Confessions of a chronically ill mum #16

So much can change in a week. Such as estrogen dissolving as fast as an effervescent pill. Or progesterone over egging the pudding and ballsing up those chemical reactions, more catastrophically than Walter White on his first cook. I’m speaking in metaphors because I’m bored of saying the same thing about how I feel being attributed to hormones. My boredom doesn’t make it any less true though.

This week I’ve felt my patience being stretched and my rage reaction time quickening. My body has shown signs of a flare up in similarly dramatic fashion.

Aside from that though, there have been good things happening too, and as is the new and improved version of myself; I want to concentrate on those. Not because I’m feeling overly positive, but because I am trying to extract the positive from days when there feels like there hasn’t been any.

On Saturday I wrote a caption on Instagram that saw me confessing to finding parenting both of my children, whilst alone and with physical limitations, really fucking hard.

The reason for the post wasn’t even so much about the kids, but more in relation to how I feel about myself and my disabilities. I know they are there, I know how much they impact me, and you all know, because I write about it. However, in my everyday life I find myself playing down how bad things get sometimes, because I’m worried about what other people might think. Or even sometimes because I do go as far as gaslighting myself and telling myself that I’m the problem, rather than the fact that my being unwell, is the problem. I compare myself to other mothers, as many of us do, but I compare myself to healthier more able mothers, and that is not a fair comparison. Being kinder to myself and remembering that I have limitations is an important part of healing. Even if that healing must occur every luteal phase, every flare up in chronic pain, with every migraine attack, I must remember it’s not my fault.

After I posted the above to Insta I packed up a picnic for Ciara and I, leaving the boys at home and we went out to meet up with our friends. A girly afternoon in the woods was exactly what was needed to distract myself from overthinking, to calm down and get some reprieve from the noise and the chaos of being home alone with both children earlier that morning. It did wonders for my mood in lots of ways and was great bonding time for Ciara & I. We made a den in the woods and ate chocolate cakes and cold pizza slices from tinfoil. Ciara climbed trees and used her imagination whilst I got to sit and have a moan to a friend. It was therapy, and simultaneously a reminder that these are things I need when I’m not feeling great. When I’m overwhelmed and unable to fight through the mental and emotional fog of everyday life. I need to take a break, get outside, force myself out the door and just enjoy being away from my phone pinging a comparison inducing notification every 75 seconds.

That little outing also reminded me, it’s ok to not love every second of motherhood. Reiterating to me that my not loving every second of motherhood, has no bearing on my love of being a mother. Which is an insurmountable amount of love. I just needed the quiet time to be able to reflect on that.

Outdoorsy but make it chill
Unless you’re six, then make it fun.

This coming week I have a lot going on in general ‘life stuff’ terms, and I need to remind myself of the things that soothe me when my mental health, hormones, or physical ailments are drip feeding their steady dose of hell into my body.

Do you have a go to self soothe aid? During therapy last year, one of the first things the psychologist advised me to do was to create a self soothe kit. I plan to write about this in more detail in a new blog, but until then, do share your personal self soothe favourites – but keep it clean! 😜

Confessions of a chronically ill mum #12

Three months I’ve been writing these, and they are basically just a way for me to brain dump, to offload and overshare. However, when I look back to number one, I can also see personal growth. Those confessions I wrote in the first few chapters of COACIM were so much bigger than the ones I’m bringing to you now, and that’s because things have changed.

So what’s been happening? A lot actually. But before I get into it, I have to admit that having Shaun off over Easter for a week was undeniably helpful. This week, I am feeling done in. My joints hurt, I have brain fog, migraine symptoms and generally feel under par. It’s only two weeks since I last felt like this which is proper shit as it means this menstrual cycle, PMDD and Fibro symptoms are massively overlapping, and ergo exacerbated. The last week of the Easter hols was just me and the kids, and surviving that after a week away and all of us contracting norovirus, along with my normal and new symptoms, was pretty tough going.

You know what though, I’m proud of me. I’ve been relentless with this PMD Awareness month stuff, now having raised over £500. I’ve had so much support, mostly from strangers online as per, and those IRL proper mates that show up for you whatever shit you’re spouting about on the gram. I also participated in two instagram lives, one with IAPMD and one with The PMDD Collective; you can check them out below.

LIVE with Brett from IAPMD
LIVE with Emily and Ally from
The PMDD Collective

I’ve finally got childcare sorted for going back to work. Kaiser has had his settling in sessions, he did really well, especially as it’s at two different settings. We’ve been together for such a long while now that I imagined him to be clingier, turns out if you have snacks and give him lots of attention, he’s anyones’

I have a few things going on health wise. Mentally, I’m trying to prepare for being discharged from the perinatal service, and it’ll come as no surprise that one of my confessions is that, I’m terrified. I’m worried of how I will measure up without a team of people supporting me and fighting my corner. Physically I’m still waiting on test results for a second diabetes check, and appointments for my heart issues as well as physio.

I’m due to return to my job in less than a week, so I’ll have to adjust to life back on the 9-5 for those two days. I’ll confess that I’m not looking forward to it. To say that I am would be a lie. In all honesty, it’s nothing to do with work, they’ve been great and supportive. It’s all to do with me! The reality is I don’t know how I’m going to fair as an increasingly disabled person, and mother of two other persons, back in the working world. With our financial situation as it is at the moment though, there is no other viable option and this makes me very stressed indeed. I feel like I am only just coming through my recovery journey of perinatal mental illness and regaining my mobility, whilst still managing an ever increasing list of health problems, and I’d be lying if I said I didn’t think work was going to upset the equilibrium I’ve finally established in my everyday life.

