Doing better at the food thing

I’m only a week or so in to trying out simpler methods to get good healthy food even when I’m not doing so well, but I have to say that this week have been remarkably much easier to live through even though I’ve been in quite a lot of pain. I made a batch of mason jar salads last week (note to self; do prep work over longer period of time, not all at once) and they held up really well. I ate the last one yesterday and that was seven days after I made them and it was still fresh and nice.

I had groceries delivered last week as well. I’m trying to get all the heavy stuff delivered, and the online supermarket I used have a really good selection of allergy friendly food that I can’t get in my local store. They are really into good customer service as well so I’m definitely using them again. I imagine that I’ll get better at ordering what I use about once a month, and then I can get fresh stuff at my local store as I need it.

I need to get some smaller oven proof dishes preferably with lids so I can just chuck stuff in the oven to heat it up when I’m hungry. I’ve been using disposable dishes, but I don’t like throwing so much stuff away when I don’t have to. Cooking single serve portions seems to be an impossibility for me, I always overestimate how much I need. If you know how I’m calling you brilliant here and now :). Also, putting leftovers into portion sizes makes me eat and surprisingly throw away less food.

How do you make new friends?

I’m feeling kinda lonely at the moment. I’m in bad enough shape that seeing people in real life is really difficult, and quite frankly I’m no longer a priority for the friends I’ve managed to retain over the years I’ve been sick. I’m not exactly blaming them although it feels a bit hurtful sometimes that they don’t contact me more often. I mean, I really really understand the part about being out and about and doing whatever it is you do when you are well and able. I certainly would if I could. I just wish they’d include me a bit more that’s all. I’m also in an age group where most have smallish children, and that makes it hard for someone to come visit when I feel good enough to see them. They can’t bring their children with them to come see me even if I’d like to either (kids are noisy and to full of energy).

So here is my little problem. I sort of live my life online these days, but for some reason I have difficulties entering conversations online. I quite often have things I want to say but the fact that I have to write it out and be sort of articulate in a shortish period of time freaks me out a little. What if it comes across wrong etc. etc. What if I suddenly stop being able to english or even worse norwegish (that’s a word!)? This means that I often don’t manage to say what I want, and then of course I don’t make friends either. Ugh. I’m trying though. It’s my goal for this year to be more active online but that’s easier said than done.

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I would like some friends that understand what I’m going through, but who also tells stupid jokes and talks about pets and is as geeky as me. Wish me luck .

Food and chronic illness

When you have a chronic illness like mine food is something that can become incredibly difficult to navigate. I have picked up several allergies and intolerance’s to different types of food, and after doing an elimination diet a few years ago I managed to get the worst of the IBS symptoms under a semblance of control. I’m on a lose interpretation of the fodmap diet. And lately I have reintroduced some of the stuff I reacted to before that seems to work OK now. As long as I avoid wheat starch I can have gluten free bread for instance but only certain kinds. Sandwiches certainly makes things easier day to day, but I also have to bake my own bread.

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My energy levels dictate how much cooking I manage to do. Generally things have to be relatively quick and easy to cook. One pot cooking is something i recommend for everyone. Just chuck a load of vegetables in a Pyrex and put whatever meat or fish you like on top  and you’ll have a decent dinner in half an hour or so (remember some spices, herbs and a bit of oil and or lemon/lime and you are golden). I know I’m lucky that I have skills other people don’t have, I was a chef for a while and cooking is something I understand. But it’s also true that the worse I feel the worse my diet gets. It is practically impossible to have high standards when everything is difficult. So living on breakfast cereal, sandwiches, fruit and whatever I manage to scrape together for dinner becomes norm.

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Trying to get back in to things

So far 2016 has been a real shitty year for me. I’m having problems with my disability application after my doctor made a minor mistake on the paperwork, and I’m currently completely broke. I keep getting letters from NAV (the Norwegian disability/work/social services agencies) that claim I can just go back to my old job and work full time. I’m in a complaints process at the moment where I pointed out that my employer might not be very happy with someone coming in and collapsing in reception and having to be sent home in a taxi every third or fourth day. I am mostly housebound now, and spend more time in bed than I have before. The process is helping my health very little. I’m half panicking most of the time, and I don’t know what to do if the complaint doesn’t go my way.

