30.9.16

The Realities of Someone With Chronic Fatigue Syndrome

chronic fatigue syndrome


I don’t really talk about it much on my blog, as I never know how to go about mentioning it without seeming like I’m ‘moaning’. Saying that, this is going to be one of my points. I always feel guilty that when I mention my CFS I’m going to be accused of moaning and being negative when that’s not the case. I just want to increase awareness for invisible and chronic illnesses like CFS, as not many people know what it is, and what the symptoms are. So, without further ado, I shall be bullet pointing the struggles and realities I go through on a day to day basis.

1. I feel guilty whenever I finally have the balls to admit I can’t do something, or go somewhere. If I cancel on friends, family or even small things like telling my boyfriend I can’t top up the meter as my legs feel like concrete, I immediately feel guilty and even start to get angry and upset at myself. Which in turn, probably makes my physical symptoms a hell of a lot worse.

2. People think I’m lying, or get pissed off at me when I cancel plans. I’m not even being all ‘woe is me’ here, it’s the truth. Now I do not mean these people are bad friends etc, as I can totally see from their point of view why they wouldn’t understand. But it’s just the truth. If I cancel last minute and say I’m too ill, the likelihood is they’re going to be annoyed, or think I’m making excuses. Especially when CFS is an invisible illness, so you can’t physically see that I’m poorly and in pain. Which, leads me on to my next point.

3. I make up excuses on a regular basis. I get bored of listening to myself saying “I’m too ill” over and over again, and fed up of the same reactions. SO, I’ve started to make up bizarre excuses, as I just can’t face saying “I’m too ill” again. Which, thinking about it, sounds so stupid and ridiculous. I should just admit I’m too ill and deal with the fact that people don’t understand, it’s just a fact of life.

4. Sometimes I just literally can’t get out of bed. Some days, it gets so bad that I can’t do simple tasks such as the washing up, tidying up, showering, food shopping or even watching TV/ texting. My muscles ache so much, and my joints and nerve pain can be so disabling, that I literally just have to lie in bed. The TV and my phone can give me a migraine, and any movement that’s too much on my joints can make me topple over. I’m not even being a drama queen here, the amount of times I’ve fell over or fainted is ridiculous. One of the only things that makes the pain a lil' bit better is Ibuprofren Gel, takes a while to kick in but even the cold gel soothes my muscles.

5. Even the doctors don’t believe me, and/or can’t do anything about it. As CFS is an invisible illness, there’s no way of proving how I feel. Apart from occasionally having inflamed joints and tachycardia, there’s no proof. It doesn’t show up on blood tests, or ECG’S, or on my blood pressure.  All they can do is give me meds for the pain, and tips on how to get better sleep and how to manage my physical activity. I mean, I thank them for trying and I understand they can’t do much for me, but it sucks.

   6. I have to pace myself with any activity. And I mean any activity. That means socialising, watching TV, playing a game, walking, running, shopping and even driving. If I socialise one day, I’m a recluse the next. If I go shopping for 2 hours, I’m bed bound the next. Probs TMI (but that’s what bloggings all about eh), but even any sexual activity knocks me out for a day or two. Basically, anything that requires energy, I have to pace myself and watch how much I do on a day to day basis.

   7. I take about 48620 tables. Ok, now THAT’s an exaggeration. But, I take about 5 vitamins a day, pain meds and my anti-depressants. Now, you probably think what’s anti-depressants got to do with CFS? Well, my sertraline in the morning gives me my energy for the day. If I didn’t have that, I would literally be a zombie. And my quetiapine of an evening helps me sleep. Again, if I didn’t have that, I would never be able to sleep. Before quetiapine I had insomnia, I’d have about 2 hours sleep a night, now at least with this medication, I can actually be a functioning human again!

Right, rant over. I hope that’s kind of educated peeps on what it’s like to have CFS. I mean, I could go on and on but my hands are hurting and ya know, don’t wanna bore you guys!



*Photo is a stock photo
*Post in collaboration with The Independent Pharmacy

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4 comments

  1. I believe every word. I suffer with fibromyalgia with fatigue and fog. Everyday I wonder how I can make people understand invisible illnesses are real and then I promptly forget. Oh the joy of the fog. Stay strong. Know there are a lot of people out there that can totally empathise with you even if those close to you can't.

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    Replies
    1. Ah no I'm sorry to hear that! Hopefully one day everyone will be able to understand invisible illnesses :)

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  2. Its not boring, and you should never feel ashamed to talk about how you feel! You are doing great lovely, very proud of everything you manage to achieve while battling this illness on a daily basis!

    Gemma xx

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