I’ve realised since being involved with IAPMD this month how much I love my advocacy work and I’d really love to be able to keep giving back, writing and making a difference but again, I don’t know how achievable that will be once I’m back doing what I have to, to put food on the table. That said I still really want to expand my blog, upload the fiction I’ve been working on and share that with you all. I also have a new interactive feature coming soon!

Dear Steph is a new agony aunt style feature where I’ll be answering your questions about almost anything! Just for fun. My friend Amy keeps on telling me how wise I am, and during my collaborative work with House21 I was often told I should cameo on their Dear Donna feature! So I thought fuck it, and decided to go for it.

I hope you’ll send in your problems or confessions for me to comment on to divamumsteph@hotmail.com adding Dear Steph in the subject line. It can be 100% anonymous if you so wish. Serious and funny/questions/problems welcome.

There are a few restrictions, mainly because I need to protect myself and make sure I’m offering support to anyone who writes in. (Knowing my luck nobody will -LOL)

Important to note, I’m not a professional so if your topic includes any of the following please seek professional support.

  • Sexual assault
  • Illegal activity
  • Health issues that require a medical opinion or further investigation.

I will happily give my advice, personal opinions and share my experience on mental health and or chronic illness, but if you require specific medical advice please seek support from a qualified practitioner.

I want to hear your most embarrassing moments and comment on them (no judgement here) I want to hear about your relationships, struggles, motherhood woes and workplace dramas. Is your mother in law driving you up the wall? Have you fallen out with your best friend? Maybe your partner is giving you the ick? Or are your kids’ as feral as mine and you need some reassurance that it gets easier? Basically I’m trying to fulfil one of my younger selfs’ dreams of having my own agony aunt column in the back of That’s Life magazine. So do me a solid and send in your woes and faux! Dear Steph will start as soon as your emails come in, and I’ll respond to one a week, once a week, on a Thursday.

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

Another new year

Last year I wrote a post titled Unhappy New Year and in short it was about what a shit show 2020 had been for us all. At the end of the blog I gave myself some small resolutions, to be less judgemental and apply less blame, find the positives etc. It wasn’t until I read back over the post that I realised I have achieved most of them. I think my mindset is definitely different these days. Whilst I won’t pretend I’m Lady Optimistic I am more optimistic than the me of previous years. I’m also, so much more self aware. Aware in general. I have therapy to thank for most of these changes.

The first half of 2021 was awful for us. Worse than 2020, tenfold. With me being in a wheelchair, trying to homeschool and work from home, a baby on the way that I wasn’t managing to care for as I’d hoped, gestational diabetes along with other complications made me so unwell. It all felt as though I was on a rapid decline. As Kaiser’s due date neared, my mental health worsened. Most of you know what happened next, but in case you don’t, I was hospitalised and my labour induced after psychiatric evaluation. It was decided that for the sake of my mental health and the health of our baby, he needed to be born.

I’m six months postpartum now and on my road to recovery of perinatal mental illness. I’m working hard to regain my mobility, manage my chronic illnesses, care for a newborn, and five year old, keep house and balance my hormones, oh and avoid covid, there have been many, many, bumps.

However, I believe despite the awful ordeals we have faced, the fact everyone in the house contracted covid over Christmas resulting in a real scare with Kaiser (currently all still positive and feeling really quite bad) as well as living with perpetual lack of sleep, we’ve smashed 2021. As a family we have worked harder than ever, there are broken pieces where we were once whole, and there have been rivers cried too. Our marriage has taken a hit, and parenting two children instead of one has been a huge change for us. But, having weekly therapy, finding a decent medication combination, owning my shit, being brave, digging deep, along with all that mindful bollocks previously discarded as useless information I’ll never need has been put to great, life changing use.

I don’t believe I made it through 2021 on luck or a wing and a prayer. No, I made it through this year with sheer determination, love, and hard mental graft.

Two days ago I was back in the hospital I birthed Kaiser in. I’ve been there only once since I had him, and that was recently to find out I had a tumour (benign) in my left breast. During that appointment I had my mum holding my hand. The second time was two nights ago, alone, with a baby who’d just tested positive for covid along with a husband at home who’d also tested positive so couldn’t be there to support me and our son.

I sat in the hospital room and cried alone, whilst the nurse told me my baby would need oxygen. I cried again when his levels were back up and we were told we could go home.

I’m still suffering anxiety six months postnatal, but most of the time it’s in response to ‘normal’ anxiety provoking situations, like hospitals and poor health. The rest of the time I’m using the tools it’s taken me six months to master, to manage it. I’m trying to show myself compassion and I’m working really fucking hard on gratitude too.

As I write this late at night after finally getting my kids to sleep, oscillating between shivering and sweating buckets with a fever. I decided to think about whether I have any resolutions for 2022, and the truth is I do, but my main and most important one is, I plan to continue to heal. For myself, and for my family. My kids deserve a mum who isn’t falling apart at the seams, and I deserve the love and care I so readily give to others.

