Confessions of a chronically ill mum – I’m back

COACIM had a bit of a hiatus. This was unintentional but life has been both busy and really quite difficult in recent weeks. I’ve not been as active on socials as I usually would. My youngest child Kaiser, has been quite poorly. This has coincided with both my return to work and my discharge from perinatal mental health services. You can probably imagine what I am likely to say next… Yes, I’ve had a flare up. An exacerbation of my symptoms is common with life’s stresses and I’ve been feeling pretty rubbish in general. Mentally, I am still coping. My discharge from PNMH definitely rocked the foundations I’ve built though, and it’s been a weird and destabilising week.

Migraine attacks have plagued me, I had been back to work just days when I had to leave early to collect Kaiser from childcare because he was so unwell. It was also my mum’s 60th birthday. We’d had a weekend away planned that my sister and I had bought her as a present, I wasn’t sure Kaiser was well enough for me to leave at home, and I wasn’t sure I’d be well enough to attend myself. As it turns out, I did manage to spend a few days away with my mum.

It was lovely, not just to chill out with my mum but because one of my great friends came up from Devon and stayed with us also. I don’t get to see her very often and always miss her dearly, so to spend a few days in her company, alongside celebrating my lovely mum’s coming of age, was amazing. Amazing doesn’t mean perfect though, unfortunately after a walk Saturday I spent all day Sunday in bed unable to get up and move my body freely without crying out in pain. Several times my mum had to come into my room and help my up out of bed and onto the toilet. My life’s reality is hard to accept always, but particularly when I’m supposed to be celebrating and bringing the fun with me. I didn’t drink any alcohol so there was no trigger warning, just a body that doesn’t function well at times, and those times are usually times I am trying to live. Somedays I thrive but most days I just survive.

Kaiser is recovering well but the four top teeth that all cut at once in his tiny little chops, are still giving us hell, as is his endless cough!

I’ll confess, I felt a whole heap of ‘mum guilt’ about leaving him with my husband. When my babies’ are unwell I want to be with them, comforting them. I also wanted to be there for my mum to celebrate her sixtieth. I don’t know why I feel the need to explain this, but I did ensure Kaiser’s symptoms were well managed before leaving him to recover with his dad and without mummy cuddles.  

What’s also been really arduous has been talking myself down when feeling anxious, without the support of the community perinatal team helping to keep me in check. My discharge with them was emotional. I have been supported by them for a year and that’s a long time when you’re spending it living day by day, often hour by hour, sometimes minute by minute. I’ve had a few wobbles already and I was only discharged Wednesday, when thinking about moving forward and how I navigate this brave new world on my own I often overthink and find myself panicking. I made great connections with my key-workers’ and whilst there were always clear professional boundaries, it’s not easy letting go of relationships that have served you so well. I felt really truly supported for the first time in my life by professionals, and I’m worried I’ll have to go back to fighting for basic support and healthcare. I write this knowing it could be worse, but always wishing the system was better.

An Instagram post I wrote just a couple of days before discharge

For now I need to get back into the habit of better self care. In recent weeks I’ve resorted back to eating crap, the fact I’m not able to move much again doesn’t help, but it stops now. I’m restarting getting my diabetes coursework back out, along with my DBT handbook and I’m taking action before things spiral again.

I know what I need to do I just need to learn to maintain healthy habits and ditch the many unhealthy ones I seem to find so easy to stick to!

In other news – you may have seen on my ‘News’ page that I’ve been nominated for two awards in the Mental Health Bloggers Awards this year, and I’d really appreciate it if you’d take a few minutes out of your day to give me a vote. Your support continues to mean so much to me. Vote 🗳

Confessions of a chronically ill mum #10

Can’t believe it’s been ten weeks since I started these musings. It’s amazing for me to look back and see the peaks and troughs, highs and lows. I’m very aware that I started writing #ConfessionsOfAChronicallyIllMum quite soon into starting intense Dialectal Behavioural Therapy

For me, I can really see how therapy has helped me come to terms with a lot, and also manage life with chronic pain, physical illness, flare ups of all conditions, as well as PMDD. I would be lying if I said that my hormones are no longer upturning my life every few weeks, because the shift into luteal is still very prominent, despite being on birth control that claims to reduce the frequency/stop ovulation, I am definitely still ovulating. The good news though, is that knowledge and coping skills really are power when dealing with any kind of life trauma, even if that trauma occurs repeatedly.

