Please don’t wake me…

Today kicks off Sleep Awareness Week, which aims to highlight the importance of good sleep. As a chronic insomniac I am of course acutely aware of how important sleep is. I’m writing this at 4am, so I haven’t found the cure for sleepless nights. I do though have some semi successful strategies.

My relationship with sleep has flipped from one extreme to the other. In my youth I could drop off anytime, anyplace. I loved to snooze and had zero issues dropping off. I was the queen of the long lie. Sleep became a problem when I first experienced mental health problems aged 19. Unfortunately, I have never managed to regain my easy breezy relationship with slumber. Almost twenty years on I have become accustomed to functioning on a few hours a night. Chronic pain has done little to aid a peaceful night, but an inability to calmly shut down is still a major obstacle in my quest for rest.

A decent night’s repose can affect everything from heart health to sex drive. It goes without saying that exhaustion also has a massive impact on mental health. The NHS advises that most of us need around 8hrs sleep to function properly. In fact, lack of sleep can so massively impair cognitive faculties that experts suggest driving after only 5 hours sleep is just as dangerous as driving drunk. Everyone should be mightily relieved that I cannot drive.

The long-term effect of insufficient sleep is grim. The anxiety of going to bed each night knowing achieving sleep will be a battle is wearing. The more you worry about not sleeping the less likely it becomes. Constant fatigue makes getting through daily tasks difficult, which adds to one’s stress levels. This in turn pushes that magical 8 hours even further out of reach. Long sleepless nights are lonely. There’s rarely anyone else awake leaving a busy mind way too much room to mull over worries. Throw pain into mix and you have a recipe for despair. Moving through the world in a worn-out shuffle will grind you down, which is why I offer my extensively tested tips on getting some god damned sleep.
I’m not going to waste your time with milky drinks and lavender under your pillow. Everyone knows the basics and they aren’t going to cure hardcore insomnia. I don’t have a failsafe solution, if I did, I’d snoring now. However, these are the things that I have had some success with over years.

Bedroom Tips

Keep your bedroom cool. Lowering your body temperature helps the body prepare for sleep.

In theory that’s why a hot bath should aid sleep, but I find any sleepiness gained from the temp drop is lost during the process of getting dry and organised for bed. If you do less faffing post bathing it might work better for you.

No tv in the bedroom. This is a definite for me. I find a television to be the opposite of relaxing. I need my bed and bedroom to be a completely chilled out zone. Which sits nicely with my next point.

Try to make your bedroom as pleasant as possible to be in. Obviously, that means different things for different people. For me it’s nice sheets, subtle scents, comfortable mattress.

Black out blinds are your friend. I could not live without mine.

Invest in one of those huge maternity pillows. They give so much support if you have back or joint pain. Plus they’re just super comfortable.

Sound Effects

Rain on window

I use sounds machine apps. I like heavy rain/ thunderstorm type sounds, but experiment and see what works for you. Something about being safe & protected from the elements I’m hearing sometimes helps me drift off.

Soothing music (whatever that means to you) at a low volume can also help. I like to mouth the lyrics and focus on words I enjoy rather than my own thoughts. Getting the volume just right is key for me, so again, you might need to experiment. Select specific songs and make a playlist beforehand. You don’t want anything that unexpectedly bring unpleasant or stimulating associations to mind.

Preparation

I should probably have started here, but lack of sleep melts your brain. So, you’ll have deal with my disjointed thinking.

These are all evident. I’m going over them because sometimes you miss the obvious when you’re knackered.

Don’t eat too close to bedtime.

Don’t watch, read or listen to anything that will bring up stimulating emotions (nothing scary, disturbing, sad, triggering etc).

Avoid arguing or deep conversations right before you hit the hay.

Smoking, caffeine, some meds (check with gp/pharmacist) are no goes before you attempt sleep.

Against Accepted Wisdoms

Sleeping cat

I’ve consulted many Drs, Psych’s and other practitioners over the years and some of the oft repeated advice they’ve given me has turned out to be just plain wrong for me. If you find something that really does or doesn’t help, even if everyone is telling you the opposite, do you. For me this includes:

Looking at my phone in bed. Putting it on night shift mode to alter the light tone to yellowish rather than blue is a must. Otherwise I find aimlessly scrolling can be very helpful in getting me sleepy.

Reading in bed also works for me. I can’t fall asleep without reading. I find that if I just keep going until I literally can’t keep my eyes open, I have a good chance of getting into a proper sleep. I think it’s because my mind is occupied with the content of the book rather than whatever mess is in my head. Clearly, it’s important to choose the reading material with reference to my previous points.

Sharing the bed with pets. So many people have cautioned me against this. I find my petting my cat and hearing his purrs excessively relaxing. Thus, I ignore such warnings.

Hippie Dippie

Constellation lamp

I hate to be that person, but occasionally the esoteric route gets you there.

