I've been struggling a little bit lately with a feeling that people don't understand what I mean when I say "I'm tired". So I'm going to attempt to explain what it is I feel.
My "awake" time
You know that feeling when you can barely keep your eyes open because you're so tired? Or when you've had a few late nights and get to Sunday afternoon and just have to have that nap?
That's me when I'm "awake". It's not always quite this bad, but at least half of my day is with that feeling.
So if that's me awake...what is my "tired"? This one is a bit harder to describe, but I'll give it a go...
My "tired" time
This is more the feeling you would get if you've pulled an all-niter, had a full day in the office where you've had to sit through numerous meetings and remember a whole list of facts and figures, then gone and run a marathon. Your body aches, your mind is mush, you can't process anything that is going on around you, you feel dizzy and downright exhausted. You get so anxious that if you don't go to sleep right now you're pretty sure you'll start to cry.
This is me when I'm tired. This usually hits me at about 9pm.
So if I say I'm tired, or if I bail early on a party (if I get to it at all), or if I suddenly shut off halfway through a rehearsal or dinner...this is why. This is how I feel.
Sunday, June 30, 2013
Tuesday, June 25, 2013
Next step in the journey
I'm about to embark in a new phase of attempted recovery and CFS treatment. My naturopath has set me up with an appointment with her work colleague who in actual fact treated her CFS a few years ago.
The purpose of me seeing this other naturopath is for him to help me put together a low carb, high protein diet as well as try out some acupuncture and hypnotherapy treatments. The hypnotherapy is designed to help me to open up a pathway in my mind to allow me to get to the finish line where I am healthy again.
At this stage I'm both skeptical and curious about the hypnotherapy. I don't know enough about it to really understand how it works. I guess my next step is to do some reading up on it and work out what questions I will need to ask next week at my initial consultation.
The purpose of me seeing this other naturopath is for him to help me put together a low carb, high protein diet as well as try out some acupuncture and hypnotherapy treatments. The hypnotherapy is designed to help me to open up a pathway in my mind to allow me to get to the finish line where I am healthy again.
At this stage I'm both skeptical and curious about the hypnotherapy. I don't know enough about it to really understand how it works. I guess my next step is to do some reading up on it and work out what questions I will need to ask next week at my initial consultation.
Monday, June 24, 2013
The fog has lifted
Last week I went on holidays. It is the first real break I've had in a couple of years. Whilst I've had annual leave and time off work over Christmas/New Year, I've generally had homework to do. This was the first time I've been able to actually shut off my mind.
In the past month or so I've been struggling a lot with "brain fog" and sensory overload. Between work, the illness, public transport annoyances, rehearsals, family, friends, boyfriend and pets I've had no quiet space left in my head. Even meditation music has had me on edge. I was at breaking point. My planned holiday could not have come sooner.
Finally, I was at the beach!
No work, no public transport, no rehearsals, no family, no friends and no pets. Just me and my boyfriend in a quiet resort on the beach.
Whilst I still had my illness with me, I at least had peace from everything else in my life. As a result, the fog has lifted and I no longer feel my senses are overloaded. Somehow, it has made me feel lighter.
However, I did dread returning to work yesterday. It wasn't the thought of going back to work that I dreaded...it was the thought of stepping back into the real world where my illness resides and slowly takes over me. I still carry with me the fear of how the illness leaves me feeling. With 6 months until the Christmas break, I worry about how I'll make it through this next stretch.
In the past month or so I've been struggling a lot with "brain fog" and sensory overload. Between work, the illness, public transport annoyances, rehearsals, family, friends, boyfriend and pets I've had no quiet space left in my head. Even meditation music has had me on edge. I was at breaking point. My planned holiday could not have come sooner.
Finally, I was at the beach!
No work, no public transport, no rehearsals, no family, no friends and no pets. Just me and my boyfriend in a quiet resort on the beach.
Whilst I still had my illness with me, I at least had peace from everything else in my life. As a result, the fog has lifted and I no longer feel my senses are overloaded. Somehow, it has made me feel lighter.
However, I did dread returning to work yesterday. It wasn't the thought of going back to work that I dreaded...it was the thought of stepping back into the real world where my illness resides and slowly takes over me. I still carry with me the fear of how the illness leaves me feeling. With 6 months until the Christmas break, I worry about how I'll make it through this next stretch.
Friday, May 24, 2013
"I'm so tired, that my tired is tired"
This past week has been quite full on. I was very nervous going into it. Late nights, early mornings, eating on the run, different cities and tight deadlines do not make for an ideal situation for me. But, I got through it. I am amazed that I made it through to 5pm yesterday.