But and it’s a big but…. No matter how many tools are in your arsenal for the bad days, no matter if you have lots of support or none, there will be days that completely derail you. I know, because I’ve had several myself this week. A visit to the hospital to talk through the treatment options and risk factors for my cardio vascular health, the penultimate therapy session for said DBT group, meaning discharge from the perinatal service is imminent, and being a few days post ovulation, these factors sent me into a spiral. I was wracked with anxiety, up all night, ruminating, latching onto intrusive thoughts, and getting angry and paranoid. I know one hundred percent that I am due on. I know this is premenstrual, and on its own it’s bad enough. Having these additional life factors occur during the luteal phase has highlighted to me, that my coping skills are not absolute.

Kaiser is still teething, he’s been teething since the day he was born, I swear! And he still never sleeps at night. I thought Ciara was a needy baby, and she was, in lots of ways, but this kid is next level. He’s also (dunno if I’m allowed to say this) a typical boy! He’s into absolutely everything. Spending all day oscillating around the furniture, then throws himself off of it 4 or 5 times for good measure. You cannot take your eyes off him for a second and it’s hard. I’m exhausted. I’m also always keyed up and on edge trying to keep him safe.

Despite knowing these things are par for the course of being a woman with a Premenstrual disorder and many chronic health problems, and despite knowing this with Kaiser is all part of #mumlife it’s still not remotely easy! Because for me, it’s not just #mumlife it’s #Sickmumlife. Every hour of every day is spent chasing this kid around and I don’t have the energy for it. I also suffer dearly for the privilege of being parent to two beautiful kids. I have to pay for my time with them, in energy depletion and excruciating pain. I am robbed of time with them because of PMDD and the crippling anxiety it brings with it. I lose weekends with them to migraine and fatigue, and I struggle to provide for them because I can’t turn up often enough to do my job! Also… getting any government help for people who need it is like pulling fucking teeth.

Don’t get me wrong, I’m not saying for a second that I have it worse than most, I know that’s not true. I’d also never say that I am unlucky, because that’s also not true. I just want to sometimes be able to say it’s hard and for someone not to try and offer me green tea suppositories, or a commentary on why their life is harder.

I’d like for people to stop dropping in those two little words at least. Eg: At least one of them’s at school. At least you’re not really disabled. I am! For fuck’s sake, I am!!

Having to prove or feeling like I have to prove the status of my health & illnesses is draining. When at the hospital Thursday, as I hobbled in to the consulting room the nurse asked me what I’d done to myself?! I was so fed up by her question that I literally just said ‘I’m disabled’ because it wasn’t enough that I was wearing a sunflower lanyard stating that I have hidden disabilities, whilst walking like John Wayne after four days of bareback. She still felt it appropriate to ask the question. It made me uncomfortable and I didn’t feel up to offering an explanation. This proved to me that we’re still a long, long way off from wholly accepting that if you don’t look a type of way, you must not feel as you profess to either.

Confession this week is this: Despite doing a lot of work on myself and learning to let go of lots that isn’t within the realms of my control, I still sometimes feel bitter. Radical acceptance has helped me a lot, but there are days, like those mentioned above that I’m still so angry at how my health seeps into every single aspect of my life. I confess that I am terrified about returning to work because I don’t know if I am going to be reliable enough to hold down a job, even a part time one. I confess that even though I’m getting better at understanding my limitations I am still sometimes furious about them. 

Ciara had a birthday party yesterday and it took every ounce of energy I possessed to turn up. To greet the other children and their parents and act like I wanted to be there. She had the best day, and I felt a lot of guilt around how I felt towards the party. But, it worked out in the end and we made it! Sometimes it’s having no choice that actually pulls you from the darkness. Sometimes, choice or not, that isn’t attainable. I’m glad I made it happen yesterday.

Confessions of a chronically ill mum #7

We started well. The weekend the kids and I went for a short walk on our own. This was a big deal because I rarely go out alone these days, and it was the first time I’d been out on foot with both children. As my health has worsened so dramatically in recent months, I have developed quite significant, but understandable, health anxiety! I took the win Saturday, rested in the afternoon and woke up Sunday ready to attack the day. But it didn’t quite work out like that. I woke up feeling extremely fatigued to the point where I couldn’t keep my eyes open and had to have a nap mid afternoon. For most of us with fibromyalgia this is normal, particularly following a day in which we’re more active. However, for me, fatigue is also a symptom of the pro-drome phase of migraine.