A constellation lamp in a dark room can offer something uncomplicated to focus your attention on long enough to get to sleep.

Gentle yoga – clears the mind & stretches everything in a pleasing manner.

Desperate Measures

When you’ve been attempting shut eye for hours and are reaching the point of hopelessness; get up. By that point you aren’t going to sleep. Every toss & turn just raises anxiety levels. I find it much more productive to get out of bed and stop forcing it. Do whatever you can manage and if you get drowsy try again.

Medication – You need sleep to operate. There comes a point when discussing medication options with your Gp is the sensible thing to do. I have tried several sleeping pills over the years. Most didn’t work for me. Most are not a suitable for prolonged use due to addictive and/or tolerance building properties. There are some drugs that can be used for longer periods. I have been prescribed one such medication. It doesn’t have a 100% strike rate, but when it does work it knocks me out all night.

Sleep when you can in extreme cases. Often napping is counterproductive when fighting insomnia. However, when you haven’t had more than a couple of consecutive hours sleep in weeks that goes out the window. When my sleeplessness is at its worst, I will get so completely exhausted that my body will crash. That doesn’t always happen at bed time. Take that sleep. You need it. Sleep all day if you must.

Last but Not Least

Oxytocin

Sex and orgasms in general are brilliant for sleep. Sex works on so many fronts. You can tire yourself out, all those feel good hormones chill you out and of course it’s the perfect distraction from any negative bullshit you have going on. Flying solo releases all that lovely oxytocin and melatonin too, so don’t be shy about giving it a try.

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Let’s hear it for the girls…

It’s International Women’s Day again and we’re all applauding the amazing women who are soaring in all manner of ways. Whilst I am very much here for that, I also want to give a standing ovation to the women who are just about holding it together. I really want to shine a light on a different kind achievement. So often we overlook the strength it takes to just keep going on the face of adversity.

Neon together we will burn brighter

I want this IWD to be about the women living with chronic illness, mental illness, inequality in the workplace, trying to make ends meet, shitty relationships & everything else that weighs you down. Perhaps you’re not launching your own collection, pulling in 6 figures or living the insta glam life. That does not mean you aren’t striving and succeeding. Every day that you get out of bed despite being wracked with pain, you’re killing it. Every single mother who loves, feeds & inspires her child(ren) every day is changing the world. Forcing yourself out the door when you’d rather curl into a ball & cry, is winning. Steering your own course in a workplace that is designed for the comfort & advancement of men makes you a boss. All the women who have to fight stigma & danger to claim their womanhood, you are queens. Even if you were unable to wash your face or get dressed today the fact that you are still here, still living, still fighting is enough.

We are all Wonder Woman

*

We all know smart, talented women who are doing the best with the hand they’ve been dealt. That may mean that their successes aren’t as big & shiny as those we’ve become accustomed to celebrating, but they count. Those hard won achievements deserve acclaim. This year let’s hear for the women who keep their worlds spinning every day in spite of universe’s attempts to thwart them.

*Wonder women print by SaturnTwinsArtShop.

I don’t know where I stand…

About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick. 

I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even  woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.

Foot & walking stick

There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions  multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is. 

Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience. 

I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.

Less fun.

Less appealing. 

All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?


Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful! 

I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier. 

A day in the life…

This morning I was rudely awakened at about 3am. The ill mannered culprit was pain. This time it was intense & centred in my stomach. So, i got up, took my stomach meds, some painkillers & hoped for relief.

Relief was not to come. I lay in the dark for half an hour waiting for the medication to work it’s magic. My body was having none of it, a wave of nausea washed over me & I knew I was going to be sick. I ‘rushed’ to the bathroom where I proceeded to vomit repeatedly. Each violent wretch sent pain shooting down my back. An hour later I’m sweating, dizzy, sore & unable to get off the bathroom floor.

All the throwing up had triggered some hefty heartburn & reflux, but meds weren’t  an option for fear of kicking off more vomiting. I slowly picked myself off the floor & retreated to the living room. Once situated on the sofa, I turned out the lights & put Joni Mitchell on low.  Over the next several hours,

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

That’s exactly what happened. Today was a riot of pain. My stomach continued to be a nightmare. My back ache progressed into agony. I was intermittently sick throughout the day. Thus I had to cancel appointments. Most of the writing scheduled for today wasn’t even attempted. More housework piled up as I struggled to control my pain & rising panic. An acute flare like is this stressful because I never have any idea how long it might last. I could be in better shape tomorrow or I could be in hospital. I live alone & I work freelance; if I don’t do it, it doesn’t get done. I worry. A lot. I grow concerned about 

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

Basically, I worry about everything, from the state of my kitchen floor to the state of my relationship. Of course all this stress is detrimental to my health. Especially with regards my to stomach problems, stress is the enemy. Likewise, stress is an anathema to sleep. Lack of sleep makes illness more difficult to cope with, but of course pain & illness also make it harder to sleep. If I can’t manage my anxiety it will spiral into panic attacks & depression. Any decline in my mental health reduces my productivity, my ability to leave the house & my chances at engaging with the world positively. Around & around I go. Symptoms exacerbate symptoms all adding up to an almost permanantly exhausted, scared, sick & sore me. 

