I just ate a delicious salad with grilled entrecôte steak (I think it’s called porterhouse or sirloin in the US/UK) and it got me thinking. I’m in a bad period energy wise and eating healthy has fallen by the wayside. In addition some new meds have me hungry all the time (it’s gotten better after I added sink to my supplements). I’ve gained a bit of weight I really don’t need with my shitty knees and I would like not to gain any more.
I was thinking I should try making mason jar salads. As I understand it they can be made up to a week in advance and stay fresh if you pack them right. I think I need to make snack packages for every day too. I’m making a shopping list heavy on the fruit and vegetables, and hopefully I can make a difference in my diet. I’m adding smoothies in the morning as well. I’ll freeze ready made bags with everything I need, and it should take very little time to make. Fast, easy and tasty is the way to go for now I think. I’ll make a progress report later.
I’ve just come home from a meeting with NAV (the Norwegian benefits/social services/work benefits agency) and things are finally looking up. I wrote about it in this post: Trying to get back in to things. I just got a verbal approval in my complaints process, so I’ll have the benefits I’m entitled to soon. It’s such a relief, I had to get emergency social funds to manage last month and that just felt so amazingly wrong event though it’s what they are there for.
Now on to battle with the insurance company on my temporary disability insurance…
I’ve always thought I couldn’t keep house plants alive. Turns out you have to water them regularly and then they’ll thrive. Look at my living room window.
These guys have doubled in size in the last six months.Being housebound is apparently good for something 😉
Sorry about the picture quality, I can’t seem to manage good pictures on my iPhone. I hope I can get a better camera soon, but for now you can see my fabulous oak table and my lucite chairs.
I killed my Venus fly catcher though… Poor Frank, I hardly knew you
Today – May 25th – is a global day of protest for M.E and CFS patients. It is organised through MEAction and what’s happening can be found here: http://millionsmissing.meaction.net/. Actions are planned in several major cities and activists have been sending shoes so we can show our empty places in the world. I haven’t had the money to send mine to the organisers, but here is a picture of my lovely new Adidas originals on my doorstep pretending to go out in the world and have a life on the outside. I think they are going to last me a long time, I’m mostly indoors now, and barefoot is more comfortable laying down.
Personally I’m missing from my life as someone who was good at her job, had ambitions of developing skills in design and marketing and wanted to do something about the words running around in my head. I’ve had the opening of a horror novel set in a remote area of rural Norway running around in my head for a while. It won’t leave me alone, and I will write it but I think it might take me a few years.
I’m also missing as a friend. My friends do understand that being with them is to draining. I’ve lost friends, it’s difficult to stay in touch with a person who is never there and I’m admittedly difficult to stay in touch with. I’m missing as a family member. Last Christmas was celebrated in my pyjamas with just my mother present. It was nice, but not the way it’s supposed to be. I’m missing as a daughter, my mum has to help me with everything and it should be the other way around. She should be able to enjoy her retirement and not having to worry about her 41 year old daughter. Sometimes I’m glad my dad isn’t alive to see me like this – it would have broken his heart I think – and sometimes all I want is my daddy to come and make it better.
I’m missing from all the things I love to do. I love to be outside. I love hiking and swimming and being in the mountains. I love travelling and seeing new places. I’m missing from all the new things I had yet to discover. I missed out on doing the physical work on my renovation project myself. I’m missing from having a boyfriend, I find it hard to really get to know someone online and that is probably the only way it will happen now. I’m missing having a dog or two. I grew up with dogs, and I think daily about getting one again but without a yard to let it out in it seems impossible.
This is what this stupid disease is taking away from me and all the people who love and care about me. There are an estimated 17 million people with M.E worldwide. Do you know someone who is missing?
I have real problems watching TV these days, but a smaller screen like an iPad and using headphones works for some reason. Following new shows and storylines is really difficult for me, and with all the great stuff I read is out there now it makes me sad. I’ve tried to watch all the new superhero and sci-fi shows on Netflix, but the stuff I know I would like is to difficult to follow for me right now. I’ve tried a lot of first episodes that I think is great, but ask me 10 minutes later what I just saw and I won’t be able to tell you. I never seem to get to episode two.
I’m absolutely not able to go to the movies at the moment. I was really hoping to be well enough to see Captain America: Civil War, because I’ve been looking forward to it since the Winter Soldier. I manage to watch movies on my iPad, with low lights and low volume – but I’s not quite the same is it.
I do watch some old stuff on Youtube these days. Most of the Mst3k episodes are there and they are just as funny as I remember. I love bad movies – particularly monster movies – and when I was better I wrote live watching posts with plenty of snark on a few. They are on my tumblr and I think I might bring them over here some time I have the energy.
It’s also pro cycling season, and the Giro de Italia is on and I’m not able to follow. It’s just to much flipping between cameras and helicopters. I have to get a little bit better for the Tour de France. It’s my favourite race.
Today is the International ME Awareness day, and May is ME awareness month. One of my goals is to be more active in the patient community, but I often find it difficult to formulate and get across my opinions and even factual information the way I want it to sound. I lurk on forums and blogs because I find it difficult to write something I want to share fast enough (yes I know, other people wont feel that way). I’ve written before on how difficult information gathering and fact checking are now.
It’s a difficult illness to live with. I got sick with a series of infections in 2008 including swine flu and pneumonia, and unlike any other time I have been sick I just didn’t get better again. I managed to slowly get back to work almost full time again but that meant working at least two days a week from home, and not having any social life. I stopped pacing my activities so rigidly and when I got a new series of infections a year ago my ME flared something awful.
Right now I’m somewhere in between moderate and severe which means I’m mostly housebound. I manage to sit up during the day, but I’m in bed at least 14-16 hours a day and doing simple things like vacuuming makes me exhausted and in pain (I did that today, and had a blood sugar crash, wohoo).
I still feel lucky though. About 25% of ME sufferers are severe/very severe, and what they have to go through is something I wouldn’t wish on anyone. I also think a lot about young people with ME. At least I got to do all the stuff young people are supposed to do before I got sick.
There is biomedical research under way that holds hope for finding illness mechanism and even treatment options. The internet community is organising, and soon or later we will manage to shame the people that sits on the funding enough to pay up.
I’ve been trying to write this post on what interests me and helps me through when things are a bit rough like now. But I’m having trouble keeping it together. The other night I tried to write about my history as a comic book nerd, and wandered off into a long explanation off why I love Modesty Blaise despite it being problematic (at least the early stuff, and some of the books to).
The internet is for someone like me a lifesaver. I get to stay in touch with what’s happening in my areas of interest, discover new creators and genres and sometimes have a conversation with someone as nerdy as me. I get to feel like I’m part of the world for a little bit and be a little part of my friends lives even when I can’t take part in person.
I was relatively early online, my dad got a modem in 95 I think, and I used his connection when I was at home. I got my own in 96. Some of the guys I went to school with were gamers, but I discovered fan culture and realised that I wasn’t alone in being weird and a bit obsessive. You could say I discovered my people.
Some in the medical community acts like the internet is not real life, they seem to hold the view that not speaking face to face doesn’t count. Have you ever noticed that this is the same line of thought/excuse that trolls use? That what you say or do on the internet doesn’t count because it’s not real life? Its real alright: