Today is Severe M.E Awareness Day - I usually always try to look on the bright side, make the most of life the way it is and try to do something to help change things for people with M.E. I thought since it's severe M.E awareness, I'll post things I usually try not to dwell on or think too much about because that's what Severe M.E is!
Severe M.E is;
Waking up with paralysis, speech unrecognizable although in my mind I'm telling someone clearly what I'm trying to say. Using communication sheets to tell people if I need turned, am too cold, or anything else I want to tell them. Knowing it's already lasted over 12 hours and wondering how long more will this last? Will the paralysis and loss of speech definitely stop?
Feeling invisible. Spending your days, lying in a hospital bed in a darkened room. Friends don't bother any more, family don't visit and spend some time together. Life goes on without you. Cut off from people, cut off from society, cut off from the world!
Being a parent but not feeling like a mum at all. Knowing that you're missing out on your child's life, watching them achieve things, try things for the first time and just having fun! Hearing your child cry, realising that they are hurt and not being able to get to them, hug and comfortable them. Trying to listen to your child telling you something but struggling to take anything in at all. Not being able to be there with them to share those special moments,swimming, riding a bike for the first time, their solo in the hip hop show, going down a slide for the first time.
Existing where you're totally reliant on others for everything. Carers calling several times daily, getting washed, turned in bed, drinks brought to you. Hating the fact that you're lying naked while someone washes you but knowing that it's needed. Knowing that without other people, you couldn't cope or survive on your own at 32.
Living with a catheter. District nurses coming to change them every 12 weeks or whenever there are problems. Carers changing leg bags and flip flow valves weekly. Carers checking and recording the output. Having a night bag connected nightly and removed in the morning. Hating the fact that someone has to empty what came out of your bladder.
Being completely confused, so confused it's distressing. Spending 20 minutes trying to remember the word box. Not being able to understand things a young child could easily do. Having to be told your granny is in hospital 4 times, each like you were hearing it for the first time eventually being able to remember. Realising you've asked someone the same question several times already that day. Not being able to find the words to speak a simple sentence.
You're body crashing completely, sleeping constantly for 18 hours waking briefly to take a drink then back to sleep for 22 hours. Sleeping so long with no ability to turn in your sleep or push the quilt off you if your too hot. Realising that it's been days, weeks and at worst months that you've existed like that. Carers or partner waking you to try to get some fluids and meal replacement drinks, falling asleep while they do. Having no memory of things that were said in the brief moments when you were awake.
Realising that you're missing out on life! Not having a career, family holidays, seeing the world, watching a sunset, listening to the waves as the tide comes in, having fun and enjoying every second you can and taking every opportunity to do try as much as you can!
Living each day in constant pain, sometimes so bad you literally can't think. Muscle spasms being just another part of daily life. Your body twitching and jerking, leaving your entire body aching more. Waking up with sore and stiff joints, muscles so sore you can't move them yet - wondering if you feel like this at 32 what will waking up feel like at 50? Having such severe headaches you think you're bound to pass out with pain soon.
Having constant problems with equipment, care, accessing a G.P, getting your medication adjusted. Struggling to cope but having to deal with the dietician, social worker, carers, district nurses, speech and language therapists. Only been taken to vital appointments, tests or hospital. Every outing being laid flat on a stretcher and traveling by emergency ambulance with entinox
Not being able to spend the time you want with those you love and care about most and knowing that time is gone forever.A medical professional referring to you as seriously ill and later after the shock, realising that they're right. Hating the fact that this horrible illness doesn't just affected your life - but great affects he lives of your family, those closest to you!
That's what Severe M.E is!
It's also realising that every moment counts. Appreciating the smallest things. Treasuring every special moment spent with those you love, holding on to the good memories to help you get through the worst and hardest times. Trying to adapt and do something important with your life, it's just going to have to be done from bed. Being grateful that you can do all the things you can and that your health isn't a lot worse like sadly other people's health is with this illness. Feeling happy to be alive!!!