If I could give my readers any advice for the new year, it would be that you treat yourself with more kindness.

Ok so I’ll throw in a few more for good measure… here goes

  • Love the people who treat you well
  • Have empathy for the ones that don’t (unless they’re just c*nts, then fuck them) but try the empathy first. It might surprise you.
  • Stay in your own lane. Comparison is the thief of joy.
  • Tell people you love them, tell them often.
  • Stay in the present, if it’s not happening right now, it’s not happening.
  • Get more fresh air.
  • You don’t need permission to rest.
  • Don’t look back, unless it’s to see how far you’ve come.
HAPPY NEW YEAR FROM ME AND MINE TO YOU AND YOURS XOXO

All I want for Christmas, is you.

What a year. I can’t believe that just six months ago I felt as though my world had imploded without any real warning. I woke up one day and didn’t feel like me anymore. I was afraid for my sanity, for my mobility, for my family and our future.
I couldn’t see past six hours without having a panic attack let alone six months.
I led in my bed, day in day out for 7 months, unable to walk.
As my son’s due date approached my mental health declined.
I felt consumed by all consuming, claustrophobic, fear. Wracked with perinatal anxiety.
I was broken.
I guess that’s why they call it a breakdown.
But here we are now, a family of four, surviving interminable routine and carnage, poor health and therapy, work and parenthood simultaneously.
Loving each other through it all.
It’s not been easy, it’s been hard getting here, ridiculously fucking hard in fact, but it has paid dividends to keep going.

I’ve got everything I need this Christmas. Genuinely. I feel so content with my family. When I say this I mean content as in they are enough, not content as in getting loads of sleep or life being perfect, unfortunately! Ha! I know how blessed I am, I’ve always known it, but I really feel it this year. After everything we’ve been through I have a desire to keep them close and let them know how much I love them. The only thing I want for the big day is more of that contentment (as well as good health & freedom for all, world peace too, but I’ll refrain from getting too ambitious.)

I am not the same old me I was last Christmas. Granted, I’m still a stressy, messy, bitch with a foul mouth who is always exhausted…. but I am also different. I’m softer round the edges. More vulnerable I guess, if that’s possible, but stronger too. I believe that what doesn’t kill us can leave us with a lot of unhealthy coping mechanisms, and I by no means, have ditched all mine. I haven’t turned into a preacher or someone who promotes their new lifestyle as some big epiphany, desperate for people to follow. But I am interested in change, in finding fun and contentment in new places. That makes me further away from those unhealthy coping mechanisms than I once was and I’m proud of that. I suppose what I’m trying to say is, I’m more open to learning better ways to survive and enjoy the mundane in the everyday.

I’m less inclined to sweat the small stuff whilst simultaneously being more interested in the big stuff.
My tolerance for a lot of things is greater, but less for small talk. I’ve always struggled with chatting aimlessly about the weather and the like, I’m too nosy, too inquisitive, I want to meet people and know them, not skirt around edges with hollow pleasantries. Similarly I’d rather be quizzed on my life than have it glossed over, skipped or ignored. I’m over hanging on to dead end relationships and chasing things that don’t bring me joy. Whether that be friendships that are more effort than fulfilment, or doing things I don’t enjoy anymore, for example forcing myself to be somewhere I don’t want to be. This year I have no desire for big boozy nights feigning Christmas cheer. I mean obviously the pandemic has some impact on those kinda outings, but I honestly think even without the plague, I’d still just want to be snuggled up close with my nearest and dearest.

Transitioning from one child to two has been a lot. I’m already anxious about how I’m going to cope with a baby that hates sleep whilst I’m trying to eat my turkey dinner. However, I’m ok with those kind of anxieties, they’re normal, they make me feel normal, whatever ‘normal’ is.
The biggest change of all for us this year is of course the fact we have an extra person round the tree to love. And love him we do. ❤️🎄

104 days postpartum

It’s funny how days are marked by our worst memories and our great ones, are often lost in mind with no clearly accessible date and time attached to them.

At 5am on the 11th October I woke up, eyes barely even open before I was thrust deep into a panic attack. My body wracked by the sensations, my mind reeling from the racing thoughts. To say I was devastated is an understatement, this is the first acute anxiety attack I’ve had in just under three weeks. Three weeks isn’t very long to most people, but it felt joyous to be able to think clearly for a while without the feeling of dread hanging over me. Without ruminating and catastrophizing. Without the pain in my teeth from my clenched jaw. Without the fatigue that hits you after yet another night of insomnia. Sleep when the baby sleeps… haha, if only.

What I’ve noticed though, in the fifty something days since I last updated my postpartum progress, is how hard I’ve tried to implement grounding techniques. How dedicated I have been to my recovery. I started a new contraception eight weeks ago to try and eliminate my periods, ergo reducing symptoms of PMDD. I’ve been on similar contraceptives in the past for the same reason. In this instance I have bled non stop for eight weeks. I am so run down I have ulcers in my mouth and reoccurring shingles pain, requiring more medication to combat. Around the same time I started the new contraception, I also switched my migraine medication for a slow release version and this has helped immensely with preventing attacks.

My son is now fifteen weeks old, he can hold a toy in his hand, chatter and laugh. but he rarely sleeps. His charming little face is one of the most beautiful I’ve seen, that is when it’s not screwed up like a tomato that’s past it’s safe to eat stage, wrinkly in places and as red as hell.

