Thursday, 6 March 2014

Chronic Fatigue Syndrome/ME - What is it?

Hi guys! 

Today I'm going to blog about something a little different. I wasn't planning on doing so, but I figured "why not?". I have it, I have to live with it along with millions of other people and at the end of the day, it's not exactly a "talked about" illness, therefore not many people have heard of it. I'll be honest, I didn't even know what it was before I was diagnosed with it and I've only recently been doing enough research on it, to fully understand what it is.

Overview - What the internet says.

Chronic Fatigue Syndrome, also known as ME causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.
It is estimated that around 250,000 people in the UK have CFS. Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15. 
Depending on how severe the illness is for you, you could going through 1 of 3 stages. The first being Mild: You are able to care for yourself, but may need time of work to rest. The second being Moderate: You may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep during the day. Lastly, there's Severe: Those with Severe CFS/ME will not be able to carry out daily tasks such as brushing your teeth or washing yourself, you may have reduced mobility and have difficulty concentrating. 

I won't say that I disagree with what the internet says, but due to my personal experience and reading other people's experiences CFS/ME is so much more than 'not being arsed to do anything'. 
I would say that I'm in the Mild stage of CFS, but although I can take care of myself, I sometimes can find it difficult to carry out daily tasks that seem so easy for "normal" people to do. 

Symptoms - I explain what it's like.
  • Fatigue - This is the known as the main symptom of CFS. I have always struggled with sleeping problems, I find myself going through phases of going to sleep at around 7pm and waking up at 5am and other times I find myself sleeping at 6am till 6pm. Other times, I can go to sleep really early, and be asleep for up to 16 hours straight. All I know is that one night is never the same as another one. Not only is it the sleeping that I struggle with, but the constant feeling of never being motivated or having energy. (I walk up the stairs, and by the time I get to the top... I'm gasping for air). I have to cancel most activities and/or days out because I'm just not feeling up to it. People without CFS can easily sleep it off, yet those with CFS will always feel tired. 
  • Muscular Pain, Joint Pain and Severe Headaches - I find that the Muscle & Joint pain is like (as my mum used to call them) "growing pains". Up until I was diagnosed, that's what I thought that they were. It's a weird feeling, and it's painful. I feel as though I want to snap my arm backwards, or at least snap it off. The headaches are the worst for me; I have a headache at least once a day. Sometimes they are bad, but sometimes they're bearable. Painkillers don't really do anything for them either. 
  • Poor short term memory, concentration and finding the right words (brain fog) - It's literally only recently that I've had these symptoms, first I noticed that my concentration was low. I'll give you an example; Let's say that I had £1 in my hand but in 20p's and 10p's. I could count them a million times and deep down I know that it makes up £1 but there's still something in my head that's telling me that it isn't £1... and so I have to keep on counting, it can be so bad that I have to ask other people to count it for me. Short term memory - now this is really irritating. I read a sentence, and by time I've read the second sentence, I've already forget the first sentence. Brain fog - this is annoying too haha. I feel like I'm drunk all the time, not being able to speak properly. 
  • Painful lymph nodes - I only have this when I'm ill, so I guess like everyone else?
  • Stomach pain and other problems similar to irritable bowel syndrome - I have IBS anyway, but I do have the weirdest stomach pains. I always thought it was my appendix until I realized that it was on the opposite side haha! (dumb me). Anyway, it feels like there's something moving inside of me... It hurts so bad that one time, my boyfriend had to take me to hospital. 
  • Sore throat - I wake up with a sore throat every day. It's bearable though. 
  • Sleeping problems such as insomnia, and feeling that sleep is not refreshing - I have this - Already spoke it up top :) 
  • Sensitivity to light, loud noise, alcohol and certain foods - the only thing I struggle with here is alcohol which sucks because I'm 18 and should be out getting drunk every other weekend! The pain I feel in my muscles/joints & bones the day after is unbearable, it's just not worth it. 
  • Psychological difficulties such as; Depression, Irritability and Panic Attacks - I've always had Depression, well for as long as I can remember. Panic attacks I'm not sure, I think I've had about 2-3 in my whole life. I have anxiety attacks but I'm sure they're different things? I dunno. 
  • Dizziness - Yes I get this - horrible feeling. Always happens when I stand up or when I've been in hot shower/bath. Makes me want to faint tbf. 
  • Excess sweating - Luckily I don't suffer with this, I think it'd drive me insanely mad. 
  • Balance problems - Yes, I'm rubbish at balancing. I used to be quite good too! 
  • Difficulty controlling body temp - As far as I'm aware I don't suffer with this. I just have a really hot house lol. 
Symptoms I have but aren't mentioned above
  • Always hungry.
  • Weight loss, weight gain, or trouble maintaining weight. 
  • Mouth problems; sores, irritations, dry mouth, thrush.
  • Hair loss.
  • Muscle spasms, restlessness or itchiness.
  • Depression/Anxiety (I have these anyway)

Try and imagine what it's like for us. Imagine being in bed for weeks/months with the worst flu you've ever had. Imagine your muscles feeling so empty, that maybe you can't swing your legs over the side of bed to get out, let alone actually walk. Your muscles haven't even got the energy to hold a book to your face, to read... but then you've got such an excruciating headache that you can't read anyway, and even if you could read, you wouldn't be able to take in more than one sentence at a time because you've lost your concentration. You can't bear to have the light on, or the TV. It's a bit like a migraine... You have to sit in the dark. You feel sick but actually being sick is a no go. You're constantly thinking to yourself that you don't know how it's physically possible to feel so ill and still be alive. 
You walk up one flight of stairs, and your heart is pounding like you've just run a 10 mile marathon. You have to stand still at the top of the staircase for a moment and hold on because you feel dizzy, sick and might be about to faint. You walk into things, you can't remember what someone just said to you, and all you can do is the most basic things in order to survive... if you're lucky. You hate being stuck inside the same four walls of your home; you can't even just pop to the shops. Maybe on a better day - You can do a bit more, but you still don't feel well. You still feel ill. You have to depend totally on other people. Even if you do manage to go out, it has consequences because then you'll be confined to your bed for the next few days or have pain in your muscles/joints for days on end. You wake up every day with a sore throat and flu-like symptoms. You aren't sure if it's another flu or if it's just your CFS/ME. 

Some people might not be that badly affected, but it does happen. Life's are changed drastically. Carrying on with work or education can be seriously disrupted or sometimes impossible. Social life and family life can become restricted, and in some cases severely strained. People may be housebound or confined to their bed for months or years. Weather changes (I have this) - depending on my illness, depends on the weather. I've noticed that if it's dull outside, if it's raining and it's cold & miserable... then I'm going to be having a bad day meaning I won't be getting out of bed, or eating that day. But if it's sunny outside, warm in the air then it's usually a good day. I can go out for hours on end but then I don't end up sleeping that night. Those days when it's really really hot outside (eg. last summer)... can be tough. When you really want to go out, but just can't do it. So you end up missing the whole day due to sleep. 
Chronic fatigue syndrome/ME is far more than having fatigue. Saying that CFS/ME is just feeling overly tired is like saying Alzheimer's disease is just someone who's a bit forgetful. 

This illness can affect every part of someone's life; Breathing, talking, walking, eating and thinking. When you get too tired - you'll finally just "snap". You'll feel really frustrated and angry for no reason at all.