Chronic illness

Spoon Shortage

Since the kittens were born I’ve not been able to rest and get the spoon count back up. It’s been 2,5 weeks and I feel pretty desperate. Not that I haven’t had longer spoon shortages, but it’s spring! I want to be outside and do stuff! It’s just a serious case of FOMO really. My body needs to rest, but my head is really busy.

What I want to do

  • Take daily walks with Yuki
  • Clean out the garage
  • Get lots of flowers for the veranda
  • Sit outside in the sun

What I actually do

  • Try to stay awake until bed time
Cats and fosters, Chronic illness

Kittens and flares

Some of you might have found the website down the past few days. That was due to an update of a plugin, and I didn’t have the spoons to fix it right away. All my spoons were caught in a flare up that started on Wednesday.

Surprise, kittens!

During Easter I got a new foster cat that moved into my room. Her name is Signe, and she is not all that used to people. So she hid a lot. I could pet her, but she wasn’t too happy about it. Anyway, Signe came from a farm were the nice farmer had fed her meatballs. Chances were that she was fat because of that. Then on Wednesday afternoon I had to lay down in bed to rest, as I usually do. Suddenly, tiny tiny sounds came out from under my bed! At first I didn’t even understand what it was. I thought maybe it was something outside, since the window was partially open. After a couple of minutes the sounds were obvious, but still tiny, cat sounds. I checked under my bed, and there was Signe with a newborn kitten!

The adrenaline surged, and boom! Headache. I had to make a cave for mama and baby in a hurry, and set up the kitten pen in the livingroom. And then it turned out Signe wasn’t interested in her baby and just left it crying on the floor. I had to hold it so it wouldn’t be too cold. Thankfully, Signe went into the cave I’d made her, and I was able to put the kitten in with her. I started to relax, and thought ‘OK, one kitten is not that bad’.

2,5 hours later she was in labour again. Two more kittens came, but this time she took care of them. I tried to give her as much privacy as possible, but eventually I had to move them all to the kitten pen. I took her kittens (she would actually let me do that) and put them in the cave/cage and Signe went in there with them. Then I could just close the door and carry them to the kitten pen. With everything set up in there I could leave them for a few hours and let mama do her job with the babies without stressing her further.

Flare up

That also meant I could relax. The headache was killing me, and my meds didn’t do anything. The adrenaline had left my body, and I was exhausted. I don’t really remember much of the rest of that day. Thursday and Friday was pain and Hell. Because of the pain I was nauseous, too. I did the few things I had to do, like check on the kittens and go to the bathroom. My assistant was here on Thursday and she helped me with other stuff that couldn’t wait. Friday I had to cancel the cleaner, because I couldn’t face any sound whatsoever, and the thought of someone talking to me and moving around in the house was too much. I still had a headache and it had also moved to the jaw. I couldn’t chew any food.

By Friday night I finally remember what usually helps me out of a bad flare up. If I double my pain meds, but take them at the usual time, it usually puts the pain back to baseline. So I did. Of course, I stayed in bed, kept the room dark and quiet. I also only ate mashed food or soups to prevent the jaw from getting worse. Saturday morning the headache was almost gone, the fibro pain was on a normal level and I was just utterly fatigued. I stayed in bed most of the day, and at night I could finally move around in my normal fashion (which is to say, not fast and not far).

Back in control

Today I feel normal (for me). There’s pain and fatigue and I’m really tired, but it’s the level I’m used to and can live with. Signe and the kittens are doing great, and she has even started to enjoy that I pet her. I hope I can get back to walking Yuki again now, and just do little things around the house. Before all this happened I was on a positive track and I’ll try to continue without further delay, but also without overdoing it. Wish me luck!


Want to see some pictures of the kittens? Follow me on Twitter!

Chronic illness

Lessons from my constant companion fibromyalgia

Fibromyalgia is a strict teacher. You adapt or you crash. It took me quite a long time to adapt. (I’m still adapting, to be honest.) I kept fighting and fighting, trying to will the pain and fatigue away. That obviously didn’t work. It might very well be the reason I’ve gotten even worse over the years. In fact, I got so ill that I had no other choice than to learn from my experiences.

These are my top 3 hard earned lessons.

