5 Things I Learned From Having CFS

It has been almost exactly 2 years since I was diagnosed with Chronic Fatigue Syndrome so I thought I would do a little post sharing what I’ve learned from having CFS.

5 Things I Learned From Having CFS | bluchickenninja.com

Bedtimes are mandatory.

In the past if I wanted to stay up till 3am reading fanfictions I could do that. Now I have a bedtime, it’s like I’m a child all over again. I need to be in bed by 9 and I need to get 12 hours of sleep otherwise I’m going to feel like death in the morning. I miss being able to stay up all night, I mean there is a very good chance I was going to regret it in the morning but I want control back and I want to know it’s my choice to stay up and regret it later.

Audio books are magic. 

Despite just saying that I need 12 hours of sleep a night, I actually have real problems getting to sleep. I would love to talk to whatever sadistic god who decided to create an illness which causes you to be constantly tired and be unable to get a decent night’s sleep. It’s not even funny. Anyway I’ve found that audiobooks are fantastic for those nights I lie in bed unable to sleep. However I have found that if you are able to get into that half awake half asleep state we spoonies pretend to call sleep you’re going to have some mighty weird nightmares if that audiobook is still playing. I didn’t realise it was possible to have nightmares about NASA. Turns out it is.

Disabilities aren’t inspirational.

I feel weird calling the thing I have a disability, it’s disabling but I don’t feel like I have a disability. But I have been given a new insight into what it’s like to have a disability and here is the thing. There seems to be this idea that having a disability makes you inspirational. It doesn’t. Because the people you see that are called inspirational tend to have a visible disability. But they aren’t any more special than everyone else. Here is a secret about people with disabilities, they are just normal people, exactly like you and me. They didn’t choose to have a disability. So basically what you’re saying is “good for you living your life even though you’re different”. Being different and looking different doesn’t automatically make you inspirational.

Invisible illnesses suck. 

I recently had a talk in college about equality and diversity and one of the interesting things I got from that is the vast majority of people at college with disabilities have invisible ailments. I think this is something that it’s really easy to forget about, most illnesses are invisible. Just because someone looks fine doesn’t mean they are. Really what I’m trying to say with this is be tolerant of people, you don’t know what’s going on and you can’t assume that someone is okay just because they don’t look sick.

A sense of humor helps. 

When you have a chronic illness you need to find ways to laugh at it. Because having a chronic illness sucks, don’t let anyone fool you into thinking it’s all sunshine and daisies. But I also can’t spend my whole life sitting around thinking about how shit it is (I mean I do occasionally do that anyway). So I find ways to make fun of it. I laugh at my latest brain fart or that time my ovary committed seppuku. Because the only other option is hiding in a corner and crying.

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Doing College With CFS

Doing College With CFS | bluchickenninja.com

So I did an update post a few weeks ago where I said that I was doing fine and wasn’t having any problems with my CFS… yeah I spoke too soon. Admittedly it did start out okay but the last three weeks have been awful.

Its not been good at all, which is really annoying in a way because I’ve been enjoying the course. I like doing the work, but I’m tired all the time. I mean I’m tired all the time anyway (I don’t remember what not being tired feels like). But it has got to the point where it’s started to affect my mental health which is never good.

I admit that its partially my own fault that it got so bad. I like class, I want to be in class, so far I haven’t missed a day. But it means I’ve been going in on days where I possibly shouldn’t have. I know that CFS isn’t like a cold that you can just work through. I know I’m not very good at managing how much energy I use. But I think part of that comes from me not wanting to accept that I have limitations on what I can do.

I suppose one good thing to come out of all this is I accepted that I needed help and spoke to student support. They have been so nice and reassuring, seriously, if you are a student and are having problems (even if its with something like anxiety or depression) go talk to student support. The woman I spoke to has been the only person apart from my doctor who fully understood how CFS can affects life.

One more thing I should mention, I was worried how I would explain to classmates about the CFS thing (because I didn’t want to talk about it if I didn’t have to (going back to this whole I am not my illness thing)). Turns out at 8:30 in the morning everyone is tired and I am definitely not the only one complaining about it.

