I knew from very early on in life there was something not like other people about me, i have memories as early as 3 yrs old telling mummy how much my legs hurt and how tired i was when i walked anywhere, she said i often would cry in pain after a stroll to the shop and had restless legs when i slept.
School took me out of PE in the lower primary years when they saw the increase in my fatigue and pain after sports. When i was a teen i couldn't keep up with my friends, i always wanted to stay home or just do things that required least effort or exercise, my absences from school became an issue as i seemed to be ill every week with the same sore throats, swollen glands, nausea and pain. By the time i turned 15 i could barely get out of bed, i forgot everything important and my memory and confusion was so severe i would have fights with my parents who thought my being lazy and ignorant.
Finally after 6 months of twice a week GP appointments and endless tests i was diagnosed with M.E more commonly known as 'chronic fatigue syndrome' and i spent a few months home from school following a rest and diet plan set by my family doctor to improve my condition. I then returned to school being permanently removed from sports and given an hour a day as a rest period where i was allowed to lay down or sit in the library and i often still had absences but i got through high school pretty well considering and even returned for an hour a day as an adult student once i turned 18 to keep me focused. Stop that slide into depression that kept re-occurring.
Not many people understand what ME is or what it does to a persons life....i'm still unaware of the depth of the condition i only know what i myself cope with even now at 33 years of age...i have good and bad days...i was also diagnosed with psoriatic arthritis which combined with my ME make life a constant struggle. SOme of my daily and weekly struggles include....
*Extreme tiredness even after a gentle trip to the shop- I feel the need to rest, lay down or even sleep.
*Bright lights make me feel exhausted, agitated, and bring on sore heads.
* gastro problems including feeling sick often, stomach cramps for no reasons and some similar symptoms to IBS
* sound sensitivity, I hate the tv being loud , 2 people talking at once, any noise which is chaotic or loud background noise makes me feel like i have an inability to cope with my surroundings and i tend to become aggressive and upset.Panicked.
*nasal allergies inc dust, animals, hay fever , i always feel like i have the onset of a cold although it rarely becomes one
* prone to bouts of sinusitis, throat infections , swollen glands in my neck and throbbing in my sinuses leading to skull ache.
* fuzzy feeling in my head/ears and lack of concentration, i call this foggy head, its as tho i'm walking around with my brain surrounded by fuzz and it doesn't want to work as it should
* muscle spasms in legs like they are 'bubbling', 'itching' 'restless' this can happen in my arms too when i become very fatigued.
* easily bruise/unexplained bruises
*spending bad days in body ache as though i have flu, every gland sore and swollen and the overall effects of a bad flu including the pain and fever.
* leg pain in winter, this is also where my psoriatic arthritis joins in giving me debilitating pelvis ,back and leg pain most days.
*neck/ top of back pain and pain in my joints ranging from a low burning to outright painful throbbing.
*headaches quite often ranging from minor to extreme migraines
*heart palpitations for no reason feeling like i'm having anxiety attacks, racing heart which can last hours.
*struggle sleeping when fatigue is at its worst, then sleeping too much but never feeling rested when fatigue is less
*irritability/mood swings, prone to depression and aggressive outbursts, the urge to cry for no reason and often to be left alone.
* struggle with physical exercise - lack of stamina and strength, constant aches and feeling like i have flu.
* increased symptoms/exhaustion if my environment changes I.E. hot weather
* struggle to get comfy at night , restlessness and irritability while trying to fall asleep.
*constantly feel cold even on sunny days i will sit shivering and have ice cold hands,and then bouts of hot sweats sometimes for days on end.
*overall general muscle and joint ache every day becoming extreme so that its painful to even lay on a soft surface, a feeling of being bruised as though i've been beaten.
*I have dizzy spells every day resulting in sometimes losing my sight for a few seconds of blackness to all out falling down and being unable to get up for a few seconds,
* clumsiness , dropping things, banging into things an inability to seem to judge depth either seeing things closer of further than they are which results in being overly clumsy
*sudden pains in my legs which cause me to fall without warning can happen from 1-10 times a day, i used to be afraid to lift my children when they were babies incase dizziness or leg pain caused me to fall with them.