In the last one hundred and four days I have felt every emotion to ever exist. My days are now spent trying to wrestle a screaming baby into a car seat I’m unable to lift, and reading books about Biff and Chip with the big kid. I don’t get any opportunity to rest, which is hard when you have an illness that requires it. I’m mortified to admit some weeks it takes me three attempts before I manage a shower, and even then it’s hurried.

I guess what I’m trying to say is, I find it much easier to remember all of the hard bits, the downs, the panic and the tears and I’m very good at choosing to ignore the successes. Deeming them unworthy in their minutiae. Such as; getting the baby down for a nap on the first attempt. Watching his sister cuddle up to him or gently bounce him in his bouncer with her foot, whilst idly watching yet another episode of Bluey. The beauty in the pumpkin patch photoshoot we’d had recently, a windy autumn day surrounded by orange and forest green, the memory of the rain pelting down on our clothes afterwards, and rushing home to drink hot chocolate.

Watching my son grow, though hard, has not been wholly clouded by my poor health. It’s been beautiful in so many ways, and I’ve enjoyed very much time spent with him. I can feel my confidence as a mother returning somewhat. I have my first night out coming up and I’m anxious. When my daughter was a baby I couldn’t wait to get out, feeling more than ever that I needed to let off steam. Now the only steam I’m interested in, is the steam coming from a freshly boiled kettle and the piping hot tea that comes after the boil.

My pelvis hasn’t healed, I am still struggling with walking as with any physical activity. Unfortunately, it does seem this is likely to be yet another long term problem, but we knew that was a possibility.

I use the word progress to explain how far I’ve come and it’s the reason I’m utterly disappointed when I come up against relapses like that earlier panic attack. Im devastated when Im unable to rationalise my intrusive thoughts. Yet in spite of relapses, hard days, long nights and tragically cold cups of PG tips, I’m grateful. Grateful for the support I’ve received from an amazing perinatal mental health team, from my family, and from those few close friends who selflessly and with conviction, care enough to remind me I’m doing ok.

They say it takes a village to raise a child, and there are many people whom have contributed to my progress. Thank you. And here’s hoping for another 100 days of progress to follow.

To my friends (and family) who don’t have fibromyalgia.

Hey,

Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it ‘gets old’ boring even, to hear me talk about it ALL. THE. TIME. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is…. I’ll always have this condition now.

A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathising, I’m learning to be ok with that. I have to be. Yes it hurts my feelings, even when I don’t tell you it does, and when I do.

It hurts my feelings when you ignore the honesty of my illness related posts, and only engage in the cute pictures of my kid. It hurts my feelings when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything.

You see, this illness makes me irritable, I get angry with my body, often. On some days, better days I might seem totally ‘normal’ I might even resemble ‘the old me’ but please know, that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today, might affect me tomorrow or days later, for days, sometimes weeks after the event.

I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you, I’m not doing though, is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterwards. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, that you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me.

I am not broken, not entirely, I’m just bent, learning to live again (almost a quote from a P!nk song there) Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you I’ll always be able to fulfil them. Just know, when I make them, it’s always with the best intentions. I’m trying, all the time, new ways to manage this condition. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am.

I wish I could go back in time and do more things with you before I got sick, but sadly time travelling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain.

If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before.

If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one. Like life itself – It’s a work in progress. And I’m forever trying to be better than I was yesterday.

Love, me X

A letter to myself.

I wrote this because I had to make sense of my thoughts as mother and an expectant one, one who is trying to find the strength to be both whilst battling the demons that are chronic illness and mental health.

Reach out they said, so you did, and it didn’t immediately help, and when it didn’t help people stopped reaching in. You are not their responsibility, this is not their fight, and they have their own shit going on. In the middle of a pandemic everyone has their own shit going on, some worse than yours. People can’t take on your shit too. They don’t want to, they shouldn’t have to, so what are you supposed to do now?

You have spoken to your doctor, you’ve got yourself in touch with organisations that can help support your mental health, but your physical health is declining further, your hormones are sending you crazy and you’re in limbo. You’ve requested help, but there’s no magic pill, no imminent cure for your troubles. So what happens next? You’ve written a thousand blogs, almost as many poems, you’ve cried, screamed and forced yourself to calm.

Keeping busy helps, keeping moving, except you can’t do anything because you’re immobile. Stay positive, think happy thoughts, so you try, really hard to do both but your mind is clouded in worry. You wonder sometimes if you have the strength to be the person everyone needs you to be. To get back some of your fire. You’re losing interest in the things that have previously brought you joy, like reading, and writing, you feel blocked. Getting outside is increasingly difficult and because you’re not going anywhere you’re not getting up and ‘ready’ because your whole body is racked with pain you’re not focusing on getting outside, it feels too hard.

You know you need to nourish your body to give your growing baby what it needs but even eating is becoming boring, a chore, you don’t have the ability to stand at a countertop and cook, you can’t be bothered to decide what to have next so takeaway’s are your go to, but they’re distorting the view of what you see in the mirror. Your need for medication increases with your pain and with that comes more guilt because it’s not just about you anymore.