Being the hormonal mess that I am, I have noticed migraine attacks increasing in frequency again in the last two months. 2am Monday morning I was woken by the head pain, swiftly followed by cold sweats, hectic fever and vomiting. Monday was a write off. I spent all day in bed unable to watch tv or read and silently crying in between naps. I’ve said it before, but migraine is the most debilitating symptom for me, even more so than not being able to walk well, because migraine is a complex neurological disease that affects everything!

Fast forward to today, Thursday and I am feeling better. Not by any means ‘well’ but I was able to get out yesterday and I haven’t needed my husband to stay home from work to care for me. I also managed to get out this afternoon even though I couldn’t think of anything worse at the time I forced myself to do it and I have to say…. I’m converted. All the times people said to me ‘you need to get out’ while I led in my bed riddled with pain and anxiety, I thought those people were prize pricks to be honest, but I can see there’s merit there. I will say it’s not as simple as just getting outside when you live with chronic and or mental illness, and even in motherhood it can be hard to just get up and out. Let’s be real here it takes longer to wrestle a screaming baby into the buggy and pack your nappy bag than it does to do your weekly shop! But if you can get outside, you may benefit to some degree. For me the benefits are:

  • It’s a scenery change from the monotony of mum life.
  • I feel a sense of achievement if I’ve been able to do something, even if it’s as simple as popping to the shops.
  • That sense of achievement rewards me with feel good endorphins.
  • It’s so much easier (for me anyway) to be ‘present’ whilst in nature and not dwell on negative thoughts.
  • It’s free!

During pregnancy when I ate every meal in bed and couldn’t get down the stairs, going out was not only a physical impossibility, but it became mentally terrifying. I avoided leaving the house for so long, doing it now feels alien, but it also feels good. I feel like I’m taking back some control.

I don’t have any major confessions this week, other than I’ve spent a lot of it feeling sorry for myself and on occasion a little bitter about how shit and unpredictable life can be when you’re unwell. I’m worried about how I’m going to do my job in a few months when I’ve already cancelled a Keeping In Touch Day because I was so unwell. However, those feelings were scuppered by guilt as they always are when I look at the bigger picture and remind myself how lucky I am to have the life I do. I’ve also learnt that life is more fun and fulfilling when you’re grateful for the tiny things. Like a hot cup of tea or getting into bed with a good book.  Kaiser, my youngest, is an absolute rogue. I’ve had to take deep breaths a plenty in the last couple of days whilst trying to stop him climbing the stairs and then throwing himself down them. Dunno if this is a boy thing but fuck, it’s hard work. 

It’s easy for me to write this today because today has been such a huge improvement opposed to earlier in the week. That’s not to say I won’t feel the sadness and resentment again in the near future, but it means today I choose happy. We don’t always get a choice, and so on the days that we are gifted one, we have a responsibility to ourselves, to make it a good one.

Included at the bottom of this page is a link to ‘Buy Me A Coffee’ (or book, in my case) please don’t be put off by this!
Currently, Divamum makes no money, and whilst I love writing, in order to keep growing I have decided to accept donations.
Just to clarify you are in no way obligated to make a donation and at no point will this become mandatory, it’s just there as an optional extra for anyone who would like to and all information is available via the link. https://www.buymeacoffee.com/Divamumsteph

Avulux Vs Migraine

Flashes in your peripheral vision that slowly etch their way into both eyes, overwhelming fatigue with nausea that fills your mouth and makes your stomach roll. Pain in the base of your skull, around your eyes, tingling in your face, maybe in other body parts too. Before you know it you are in bed with ice packs strapped across your eyes, the need to eradicate light from every source immediately is paramount.

Not again. Please not again. You took your meds. You’ve been taking preventive meds every day for years, onset medication like triptans may also be used, but sometimes leave you feeling worse, blood pressure sky rockets and the explosion in your head makes you contemplate heading to your nearest hospital. Are you having a stroke? There’s absolutely no way to continue your day, you can’t walk, you can’t see and the pain is making it hard to speak.

You know it’s a migraine you’ve had them for twenty years, but what if this time it’s not just a migraine? Why aren’t your pain killers working? Sleep is not forth coming. Sleeping through this kind of pain is impossible. Tomorrow you’ll call your doctor and ask for more meds and they’ll tell you there’s nothing more they can do.

