CFS and Illnesses

Wahoooo the joys.

Going to try and keep this one short and snappy because I am off out for some much needed retail therapy and lunch treats with a friend.

I ended up having CFS because I had meningitis when I was 17, and my immune system hasn’t fully recovered since. Which is very bloody inconvenient because if I didn’t already suffer enough… holy cow I get everything thats going around.

Within a month I had 3 very unpleasant kidney infections (I blame drinking too much in Ibiza), that means I was on antibiotics for around 4 weeks. That cleared up, but now there might be an underlying cause… ULTRASOUND ON MY KIDNEYS SOON.

So although my infections have cleared up I am still in pain with my kidneys. Is what it is, over it, I’ll plod on as I do. HOWEVER, a few days after I finished the third course of antibiotics for my kidney infection HAHAHAH I GOT TONSILLITIS… more antibiotics.

Obviously, taking tablets for a long period of time isn’t good for your kidneys in the first place, but mine feel like they are pretty much destroyed anyway. But anytime I take antibiotics or painkillers OUCH x10000. I ended up in a&e the other day because after taking tablets I was curled into a ball screaming for my mum, I felt like someone was trying to rip my insides apart and push them out.

Lastly, anytime I get an infection or illnesses I obviously get the symptoms of whatever I’ve managed to flippin pick up. HEHE BUT I ALSO GET CFS SYMPTOMS 10000X WORSE. I feel like my body is just attacking itself and giving up on me daily.

Overall, I just feel like I’ve physically been hit with a tonne of bricks over and over again for the last 4 or so years pretty much. And I’ve come to the conclusion that I did something very bad in my previous life so god hates me. But god, if you’re reading this I am really a nice person, promise. Soz work you’ll have to bare with me I’m just not normal.

I am back.

Posting some years later after starting this blog. The reason I wrote about CFS when I was nineteen was because I was really struggling to get my family and peers to understand the daily physical struggles I endure.

Two years later at 21, I find myself in the same position, with many new friends and colleagues which don’t understand my condition. Not understanding is absolutely fine, I would not expect anybody to fully recognise the way I feel. Christ, I would not want anybody to know what this is like! However, I feel much of the time I am perceived in a negative way which really plays about with my mental health.

FRIENDS

As amazing as all of my friends are, CFS is almost like a hidden disability and as much as I would love to go out and get absolutely ‘steamboated’ I have to think behind and ahead..

Behind

• What symptoms have I had this past week which might worsen if I go out?
• Am I currently on antibiotics which would make me more ill to drink on?

Ahead

• What shifts am I working this week, and will I recover from both a hangover and CFS symptoms by then?
• Am I at uni, what essays have I got to work on etc. am I going to be feeling cognitively well enough to sit and work?

 

There are many more points I could make, but it’s not all about going out on the piss.

• NO I don’t always feel 100% to go and exercise with you
• NO I don’t feel like driving a far way to do something
• NO I don’t feel well in myself to go shopping in crowds
• NO I feel really low today I just want to be by myself
• NO I feel really ill today I just want to sleep it off
• YES I would love to see you all the time but unfortunately my body and mind doesn’t work like yours does

I could go on and on, and ask you to understand. But the truth is you’ll only begin to understand if you are willing to get to know me and my condition really well.

WORK

Damn, I love my job. I’m quite sad but its sociable, in a good environment and I enjoy working with my colleagues. One downfall is being around food a lot makes me quite hangry and heavy on the hips and thighs! But one major thing that plays on my mind with work is that I often find cover or call in sick on my bad days, and it makes me feel really guilty. If the guilt wasn’t enough, imagine what it’s like constantly wondering what your colleagues think about you.

Often, when I’m ill I will still do things to boost up my morale and make me feel mentally happier, I know much of the time my physical symptoms won’t go away any time soon so I try to work on my mentality. I do not like being cooped up in the house all the time, I like to see my friends, or show my face somewhere so that when I do go home to rest I am not sat in bed feeling isolated and secluded.

A quick nip down the avenue for a cuppa with a friend will keep me going while I am ill, I will cling onto the outing for the remaining time that I spend in the house ill. Socialising  and getting out of the house is one thing that is perceived as bad when I’ve not made it to a shift. But it is also one of the major things that keeps my head up when much of the time its down.

 

What is CFS/ME?

CFS/ME.. Well, CFS stands for Chronic Fatigue Syndrome. This is the easier name to remember so we will go with this one throughout the blog. ME however, stands for Myalgic Encephalomyelitis (I had to copy and paste that one).

CFS can affect anyone! But, it tends to affect mostly women between the ages of 20-40. I’m just an unlucky bugger who seems to have had it from a young age!

Hmm.. here i’m going to delight you with the lovely symptoms i face almost every day that i’ve pulled off the NHS website 🙂

• So the main symptom as you may have guessed… is fatigue, i’m not talking about being sleepy or tired, I’m talking about being absolutely DRAINED. I could have just woke up, and i’ll be fatigued. Sleep is un-refreshing, which is soo frustrating because nothing makes this fatigue go away. Except one thing, about a week in bed will make me feel slightly better, but what 19 year old has time for that?? That makes studying whilst holding down (a very low maintenance part time job) extremely hard. – Give me some credit for being able to write a blog, I may not feel up to posting most of the time.
• Muscle and Joint pain, ha. I feel like i have the flu, a lot. Majority of the time i feel like one big walking bruise, and that is literally from doing general every day things.. walking, driving, sleeping, breathing.. you catch my drift.
• HEADACHES – notice the capitals? I get these all the time! Not just headaches though, i suffer with pounding migraines, to the point where my eyes water, i can’t stand looking at light! They make me nauseous and dizzy, any time I stand up my head pounds!
• A sore throat or sore glands that aren’t swollen – I wake up almost every morning with a sore throat, most of the time it goes away after an hour or so, it doesn’t last long, but those occasional times it decides it wants to stay, it hurts to swallow, and that means i can’t do one of my fav things which is to eat:((
• Problems thinking, remembering or concentrating – this doesn’t affect me much unless my fatigue is really bad, i like to think I’m quite focused, although plonk something glittery in front of me and my whole undivided attention is yours.
• Flu like symptoms – so as previously mentioned i feel like a have some sort of flu most of the time. That doesn’t mean I’m constantly aching, but i also get cold-like symptoms too. I get a runny nose, yummy i know. I get a cough quite a lot, i get quite bad abdominal pain and belly aches! And feel sick/nauseous. When i’m extremely fatigued i do sometimes get a fever and chills.
• Feeling dizzy or sick – about 60% of the time
• Fast or irregular heartbeats / heart palpitations – Try not being able to go to sleep when you’re extremely fatigued because your heart is quite literally jumping out of your chest like you’ve drank gallons of red bull. This happens quite a lot – i do get anxiety a fair amount anyway so any time in a public place where my heart starts beating really fast well – you got yourself a little disaster right there – i am quite good at calming myself down now though, and i keep off the caffeine which helps!

I find that exercising makes my symptoms a lot worse – i love going to the gym, going swimming, playing badminton etc but I’m not able to do that because a few hours later, or a few days later i will be really ill!

“The severity of symptoms can vary from day to day, or even within a day.” – I couldn’t agree with this more, one minute i could feel like complete crap, the next i have a blast of energy and I’m completely motivated to tidy my room or start a blog!