What does severe ME mean to me?
To me severe ME is lying in a darkened room alone, trapped, frustrated and scared. Feeling things happen to your body that you can't stop or control: - the terrible headaches, muscle, joint and glandular pain, muscle spasms when your arms and legs jerk or even paralysis.
It is being awake all night with your brain in hyper-drive so you can't stop thinking. Feeling so exhausted you want to cry, but too tired to even do that.
Sleeping through the day and waking up when everyone else is asleep because your sleep cycle has shifted and nothing you do will make it go back to normal.
Having no treatment for the condition and only limited means of dealing with symptoms. Often drugs that help other conditions have little or no affect on ME sufferers and can even cause bad reactions. You often become resistant to the drugs that do help, meaning the symptoms come back, stronger and harder to live with.
Life with severe ME is having every sense on overload. The sound of a lawnmower, Hoover or even rain on a window, drums into your head, tearing through you, causing agony. It means you constantly have to wear earplugs and people can only talk in whispers. Severe ME is forgetting what you want to say, jumbling your words and being unable to form a sentence in your head, let alone voice it out loud.
Sometimes even this is too much and you stop being able to talk to people at all, making you feel even more isolated, desperately trying to communicate with blinks of the eye and hand gestures.
Light blinds your eyes, sending searing pain deep into your head. You have to have thick curtains, dark glasses and eye masks at all times. You can never look out of a window and watch life outside. Sometimes you’re too weak to even open your eyes and lie blinded to the world.
The faintest smells and tastes seem overpowering and induce severe nausea and even vomiting. The blankets are so heavy on your body, burning as they rub against your sensitive skin. You can't be touched, hugged or even hold hands with the people you love because it hurts too much.
Severe ME is being unable to sit up unsupported, feeling so dizzy you could faint whenever your head changes angle. Having your body and limbs moved by someone else, because you're too weak to do it for yourself. Having to be helped stand up so you can use the commode beside the bed, or even being too weak to do this and having to resort to a bedpan. Relying on your mum and worse still, your dad and siblings to help you go to the toilet and even empty it afterwards. The feeling of complete humiliation that you can do less for yourself than a toddler. To lose all your independence and keep on living.
Being unable to wash or dress yourself, having to have some one give you a sponge bath and brush your teeth for you; but only on the days when you can cope with being touched. Going for weeks or even years without washing your hair because it feels like the equivalent of running a marathon and you just don’t have the energy to spare.
Having to ration out every ounce of energy you have, just to get through the day. Becoming aware of how much energy it takes just to swallow food, listen to a few minutes of a story tape or stick a sticker on a card. Having to content yourself with activities aimed at children, as they are all your concentration will allow and then having to lie resting for at least half an hour to allow your body to recover.
Severe ME is being fed by someone because you’re too weak to hold a piece of cutlery, let alone lift it to your mouth. Drinking from a toddlers cup held up by someone you used to sit at a table and enjoy a meal with.
Worst still is becoming so weak you can't even swallow liquids, having to be rushed into hospital because you are so dehydrated they are worried about kidney failure. Being on a drip for weeks and having to have a tube inserted down your nose or through your stomach just to get enough nutrients in you, to keep you alive.
Severe ME is feeling so sick and ill you don't want to exist anymore. Not die, never die, just not feel, not to have to try and struggle through another minute of this torture let alone get through the day. Desperately praying for a miracle, to wake up and find it’s all been a terrible nightmare; but that it’s over now and you can go back to being the person you truly are, living the life you are supposed to be living, not this appalling half life that somehow became your existence.
Severe ME is being trapped in a room, with four walls closing in on you. Being too ill to do anything except lie still, feeling so angry and frustrated that your life is passing you by and there is nothing you can do about it. Wanting to be able to read, write, listen to music, watch TV, make things and go out. All the things you love and would do anything to be able to do again.
It’s hearing about friends and family doing all the things you long to do and feeling the pain and jealousy rip through your heart and be unable to do anything about it.
Severe ME is watching your dreams slide away; but trying to desperately cling on. To plan all the things you’ll do when you are better but not get frustrated and impatient because you can't do them now. Trying to take each day as it comes, some are good, some are bad. Sometimes it can be a bad day, week, month or even year, but continuing to hope that tomorrow will be better, tomorrow will be the start of your recovery. If wanting made you better you would be better in a second.
Fortunately for me things have greatly improved, even though I am still bedbound I am slowly getting my life back, something which I am grateful for every day of my life; but there are others out there still living this nightmare. Unseen and heard and its to them my heart goes out to. They are constantly in my thoughts, and I feel it's my duty to make sure they're in other peoples thoughts too. There is so much suffering going on behind closed doors. Just because you can't see it doesn't mean it's not there. We need help and support from our family, our friends and our doctors. We need to be believed and understood. We need to be given help and advice with our symptoms, our emotions and with how to cope and live with such a debilitating illness. We need biomedical research to find out what's happening to our bodies and what can be done to treat it.
We need your help! We are too ill to do it ourselves, so we must turn to the people who are well, who can speak up for us and campaign for our needs and rights.
So please help us.
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