DSCF4887 DSCF4890

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!

DSCF4902 DSCF4903 DSCF4904 DSCF4905 DSCF4906 DSCF4908 DSCF4913

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

DSCF4920

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

DSCF4923 DSCF4926 DSCF4928 DSCF4929 DSCF4930 DSCF4932 DSCF4937 DSCF4939 DSCF4943 DSCF4946 DSCF4949 DSCF4951 DSCF4952 DSCF4953 DSCF4954

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.

IMG_3023

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

A bit of cake… (pineapple upside down cake)

cake

Cake. What with the #gbbo being over and feeling a sense of loss for all things kitchy and bake like I thought I would keep the cake alive. There has certainly been a cake shaped hole in my life this week. Is anyone else having cake/baking withdrawals?

Over a month ago (I know I know) my blog turned one years old. It has been limping along as of late, much like myself, but it has reached it’s milestone and I am glad. I may have great plans for this little here blog that might never materialise, I make promises I can’t keep with it. I also feel intimidated and daunted by it, especially when more and more time passes without a proper update. However it has served, and still very much serves, as a source of inspiration. A place where I can do/say/make what the hell I like a some sort of release. And what better reason is there to celebrate than that. I must remember that blogging is to enjoy and to have an outlet. Its not something that MUST be done.

I was thinking the other day (ok a lot of the days, I have a lot of time on my hands to think and not do much else lately) that its the small minute details in life that are worth celebrating and should be done so on a regular occasion. Cake should be brought out in a ceremonious affair for those tiny little battles that have been done. I want to start to try and be a bit more considerate and grateful of the small little winning moments in my life. The big stuff is a bit too scary at the moment.

The other day I set it upon my self to make an easy cake, something that was simple and didn’t require to much physical exertion on my part. Something tasty though. It was baked on a Sunday. To celebrate Sunday.
Good things in my life worth celebrating this week are:
Wonderful friends and especially family. Its the small little bits of contact that keep me going.
Dr’s and nurses and their tireless amazing work that they do every single day. I have a lot to say on this subject so…
Autumn chill finally starting to arrive here, all the leaves are turning and it is sunny and cold. Just the way I like it.
The simcity game on my phone.
Lindt salted chocolate is the best.
Cups of tea.
Puppy warm duvet hugs.
Being bought magazines and treatment survival items.
Burgers for celebrating a long day of being scared and hospital procedures and treatments.

Here is the recipe in full for this weeks celebratory cake. The Pineapple upside down cake:
recipe1

YUM