Last night i went to bed at 6.30pm. I crawled into bed (literally), realised I had forgotten to put my pjs on, slithered back out and somehow carried out the frustrating task of making sure both my legs weren’t in the same trouser leg and that my top wasn’t on inside out. I lay there for two hours. My body was aching with a heavy pain that meant my legs and arms felt glued to the bed. My stomach was cramping and my head was pounding. “Please”, i thought, no actually I begged my brain. “Please just sleep”. But sleep did not surrender it’s presence and I was left lying on the bed in a state that you would be forgiven for thinking was the result of me being hit by a car. At 8.30pm my husband came to bed having finally coaxed the kiddo to sleep. He read silently next to me in the vain hope that i might drift off. For the clock was ticking. Every minute that kiddo slept and I did not would have a knock on effect for the whole family. Because for every minute that my brain did not relax, was another minute that my ability to function the next day would shrink, leaving the chance of my husband being able to work in the comfort that I was OK becoming ever smaller. Eventually I gave up and decided to immerse myself in social media, the one and only place I felt I could be truly social. But I had a new phone, and I couldn’t work it. I felt the hot water rise in my cheeks. I tried to stop it but it was too late. I was hysterically crying before I even had time to blink.

Those of you who have had children may well be nodding at this point. After all that new born phase is famous for being the most challenging time of your life, and for anyone reading this who is currently experiencing it right now I salute you. It will end, you got this, you will get through it. Because our bodies our built to survive sleep deprivation short term. Unfortunately for me, they are not built to survive it long term. I pondered greatly on how I would illustrate the difference between the new born phase, and the fact that my child is still in the new born phase four years down the line. So I have decided to list the health complaints that I have approached a GP with over the last year or so, and they have confirmed that the primary cause is down to chronic sleep deprivation.

1. Continuous, reoccurring illness. I am always ill. And i’m now accustomed to hearing the following phrases:

“You’re ill again?”

“Gosh you are always ill”

“Do you take vitamins and supplements?”

“Have you been to the doctors about this?”

Yes, I assure you I have been to the doctors. When I relay the news to friends that I am ill yet again, I am met with an air of concern mixed with skepticism. After all, how could I possibly be ill AGAIN? No one without a chronic health condition is ill this much surely? And do you know, I don’t even blame them, because even I was skeptical to start with. So I visited my GP and guess what? Yep, I’m chronically sleep deprived and it has destroyed my immune system.

2. Weight gain. Back in January of this year I weighed two stone heavier than I should do. I have never weighed this much in my life. Those of you who have known me for longer than the last five years will know that I took fitness extremely seriously in the pre pregnancy days. I would gym or swim 3-4 times a week. And I loved it. In the end I was so concerned about the drastic weight gain that I asked my GP and she tested me for ceoliacs disease, thyroid issues and examined my diet. Nope, all clear. Turns out chronic sleep deprivation causes your body to go into panic mode. Not only are you far more hungry, but your body converts food to fat in order to build up stores as it is worried you are about to go into crisis or shut down (or something along those lines, don’t quote me on that). Quite clever really but it means that without sleep, not only do I not have the energy to exercise, my body will increase in weight even on the best of diets. Joy.

3. IBS, high blood pressure and insomnia. I thought id pop those in the same point otherwise we will be here all night…

4. Absolutely no social life (technically not a medical issue but bare with me). Think about it. I get the most sleep I possibly can by going to bed at the same time as kiddo. What happens when the kids are in bed? Parents can relax, exercise or maybe even socialise! But when I do get the occasional evening invite I have to decline with a heavy heart, because even if I am not doing the night shift that evening, the chances are I’m so exhausted from the previous year of no sleep that I can’t keep my eyes open past 8pm anyway and the evening is lost to snoring on the sofa with, dare I say it, a little bit of dribble on my chin.

5. Sore and painful eyes, body acne and crumbling/brittle nails. I’m not messing around here, my body is physically destroyed. And whilst you can hide IBS and high blood pressure, these delightful tattoos of the well and truly sleep deprived are visible for all to see. To say it is embarrassing is an understatement. Some days not even the multi layers of make up I cement on to my face manages to cover the stretch marks of sleep problems. And unlike pregnancy, you don’t get flooded with memes on Facebook of how you should be proud of your body and showing off your scars to the world and his wife! Nope, instead you get acne treatment adverts and suggestions for every eye cream under the sun. Moving on.

6. My hair is falling out. Enough said. As if I don’t have enough to worry about, I now have baldness to contend with.

7. My marriage is barely given the time of day (again, not technically medical, sorry!). As I’ve said before we are very fortunate here. Hubby works at home and so I do see him a great deal of the time. But the quality relaxing time we so desperately crave is in such short supply that if we ever do get a chance to claw any back in the future, I’m genuinely scared that we may have forgotten how to just ‘be’ with one another. Although for the first year of date nights we will probably just choose to sleep. As in actual sleep. With face masks and do not disturb signs. Romantic eh?

8. A decline in mental health. Over the last year in particular my mental health has taken an absolute battering. At times I have felt like someone has set off an atomic bomb in my head. Having visited the GP the very first time, and explained my past dabble-ings with anxiety and depression, she said “we must see if we can treat the cause first before we begin a course of medication”. This is true, but unless you are willing to fight my battles with the powers that be in the pediatric world and convince them that we need more than melatonin, I think we can safely say that the root cause will not and cannot be fixed. Pass me the antidepressants please, because in this situation I am not ashamed one bit to say I can’t cope without them right now.

I’ve got this far and haven’t even begun to mention my worry for not being fit to drive my child to school, or the disgusting state of my house which if you stepped foot in you would believe that either:

a) It’s a crime scene. Mess, dirt and disarray perfectly preserved for when investigating officers arrive.

b) It’s set up for some kind of hardcore cleaning exam and I will be marking candidates on their ability to clean up toxic waste.

I can assure you, I did not experience all of this whilst I was in the newborn phase. And with all of the above I am supposed to care for a child with severe complex health needs, who requires a minimum of an hours sensory therapy every single day come rain, shine, sleep deprivation or illness. If you had all this and went and presented these symptoms to the GP you’d most likely be referred for tests or further examination. But when you are sleep deprived you are simply brushed aside with no help or support, told that you must address the problem that is causing the sleep deprivation. Oh, but you’re not allowed any help with your child’s sleep deprivation until you have undergone weeks of new bedtime routines, diaries of sleep and wake times and proved that you really have tried everything. And then you’re still not allowed any help (hats off the GPs that have really fought my corner here and have reported to the consultants again and again that our situation is not sustainable).

Yes lovely people, our sleep deprivation situation is so much more than a newborn phase. It’s relentless. So the next time someone who cares for a child with disabilities and a sleep disorder says they are tired, please for the love of God don’t reply, “yeah, me too.” Because I promise you, it’s not tiredness they feel. Its a deep down desperation for help, and above all, sleep.

Thanks for reading,

Danielle