This was a very long-winded way of saying I haven’t been as active here recently and sorry for taking so long to reply to comments.

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Do I Have CFS?

Do I Have CFS? | bluchickenninja.com

So a few days ago Emma Blackery announced that after being unwell for many years she had finally been diagnosed with CFS. Now I feel really sorry for her because while its great to know what you have, being diagnosed with CFS sucks. Really sucks. Not only is the actual illness horrible, but for a long time CFS/ ME was the diagnosis you got if doctors didn’t know what was wrong with you. Fortunately more research is being done, doctors know that CFS is some type of neurological disease, but they still don’t know much about it. Basically you don’t want to be diagnosed with CFS.

One thing that Emma talked about is that CFS is an invisible illness, you don’t see many people talk about it, and as such people don’t really understand what it is. One of my neighbours was diagnosed with ME way back in the 80s when it was more commonly known as “yuppie flu”, basically people thought that it was just laziness rather than an actual illness. But because of Emma’s announcement I’ve seen many people ask “I’m tired does that mean I have CFS?”. Now the first thing I’m going to say is if you’re constantly tired that is something you should get checked out. But you also need to understand that being tired and having chronic fatigue is not the same thing.

One of the main symptoms of CFS is tiredness, but its constant never ending tiredness. I could go to bed tired and wake up still tired. Thats if I actually get some sleep. CFS also causes all sorts of sleep issues. I could be tired and want to sleep but not be able to. Not only are you tired all the time, but doing stuff makes you more tired. Even those little every day things like getting out of bed or taking a shower or reading a book. When I first got CFS I would have to go lie down after getting out of bed because even that was too much. Not only that but you have this thing called post exertional malaise. Basically you could do stuff one day then wake up the next feeling horrible because of it.

Then you have the really fun stuff like muscle pain, headaches, breathlessness, feeling like you’re going to pass out and my particular favourite. Brain fog. Brain fog makes you do some really stupid things, it makes you forget stuff, it makes you mix up words – last year I was constantly asking my sister how her latest driving test went – it affects your ability to concentrate or focus on something. I told my doctor at one point it felt like I couldn’t think. I couldn’t count to 10, I’m constantly forgetting words (fortunately I have Joe to act as a thesaurus), just last week I caught myself about to pour hot water into the tea caddy rather than my mug. Brain fog is not fun.

Every time I see someone say how great it would be to have CFS I get so mad because they obviously think CFS is some excuse to be lazy and do nothing all day. Its not something you want to have. If you’re just tired all the time you probably don’t have CFS but you probably want to get that checked out anyway. If you can relate to the other symptoms you should definitely get that checked out. CFS is horrible and you don’t need to feel like you’re alone.

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Holy Cyst Batman!

Holy Cyst Batman!

Yesterday I came across this link on Reddit:

TIL the longest surgery to date was a 96-hour marathon to remove a 300-lb ovarian cyst from a 600-lb woman. Simply hacking it out would have killed her, so the surgeon gradually drained fluid from the cyst over the course of 4 days, shrinking it to 100 lb. and allowing for a successful removal.

I noticed a number of questions about large cysts in the comments and while I can’t claim to know how this woman felt, I thought I could answer these questions from my own experience of having an ovarian cyst. My cyst was also only 15lbs so while it was extremely large in comparison to most cysts, it was nothing compared to this lady’s.

How did it get that big?

I am overweight. I have been for most of my life. I’ve been working on it but its taking time. I’ve also never really had regular periods. This makes it extremely difficult to tell if I have a problem with my periods because they have never been normal. It also makes it difficult to determine when the cyst first began growing. I have a feeling that it was at least 4 years ago (remember I had the cyst taken out over a year ago).

I was fat, there is no nice way of saying it. I was fat all over. While it would be extremely easy for a thin person to see that their stomach was growing larger, its not so easy if you already have a large stomach. It was only when I started to lose weight that I noticed there was a problem. I was losing weight everywhere except my stomach. It got to the point where people started asking if I was pregnant (tip: if you see someone and think they are pregnant, don’t ask, don’t even mention it).