Randomly you get offered to try some glasses that block out light known to trigger migraine. You roll your tired eyes and think it can’t be that easy. I’ve tried everything what are these glasses going to do? The skeptic in you isn’t sure about this, but the desperation to ease further attacks makes you relent.

This is my story and this is how I came to hear of avulux glasses.

Avulux reached out to me in January this year. They didn’t offer me free glasses instantly, they asked to meet with me online to find out my symptoms and if Avulux would be suitable for me personally. I explained that I think my migraine maybe related to hormonal changes because of the increase in frequency and severity during my pregnancy, but because all of my migraine attacks start with aura they were confident Avulux may be able to help.

After meeting with the Avulux team and learning a lot about the science behind the product I was intrigued and excited to try a pair for myself. Avulux lenses are like no other light blocking glasses on the market. If you’ve researched migraine treatment you will know you can pick up a pair of blue light blocking glasses from Amazon for around £25.

So what makes Avulux so special?

Avulux filters up to 97% of the most painful blue, amber, and red light that have been shown to incite migraine attacks and increase headache pain. Avulux actually let’s in soothing green light to ensure there’s a fair balance of light filtered vs passed through, thus it’s comfortable to wear them indoors or outdoors and they don’t cause further light sensitivity nor do they dark adapt one’s eyes. They don’t alter colours or vision and you can still see clearly wearing them. 

Avulux suggest that if you use the glasses at the first sign of migraine aura, or other migraine symptom onset, you get the best results. For those with more than 15 headache days per month, they suggest wearing them continuously as a preventative. And don’t just take their word for it, read here the experiences of Avulux users for yourself. Avulux Reviews

So, here begs the next question. Do they work for me?

I have suffered from migraine since aged thirteen, I am now thirty three, and over the years they have increased alarmingly in frequency and severity. I have been trying to manage migraine with preventative medicines for the last four years, accompanied by onset medication such as triptans and painkillers. Since becoming pregnant and having to drastically reduce and remove certain medications migraine has attacked me every 3-4 days and an attack usually lasts 2-3 days. This has been constant for the last twenty weeks. When my Avulux glasses arrived I was almost waiting for a migraine to strike, and like clockwork three days after their arrival it began.

I woke with a pounding in my head that accompanied visual disturbances and vomiting. As soon as I woke I was certain the day would be a total write off. My Avulux glasses went on at 8.30 am. By lunchtime I was still very nauseous, but the pain in my head had not increased at all almost unheard of during a migraine attack. Though I felt fragile all day, I was able to carry out activities that are usually forbidden during migraine, such as read a book and watch television, use my phone and communicate with my family.

I woke up the following morning feeling exactly the same. This isn’t unusual, as mentioned attacks usually last a minimum of 48 hours. Again I used my glasses upon waking, and again I was able to function, not feeling fantastic but not in the depths of despair with unimaginable pain either.

My husband was skeptical, maybe it was the placebo effect? But I am confident that had I not been wearing Avulux I would have been in the full throes of a severe attack. Avulux were very clear during discussion that their lenses are a migraine treatment and not a cure. They also advised some users suggest that wearing Avulux reduces symptoms enough for them to carry on their day. This tallies up with my experience. I didn’t feel cured, I didn’t feel amazing, but I also didn’t feel inexplicable pain. For me personally a reduction in severity is a monumental step in the right direction towards a better and more controlled life with migraine. The following week the same happened twice, I woke with head pain, eye pain, fragility and fatigue. This time I didn’t reach for pain medication instantly, I applied my glasses first. And low and behold it staved off the migraine pain again, and allowed me to celebrate upon finding out the gender of my baby that evening with my family.

For these mentioned reasons I highly recommend Avulux as a reliable and sustainable treatment for migraine that comes without side effect or risk to the user.

Further advice

If you suffer with chronic or ongoing migraine you will know that unfortunately a cure has yet to be found. If it’s a cure you are looking for, you won’t find it here, or in fact anywhere. What you will get from wearing Avulux is confidence that symptom severity will be reduced. They are a recognised migraine treatment in both the UK and Canada. They make no false claims and they are available to try completely free for sixty days. If that isn’t enough to tempt you to take the leap forward for a better life, you can relax in knowing you can pay for Avulux in payment plan instalments. The Avulux team have also kindly given me a code DIVAMUM to allow my followers to receive $25 USD off when purchasing you can purchase through my aff link here Divamum Money Off but ensure to also add the code at checkout

Avulux haven’t cured me of my illness but they have helped me find relief even on the really hard days.