As part of my condition, my blood sugar levels are not great. This means I need to eat regular meals in order to save myself from completely crashing. Unfortunately, this week I was forced to have a combined lunch/dinner at about 3pm and hope for some form of snack to be made available at 7.15pm. The only meal I regularly got was breakfast, which, as someone who's gluten intolerant, this is not an easy meal to fill up on or even get. So making it through to the end of the work week on very little food was in itself a huge achievement.
Next was the late nights and early mornings. Thursday/Friday was the worst. We finished work at 9.15pm and had to set our alarms for around 4.50am in order to be able to get up in time to get our flight back to Melbourne from Brisbane. Upon arriving in Melbourne I had about 1.5hours to finish off some work in the office, then it was off to a client meeting (over lunch time so again no food). As soon as the meeting was over, it was onto a train and back home - the whole time I continued to work until around 5pm.
As soon as I sent off my last email my body and brain stopped. There was no getting going again. I'd completely worn myself out and my body and brain finished up their duty for the week.
Now, I face the challenge of finishing off an essay. My mind is mush, my eyes are droopy and not a god-damned thing I'm reading is making any sense.
I've crashed!
As part of my condition, my blood sugar levels are not great. This means I need to eat regular meals in order to save myself from completely crashing. Unfortunately, this week I was forced to have a combined lunch/dinner at about 3pm and hope for some form of snack to be made available at 7.15pm. The only meal I regularly got was breakfast, which, as someone who's gluten intolerant, this is not an easy meal to fill up on or even get. So making it through to the end of the work week on very little food was in itself a huge achievement.
Next was the late nights and early mornings. Thursday/Friday was the worst. We finished work at 9.15pm and had to set our alarms for around 4.50am in order to be able to get up in time to get our flight back to Melbourne from Brisbane. Upon arriving in Melbourne I had about 1.5hours to finish off some work in the office, then it was off to a client meeting (over lunch time so again no food). As soon as the meeting was over, it was onto a train and back home - the whole time I continued to work until around 5pm.
As soon as I sent off my last email my body and brain stopped. There was no getting going again. I'd completely worn myself out and my body and brain finished up their duty for the week.
Now, I face the challenge of finishing off an essay. My mind is mush, my eyes are droopy and not a god-damned thing I'm reading is making any sense.
I've crashed!
Sunday, May 19, 2013
Saturday, May 18, 2013
The many symptoms
Whilst the name clearly indicates fatigue being a symptom, there are a multitude of symptoms that make up the disorder. Every sufferer battles with their own unique combination of symptoms. This is the main set of my unique list...
- Fatigue
- Headaches
- Light headed
- Itchy skin
- Sinus pain
- Nausea
- Chills/sweats
- Muscle/neck pain
- Heat/cold intolerant
- Lack of concentration
- Short term memory loss
- Shortness of breath
- Sensitivity to food
- Flushed face
- Hair loss
- Chest pains
- Cough
- Insomnia
- Disruptive sleep
- Unrestorative sleep
- Anxiety
- Depression
- Lowered immune system
So if you ever see me and I don't look so well...this list is probably why.
Friday, May 17, 2013
The beginning of awareness
This blog is more of a personal mapping of my journey with ME/CFS. Having ME/CFS I can't be sure that I'll blog regularly, but at least I'll have somewhere to go if I feel the need to write about my experiences.
I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.
ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.
Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.
So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.
I’ve recently been diagnosed with Myalgic Encephalomelitis (or as it’s more commonly known, Chronic Fatigue Syndrome). Since the diagnosis I’ve faced a range of reactions from people. The most common response I’ve had is “Oh I reckon that’s what I have. I get really tired”. Whilst I don’t doubt that these people do get tired, it is disheartening to realise that so little is known about the syndrome that the general public just thinks it’s a matter of simply being tired. Considering the name of the syndrome, this is not surprising.
ME/CFS is in fact a multi-system disorder. In order to get a diagnosis, the patient needs to show a range of symptoms across the immune system, endocrine system, nervous system, digestive system, reproduction system and cardiovascular system. These symptoms vary from patient to patient with varying levels of severity. I personally exhibit around 25 symptoms, with most effecting me on a daily basis. And I’m one of the lucky ones with what would be considered a somewhat mild case. There are people with it who end up housebound or even bedbound from it. So despite the seemingly simple name, it is in fact, quite debilitating.
Over the 10 years of me having this disorder, I’ve lost a number of friends as a result of me being too sick to go out. Where people might see me as being lazy or anti-social, I am actually struggling to function on a basic day-to-day level, and trying to face the added symptoms and stresses that come from being up past my ideal 8.30pm bedtime.
So without harping on about all my symptoms and struggles, I just want to help spread some awareness around ME/CFS and hopefully get people to stop thinking of it as just being tired or lazy. May is awareness month. So this is my bit to help spread awareness and understanding about a disorder even the medical community are still grappling with.
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