What I mean when I say I don’t have the energy

It’s not that I’m Hungover or can nap it away. Its likely that I woke up, got dizzy and had to drop to the floor with weakness. It might be because I didn’t sleep at all or am running on 2 hours light sleep. 

If I don’t have the energy to lift my hand to brush my hair because there is no energy in my cells it’s unlikely I will make it to that thing we were going to do. And I’m truly sorry.  I’m wretched with guilt for letting you down again. Believe me I want to be a better friend, sister, daughter, teacher, and colleague. 

It’s not being able to exercise like I used to, hike, boxing, weights, dance, crossfit, the list goes on. It’s because I never enter deep sleep my body never repairs fully.  It’s stretching on my yoga mat at 4am in the morning because the pain and spasms and burning radiate through me, keeping my mind awake and distressed. It’s because I have to think out every step of an activity and make sure I’m safe, have a way home if I power down, and I do not want to cause a scene or be ‘that person looking for attention because I have to mention the word illness or at a meal be the one that I can’t eat gluten, dairy, sugar, caffeine and alcohol; that I can’t make it out tonight. 

It’s accepting I can never have kids as I struggle to keep a part time job and have to lay down in bed (still not sleeping) as much as possible to rebuild some energy for the next shift. It’s accepting the same for not being able to see myself in a relationship!  

It’s enjoying a coffee and a catch up with a friend or colouring in with my niece or a big family dinner that make a beautiful day and after just those little snippets of connection that feel like paradise that also wipe me out for the rest of the day. But are totally worth it to see your smile and hear your imagination; it makes my heart sing. 

It’s because sounds and lights are amplified a thousand times through this migraine that my brain fog makes it hard for me to hear what you say sometimes, while my stomach sends nauseous waves through me. And I feel inadequate because I see the look in your face, that I’m not taking in what you say but I’m trying hard to catch the words but it won’t go in fast enough and then I can’t recall words to continue a conversation so I rattle off safe words… “Really, wow, that’s amazing, well done, fair play” …the list goes on but it makes me look superficial and vacant and I hate it because I feel you more than I hear you but I’ve yet to master how to communicate that back. 

It’s not being able to control my body temperature, rattling cold on the inside and clammy on the outside that make me pack two seasons of clothes each day. It’s sleeping on an electric blanket, with two heaters on covered in fleece pyjamas and a hoodie with my teeth rattling that leave me too drained to make my prior commitments. And I hate looking like a flake. I do have consideration for you and I promise if I can I will. 

It’s trying to pace starting my business and accepting the one step forward and the two steps back. It’s feeling like I’m living Alanis Morissettes Ironic song. 

But M.E is also helping me to grow up and appreciate all the love and support I have in my life. My family are the most amazing people you could ever meet; they are pure love and compassion and they light up my world. It’s humbling to ask for so much assistance only to realise you were always there to help me. It’s the realisation I’ve pushed people away with my stubbornness and independence and that m.e. has brought you back with unconditional arms outstretched for me. 

That love continues when I take a stroll in the park and feel the trees share their strength with me. It’s slowing down long enough to realise there was never a race. And it’s letting the pain and the grief and regret in and holding it in my own loving embrace and sending back out that love and forgivenes to anyone else who feels it too. 

It’s seeing that the world is in pain everyday crying out for some balm and lighting a candle and wishing for it to find you quickly, take away your pain and bring you all the relief and happiness you deserve. 

It’s a wild ride, a curse and a blessing, the biggest learning curve I’ve ever meandered and I couldn’t do it without you. All of you. Thank you. 

For anyone else that’s living with an auto-immune or chronic illness, connect to other people who understand such as Chronic Pain Ireland and Fibro Ireland. I can guarantee lots of laughs and access to transformational and pain management workshops. Plus there is also the CIPC if you are on a medical card get referred to the counselling in primary care by your doctor to access this free counselling service to help you through your diagnosis. Or Village counselling in Tallaght also offer sliding scale rates and the Swan Centre in Fettercairn offer both counseling and massages by donation. Take care on your journey and be kind to yourself, you’re doing the best you can xoxo