The other day I had one of those doctor experiences that leaves you despairing for parts of the medical community. The only really bad experiences I’ve had has been neurologists and rheumathologists, and this one was an example of the last one. He was so focused on rheumatoid arthritis that he didn’t check for anything else, and then he tried to lecture me on how to live with ME. That was enough for me. I was shaky and brainfogged, but I managed to tell him that he should really shut up about things he knew nothing about. I gave up at that point. I might put in a complaint to the hospital at some point, it’s no wonder rare diseases take an average of seven years to get a diagnosis. I might not have a co-morbid rare disease, but if I do it will take additional time to discover.

So all in all it’s been a shitty couple of months. I keep hoping something good will happen soon, I’m having problems staying positive right now.

A good day

So today was my first follow up with the neurosurgeon and it’s good news. I wont need an operation, and the risk of a new haemorrhage looks pretty low at the moment. Obviously I need to monitor the bit in my brain stem that is slightly malformed, but over all he thought the risk of something happening again soon to be relatively low.

In addition to that, Oslo looks like a winter wonderland right now. Enough to put a pretty big smile in my face even if its to cold for me to be outside in for any longer than a trip to the grocery store.

 

Almost done with 2015

2015 has been a very strange year for me. I had a massive flare up of ME/Cfs in march after being fairly well for several years and has been on sick leave ever since.  This time as it has before it was triggered by a sequence of infections, but unlike before I haven’t recuperated enough to go back to work even part time. I just count myself lucky that I didn’t end up in the severe category, and in need of home care. I am mostly stuck at home, but I manage the day to day stuff on my own.

Now I’m nothing if not stubborn, so I started preparing for the renovation being home all the time anyway. Now that might not be the smartest thing ever. I was trying to get things in order, but six months later and I think most people would think that I had done nothing.

In October my brain decided to rebel, and gave me what is apparently a second brain haemorrhage. I don’t know when I had the first one, it must have been really small as I can’t recall any extra symptoms. I’m really grateful that things went so well, I have some problems with my eyes and short term memory but other than that I’m doing pretty good. New glasses has fixed the worst of the vision problems.

This led to the renovation project of course. I don’t think it was ideal to start something like that when I was recuperating, but it really needed to be done and I got to spend Christmas in my new home. It’s almost finished. There are some details left but I’m in no hurry now.

2016 will start with massive follow ups to my health issues. I’m having a new MRI scan in the first week of January, and then the neurosurgeons will decide if I need an operation. I had to come off some of my meds that increased the risk of haemorrhaging, and they have obviously masked some problems I have with my joints that needs looking at.

I do have one resolution for 2016: I want to live as well as I can do, and I want everyone else to do the same. You don’t know how long you have to do the things you love and be with the people you love, and that is the most important thing. I’m going to try some new things next year, and maybe I’ll love them as much as the old things I’m no longer able to do.

 

An update – sort of

My body decided to stage a major uprising against me the last few months, and any progress in getting things done came to a screeching halt. Sitting in this mess didn’t exactly help my health.

I have a major problem with asking for help. This is normal i guess, but when you are ill it kind of cumulates in that you don’t want others to have to pick up the slack for you. Cue Monday 27th of October and me sitting down on my computer playing a game. All of a sudden my vision started rolling in two different directions. I called my mom telling her what was happening, and that we would have to cancel plans we had that day. She told me in no uncertain words to call the damn ambulance RIGHT NOW, and as we all know you listen to your mom when she gets that tone of voice if you are five or forty-one.

I think the ambulance was here in five minutes, so was my mother. They rushed me to the hospital. I didn’t really realize until I got there that they thought I had a stroke. Anyway, I spent a week in hospital and the result was a minor brain haemorrhage, and a malformation in my brain stem that is probably something I was born with. I’m doing pretty well – I have a few minor issues, but all in all have been pretty lucky in how it all played out.

Getting back on topic. My mom coming in and having to do things for me made her realize how bad things have gotten. She has appointed herself building foreman, and is roping in the help I need to get the work done. The living room and kitchen is almost empty. There is someone coming on Wednesday to do the demolition needed. I have ordered my new kitchen, and I have a few builders coming to give me estimates next week. When the building work starts, I’m staying with my mother and she will be here with the contractor.

Right now I’m sitting in a bedroom that is nice, clean and tidy and liveable. I’m gonna stay here til I the next time I have to move wich is hopefully never.