You tried to do ‘yoga’ and got stuck on the floor for an hour with only your four year old home. You tried to shower but you can’t stand so even cleanliness is taking a backseat. You have to depend on your husband to help you in and out of the bath and you feel your self esteem being crushed further, your sense of humour no longer able to gloss over the hard parts with a funny anecdote.

People care, you know that, but they don’t know what to say, so they stop saying anything. You feel like a shit friend because you know your life is consumed by your disability and as much as they can’t take on your burdens you can’t take on theirs either, so thats another stick you can use to beat yourself with. You’re still trying to be everything everyone needs you to be but it’s draining. You feel like your lack of positivity confirms your worst fears – that you can’t be saved.

You feel more connected to strangers you talk to online than anyone you know in real life, because strangers can’t judge you in the same way friends can. They don’t expect you to man up, or try harder because your lack of effort doesn’t impact them.

You spend most days led down trying to find a focus, trying to be better, to do better, to find some joy in anything.

Glimmers of hope come from your loved ones. They carry on loving you despite your struggles and your children carry on depending on you. You know that without them, your life doesn’t mean all that much to you, but to them it’s everything it means everything, you are their everything and so you snatch the glimmers, you pocket them, and you remember that this period in time isn’t forever.

Your life isn’t what it used to be and you grieve it, desperately, sometimes so much that it physically hurts, but you’ve grieved it before and you’re still here, you still have a life. You still have a future. It’s a new version, and not everyone will walk your new journey with you, not because they don’t care (that’s just your brain telling you that) but maybe because they don’t understand and your own acceptance of the things you can’t change takes time.

Learning to live a newer life, a more conscious life, a life that has limitations, isn’t easy. Sometimes the grief will be daily and feel renewed, but someday, in your future you will look back on this time like you’ve looked back on all the other hard times, times you thought you couldn’t live through and you will know that you survived it. You survived it because you put one swollen foot in front of the other, because you held on when you thought there was no hope for you, and you found a way.

You know with certainty, that you have grown. This is a set back, this is not a failure, your health has declined as a result of you trying to do what’s best for your baby.

So Steph, the message is clear, when you really aren’t ok and you feel like you’re alone with your troubles, don’t take it day by day, don’t wait for tomorrow to be better, take it hour by hour, do the things that you feel able, even if that is nothing, because it won’t always be nothing. Each day that you wake up is you doing something. You’re surviving, and when you find a way to survive you can find a way to thrive.

X

Therapy is not just for picking up broken pieces

A couple of weeks ago I had some news that really turned my world upside down a bit. I haven’t talked about it much because there is so much other stuff going on, but it’s been a struggle managing my emotions. I felt myself spiralling a bit, like I do every so often, usually when I’m due on. I decided to try and get ahead of this, so I called my GP who offered to refer me for talking therapies. I’ve had talk therapy before, many times actually, sometimes it’s helped other times not so much, but I’m never opposed to it, because I believe when you’re feeling mentally unwell you need to be open to trying things that might help. So I gratefully agreed to have a telephone appointment.

The lady I spoke to ran through a standard mental health questionnaire, then at the end she said I score mildly for depression and anxiety. I told her yes, it is mild at the moment, but I’m trying to intercept it before it gets moderate-severe. Her response was that I don’t meet the criteria at this stage for ongoing therapy. I’ve had this conversation before. I’ve written posts about it before too. I feel like this is the reason we are in the crisis we are in with mental health in this country, because we are waiting for people to be in their own full blown mental health crisis before offering them any support. I know that whilst the NHS is under so much pressure their resources might need to be elsewhere, but this isn’t a new thing; even before covid people were being turned away for not being depressed enough. Because I don’t want to die I’m not in crisis, because I’m not self harming or hurting anyone else I’m not in crisis. The sad thing is… I have wanted to die. I have self harmed and I have hurt people I love in the process of all of that. This time, this time I wanted to ask for help before I spiralled, before I lost control and needed to pick up the broken pieces of my life for the hundredth time.

Instead I got given some reading material and a thank you for my time.

This is not enough. Luckily for me. I am well aware of my triggers, I’m aware of my privilege and I have a great support network in my family. There is always the option to go private, but with my physical health being as rubbish as it is I usually need to top up care with massage or B12 injections, therapy is an added expense and when you’re down to the last penny you usually have to sacrifice one or the other. The trouble is with therapy is, it’s not just a one off cost. You have to pay this every week or every month sometimes forever and my fear is I’m one of those people that will need therapy forever. The thing with physical health is it affects our mental health too and so if I sacrifice the things that make me feel physically better, I’ll also be putting myself at a higher risk of feeling mentally worse. The struggle is real.

Life is hard right now for everyone and there will be people out there in worse situations than myself, probably not getting the help they need either. Learning to live through these times has been a colossal trek and we are all still hiking up cliffs hanging on for dear life. But mental health is not a new problem, it’s not a craze or a trend, it’s a continuous battle in the modern world, a battle that if not fought early and hard, can be and too often is, deadly. It’s a life threatening problem that we as a society have still not been able to tackle.

It’s great to post about mental health and raise awareness, open up and find solace in each other online but still this isn’t enough. Saying it’s ok to not be okay is one thing, telling people to reach out is another, neither are cures for a breakdown or social anxiety and sometimes they’re not even easy to do. I may know I’ll feel better if I reach out but doing it is a different matter all together.