And this is my life. This level of illness is not rare. My good days are not pain free. I don’t know when the bad times will hit. I wake up every morning with no idea if I’ll be able to get out of bed. Chronic illness is fucking nightmare. It forces you let people down, to miss huge chunks of your own life & to live that life always walking on broken glass.  

Doctor, doctor…

The universe obviously thought my life was going a little to smoothly, so she threw me a little kidney shaped drama. 

I woke in the night with excruciating upper abdominal & chest pain. Violent throwing up followed by passing out left me a tad perturbed. It was actually a little scary as the chest symptoms mirrored all the things you read in heart attack warnings. More passing out & worsening pain led to a call to NHS 24 who swiftly sent an ambulance. 

The paramedics did a heart trace & found me to be more tachycardic than just pain could account for. To be honest I think the culprit for my racing heart was sheer panic at finding myself in a bloody ambulance. Anyway, an empty a&e and some very nice medical folk soon led to a diagnosis; an inflamed kidney. 


At the just kill me stage.

I had yet another kidney infection, which had caused my kidney to become in inflamed with sheer indignation. I can’t really blame my poor kidney. The number of kidney & urinary tract infections I’ve had in the past 12mths is ridiculous. I was admitted to surgical ward, given fluids, morphine & monitored. 

It looks like I might have tiny kidney stones. These little bastards are causing all the trouble. I need to have a detailed scan later this week. If there are stones lurking they can be broken up with ultra sound waves. Which, overall is good outcome. I am always delighted when drs can give me answers. 


Progressed to I can stand the pain, but I hate hospital stage. 

For the time being I am glad to be home & reallly hoping this will spell an end to all the kidney issues. Another hospital stay & resultant recovery time has put a serious dent in my productivity. So, I am currently stressing about the enormous backlog of tasks I have. I’m behind in everything from housework to writing, personal grooming to fundraising. Spoonie life is anxiety ridden. 

Oh, serious brownie points to the toy boy for taking excellent care of me. Big tick in all the boyfriend nursing boxes. He brought me jelly, fed my cat, fetched me fresh knickers & listened to hours of my morphine addaled chatter. He even got me a cute get well card. Thanks, babe. 

Comforts in my bones…

Chronic pain is hard af. Trying to live a full life whilst always hurting is even tougher. Pain relief medications are great, but they have limitations & complications. Hence the need for back up. There are a million products claiming to relieve pain. So, if you don’t know where to start here’s a few options that make my life a little less painful. 


Let’s start with a cheap & easy product. Epsom Salts are available in every chemist for a couple of pounds & super simple. Just pour some into a hot bath, get in & relax. Epsom salts don’t offer any long term relief, but on a day when my body really aches all over they help. Sometimes even that soothing half hours soak can help me deal with a day of pain.

For more sustained relief I love my tens machine. I find it particularly helpful when I have to be on the move. Often even short journeys or everyday errands can leave me tormented. A tens works by sending electrical pulses across the skin & nerve strands. These pulses help prevent pain signals from reaching the brain & can also stimulate production of endorphins. I swear by mine, wearing my tens definitely prolongs how long I can be ‘active’. You can attach the sticky pads of the tens directly onto your painful areas & the machine is smaller than a phone. Meaning it can be worn discretely under your clothes & is totally mobile. It is possible to borrow a tens from the NHS, but they are also pretty affordable to buy. I bought mine from Argos for around £20, there are of course much more expensive ones if you want something really fancy. 


Heat is another humble, but effective analgesic. I find heat works particularly well for stomach cramps/spasms & achey pains. I use a range of products that provide targeted heat. Adhesive heated pads are great for when you have be mobile. You can pick them up in mutli packs from poundshops & they will retain their heat for 6-12hrs. When I’m at home I favour a good old hot water bottle & heat packs. My very thoughtful little sister gave me an amazing microwaveable heat pack that is filled with wheat & lavender. The smell is divine & it stays warm for hours. You can find a similar one here.


If like me you have stomach issues NSAIDs will be off limits to you. This can be frustrating as ibroprofen in particular is recommended for so many pain types. Which is my I love ibroprofen gels. Again this won’t eliminate severe pain, but it can make you a little more comfortable. I find it very helpful for my fibro knee & shoulder. It is also fantastic for back pain. Ibroprofen gel is available OTC in any chemist, but at around £6 a tube for the strongest formula that can add up. If you qualify for free prescriptions it is worth asking your GP to prescribe it. 

