A lot of people might imagine the lives of those with illnesses or diseases as either sitting in doctors offices or asleep in bed. They are only half right and completely wrong. We do spend far too much time in doctors offices but I get extremely little time asleep.

Sleep is a word that no longer has meaning to me anymore and is something more akin to exhaustion than anything restful, peaceful or refreshing. I sleep when I can no longer physically stay awake. But it may only last an hour or so before I am awake and battling again.

I cant help but laugh inwardly when my doctor reminds me to ‘get some rest’ and lectures me on the importance of sleep to good health and recovery. I wish it was that easy! I have no doubt she means it with the best of intentions but like someone who has never been to war, there is no way to describe the reality of what sleep is to those with chronic illnesses, pain, autoimmune diseases and many, many different symptoms to battle, day or night. Day and night has no meaning to people like me. Symptoms come and go whatever time of the day they choose and they don’t go to bed when the I want them to. Sadly, some of the worst parts of my day will start when everyone else goes to bed.

I cant remember the last time I slept for more than two hours without waking to have to move, massage, adjust, rearrange, turn, reheat heat packs, drink water, spray mouth gel, reapply eye drops, sometimes take more pain meds…and hope… that I can return to sleep before waking and repeating again in the next few hours. That has been my ‘sleep pattern’ now for over 8 years and I doubt very much if that will ever change now. Some weeks I have existed on less than 10 hours sleep in total and emotions can become very, very raw. Before my husband retired to be my full time carer, he had to cope with this regime and try to do a full 12 hour day. I was also trying to keep my 18 hr a day job with this sleep in the beginning; it doesn’t work.

Some weeks I am literally running on empty. We both are. But there is no way I know, currently, to change this and if it ever comes up in discussion with various health professionals it generally ends with being told “…get some sleep.” You see the problem that the able bodied and healthy world makes when they talk to people like me is that they assume we still have choices. I don’t have choices I have challenges. I don’t choose no sleep, but I have to face the challenge of trying to manage without it. Able bodied people still think we have choices that our bodies no longer have, because they don’t live in the places where I live and deal with the things I deal with. And its useless trying to explain this to people who are not willing to listen.

I am not an unintelligent woman, therefore I do not say things for effect or hyperbole, I know what diet, exercise, attitude, sleep, positivity means and I have used, tried, employed and done all that I can to give myself quality of life, that is why it met with great frustration when someone says something, or makes judgements for which they have no comprehension. Sometimes in life we are faced with situations where we simply can’t make easy choices and we must battle some difficult challenges. No choice. Sometimes medical science does not afford you a clear path with a happy conclusion. Its just not that way for many of us. If life does hand you easy choices and problems which you can “walk away from” or “choose a simple remedy” I suggest that you embrace them; for the rest of us we don’t have that luxury. We do the very best we can with what we have.

We continue to look for ways to cope with the sleepless hours each night and they have included music, reading, blogging, making up imaginary adventures together, petting fur kids, rubbing, massage, heat packs, crying, remembering past adventures… they are all in the survival kit. Each one employed as often as needed. Our nightly routine  includes evening medications until I am able to cope with showering. Slowly undressing, showering, help to get out of shower, coconut oil for skin protection, drying, checking for cuts, sores, infections, strapping feet and hands, metsal on joints and muscles, eye drops, mouth sores, stretching and rubbing, TENS machine taped to muscles and heat packs placed on major joints… and then wait. This entire process takes almost an hour every night. And we do our best… every day… we hope for the best. I continue to trial the drugs the specialists prescribe and hope for the best. I will read and research all I can about various alternative therapies and hope for the best.  I have learnt how to take nanny naps when I can… and hope for the best.

Sometime a night can be the longest part of the day before finally you have to give in and face the next day… and hope for the best!

Gentle hugs,

Trish