So what can you do if you don’t meet the criteria for intervention but are still struggling? You can prioritise self care. You can access online support. You can reach out to family members or friends if you feel able. You can make time to read, write, do a course that makes you feel better about yourself. You can practice breathing and you can call any of the below numbers for professional support. If financially able you can look into finding private therapists that are able to support you long term. What you mustn’t do, is feel like the lack of free support available means you’re not worthy. You are. Whatever your next move is, please take this reminder that your struggles are valid. Your life still matters and you are going to make it.

To the you that feels too much.

Some days if not many, I feel like life is too much for me.

Too problematic

Too demanding

Too stressful

Too hard

Too expensive 

Too ominous

So I had a think about how I can break it down, because in all honesty I am all too often feeling as though I am one meltdown away from a psychotic break, and that isn’t a healthy way to live.

That’s when I realised problems are unavoidable, but I have the power to stop reacting to them and start tackling them with a clearer head. 

Most of the demands I speak of, I put upon myself. I am not able to meet the unrealistic expectations of my own making. However I am able to lower my expectation all together and treat myself with more kindness. Celebrate the small successes and work a little harder to focus on a solution based outlook.

Stress is part of life, but it doesn’t have to be the soul dictator of mine. The only reason it sinks it’s claws deep into my psyche is because I feed it with my adrenaline fuelled responses. I am highly sensitive and I am emotive but I don’t have to let my overriding emotion be stress.

Life is hard. It can be. It is. Though treating myself with disscontempt seems to come easy. Why is that? What can I do to change how I view situations? Could I perhaps allow myself more time to process difficulties? I think considering the amount of time I spend feeling like I’m climbing Ben Nevis it’s possible there’s room for improvement on my processing techniques.

Expenditure is essential to the cost of living, but it doesn’t have to be essential to my happiness. Material things are not that important to me so why do I always feel like I am missing out when I can’t afford stuff? Maybe because I spend too long comparing myself to my peers instead of accepting like our thoughts, opinions and lifestyles, our budgets are different.

I don’t believe a positive outlook will automatically grant you a positive life. What I have learned over time is the people I have come across with bigger problems than my own, people facing harder challenges and worse health, all seem to be more optimistic than I am. So maybe, I’ll try and count my blessings more often and throw away the curse that is negativity. I gain nothing from it and it gains everything from me.

My whole life I have felt as though I am too much for some people. It has taken me 30 (and then some) years to accept, they are just not my people. I’ve been battling with the ‘too’ instead of accepting just being me. It’ll come as no surprise to my family and friends that I feel this way because I’ve felt for a long time like I’ve been told I’m….

Too loud 

Too dramatic 

Too sensitive 

Too outspoken 

Too fiery

Too wild 

Too intense 

Too blunt 

If I had to describe myself now I would still use a few of the above words, but I would drop the too and I’d try and rephrase, because nobody has the right to tell me I am ‘too’ anything.

Yes as I mentioned, I am highly sensitive, but that makes way for empathy, for compassion. I care, not too much, there is no too much. I am caring, and that is something the world needs more of. It’s ok to care. In fact it’s good, until it isn’t, and you care too much about what other people think. I don’t want to do that anymore. 

Yes I am fiery, but only when it comes to things I believe in, I am passionate and I am driven by things that excite me. They are not the same things that excited me 10 years ago. Now I am excited by books, and words, and art. I’m excited by flavours and food and Sundays in bed. Safely replacing 10 jägers and a scrap outside the kebab shop. I’m excited AF when my daughter comes home with a bronze star or shares her sweets with her little best mate.

I am blunt, because I can’t fake anything. It’s funny really that I’ve been coined a ‘drama queen’ because my acting skills are fucking awful. My face will say everything my mouth forgets. If anything, I might be ‘too’ honest, but only because I genuinely believe honesty is always the best policy, and my sensitivity, believe it or not actually makes me quite a good judge of character. I don’t have the time, and I DEFINITELY ain’t got the energy to pretend. 

I WAS wild, now I am about as far from wild as a candle flickering into winter giving off vague scents of unwashed hair and 2 day old pyjamas. I am the opposite of wild, providing the opposite is not chilled. No, I’m not chilled, because I worry. I worry because I care. I want to be better. I want people to see me for the better person I am because I deserve that. Are you still with me?

I am still intense, because once I start speaking I really spill my guts. My opinions are emotive, and I have no façade. I do not hide myself behind pretence. I am intensely vulnerable and I am open. 

This can be a blessing and a curse. I overshare, but I also over love. I know if I was advising a friend on these qualities I would tell them both are ok.  

I am a complex mass of physical pain and panic. Of memories I’d rather forget and a future I’m desperate to control. To panic is to care. To be aware of your faults isn’t heroic or admirable, not really, but owning them and trying to fine tune them takes effort. And effort itself is admirable. 

I have had struggles, but they are not worse or more severe than those of others, they are just mine, they are part of me. They shape me, and I have no doubt. Not one speck of doubt, that I am a better person because of them. 

I am not too much. 

I’m just me.

You can also read this blog here at House 21

Here we go again, sertraline.

When I recorded last months #PMDD diary I mentioned I’d started taking antidepressants again, but only during the luteal phase of my cycle. Unfortunately my symptoms have not improved greatly in the months since I decided I didn’t want to be here anymore (again).