Bringing heat & gels together is Tiger Balm. The balm can be rubbed onto the body & has a bit of heat, but also has anti inflammatory properties. The aroma is a love it or loathe it affair, but I’m firmly the former. Bizarrely I also found this product really good when I had a chest infection. Perhaps it was just the toy boy rubbing it on my chest that felt good, but hey, whatever works! I recently discovered that a similar formula is also available in stick on patches, so you can also use the herbal remedy on the go. I know there can be ethical worries about Chinese medicine, but fear not, dragon & tiger balm are entirely cruelty free. Both products are widely available in places like Holland & Barratt. Again if you are on a budget keep an eye out in pound shops as they sporadically stock them. 


My final suggestion is swimming. I love to swim. My body rarely allows to me do much in the way of exercise, so swimming is a boon. Since the water supports the body stress is lifted from weight bearing areas, which can relieve pain. I find can stretch my body whilst swimming in ways I simply cannot outside of the pool. Swimming is also a great low impact form of aerobic exercise, meaning you can stick two fingers up to the notion of ‘ no pain, no gain’. Even if you aren’t a strong swimmer or can’t manage actual laps, getting into a swimming pool can still be beneficial. Just treading water, holding onto wall/float & kicking your legs or simply walking in the water can really help. Best of all, you can finish your session with a soak in the hot tub or a sauna! 

Obviously you should consult your Dr before trying anything new. I’d also like to be clear that I suggest these to compliment medications & traditional treatments. I take a cornucopia of medications plus physio & other treatments. I could not function without them. I would never advocate ignoring medical advice. 

Don’t patronise me…

I’m struggling to sleep tonight. My  pain got a little out of control last week & so my dr upped one of my pain meds. It was quite a big leap & my body hasn’t been behaving since.  My mood hasn’t really been behaving either. It took a dive earlier in the week for, I imagine, a combination of reasons. Perhaps feeling so bizarre, or the pain or an upcoming anniversary. Who can say?

On account of the above there have been days when even getting out of bed has been difficult. Yesterday was one those days, everything hurt & I was very foggy from the meds, but things had to be done. Bronan had to be fed. I had to return some important calls & I had to put my bin out to be emptied.  Dragging myself out of bed was a struggle, but I did it. So, up I got, flung on whatever clothes were lying on the bedroom floor, brushed my teeth & completed those tasks as best as I could. I did these not because they would lift my mood. Nor did I do them as part of an ‘action plan’. I didn’t derive any sense of achievement. They needed to be done, so I did them.


Later, I tried to write, but couldn’t concentrate for more than a minute or two. It occurred to me that I hadn’t eaten all day & perhaps something in my stomach might counteract the effect of my medications. My fridge contained some broccoli that had to be used today or it would only be fit for the bin. So, I steamed that broccoli in the micro, poured some boiling water on noodles & flung soy sauce over both. I didn’t cook because it would make me feel that I was worth taking care of. I simply used the ingredients available to feed myself in the quickest manner because otherwise, I would not eat.

I tell you these things not because they are interesting. I certainly don’t mention them because I want applause. I merely draw your attention to these mundane activities as they are the reality of day to day life.
THEY ARE NOT SELF CARE.
Mental health organisations & increasingly, just anyone are constantly spouting the merits of self-care. I am so tired of hearing this bullshit. Everything I do does not have a therapeutic purpose. Mental illness (or for that matter physical) does not define me. I am a single woman living alone. There are always tasks that need taken care of. I take each day as it comes & do as much as I can manage. That’s just survival. In that respect I am no different from anyone else. Obviously my illness can make simple jobs difficult. Things the average person may take for granted come harder to me. That doesn’t change the nature of life. I either keep living to the best of my ability or I lie down and die.

To label each chore or treat self-care is to rob me of my basic humanity. I am no longer a person, but a collection of diagnoses’. Illness becomes my defining feature. I strenuously reject that characterisation. To measure my wellbeing by how many dishes are in my sink is insulting. Similarly, to minimise serious conditions by suggesting a nice dinner will make it all better is also offensive. A cute badge with a star & I took my meds or A childish phrase is not going to brighten my day. 

I live my life as fully as possibly. I enjoy whatever I can and try my best to endure the rest. Doesn’t that sum up most people’s experience? I don’t hear anyone congratulating ‘non-mentals’ or ‘non-spoonies ‘ for continuing to exist, so why are they patronising me?

If my thoughts on this offend you, then just imagine how I feel when several times each day I am confronted with the cult of self care. If it works for you, cool, you do you. However, don’t suggest I have a bath with candles to get over terrifying flashbacks. Don’t tell me to give myself a wee treat to combat searing pain. Most of all don’t belittle me by suggesting my daily drive to survive is ‘self care’. Keep it to yourself, darling or prepare for my wrath.