I know on here I talk about ME/CFS a lot and the impact it has on the individuals that have it and the wider circle of their friends and family. But today I want to give an honest account of a big events day typical in the life of ME. It’s ME Awareness Week and I wanted to do something for it that wasn’t just giving facts and calling for my voice to be heard. First for those who don’t know about ME here is some more info which might explain things before you read on.
It is my wonderful Sister’s Hen Party. This is one of those only-going-to-happen-once type events in life. My general consensus on days like this is to say “screw it” and I will pay for it dearly for the next few weeks. I hold my crumbling self together all the way through the event until I can at home be a mess hurt and be rather unwell. Whilst I try to promote balance and being careful with your health even I will say sometimes through the desperation to have a ‘normal’ experience or to actually be in the photos of family history I push too far. So I’m going to take you through the whole day in terms of what I felt like what was happening and how I tried to conceal it and cope to the best of my ability.
THE BIG DAY – that was the first thought I had when I woke up and realised today was the day of being a hen. I did the general assessment of symptoms as you do just before I got out of bed. “Not too tired, good that’s good (okay Baloo you may have been right about the early night) Soreness okay so today we are working with soreness in my tummy, hips, head, ankles, lower back and knees. Hhmmm not ideal but we can work with that. Nausea levels? I’d say a 4/10, not too bad.” I check my phone for the time. Great. Just Fab. It’s 7:30 am a whole hour and a half earlier than when I usually am woken. I’m anxious that much I can tell you. I don’t mix with people my age and besides the bridesmaids, I only know my family members that are going. I’m not at my best healthwise and there may have been an emergency online shopping experience to get my outfit together (Read more). Thank goodness it came in time.
I take my various pills and get out of bed. To make myself pretty I take the early morning time and paint my nails hot pink to make myself feel more polished. Apologies for the unintentional pun but you are reading my inner thoughts right now. I find it quite hard to have hand-eye coordination and I regularly miss half my nails when painting them so its a messy affair. But I complete my task have some breakfast and do some last minute checks of the list of stuff I need to take to this hen party.
Baloo is awake so I go up and say good morning to him. I’ve been sleeping in the study as he has been staying so he can attend to the stag do. I’m trying to work out where all the parts of my outfit are. Jeans and blazer in the wardrobe, pink new top??? Right, downstairs in the delivery bag. “What shoes am I wearing??” Ugh, I’ll work that out later.
Then it’s time to say hello to my aunt who has just arrived. I’m trying to save energy so the effort I’ve put in is to brush my teeth. I’m getting nervous for tonight as I’m feeling bone achingly tired. The internal thoughts are like this. “How can I rest until we have to leave? What am I going to do with my hair as it needs to be out of my way? Are my jeans going to be bearable? Is my smell sensitivity going to kick in? I’m eating much much later tonight, have I made enough concessions to get through it all? What if people try and talk to me if I’m zoned out?”
I try to rest and take it slow as the men go off to the Stag Do. I try to pace and pace myself. I start to slowly get ready and the side of my tummy pinches as I get ready. My aches are being catalogued on autopilot.
Before I know it I’m feeling the pressure to be ready to go on time and the evening is creeping in slowly. Thankfully, I am ready but in all honesty, I’m ready to go back to bed. I get in the car and I barely talk to my sister on the way there to save energy. I’m a ball of nervous energy trying to stay calm and not panic. Panicking will just waste energy. I try to reassure myself it’s all ok.
We go to one of the lovely bridesmaid’s house for cupcakes and I’m nervous more so now as we’ve started the evening. Vain as it is I feel like I judged my outfit right and the other bridesmaids are lovely to me. I am getting Mother Hens clucking around me telling me to sit down and they will put sprinkles on my cupcakes. Asking all well-meaning questions. In this scenario, I tend to go on autopilot of making through it almost by myself. It takes a lot of energy to absorb the questions and formulate responses. “I’m okay, I promise” is always a good one to use.
We get to the venue where we will be putting fresh facemasks on and doing some shopping. My first thought is to be a sheep and stick to my heard so I don’t have to approach the new people I don’t know. In my head, I’m trying to assess whether the tasks of putting a face mask on my wonderful aunt it doable. I think it’s manageable and I know she won’t mind if she has to sort her own face out if the worst comes to the worst. Anxious minds like something to do so I go through the steps.
I relax into the evening and have a good time. As part of the hen do we are given some spending money in the shop to buy products. I can’t make the choices at all. My brain shuts down and my Mum takes over. I’m so relieved I could cry. It’s nearing when I normally go to bed and I haven’t eaten yet. I can feel everything getting more and more distant. My body is shutting down in exhaustion. I think I can manage the meal now but I’m not sure what is going on. I feel like I enter a bubble, everything is distant and muffled but the pain and symptoms are amplified.
