Lets start with GOOD things. Things to be grateful for:
Bubble baths, especially with Lush bath things.
Little walks and fresh cold air with the sun shining.
Yummy food like butternut squash risotto and courgette frittata (also take away sushi and Lebanese on major ill days).
Rummy. The best game in the world.
Family and chats with my dearest sisters.
My amazing medical team and the care I get.
The hospital and its stunning views.
My family here.
Pretty tree’s and plants around. Nature always nature ♥
Discovering new little places that are hidden.
Soft bed sheets and doggy hugs.
Making patterns and learning new things (the art of a repeated pattern- obsessed!).
Yet another week has passed and what a week. Again, not much joy and light as I have had another major relapse in health and have mainly spent my days in bed (literally house bound for most of the week). I have had trips to the hospital most days, which has proved to be difficult really as I find them highly stressful and emotional. My week started last Saturday stuck in a MRI machine for nearly 2 hours. It was a relief to get out and step outside of the hospital and see the sea. A sight I will never bore of. We stopped off at a bakery for a bocadillo and a coke before heading home and witnessing the most beautiful skies and sunset. Yet another amazing Barcelonian experience that I will never tire of. I have been on a real downer this week, I will try to spare you all with it as it isn’t fun to read. But its been difficult coming to terms with the fact that more scary health things have come to light (a bleed in my spinal cord caused by vasculitis- another scary serious symptom of having this disease). I have had my skin biopsied and now have stitches, I have been prodded and poked and have had 10 more syringes of liquid drained from my knee. I have also been unable to walk. The scariest thing is that I am on a lot of drugs and just don’t seem to be responding. I am losing the use of my left hand and as a left-handed illustrator this frightens me more than you can know. Suffering this is quite a lonely experience, with a lot of emotions bubbling at the surface. It has made me stronger and I feel like I can do almost anything compared to it all. However weeks like this have not been easy. My days have been mainly spent in bed, or having a bath and watching crappy netflix stuff.
I did want to write something that I recently wrote about over on my twitter account (
Btw a little rant: why do people feel the need to compare their aches & pains with a serious chronic disease. They wouldn't dare with any other serious disease and that just flabbergasts me.
— Hello Sarie (@meoldchina) March 11, 2016
) I can not believe that people deem it ok to say or compare their minor ailments to someone that is going through a major disease, complete with being pumped through of chemo drugs and anti malaria, steroids and a whole host of other drugs to try and keep my body from attacking itself. Most days feel like I am going through a dreadful bout of the flu along with the fact I am losing my ability to walk and be able to carry things or do simple tasks like getting to the toilet on time and being able to dress my self. I am no victim , don’t get me wrong and I know there are many people out there worse of than I. However just have a bit of compassion and think a little before opening your mouth to try and empathise that you are not empathising. To be told that you are “achey yet able to get up and go” diminishes what I am going through, its as if I am not as strong and not “fighting” enough. Just because what I suffer with is not a well known disease doesn’t mean its any less important or less of a struggle. I am angry, very angry that I have had the bad luck of getting this awful thing and the worse thing about this disease is the bloody awful comments and misguided advise that people, who know nothing about the medical profession, seem to think they can dish out. Its hurtful and vile and just because you are suffering with a common cold does not mean you have the right to compare. I would also love to be tired for a good cause too (like going out partying, being kept awake by whatever). I am tried of being made to feel weak or like I am pathetic, I am made of very very strong stuff. Even if I show my pain or sensitivity. This is not an invite for comments and such, especially as most of these people who make the comments do not have a clue of what it is I am fighting with. It isn’t just a one off bad day with “aches and pains”. As I said I know that this disease isn’t the worse, and there are worse people off than me fighting the same disease. But please save your well meaning advise or comments and think before opening your mouth a little bit. Any way that has been this week. Anger, pain, disbelief and a lot of ill. Next week will be a tough one too as have quite big things happening. I will get through it somehow, as I always seem to do.
Thank you for reading if you have read this far.