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 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.

9am 830am 910am 915am

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).

1010am 10am

12pm-

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

11am 1035am

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.

1105M 1110M

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

17pm 12AM

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.

18pm 1730pm 1830pm 1831 1900pm 1901pm 1905pm 1930pm

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)..

2000pm 2030pm

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

2045pm

2100pm

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.