When I say not improved, what I mean is not enough for me to do this on my own. So here I am again, where I’ve been for almost 20 years, trying to get a grip on my mental health with the help of antidepressants full time.

I am still here, so I’d be lying if I discredited their power in helping me get through dark days, but when you live on a cocktail of drugs for survival, it can make you feel like you’re never really moving forward, just treading water.

Antidepressants for breakfast, painkillers for lunch, more antidepressants for nerve pain at tea time, a side of beta blockers, followed by occasional benzos for supper.

I often feel like I’m failing by being so dependent on medication, but I weigh it up with my need to be able to function.

I’ve made many positive changes over the years for my mental health.

I very rarely drink alcohol anymore and have drank only 3 times in all of 2020. Though I feel no better for it really, I’ve not missed hangovers, and truthfully, I’m scared of it now.

I’m scared of doing ANYTHING that might trigger a migraine, a flare up, PEM. I’m scared of walking too far, or dancing too hard, or staying still too long. I’m scared of things I used to enjoy, and not enjoying, is depressing. I know I feel better if I don’t over plan, if I have a day in between activities and I know I feel better if I get enough sleep, but trying to implement that into a modern world where we have to work, and parent and show up for shit, is hard.

When I think about how hard it is I also try to think about how lucky I am.

Because if I don’t think about the good things I will be forced to believe there are no good things, and that is simply not true.

So how do I remind myself of everything that’s great when all I can see is what’s not? I look at my family. That’s it, I see them and I am reminded of my luck 💗 Though I don’t imagine they feel the same about being stuck with this bitch 🤣 This is your Tuesday night reminder, to TAKE YOUR MEDS💊

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. ✅✅✅💗

Tired and Needy – the follow up to Love For Lockdown.

I wrote a post a little over a week ago about my love for lockdown. I still love lots about it, like the family bubble and not having to worry about the outside world. In fact I still love it—full stop! Buuuuuut, I’m also losing my shit a bit. I’m still worrying about stuff that isn’t on the scale of importance to most people.

Like it’s a rollercoaster, right?

Up, down, plateauing and plummeting.

I struggle with life under normal circumstances I don’t ‘cope’ well on a daily basis. Well some might say I do cope well, and others think I’m mad.

— Balance

Writing is my salvation but I have to admit there’s little inspiration flying about my gaff, so I’m losing my creative flow and my anxious mind is finding room to fill up the creative space instead.

If you suffer from anxiety you may relate to some of this. Or you might think I’m a nut job. I am.

I have a brain that understands rationale but doesn’t practice it.

I have a desperate need for reassurance and it’s exhausting to be honest: it’s exhausting for me, it’s exhausting for my friends, my family, and  it’s exhausting for my husband.

Years of therapy and we’re no further forward in killing the bug that is my insecurity.

I know where it comes from – I don’t need a £50 an hour shrink to tell me about it (again).

I know it’s not rational or reasonable but I genuinely can’t help it.

I can’t help how I feel inside my head sometimes. I say sometimes, because it’s not all the time. Sometimes I am content, it can be fleeting, but it does happen.

I am one of the first people to harp on about getting the help you need when you need it for your mental health, but I have had help, lots of it in abundance, and variety.

I’m not fixed, because you can’t ‘fix’ people.

I manage better, better than I did 10 or 15 years ago, but my neediness and insecurity hasn’t dissipated, it probably never will, because it’s part of me.

It’s in my makeup to worry, fret & overthink.

During this lockdown I’ve occupied my days with all sorts of filler. Some of it has been really pleasant and some of it has been unintentionally damaging. The trouble is you don’t always know which is which until it’s too late and even things like reading books and watching TV can play a whole heap of havoc with an anxious mind.

If you too are feeling tired and needy I can only reiterate the importance of having a mental clear out! You’ve probably heard this a lot during the span of Coronavirus. I’ll say it again anyway.

Take time to find things that bring you small wins.

—Something that makes you grateful.

—Do something you enjoy like painting your toenails or going for a walk.

—Cook something exciting.

—Phone a friend.

—Be wary of what you’re watching and reading. I love nothing more than crime thrillers to read, but sometimes they get inside my head and it can create a state of heightened anxiety without me even realising it.

—Pick something you love about yourself and focus on it for a little while.

—Cuddle your kids and remind yourself you’re doing your best.

—Most importantly, be kind to yourself. It’s a tough time for all of us.

You’re not wrong for feeling how you feel. You can’t help it, but you can try to do little things that reinforce the positives. I’m trying to take my own advice today. I’m trying to do a few small things that help me feel better about myself and the current situation. Some days are all consuming and it’s ok to fall apart every now and again.

Feeling guilty about it won’t help. Instead try and concentrate on what’s needed to put yourself back together again.

I won’t profess to own the secret to a positive mindset, it’s something I battle with daily, but it’s also something that really does work if you can get the can of it. Positive minds attract positive vibes.

Love For Lockdown

People keep saying things to me like ‘can’t wait to go out when is over’ as if it’s expected that we are all super excited about socialising again. We must surely all be desperate to get to that overcrowded bar with friends we’ve been avoiding for ages?

No, I’m kidding – normalcy is an exciting prospect, but it seems we’re all presumed chomping at the bit to get back out and paint the town red, and the truth is, I’m not.

