You don't need to read everything, but please read a few statements at random, just to get a feeling for what people whose lives used to be just like ours, are suffering, day to day.
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From Jenny T.
It affects my emotions due to the dysregulation going on in the brain. I get very sensitive and my emotional reactions are over the top for how I should actually feel. I get angry out of nowhere and have wanted to smash things up, scream or self harm. Of cry hard as if I'm nearly screaming/crying in emotional pain.
That is what I'd does to you when your friend doesn't believe you and then other people who should be on your side take theirs and accept that nasty behaviour. You lost everyone that was close to you. You're lucky if you have your family left.
I used to have noise sensitivity where my eyelashes brushing against a pillow hurt like a knife going through my head and when I blinked it was the same pain. Clocks ticking hurt my head.
We used folded kitchen [towels] as sound dampeners for everything and I even communicated by writing on toilet roll sometimes.
The light sensitivity was through the roof. I could not deal with any sort of light no matter how dim or small. With my eyemask and the curtains shut and doors shut to block the light and my eyes shut I still had to be very careful. I lived to the pitch black. And every tiny dot of light had to be taken away or covered up.
Anyone touching my skin made me ache so bad.
I had to use paper plates, plastic bowls, plastic cups and plastic cutlery. Plastic cutlery is your best friend. If everyone uses plastic cutlery you can even eat in the same room as another person. When metal cutlery comes into contact with a porcelain bowl or plate it hurts.
I couldn't have the weight of a bowl or plate on me.
Brushing my teeth would take 30+ mins. The constant migraine I had for about 2+ months hurt so much that I would bite down with my teeth. So much that they would wobble and I was convinced they would fall out.
Insomnia, I would see things that weren't there. I would also hear singing, music, Pokemon, pianos playing, birds tweeting, guitar strings being twanged 24/7 for a while. And I couldn't sleep because it was so loud.
I could talk to my parents in the quietest whisper but it always was a huge risk to speak or hear them with the pain it brought. If we spoke too much or too long I could not sleep for the pain and the pain killers did not always take it away. My mam could not talk to me when she spoon fed me or held the cup with the straw for me to suck from. Sucking through a straw was exhausting. My tongue would ache. I would have a soft diet for a while and I'd have to stop with food in my mouth for a few moments before I had to strength to swallow.
When I started to try to feed myself I had to lie down until ready for the food. I would sit up and put food on the spoon and stare at the wall for about 7 minutes and then I had no energy left to chew or swallow. I would lie back down again for another 10 minutes before trying again. I would stare at the wall again forgetting to put it no my mouth. My dad came up and I said can you help me? I can't concentrate on eating. He didn't understand and he didn't stop to help me at that time.
Breathing for myself got where I could not inhale voluntarily. I had to wait until my body breathed involuntarily. I tried and I just couldn't. I felt paralysed to be able to move my chest. So I'd wait and wait and wait and the alarm bells would go off inside me. You need to breathe.....you need to breathe! You NEED TO BREATHE NOW!!!! And I'd GASP! And feel such a huge relief thank god. I don't want to stop breathing. Please keep me breathing I don't want to die. And I'd wait and wait and wait and then the alarm bells going off again and I would get the strongest pang of anxiety/adrenaline in my chest and the breath would come.
My veins inside me felt cold and felt like they were shaking inside. I felt like a cold sweat (but no sweat) my body would ache. When I say ache I mean, imagine trying to punch the air, keep doing it. Just keep doing it. Keep doing it until you physically cannot do it anymore. Your arms ache with lactic acid. That is how my entire body felt. I felt that I wanted to fall down and collapse and I was alreadly lying down.
Your whole body feels paralysed and it so hard to even wiggle your toes or fingers and you have to fight really really hard to make them wiggle. And people tell you, come on sit up. And you feel like you are strapped down to your bed. Every last inch of you. I felt like I was on one of these rides..........
....when a normal person is on this ride and it's going extremely fast and they try to sit forward or pull their leg away from behind them and it's so hard to do. It is a similar feeling with us. Except it feels a lot stronger. People can sometimes move their arms on these rides. Imagine it going even faster so you can't. This is how is used to feel for me when I had to sit up. I couldn't and my mam would have to put her hands behind me and sit me up and prop pillows behind me.
When I walked I felt like there was an elephant pushing down on my head. I felt like my feet should be got through the floorboards and the my legs wobbled and ached and the floor felt like jelly as I walked.
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From Galadriel D
Imagine feeling so exhausted that you can't move, you can't think straight, you can't speak straight, it's hard to take in what is being said as all the sound around you is one jarring hubbub, the very muscles in your eyes are so tired you are seeing double, and the light hurts them. You need to lie down most of the time, sitting up is painful and exhausting. You try to read something or watch something but you can't take it in.
Imagine a friendly pat on the arm feeling like a blow.
Imagine the worst searing muscle and joint pain from a bout of flu, but everyday. Imagine getting hardly any sleep, waking unrefreshed if you do, barely making it from sofa to loo and back, or from bed to loo and back, but still having to try to somehow cope with it. Imagine not having the stamina for a bath or a shower, struggling to have a strip wash and get dressed.
Imagine this lasting years, and the world expecting you to just carry on and cope, or deriding and disbelieving you.
I can count the number of times I have been able to leave my home without the help of another person during the last four years on the fingers of one hand. My legs give way after a few yards and my mobility scooter is hard to handle. I dare not have friends round because my husband who works full time, looks after and cooks for me and looks after my disabled adult son struggles to also keep up with housework and the place is perpetually a mess.
Imagine no chance of a job or a sense of contributive purpose. Imagine the cost of an evening out at ukulele club and a bit of singing, the cost of pretending to be normal, is making all the above worse for the next two days. This is my life.
... I have been ill since 1993 so 23 years now, the first four were in a wheelchair, the last four going back to as bad as the beginning. The fifteen middle years were more variable but I always had to use a mobility scooter, could not walk much, could not work, aside from a patch when I managed to make things and do a craft fair for a few hours once or twice a month. I had two major relapses due to looking after others, a young woman with severe mental illness and my mum during her terminal illness. The latter was what has taken me back to the beginning.
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From Liza H
It's basically taken away my life and the plans I had for my future - I've lost a lot of independence - I had so many dreams that have been put on hold because of this illness - Its not only the physical problems the exhaustion and the pain but also the mental problems the isolation, the uselessness and the frustration - It's taken so much from me but it won't beat me and I will get through it and some day I will get better , you have to keep believing.
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From Jane M
Pain is unbearable. Messed up my gynaecological system completely - suffered very badly from that. Having to rest for days before a special event and not even knowing if you'll make it, then if by chance you do you lose at least a week to get over it.
Losing the best years of my life 28-57 and still counting.
Not being able to play properly with my grandchildren (this is a big one for me). The constant headache and achy sore throat. Sleeping away my life but having to take sleep meds to get a longer sleep because of pain but never feeling refreshed after however many hours.
The feeling of complete hopelessness and helplessness. Watching something on TV or reading an article or a book and forgetting most of it. Never being able to get my words out so people have to finish my sentences for me. Numb hands and feet also pins and needles. Causing food intolerance so it's never easy to eat just something easy and if I do I end up with major stomach pain and end up sitting on the Loo for an age.
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