1. Accept help

This has been a hard, but rewarding lesson. I used to feel like I had to manage everything on my own, and that asking for help was a sign of weakness and dependency. Fibromyalgia has taught me that accepting help is paramount. Without help I wouldn’t be able to live my day to day life. My family and friends have always been there for me, and now I also get the help I need in the home from the local health services.

2. Have patience

Oh, man, this is difficult! I want things to happen NOW, but with fibromyalgia it’s always one step forward, two steps back. Especially when it comes to exercise, which I love and miss a lot. I have learned to appreciate the things I can do when I can do them, and try not to expect  or even hope for the progress that healthy people get. Progress will come, but so painstakingly slow.

3. Never give up

There have been a few times over the years that I wanted to give up. There’s also a moment almost every morning when I wake up to the same pain, and I wonder if it’s all worth it. But then I think of my son who’s the light of my life. And the cats meet me when I go to the kitchen. Maybe the sun even shines. There’s always a reason to go on. Better days will come.


There are other lessons. So many lessons. Every day I learn something new, or am reminded of something I learned over the years. I think it’s a helpful exercise to think about what is gained, even though the loss can feel overwhelming.

I’ve lost the ability to work, but I’ve gained the ability to foster cats in need.

I’ve lost some friends, but I’ve gained new ones.

I’ve lost the person I was before, but I’ve become someone older, wiser and more relaxed.

It can be exhausting trying to look for the silver lining all the time, though. Sometimes you just have to mourn. 


Thanks to Lee at Fibro Blogger Directory for prompting a post about what we’ve learnt from living with fibromyalgia.

Chronic illness

My must haves for bedrest

When pain and fatigue forces me to some (usually overdue) bedrest, there’s a few things I have to have close by.

Kindle

What would I even do without hours and hours of reading? I prefer reading British crime series. Reading a series helps me stay focused because I don’t have to get to know all new characters and environments when I finish a book and move on to the next.

Heat blanket

Yeah, I live in Norway, so that goes without saying really.

Water

I always keep a big glass of water next to my bed. Hydration is important! Usually I prefer a little lemon in my water.

Meds

You know, pain meds, supplements, antidepressants, and so on. The whole pharmacy really.

Tea

Must have tea!

Cats

I’m blessed with a house full of cats since I’m owned by five and foster even more. Some of them like to stay in bed with me, some of them just entertain me with their playfulness in my room.  I never feel lonely!

Adjustable bed

This is the biggest and cleverest investment I’ve been able to do lately. I had a refund from waiting months and months on my sick-pay, and I used some of it on my electrically adjustadble bed. It’s a cheap model, but it really helps that I can lay down and sit in different positions without having to use a million pillows and never getting it right.


Do you have some must haves for bedrest? Drop me a comment or create your own post. Be sure to ping me so I can read it!

Chronic illness

3 favorite blog posts this week

For the longest time I didn’t have the brain to read blog posts unless they were super short. Since the fog has lifted a little, I can finally read longer posts on-screen. These are my favorite reads this week:

Healthskills

Thinking the worst – and willingness to do things despite pain

This is a great post on a study of pain acceptance and pain catastrophising. I think it’s really interesting to know the mechanics behind different approaches to pain. I know there’s so many things to factor in, but this post has a couple of answers.

My question now is – what helps someone to be willing to do things even when their pain is high?

Counting My Spoons

Are you happy? Or just complacent?

Reading this post really made me think. I’m not going to say more about it. Just read.

Looking back it started just about exactly a year ago as I began to really think about happiness and what it means to me.

A Chronic Voice

4 Cool Truths My Partner Said (Unwittingly)

Another thinker for me, and very relatable (except for the partner part…)

Have you ever had that lightning bolt moment where an offhand statement made by someone else knocked you off your feet?

Chronic illness

Fatigue management

We always hear about pain management, but not so much on how to manage fatigue. As I wrote earlier this year, my fatigue levels are falling, and I’m not really sure why. I still take vitamin D, and I have added BCAA to my supplements. A couple of preliminary studies have shown that BCAA can be helpful for fibromyalgia patients, and I decided to give it a try. I think it does help quite a bit, although it’s not a miracle cure. It just lifts some of the fog and helps me do a litte more during the day.

