pink butterfly on pink flower
Thoughts and dreams

My chronic illness DOES define me

You know that saying:

I won’t let my chronic illness define me!

I get that it’s meant to be inspirational. I just don’t agree. My chronic illness does indeed define me. Fibromyalgia has taken away so much of who and what I used to be, and I’ve had to change accordingly.

Loss and changes

There’s been a lot of loss and grief because of my illness. The biggest loss is the able body. The pain and fatigue limits me in all kinds of ways. Those limits define what I can and cannot do, which in turn define who and what I can be. That’s not to say it’s all bad. It’s just that I’ve had to make changes. There’s no point in denying that this defines me.

The good thing about ‘the new me’ is that I have accepted that I’m chronically ill. The first years after I was diagnosed I tried to fight my way to health. I wanted to beat the illness. I was led to believe that I could, if I only did everything right. Exercise, healthy diet and stress management would cure me. Turns out it didn’t. It still took another few years to accept that fact. I felt that I must have failed somewhere, that it was all on me.

I can’t say that I’ve dealt with all the loss yet. It comes back in waves. Suddenly, I remember that I’ll never go back to my job as a personal trainer, and I really miss it. I miss the clients, the look on their faces when they manage something they didn’t think possible. I miss working with people who share my love of exercise, and I miss having a job to go to.

As I mentioned in an earlier post, I had to rehome my dog. That is another awful loss. Not just Yuki, but 30 years of being a dog owner. My parents will tell you I wanted a dog from the moment I was born. I miss having a dog companion at home, when I’m out walking, when I’m bedridden. I might get another dog later, but not the kind I’m used to. I’m no longer fit to be an owner of working dog breeds.

I used to write all the time. Stories, poems, blog posts. I can’t do that anymore. My head is too foggy. That’s why I don’t post consistently, and why some of my posts are mostly pictures. I can’t even keep a diary or journal.

These things used to define me. They don’t anymore, because of my illness. Other things define me now: I’m a spoonie, my house is filled with cats, and I can still (thankfully!) read lots of books. My life is slower, which feels just fine. I take the time to appreciate flowers, smells and bird song on my walks. I spend more time taking pictures. The constant stress that haunted me for years is all but gone. I still have hopes and dreams for the future, but they’re not the same as before I became ill.

Spending spoons

3 things that made me happy in May

May was a good month, and I have some happy memories to share.

Yuki got a new home

Making the decision to rehome Yuki was hard, but once I’d found the right family I was happy about it. I keep in touch with her new family and know that she’s happy, too.

close up of the face of a happy dog

The weather

It’s really unheard of in Norway, but all of May was like summer. The heat can be exhausting, but all in all it reduces my pain and I’ve been able to cut back on the pain meds.

overview over May weather in Oslo

Growing kittens

The kittens are a constant happiness boost! They are 9 weeks old on Wednesday. 3 weeks until they’re ready for their own homes.

black and white tired fluffy kitten

 

 

Spending spoons

2 things that made me happy in April

April was a high pain, high fatigue month, but there are good things to remember.

Kittens!

Much to my surprise, one of my fosters had kittens under my bed. Watching them grow from teeny, tiny babies to playful rascals is just awesome!

Lakris at 3 weeks old. (Photo: Lexidh Solstad)

Rehoming Tigern

One of my cats, Tigern, needed a home of his own. I found him the perfect place: a small farm farther south in Norway. I get updates, and I know he loves having a whole farm and family to himself. I miss him, but I know he’s a lot happier now.

 

Thoughts and dreams

Monday morning thoughts

It’s been a tough weekend, and I’m happy to see it finished. Nothing happened, I was just exhausted and in bed most of the time. I don’t cope well with being stuck in bed, which is something I try to work on. It’s inevitable with the level of fatigue I experience, and it doesn’t help that I get upset.

Actually, it’s been a tough few weeks, and I think I’ve reached my limit. It started off with three of my fosters running away the very same day they got here. Since then, two of them have been caught, but the last one is just too clever. I feel bad that they got out of the catio, and I feel bad for the scared little guy who’s now all alone in unfamiliar environment.

Add to that, I had to go to the A & E in the middle of the night a couple of days after the runaways made their break for freedom. I still don’t know what is wrong, but my doctor has started to investigate. Something is wrong with my intestines though. I’ve got new meds that help with the nausea at least.

On top of this, I had decided to find my dog a new home. I finally realized I won’t ever be in good enough shape to give her what she needs. I put an ad online, and found her the perfect home. She moved to her new family on Thursday. Now, I’m really happy about her new home, but I’m heartbroken. For one, I love her and miss her. Also, I’ve had dogs for the past 30 years. It feels like a (another) big chunk of my identity was taken from me when I gave up Yuki.


It’s a sunny morning and I have kittens running around in the living room. My mum is doing my grocery shopping, and I can rest today, too. I hope I’ll feel well enough to sit on the veranda and catch a few rays of sun. I just want to get in touch with myself again. Find the parts of my identity that are still there.

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.