There was also the fact that I was in denial about there being a problem. I knew something was wrong but didn’t want to admit it. Because I knew it would not be good whatever it was. It also didn’t help that the first time I went to see a doctor about it they assumed I was just fat and all my problems were being caused by me being fat. I am now almost certain that what I was experiencing was ovarian torsion which is very very not good.

Didn’t it hurt?

Not really. But when it did start to hurt it really really fucking hurt. Looking back now I will admit that I was having stomach pains for years. But they were never anything more than a mild pain. You wouldn’t go to the doctor every time you have a stomach ache. You never think that it could be something serious. Ovarian cysts on their own don’t cause pain. If they twist it can be extremely painful but normally they are painless.

How did it feel after surgery?

The actual statement was “Holy shit, that woman must have felt AMAZING shortly after her surgery.” but I turned it into a question. Either way no it was not amazing. It was the total opposite of amazing. After coming out of surgery I was on so many pain killers and antibiotics that it took me 18 hours (no joke) to realise that I couldn’t feel my legs (turns out I could feel my legs they just felt extra heavy from the compression devices on them).

I went from not being able to feel my legs to being in large amounts of pain. I couldn’t cough, sneeze or laugh. I needed help just walking to the toilet, getting dressed wasn’t fun. For 5 days after the surgery I threw up almost everything I ate. Adding that to the 3 days before surgery, I didn’t eat properly for over a week. In two weeks I lost 50lbs. I went from 224 to just over 180. As a way of losing weight it was horrible. Like 0/10. Would not recommend. It took me over 3 months to get better. The CFS really didn’t help, it is now a year and a half later and I still don’t have as much energy as I did before surgery.

If you want to read more about my experience check out My Ovarian Cyst Story.

The one thing I’ve learned from all this is if you’re having lady problems get it checked out. It might be nothing or it might be your ovaries growing a little present. It might even be something else. Either way get it checked. If you have any more questions feel free to ask in the comments. Just remember that I am not a doctor and will probably give you terrible medical advice like “tea can fix a broken leg“.

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On Being Tired

I first learned about ME when I was 10. I didn’t know much about the illness but I knew enough that I though it would be a fun thing to have. I mean any illness that gets you time off school must be good right?

As it turns out ME or CFS or SEID or whatever you want to call it is not fun. It is rather boring. In fact it is mind numbingly boring. Yes, you would think being tired all the time is great fun. I mean it gets you away from all those boring adult responsibilities like work and school. But instead you’re stuck at home every day.

Soon the highlight of your day is whatever is on the television or what you’re going to eat next. You get up have some breakfast then spend the next 4 hours thinking about what you’re going to have for lunch. Then you spend the rest of the day thinking about what you’re going to have for dinner and before you know it the day is over, time for bed and the cycle to start again tomorrow.

The way to stay sane while having CFS/ME is by finding hobbies that keep the boredom at bay. I have a couple (you may be able to guess them) painting, reading and blogging. The thing is these hobbies require you to be at a certain level of awakeness where you can actually focus on the thing you’re doing.

I don’t blog because I want to be some famous blogger. I don’t post 3 or 4 times a week because I read somewhere that it was a good way to get views. Blogging literally keeps me sane. I have no doubt that I would have gone mad with boredom a long time ago if I didn’t have this blog.

But there are some times when I can’t write. And they drive me insane. Because those times I am at a level of tiredness where I can get out of bed but I can’t focus on anything. I hate those times. I have so many things I want to write about but can’t because I’m too tired. I’ve even tried to think of ways to get around it, maybe even get a friend to ghost write a post for me. But then you loose all the fun of blogging. I enjoy it because I do all the work.

Sometimes I wonder what my 10 year old self would have thought about this whole CFS thing. I think she would have loved it. I mean time off school and nothing to do all day but read, yeah she would have loved it. But she didn’t understand the realities of living with CFS and I think there are many people out there like her. And that’s okay.

TL;DR I was tired so instead of writing a blog post I wrote a blog post about how I couldn’t write a blog post because I was tired.

On Being Tired | bluchickenninja.com

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