Another thing that obviously helps at this time of year is that I wake up from daylight through my window. The winter is really dark here in Norway. The hours of daylight are spreading now, both in the AM and PM. I’m sure that’s a very good thing for my inner clock.

I’ve been trying to be more active without overdoing it. I take walks with my dog twice a week instead of once, and I manage to do some chores, too. I can also sit by the computer in the kitchen, not just in my bedroom in the dark. I do need to pace myself still, but most days I don’t need a nap. Just some downtime in bed with my book. That’s huge progress for me, as I needed a 3 hour nap daily just a few months ago.

I would recommend my fellow fibromyalgia warriors to try out BCAA. If it doesn’t work for you, you can just stop. Vitamin D is of course essential, especially for those who get little daylight.

Chronic illness

January recap: Things are looking up

January has been the usual rollercoaster of good and bad days, but on the whole I do think things are looking up. I keep a diary of sorts on Google Keep to remember what I’ve done during the day. That way I can check back and see what I’ve been able to do when I’m stuck in bed and feel like I’ve done nothing.

Although I’ve had some extremely bad days, I’ve also been able to

  • Walk the dog once a week
  • Use the snowblower in the yard twice
  • Go shopping with my friends two times
  • Have friends and family over four times
  • Publish 9 blog posts

I’m especially happy about being able to walk the dog again. We don’t go fast or far, but we go!

 

 

Chronic illness

The fatigue conundrum

Whenever I experience changes in pain and fatigue levels  I wonder what I did to cause it (if anything). When the changes are for the better I would very much like to know how to keep it going.

It feels like the fog has somewhat cleared from my head now and I can think straight again. For the past few days I’ve had lower fatigue levels than usual, which is entirely a good thing, of course. I just wonder if it’s because:

  • I cut all flour-based foods from my diet again
  • I replace much of that food with fruits and veggies
  • I started taking vitamin D supplements again a month ago
  • Or maybe it’s just a coincidence 

Could be a combination, of course. I hope it lasts for a while whatever the reason!

So, why would I cut flour-based foods in the first place, you might wonder. I know from experience that my stomach gets upset by some food stuffs. Flour is one of them. It doesn’t matter if it’s gluten-free or not. My stomach doesn’t want flour. Whole grains are OK in very small doses.

I’ve cut flour from my diet a number of times over the years, after one of my doctors suggested it might help with my recurring stomach problems. She suspected IBS.Other things I have to stay away from include onions, garlic, oranges, bell pepper and a few other vegetables. This is based purely on trial and error on my part. I hardly ever eat pasta, but I do have one weakness: bread.

I really like bread! In Norway we do eat a lot of whole wheat bread. What usually happens is, I cut flour-based foods from my diet for a few months. Then I feel better and think it won’t hurt to eat bread once a day, and then it snowballs over the weeks. Which is stupid of me. I do always feel better when I don’t include flour-based foods. Not just in my stomach. It’s the first time I see a very clear (possible) correlation with fatigue levels though.

I’ll talk to my current doctor about this the next time I see her. I think communicating with the doctor about any changes in lifestyle and the effect it has or may have on the body is important. Especially when it comes to chronic illness.

Chronic illness

First doctor’s appointment of the year

I went to the doctor today and we had a chat about plans for 2018. First of all, I needed a paper that will allow my assistant to come with me different places for free, like the spa, the gym and the cinema. That’ll make it possible for me to do more fun stuff! That will ensure a better quality of life. A good way to spend some spoons.

Secondly, both my doctor and I are hoping I’ll be able to cut back on my pain meds this year. For that to be at all possible, I’ll need to get a lot more fit than now. I know from experience that training like yoga, spinning, hiking and weights work well for me. This time I won’t muck it up by thinking I’m well enough to work when I feel better though. My doctor will see to that.

The pain meds I’m taking are not ideal, but of all the meds I’ve tried over the years they are the best for me. They can cause dependency though, and I’m already on a high dosage after 5 years use. Drowsiness is also a known side-effect, and with my fatigue I don’t really need to add more tiredness.

We’re moving forward with baby steps. For now, 5 minutes of yoga a day (at home) is my training. I find that very frustrating, but I’m looking forward to being able to do more.