*lack of appetite feeling uninterested in food and then being hungry all the time and non stop eating , such a conflicting symptom depends on where my fatigue levels are.
*often shortness of breath and a cough which was misdiagnosed as asthma in my youth
*visual issues - blurriness, pain with bright lights, dry eyes and irritation
*medication sensitivity, intolerance to substances like alcohol , chemicals and even odours
I find the hardest thing as a mother to deal with is the foggy head, lack of memory and concentration , i often get overwhelmed when my kids argue or cry or make noise and get very upset, i find walking anywhere a struggle , this utter overwhelming fatigue which makes me feel like falling down and sleeping and its an illness which makes you feel alone. My anxiety and stress levels are at a constant high as though i have an inability to process problems without severe stress, panic attacks and anxiety which can lead to weeks of tears and shouting to low depression. So what was the hope in my life? It became obvious as the years developed i was getting worse and nothing really helped except rest, pain killers and trying to live as quiet a life as i could. That's where crafts come in, there my saviour. i can focus on making and doing with little stamina , keeping my brain from trailing into depression. Using the internet to organize and sell my makes keeps a social circle open for me which i would lack otherwise as i do not often leave the house. People mistake that i seem to get on and manage as that i'm not really ill or have issues but i'm so used to battling every day since childhood that i'm very good at hiding whats wrong, i don't want to be treated differently, and when i have good days i want to go outside and enjoy people and activity, later on they don't see me when i crash and cant get off the couch, and hide when i'm having bad days in my craft space. I wish i could be normal but i'm resigned now to the fact this is part of who i am, i wouldn't be so creative and make so many lovely things, i wouldn't have met so many people through crafting and i wouldn't be able to teach my kids how to crafts and create and find there inner creativity if i hadn't needed that distraction all my life. There are many people like me and people don't really understand what its like...we may be walking in the street looking fine and healthy one day in the sun but it doesn't mean were lying about the struggle we face daily.
I heard someone say once CFS is a silent condition and i couldn't put it better myself, to look at me you wouldn't think there was anything wrong. So what is CFS? a good friend who suffers from the same thing once explained it to me in simpler terms.....'you have a faulty brain' in childhood a bout of glandular fever and coxsackie virus (both similar to ME) traveled up my spinal cord to my brain resulting in an infection which left scarring in my brain tissue.....what that means is when my brain sends a signal from A to B like a car on a motorway in a straight line from one destination to another, a normal person has the response in seconds (your brain sends signals for every action, thought, movement or organs process you have, millions in a day) whereas my brain is pitted and scarred leaving my motorway more like a zig zag line through rocky hills so route a - b become long laborious and sometimes there's no connection at all.... The brain is a powerful thing giving our body messages and signals and went its malfunctioning its very hard for out body to regulate the way a normal person does...bodily functions and organs sometimes slip up , work too fast or too slow, pain receptors go mental and the brain tires quickly from working its little butt off. I don't pretend to fully understand as part of my foggy head makes taking in knowledge and learning quite difficult i'm easily confused and over whelmed...imagine staying up every night for a week and carrying on in the day as normal, going to work doing everyday things, imagine how fried your head and body would be then think that is how i feel all the time regardless to how much i've slept.
I do know that its not fully understood just all that goes on in CFS sufferers its very misunderstood but i do know that next time someone tells you they have ME or CFS you may understand just what impact those little letters have on them xx
Well its the 11th march and we have over a foot of snow again, was only about a week ago we had more ....scotland sometimes is a pain with its weather lol but i guess being stuck indoors gives me more creative time i guess, i've been working on some new styles and new ideas both in making molds and finished pieces. I spent hours sorting out my etsy store too, so i hope in the end its been worth it as i have a whole new way to go forward with my pieces.