Pregnant and chronically ill.

Some of you might know my story already. I married my husband in January 2020, we did it just the two of us and it was amazing, but since our wedding, lockdown and covid-19 have presented challenges, as it has for everyone, I’m not naïve enough to believe I’m alone with that and I know there are people everywhere that have it a lot worse than I do.

For me though, my health deteriorated again and baby making was not on the cards for us during lockdown…. or so we thought.

We had a baby in 2016, and she’s a healthy, sassy four year old, but her start in life was hard, on her and on me.

My pregnancy was not an enjoyable experience, I didn’t feel well for a single day of it. I was debilitated by hormonal migraines and nausea throughout, and by 16 weeks I was on crutches diagnosed with Symphis Pubis Dysfunction- a condition that causes your pelvic ligaments to become stretchy and relaxed, making walking painful, the same condition had me in a wheelchair by 25 weeks completely disabled. Later I had preeclampsia, I was admitted to hospital and after several attempts a doctor finally managed to break my waters, my contractions were then hormonally induced. I often refer to labour as the easy part after 9 months of what felt like torture, but honestly, none of it was easy for me.

I was taking antidepressants throughout my pregnancy to manage my mental health, and as a result my daughter was born with Neo Natal Abstinence Syndrome.

A condition where babies are born withdrawing from drugs they’re exposed to in utero. I wasn’t warned about this, I was told the medication I was taking was safe for my baby. Withdrawal was something I assumed only illicit drug using mothers experienced, I was wrong.

She was in NICU for 10 days and then she screamed for 15 hours a day for almost 10 months. I’ve since spoken to people who were on similar medicines and they’ve had different experiences so it’s important to note, I’m not trying to scaremonger here. I believe in looking after your mental health, but there is no dressing up that it was a very traumatic time for us. I think the consensus is not to force mums to stop medication that keeps them well, and of course this makes a lot of sense, I just wish I had been armed with facts sooner. I was peri and postnatally depressed, suicidal at times, and it hurt. It massively effected my pregnancy and birth experience, my early bond with my daughter, and I don’t consider it a positive time to reminisce about.

Given the story so far you’ll have probably read/heard me freak the fuck out at the thought of baby no 2. Yet here we are, we got bored in lockdown. We ran out of things to do, we also ran out of condoms. (That was a joke btw don’t @me) Shaun always wanted baby number two, and for the last year Ciara has asked for a sibling, but the truth is I never wanted to be pregnant again.

But I am, kind of by accident, almost certainly by fate.

In truth, I’m petrified. I haven’t acted happy about it, because I’m not about being pregnant, not really. I know how ungrateful that must sound, and let me be clear, I want the baby, I love being a mother, it’s my life’s biggest achievement. What I don’t love are the effects pregnancy has on my health and well-being.

I battle with guilt daily about my dislike for pregnancy, because I know I’m lucky to be able to birth children.

In an ideal world I would have weaned off all of my medication before conception this time, but I have a chronic illness, one that takes over much of my life. I am constantly met with new symptoms, making it impossible to imagine a life without medical intervention. You know when people say ‘you’re pregnant not ill‘ – Well in my case I’m both. Most of the time giving things up in pregnancy is par for the course but what about when you’re giving up drugs that have kept you well for years.

So, I’m withdrawing from several different types of medication at the moment, but I’m still not medication free and I might not ever be. It’s hard on me mentally, to know I could go through the same thing twice with NAS and having a baby in NICU.

In my dreams this pregnancy would be totally different, I’d be fitter and healthier, mentally stronger.

Unfortunately it hasn’t worked out that way. I’m not going to miraculously become well whilst living with a chronic illness, (chronic = ongoing) if anything it worsens as the years progress. I haven’t gotten better, and I feel as awful as I did in my first pregnancy if not worse, because there’s more to worry about – a lot more.

Midwives have classed my pregnancy as ‘high risk’ for preeclampsia and SPD again (I’m already struggling with this just 14 weeks in), and for diabetes, and that’s without accounting for my illnesses and the cretin that is Coronavirus robbing us all of joy.

