When you get invited out of course you want to go.
Your mind shouts yes,yes,yes to plans but your body shouts 'hold up!'
Then you have the fun of the decision making.
Should I go or should I not?
The problem is there is no correct answer. Because whichever you choose to do you will most likely regret or feel bad about the decision you have made.
You can go with your mind and get yourself in the frame of mind for a good night ( which is what I normally do ). Missing out on so much already I try to do as much as I can when it comes to events & experiences. However you may start the night off well but then become to tire, feel off and hit a pain wall early on.
You can say no. Spending another night alone on the sofa watching telly that frankly isn't going in.
If you say yes then you could have a really enjoyable night and be pleased you went. You got yourself dressed up, saw your friends, had a laugh and smile. People won't see your pain or ill feelings because you have pulled yourself together. You will smile, laugh and make conversation through the pain. Though a lot of the time we crash and burn or become depressed with the pain that begins to overcome us. Tainting our experience for us.
We hate this.
On the other hand you could have sat in. And just sat alone like you do every night. Yes you don't have to put the brave face on or make an effort but you also miss out on the company and often the opportunity to see people you rarely see.
The decision alone can be extremely stressful before even getting to the point of going out.
It's always best to try and do shorter events and ones closer to home.
You can then come away if you really aren't coping or the time frame is overdoing it for you.
If you do suffer with Lyme - don't go to events that means you will be exposed to cold, wind or bright lights. Definitely not without aids.
The cold can often lead to illness or trigger further viruses to active.
The wind can trigger migraines and head pressure.
The lights can trigger eye sensitivity, sore eyes and headaches.
Increasing the pressure on your immune system and using up even more energy without you realising it.
Try to stick to events where you can be seated, in the warm, around company who are supportive & understand and short events.
We all know we can't hack the it whole day. 3 hours is a push.
After under going an event or experience not only has it taken you all day to get ready for it but the day after at least if not a couple of days after you will crash. You don't realise the fatigue caused by a simple 3 hours of socialising.
This is heartbreaking for us. Paying for living - what life is that?
Just remember our cinema trip or drink out is our equivalent to your 3 day festival .. that is the best way to put my fatigue and pain into words.
Yes, the above may seem crazy and you may feel it is me simply being over the top. Luckily for you and unfortunately for me I can't place you in my shoes for you to experience this for yourselves so then you could get your head around it.
Some events may not work in my favour - the pain may get too on top of me and I may have to leave early or seem the 'Debbie downer.' Not really talking or socialising and other times I may be giggling, smiling and chatting away. I don't wake up and ask for it to be a good or bad day. Boy, if I could I would pray for a good day everyday. I just have to deal and work with the current situation as best as I can and know how to.
I hope this helps you understand a little more, why I may be like I am. Why sometimes I cancel, leave early, zone out abit, want to stay a little longer etc.
One event I may be able to hack one day but it may be too much on another. Alternatively I often get so pumped up for an event that I am determined to have the best time I can possible and do but this then leaves me to seriously crash and burn quicker.
It's not a walk in the park and I am learning.
Everyday presents itself with new challenges. If there was a book you read to gain knowledge we would all want to read it to help us cope. But that's life - we learn through mistakes and experiences there are no textbooks that can give you this kind of knowledge.
So bare with me.
Your presence, organisation, support and understanding are what mean the world to me.
Is it bad that everyday I pray to wake up, No longer living this nightmare, All caught up, In pain and suffering I can hardly bare,
Is it wrong of me to smile and laugh falsely sometimes, Trying so hard to hold on to the person I used to be, I go over the top at times, Trying to allow myself to feel free,
What is she complaining about, It was just a bite, Drama queen no doubt, Trying to hold back my upset with all my might,
Behind closed doors when I don't have to hide the pain, The tears flow, Like heavy rain, So when I am infront of you my pain and sadness will not show,
Small events are like massive full on parties for me, So yes I will try and enjoy as much as I can, Trying to live as normal as can be, In my dream from my pain and weaknesses I ran,
Somehow it hits me hard, Day in and day out, The strength you can't disregard, My efforts please don't doubt,
I am trying to live a life I still have a hold, Not the life I hoped for, It is creating a masterpiece of a story that in time can be told, For now you may see me as a bore,
Coffee, quizzes, movies and rest time, So yes sometimes I want to feel numb, I know I should be in my prime, Though pain has me under its thumb,
What would you do if you were me? Sleep and hide away? Is that how you want life to be? Or think I should live my life that way?
I am far from the perfect person, Though try my best, We must cherish every moment like it's our last one,
Life really has given me one hell of a test,
When out with you all, I will aim to have fun, Trying to keep standing tall, From fear I can not run,
Somedays I may fail, I may break down and cry, The waves my boat cannot always sail, But don't doubt how much a do try,
Other days I may laugh until I cry, Act a little crazy, These are the best days I can't lie, Don't see my down days as lazy,
I may cancel or not stay long, This isn't really my choice or coming from me, Sometimes I have to be strong, Allowing and accepting the pain is simply too much for me,
The achievement to be here, The effort and energy to make it, Facing more than one fear, As opposite you I sit
This hell, I wouldn't wish on anyone, I know the struggle and pain so well, Holding on to every moment with you and cherishing every one.
The picture below is myself and one of my bestie's Ellie. She has been a god send over the past few months especially. She always, always cheers me up! I have had a rough week feeling quite poorly with upping medicines and vaccines and I probably wouldn't have attended last night if she hadn't of come. Despite even wearing make up I still look a bit off. I had a funny evening, smiled and laughed. Though behind my smile hides the pain that eats away at me and today has been a real struggle working through the fatigue and pain. I refuse to let my condition keep on taking from me though and times like last night are what keep me fighting and sane. Just this example shows how hard it is just to deal with day to day life.
Love and peace
Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
DO NOT FEAR CARBS - THEY ARE NOT THE ENEMY! CARB UP!!
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN.
Life is too short not to live it to the full, making yourself happy.