I’m wheeled to the restaurant and I have to coach myself to choose a drink and remember which one it is. I repeat it over and over in my head after telling my Mum what I want to drink. Thank goodness everything else has been preordered. After getting my drink everything becomes a little fuzzy. I ate some of my main meal but I couldn’t taste it or stop myself from feeling sick to my stomach. The noise is overwhelming and it feels comically loud in my head ringing around and around. I remember saying “I can’t stay here anymore. Home please.”
Then I’m outside cold and beyond upset to A) not having the desert I’ve been looking forward to and B) dragging another two people out of the Hen Party. I apologise on loop, feeling every symptom strengthen in power as my body goes into beyond recovery mode. I find myself crying without knowing about it. I’m helped into the car and my joints feel stuffed with glass and icy lava. Yes, that makes no sense but that’s how it feels. I felt nausea and the overwhelming tiredness ringing in my head. The lights from the cars around us feel like lasers to my eyes.
Somehow we are home. I’m helped out of the car and due to the smell of all the natural if not overwhelming scents in the shop we did facemasks I need a bath otherwise I will be sick. Getting in was pure agony but the warm water soothes some of my aching joints. My spine is now involved, it feels like someone has put a corset on my ribs and is now trying to yank my spine out of my skin. Baths help me but there won’t be any relief tonight. Breathing hurts and my fingers and toes ache. I just want to go to bed but nausea means that I need to sit up. I sip on Ginger beer which helps settle my tummy. It’s time to get out of the bath and I’m dreading the pain that comes with it. It makes me shout aloud. I have to still crouched over just to stop the room turning black and to give me chance to breathe through the pain that is in places I didn’t know could hurt before.
Baloo arrives home just as I’m about to get dressed in my pyjamas. It’s more than a team effort, my Mum and Aunt working together to clear the room ( My room Baloo is staying in) and the bed plus help me dress. That is what I’m reduced to talking in half sentences, pointing, crying and not knowing how to make it through the next hour, to be helped to stand, sit and dress. I walk like an elderly relative shuffling along as painful to watch as it is to move.
I sit on the sofa after the epic journey downstairs. Stairs are my nemesis right now something about the movement makes it sickening because of the acute pain in my joints muscles and sometimes skin. Too tired to get to the study which was all of about 10 steps away. Baloo cuddles me making me warmer as I’m freezing and still unable to talk like a normal person. It’s a mixture of sentences you need to decode pointing and keywords. The pain is intolerable yet there is no getting away from it.
Sleep is the only salvation at this point. Baloo helps me to bed and we try to chat about our days at the hen and stag parties respectively. Then it’s time for me to sleep. I know I am lucky to be able to sleep relatively easy for someone with ME/CFS but I know I will wake when I need to turn over. Tomorrow will be a strange day, you never know how it will be. Sometimes the delay in ‘payback’ will make it a slow day and sometimes I will struggle out of bed to promptly get back into bed. The bottom line is I will be feeling rather disgusting for weeks, long after the hangovers the other girls may or may not have suffered.
That is the day I led that day. What I don’t talk about is the fact that I know that it’s hard for my family that I can’t be there and every occasion is tinged with sadness. My sister didn’t have her sister there to watch her celebrate the end of her single days. She didn’t have someone to drink cocktails with and end up in a speakeasy with. She had to say goodbye prematurely to not only myself but our Mum and Aunt.
This misunderstood life-changing illness isn’t just about me. I am the epicentre of the destruction. My family, my doctors, my friends are all affected. They grieve for me like I do, they carry the weight of the uncertainty and cruelness of the world when you are chronically ill with them. Their lives remain changed forever.
ME Awareness I feel is brought to life with our stories, I can sit here and tell you that 17 million people worldwide are affected. Or that in the UK 1 in 10 has ME/CFS and that’s based on people diagnosed with many people never getting that diagnosis. It is one of the last medical mysteries that is horrifically underfunded and people aren’t aware of. I’m one of the millions missing and that is something that doesn’t make me feel less alone. I have fought for nearly a decade to access education, correct medical help etc.
However, I’m one of the lucky ones. I have had that diagnosis and quite early in my journey, I have had people believe that I am rather seriously unwell. Those two facts cannot be taken for granted as some in the medical world choose to say “It does not exist and it is all in your head” I’m hoping by showing you all that one half of a day took out of me and made me feel that it might show one of the many people behind ME.
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