I feel like somedays, even before pregnancy, I was barely hanging on to my ability to cope as a functional human being, do the fundamentals like washing and cooking meals, and yet I’m putting my body through this again and it already feels hard.

So what happens if I can’t look after a new baby?

What if they cry for 15 hours a day again and I have a breakdown?

What if Shaun leaves me for our skinny neighbour with muscular thighs and perky tits?

What if, what if, what if…..

It’s a redundant question, because what if I got ran over by a bus tomorrow?

I could cite an endless lists of what ifs, but to get hung up on them means I also need to think of the flip side, that being, what if things work out ok?

A pandemic is a big deal to the most hardened of us. So being pregnant with several illnesses and a penchant for going fucking mental at the first sign of a hormone shift feels ominous, but we’re doing it.

Baby 2.0 is coming!!

Aside from being terrified, feeling even more like shit than usual and eating everything in site, I’m optimistic, because despite ALL of that, this time I really do know it’s all worth it in the end.

I’m being seen by the maternal mental health team this time, an option I wasn’t (but definitely should have been) offered in my first pregnancy. And I have a plan for my physical health issues and medicines, it’s not a great plan, but it’s a plan that involves a lot of listening to my body.

On top of that, I have a family who have my back. We’re a team and we’ll get through it because we have each other and because we are lucky, and this, however hard it feels, is a blessing.

I wanted to write this, because there still feels much stigma around not loving every second of pregnancy and motherhood.

There is never a time when I feel unlucky in motherhood. But sometimes I feel unlucky in health, and pregnancy is hard on my health, it’s hard in general, as is parenting, at times, for all of us. And it’s ok to say that out loud.

Our journeys are different and we are forever a divided world on how to parent, because there’s no rule book and we all have our own unique way.

I wish I could flip a switch and love every tender second of motherhood, but my truth is, I don’t love pregnancy and my experience of newborns brings with it traumatic memories.

That doesn’t mean I don’t love being a mother, it just means it’s not straightforward. I didn’t want to announce my pregnancy without having explained how I feel because I’m sure there are other expectant mothers who feel similar to me that don’t have the confidence to say so aloud.

There’s so much pressure to say over and over again how much you love your kids, how blessed you are, and if god forbid you forget to mention that, obviously you don’t deserve to have them.

What I actually think is, all you can do in these times is YOUR best. There will always be people that are struggling for different reasons in every aspect of life.

When it comes to your baby though, I really feel, like your best is good enough and what works for you, what keeps you well and healthy is as important as protecting that newborn head.

We will delight in the birth of our second child as we did our first and we will get through the tough times because this time, we know they really don’t last forever and the long nights whiz by with painfully short years.

Motherhood is hands down the hardest, most rewarding job and my only goal is to be good at it (and to get to the end of this pregnancy with both of us in one piece)

NB: If you’re struggling with maternal mental health please visit Maternal Mental Health Alliance for support.

For fibromyalgia resources it’s FMAUK

And for migraines it’s Migraine Trust

Migraine – not just a headache

I have started writing this so many times. It’s a so hard to put into words the debility of a migraine, without it sounding like a bad headache. So I thought long and hard about how I would explain migraines in this blog. I really wanted you to be able to feel what I’m trying to say, so here goes.

It may start off fleeting, a small dot in your peripheral vision, a barely noticeable shadow that casts a darkness over tired eyes. Maybe it’s more aggressive with flashing lights, and in some cases temporary loss of vision. You might feel a sickening in the pit of your stomach, coming from nowhere and catching you unawares, making your mouth water. You may be struck down by overwhelming fatigue that leaves your body feeling laden as though immersed in treacle. Or maybe your jaw starts to hurt from clenching. Maybe you have a pain deep set behind your eye that trails up over your skull and down your neck. Maybe your period is due, maybe it isn’t. Maybe you ate cheese, forgetting it’s a possible trigger, or maybe you didn’t.

You take yourself off to bed with the view to recover within hours. Painkillers line your bedside table and you take each one in turn at the first sign of the migraine. You lie down, dizzy and unable to sleep from the pain which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across your forehead not quite reaching the parts that are pained. A few hours pass and you wake up, rush to the loo to be sick, or sit up and be so dizzy you need to lay back down. You’re shaking, you feel like you’re hungover from 10 JD & Cokes accept even a hangover from 10 JD and cokes would be preferable to this shit show of pain you’re feeling. You are unable to distract yourself. The only thing to do is lie there some more, phone in sick, cancel any plans you made by forcing yourself to pick up your phone even though it hurts your eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel again, only to get one back saying ‘you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.’

