I just had to text a friend to arrange my visit to hers in the morning. I also just had to face the fact that CFS is actually debilitating. That it’s actually impacting on everything I do.
My text started out:
aiming to be round yours around 12 tomorrow…
Yep that sounds ok so far. But what about the rest:
However, atm it’s near impossible for me to wake up before 1pm most days. I WILL see you tomorrow though, no matter what time I wake up.
And then my realisation was the end;
It’s actually really … Debilitating atm tbh!
Kind of makes me sad; I’m almost 30 years of age, and whilst I feel ‘old’, I’m actually still very young (yes, it is a known fact, ‘very’ young!). But I can’t go out there and do what the majority of people do. I can’t hold down a job, because the fatigue is so debilitating at times that I can’t even drink my cup of tea ‘cos I don’t have the energy to. Despite the fact that I REALLY wanted that brew! Really pissed me off once I’d woken up properly, at shit o’clock in the after evening. My ‘wake up’ times don’t really have much flexibility. If I’m in a ‘flare’ of the CFS, then it is near impossible to wake me up once the fatigue hits. I think my mum, sister & fiancee can vouch for me on that one!
Tomorrow morning, I am ‘aiming’ to be up by around 9.30am. Gives me plenty of time to feed the zoo, have a nice cuppa, shower and get ready to go out at 12ish. Plan?! Maybe? I mean, I think that’s a very good idea and everything. But the problem is, how do I make sure I get up at 9.30? Because the only way anybody could wake me, is usually in person. And I rely on Bex for this a lot. Which brings tears to my eyes, because that, to me, explains somebody who is disabled by their illness? And that’s me?! 😟
So my plan for the morning. I have set 3 alarms, all 3 minutes apart. All 3 alarms have a 5 minute snooze, which means they’ll keep going every 5 mins until I turn it off. The logic being that I bombard myself with noise of alarms. And then I ask somebody (usually Bex, or my mum), to ring me too. Figuring that a change in the sounds would disturb me enough that I would answer the phone. This, you would think, means Bex or whoever is ringing me can have a conversation with me to help me wake up? Nope! Because, usually, I don’t even have the energy to speak. I feel so exhausted that I can’t move my mouth to match what I’m trying to say. And words don’t come out, but I still try. It’s a horrible feeling, I can hear that I’m just making noise and I physically can’t speak. And there are the mornings where Bex, mum, Rach have tried to ring me, mobile phone, landline, but I don’t hear a thing. And yes, it’s right next to me, and nope it’s definitely not been on silent. I’ve sometimes woke to 40-50 missed calls. Slept through every one of them and all my alarms.
When I do wake up, I can last a few hours, maybe 3-4 hours before I am exhausted again. I’ve never thought about this much until now as I’m writing.. When that fatigue hits me, I go into a bit of a panic. Especially if I’m out. And I feel like I’m against the clock in a rush to get home and get in bed. Why bed? Especially when it’s a lovely sunny day. Why not the garden? ‘Cos I am that exhausted and fatigued that I am struggling to keep my neck and head still. I can feel the muscles in my body, like they’re literally being drained by some outside force. This feeling falls down my body; starting with my neck. It feels so weak that I need to lean my head to give my neck a rest. Then the energy drains down the muscles towards the ground. My body tingles and my muscles feel so, starved? That’s the best word to describe the feeling actually, but I’m not sure if anyone else would understand with that word?? Have you ever felt that way? Interested to know actually, if you get what I mean by starved muscles 😂
Anyway, I had to write about this realisation. That right now, I am struggling physically, and it’s affecting me every day. And it’s good that I’ve realised just how debilitated I am sometimes, because I can start to get on with accepting it and adjusting to it.
What an arse! Nobody likes change! But it’s realising that changes need to be made that’s the hardest step. And I’ve done that one now 👍🏼😊