My Battle With Chronic Fatigue And How I Cope

What is Chronic Fatigue?

Chronic Fatigue causes Persistent fatigue (exhaustion) Not to be confused with CFS (or ME as it’s more commonly known). CF affects everyday life for some of us and it doesn’t go away with sleep or rest. My battle with chronic fatigue always impacts my life daily.

Chronic fatigue is a pretty serious issue and impacts life daily for those who have auto-immune illnesses such as IBD.

My Battle with Chronic Fatigue

I never quite know when the fatigue is going to hit me. I can have a run of a week, maybe two weeks and feel ok and then just get hit by the brick wall that is Chronic Fatigue.

It’s been a struggle the last 13 years with being constantly tired and losing any gumption to complete everyday tasks when I’m having a bad week or month, due to these ongoing symptoms.

The tired face of a Crohnie

The tired face of a crohnie that got up 3 times in the night to empty Bertha.

My way of describing this would be the lights are on but my body is in control and not me, My brain still works but my body doesn’t want to play ball.  When simple things like eating or taking a shower tire me out all I want to do is go back to bed. Or the fact my brain feels fuzzy and I can’t get the correct words out in general conversation, or the fact I get confused and have to write down simple things and keep a calendar to hand for important dates or meetings so I don’t forget things.

I also have a tendency to lose my temper after the 4th or 5th night of next to no sleep. So I apologise profusely to the two that live with me as I can get pretty short in general with my responses and general attitude.

Constant fatigue isn’t just lack of sleep it’s a constantly feeling of overwhelming tiredness that doesn’t just go away after a few good nights sleep. I have those nights when I’m beyond exhausted but the medication you’re taking doesn’t let you sleep because my brain gives me the proverbial middle finger and sits there laughing at me.

It is easier for me to give you a diary entry for the worst days to put it into perspective for you rather than give clinical words and explanations as seeing it is easier than explaining it in general conversation.

Monday

I’ve had 9 hours of bedtime along with interrupted sleep due to emptying my stoma twice in the night. I honestly don’t want to get out of bed and adult because I ache all over and my brain in not switched on. I have work to do and blogs to post so need to force myself up, Have a shake it off to music and muster on through the day.  I manage a trek to Sainsbury’s with my photographic list on my phone so I don’t forget anything. I also have school runs and have to take my daughter to gymnastics this afternoon, even now as I’m writing this I’m fighting to keep my eyes open and brain functioning. So I have a video call I need to do this evening so hoping my body doesn’t conk out at the crucial hour.

Tuesday

So today I struggled to get some admin done but managed before crashing out for 2-3 hours before the school run. I still didn’t sleep a full night thanks to Bertha (my stoma) and woke up once to empty at about 5 am and I could hear the birdies tweeting.

Wednesday

Working at home in bed

Working at home in bed

I’ll be honest my body wouldn’t switch off at all,  I finally feel asleep at 2 am and was back up at 6:45 am. A mummy has to do the school run. I get back home and pretty much don’t move off of the sofa apart from to empty my bag. The constant tiredness has got to me today and I have a cry to myself as all I want to do is sleep, But I have work and admin to do. So yes the laptop has been glued to my lap all day.

I will muddle through the rest of the week and keep on going until the weekend where I will probably sleep a good part of the afternoon or the day away because my boyfriend is home to watch my daughter.

Chronic Fatigue as a whole is a complete bugger, it always happen’s when I don’t want it too. I’ve had to cancel plans even though I really want to go. It’s affected my work life as well.

I have an Alarm set for 14:50 pm every day. I’ve been that fatigued I can crash out for hours at a time and being a single mum for a considerable amount of time everything is my responsibility and I don’t have many to rely on. It’s a running joke with my family over the what they call the wake-up alarm but I can’t ever miss the school run.

Chronic fatigue is difficult to explain and we all feel differently as to how it affects us.

Quotes from other spoonies as to how it feels to them

  • Colitistoostomy has said that it feels like I am carrying a full sized adult on my shoulders, all day every day. No amount of balanced diet, exercise or early nights gives me any relief. Even though it does occasionally help.
  • Wishes to remain Anonymous. It feels like I’m in a constant phase of feeling hungover. The feelings occasionally ease. During flares or after surgery is always worse for me.
  • Thespooniemummy. I would honestly say its the hardest symptom to deal with. I have an extremely high pain threshold (freakily so at times), but that’s harder to deal with when I’m constantly fatigued.
  • The Faulty Boweler. It’s like having the life sucked out of you. I feel ok one minute and then bang! I feel the energy draining away like the air being let out of a beach ball. After that, I just want to sleep but it’s not always possible so I fight on and the fatigue gives a good fight back. It’s hard. And to tell your family or friends that you are tired gets to the stage that you start thinking “do they think I’m making excuses?” I’m not, it’s true, I am genuinely knackered. And there is nothing I can do about it. Wish I could.

I’ve had a pretty shitty week, and writing this I realised it doesn’t have my usual positivity on it but it still, retains the honesty of what is my life on a day to day basis.

The Chronic Fatigue is always in the background for me. It’s an Opportunistic little bastard and picks its moments at the worst possible times. I’m hoping that with the new treatment I’m on to get my Crohns into remission helps somewhat. However, I’ve found ways to push through the barrier at times and have listed these below.

 

5 top Tips that help me with the symptoms of fatigue

  • Diet – Eating the right things helps me in some ways
  • Exercise – I do this later in the day as I find the endorphins help perk me up
  • Music – I always have my Spotify on and my headphones plugged in
  • Dance – The best way for me is to sometimes just to try and dance it off
  • Naps – If I feel the need to nap then I do so. Don’t feel bad about it as it’s needed, I still have a guilt complex for this as I feel lazy ( the joys of working from home)

So this is how I try and make a positive out of always feeling fatigued.

Do any of you have top tips on how to deal with chronic fatigue? If so please comment in the box below.

 

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