The day passes in a blur, you cannot eat, you cannot sleep, you cannot watch TV or read, and you genuinely wonder how much more of this you can take. What if it never ends? What if today is the day you don’t recover from this pain and have to live with it indefinitely? You feel shaky, your skin is greasy, and your heart rate has sped up to a rapid crescendo. Anxiety causing the pain in your head to worsen again. That hangover feeling leaves you exhausted, thirsty and drained, so drained. Your stomach feels as though you’re sea sick and the thought of leaving the house is too much effort.

Your doctor advised preventative migraine treatment, so you take 4 pills every night of your life in hope that it will prevent the migraine occurring at all. You get a piercing that promises a quick fix and for a month or so your migraines reduce, but they are not gone. Oh no, they are never gone. When you’re tired, when your period is due, when you drink too much caffeine and also when you don’t drink enough. If you miss a dose of those sacred pills. Just about anything can be a trigger to be honest and you wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so disabling, so soul crushing, so unpredictable, and so much more, than just a headache.

You can also read this blog here on The Mighty Site

Three things

I was having a little rest from socials wasn’t I? But the truth is I often feel so much relief when I express how I feel here, insta or on my blog, that it’s become a compulsion to just get it out of my head. This is me. Straight up. No bullshit. Being my true self.
I know I will never win any prizes for flying under the radar, but what of it?
My latest battle is a cycle of Mum guilt ergo
Wifey guilt. Guilt about work. Guilt about shit I did 15 plus years ago and since. Guilt about guilt. Guilt on guilt.
Currently I have this desperate need for a break from our diva child. It’s like a certified panic button that only she can force me to press, followed by an overwhelming sense of ‘This is her last summer before school take in every second. Finish that scrapbook. Build a fucking tree house and what not.’
I feel like I’m depriving her of valuable time and offering up instead stale days in front of a screen wearing 2 day old pjs.
We fucked off last week, down the coast for a bit of R&R. Our honeymoon holiday in the costa brava with a hot tub clad chalet got cancelled, and we’re still waiting for that refund so we settled for a caravan substitute. Nice caravan too, but of course I ruined it with an obligatory 2 day migraine. Throwing up battered cod into a 2×2 toilet with zero soundproofing and spending the following day with the curtains closed and crying about my uselessness.
It’s so traditional for me to ruin holidays with my health now, that we don’t even consider planning excursions without a day in between for little ole’ me to catch up.
Such is the Spoonie life. Ciara didn’t care less of course. She had Daddy to herself for a day and as always he dutifully complied with her ever growing demands.
So lucky am I to have him as my husband aren’t I? Queue more guilt about how the poor fucker just signed his life away to a woman only capable of frolics approximately 2 days a month – the rest of the month is spent recovering from that thing we take for granted called life.
Anyway whilst I’ve been torturing myself, and it has very felt much like torture in this chubby little head of mine, I got to thinking. So there’s a list as long as Peter Crouch’s leg that consists of why I’m the worst wife and at best, average parent, but I reckon there’s a few things I’m good at. Surely?
I’ve been using this app for a while called Three Things. (Not an ad! It’s a free app too) Every evening you are prompted to write 3 positive things that happened during the day. Somedays though, I just can’t do it. And somedays I’m so trapped in a negative spin cycle that I just don’t want to. So instead I’m doing something a bit different starting today. I’m going to write 3 things I like about myself, every day. It’s a challenge, but I have to get back on the positivity train soon, before I go off the track to no return.
3 good things might not occur on a day spent in bed with a migraine or crying into my pillow cause I can’t find the T-shirt I wanted to wear and I’m due on BUT…..What if I just decide that I have good hair, which I do (if a little grey under the ‘natural colour’ that I now dye it) or that my toes look cute on my tiny feet. Or that I did a good deed and I like myself more because of it? ✔️✔️ ✔️ 3 things. Everyday. I’m no therapist but even I know the key to my happiness isn’t hanging on someone else’s keyring. Whitney said it didn’t she?…. “learning to love yourself…” sing the rest. 🎵
So I’m starting today. I haven’t thought of the 3 things yet, so I can’t share them, but if you think of 3 things you want to share over here, please do. And even if you can’t, start with 1. Start today. And just keep going. Practice makes perfect. Pick something about yourself that’s a quality you’d want in a friend, or don’t. Maybe this is a bit ‘cheese on toast’ but I’m feeling positive about feeling positive, even if it’s just for today because one day at a time, right? Three things. ✅✅✅💗

No cure

Yesterday I had my first sick day in my new job. I’ve been there under 3 months. And until now, so far so good, been taking breaks on my days off, getting enough rest whilst still having a life, looking after myself, taking my medication. Then yesterday I woke at 3am feeling nauseous and it wouldn’t go away. It was bad I couldn’t sleep. I text my supervisor in the morning to say I wouldn’t be in and spent the rest of the day in bed with a full blown migraine. You know the ones where even your phone is too bright and your guts feel like they’re falling out of your asshole?

I’m home today too, the headache has subsided but the sickness is still there, I still feel weak and unwell and generally crap about myself.

You see the thing is, back in July I had a daith piercing and I was convinced it would cure my migraines. So to learn it hasn’t has really fucked me off. I also feel shit about being home. There’s no cure for migraine, just like there’s no cure for Fibromyalgia or PMDD and I have those too, but I feel terribly guilty about it. Because I’m not a skiver, I’m not a lazy bitch (unless I have a hangover) and I genuinely feel awful when I let people down.

When I first got diagnosed it was a relief, I had loads of text messages and social media likes, telling me how relieved I must be to know I’m not going mad. I was!

I had loads of sympathy messages too, but they have a shelf life. And when you have something that can’t be cured people get bored. They don’t understand why you’re still going on about being ill all the time. Everyone knows, you don’t need to keep banging on about it.

But I do need to. I need to because that’s the only way aside from the world all contracting the same illness, that people understand. It’s the only way to spread awareness and helpful tips. It’s the way I feel most comfortable explaining it and so that is why I ‘make such a big deal out of it‘ it’s not for the sympathy as let’s be honest that shit dried up years ago. It’s not because I’m craving those text messages that don’t often come anymore, it’s because they are diseases that nobody ‘gets’ nobody really believes.

You said you have a migraine but really it’s just a headache, here, take some asprin”

“So and so has fibro and she doesn’t go on about it all the time, she still works, she doesn’t even take medication”

“Yeah I believe she has it, but she definitely plays on it”

“It’s just a period every woman has them, stop moaning”

If you suffered migraine you would know an asprin is about as useful as a cock flavoured lollipop, once an attack has started. If you had fibromyalgia you would know it differs in intensity depending on a whole world of factors, even down to the weather! And if you had PMDD you would know that before your period comes there’s a good chance you may have considered the fact you’ve lost your fucking mind and begged your doctor to section you only to feel ‘normal’ again when aunty Flo pops in. If your mum had it and couldn’t work, or your sister, or your best friend would you say that about them too?

Anyway – the point of this post was more for me than you, the reader. It was more about assuaging my own guilt, because guilt is an emotion that the chronically ill can’t escape. I feel guilty that Shaun had to cook his own dinner after he’d been at work all day yesterday. I feel guilty that Ciara had yet another sleep over at nanny’s because I knew I wouldn’t be able to get up and see her off to school this morning because the medication I took last night meant it probably wouldn’t of been safe for me to drive, that’s if I even heard my alarm. I feel guilty for looking at my phone when I should be resting. I feel guilty for having a life on all of the other days because if I didn’t I might not feel this shit today. Guilty Schmuilty. It’s shit. It doesn’t matter how many well wishes people send, how many ‘you can’t help being sick’s’ I hear, I still feel guilty. I know I will always feel guilty until I get to a stage where maybe one day there is a cure, or maybe there’s something I haven’t tried that will help me manage better. I feel guilty for letting my family down on days when I’m bed bound. I feel guilty for letting my lovely new colleagues down on days I can’t work. I feel guilty for saying when I feel ill. I feel guilty for cancelling a night out or a meet up. But most of all I feel guilty when I make assumptions about other people’s lives. So if I’ve learned anything from having a number of long term illnesses, it’s never to assume. You really don’t have the number of someone until you walk a mile in their shoes. The likelihood is there’s people out there with worse problems than you and me. Kindness should always be your go to option.