Don’t get me wrong, I can’t wait to get my freedom back, buy what I want in shops of my choosing, and get my lashes done, but socially I feel quite content in my little family bubble, for now at least.

Just my husband, daughter and I, plodding through the everlasting days with nothing to rush for. Working to an untimely schedule. The only million dollar question being, what’s for tea?! Mealtimes providing fattening structure to our days.

That’s not to say I don’t like people, or want to see my friends and family, I do desperately. But… and there is a but. Before lockdown, I always got an overriding sense of FOMO. I’ve mentioned before how living with a chronic illness and not being able to do all the things I could do pre diagnosis, can sometimes leave me feeling left out of social events. It’s probably true that it’s a lot to do with me, and less to do with the organisers of said events, but…. lockdown, isolation, quarantine, whatever you want to call it, has actually massively reduced my fear of missing out.

I mean obviously, because we’re all missing out now aren’t we? Or are we?

What’s your perspective?

Let’s skip to the facts, coronavirus is a killer, it imposed on our world as we knew it a few months ago, and it’s definitely nothing to be THANKFUL for. However it is making me appreciate life’s simple pleasures.

It’s making me feel less of a let down about not being socially available. I don’t have the constant conflict of having too much in my diary, or not enough, subsequently playing havoc with my insecurities. It’s awakened me to getting the best use of my time too. I even wrote a schedule last week and felt suitably joyous when ticking it off. A lot of people love a Mrs Hinch style list, and I’m usually not one of them. I’m the people admiring said list slayers from the sidelines whilst winging it and getting much of nothing done. Ticking off the days activities this past week has given me a sense of achievement, one that I don’t get from the daily grind of the 9-5. I think it’s fair to say that I’m coping ok. It’s not easy for any of us, and I won’t pretend being imprisoned in your two up two down semi is a holiday, but we’re making the best of it. My daughter just turned four and she was due to have a party and we were off on a caravan holiday.

When cancelling these I cried for days, I didn’t know how to explain it to her. After a week at home I asked her again what she would like to do for her birthday and she said……Feed the ducks please mummy, we have a local moat at the back of our house and so feeding the ducks is what we did. Along with hunkering down in the Lay-Z Spa for most of the day. Which may I add was a lockdown online impulse buy.

My heart swelled with pride at this almost four year old’s ability to adapt to getting pleasure from the simplest of activities.

It’s my own birthday this week too and I feel uncharacteristically calm about not having any plans. It’s no secret I am a diva and usually I pack in more than I’m up to achieving at this time of year, then get pretty upset when I crash and burn. Lockdown is providing me a safe haven with my family and I don’t have to feel sadness over people not coming out for another birthday booze, or disappointment that I didn’t lose the weight I wanted to for intended booze up, because I’m not having one.

I know this probably sounds ridiculous, maybe even a little sad, but I feel quite the opposite about it. I would love to see my family on my birthday, but I’m also glad I’ll be spending it with my very nearest and dearest, and I didn’t have to consider any other kind of strenuous activity.

I know in the long term, this new found comfort will fizzle and I will be back to climbing the walls – but for now I’m just rolling with it. Whilst keeping me and mine safe.

My only concern left for lockdown apart from the obvious and outright depressing (keeping our jobs/ home schooling etc) is how many snacks my kid is eating. The child is likely to ‘I want a snack’ us to our deaths if she’s not careful. I’ve tried and failed explaining to her we aren’t allowed to panic buy KitKats!

Article also available to read here https://www.house21.co.uk/news-opinions/love-for-lockdown/

Just another chronic illness blog

When I got diagnosed with a chronic illness I didn’t get the same quota that you get when you’re told you have pneumonia or you break your leg. I didn’t get ‘get well soon’ cards or flowers – which I guess is a good thing as get well soon doesn’t really exist in the chronically ill community. But we still appreciate the sentiments.

I don’t get much love for my illness, I get eye rolls and people annoyed at me talking about it again, but I don’t get much love.

I get people accusing me of using it as an excuse and comparing me to people with the same problems. But not love.

I get disbelieving shakes of the head and funny looks when pulling into a disabled parking space, but not love.

I get people telling me to be positive and exercise more but I don’t get presents or hugs.

Imagine waking up one day and not being able to get out of bed, yesterday you could of ran for the bus, but today you can’t move. Now imagine feeling too ashamed to talk about it for fear of being dismissed, accused of faking, or mocked. Because that’s what living with chronic illness is. That’s what happens when people can’t see your pain. They assume it doesn’t exist or that you’re making it out to be much worse than it is.

Even your friends think you’re exaggerating, and even your family get fed up when it encroaches on plans with them yet again. When I tell people I have to pace myself or I’m not feeling too good, I literally brace myself for their reaction. Nobody ever says, it must be so hard, I admire your strength.

That’s why I write it down, and that’s why I share it on the internet with people whom I’ve never met. Because some of those people get it and they aren’t (at least not visibly) rolling their eyes at yet another post. People are happy to offer you their support for the occasional bout of misfortune, but when its ongoing nobody wants to get dragged down with it. I get it! I really do, I’m a realist, I know it’s hard for people to understand, and it can be miserable to hear about, but imagine living with it.

Imagine just for a minute that it’s you who’s sick all the time. Then imagine feeling like nobody cares. Feeling like you’re burdening people whenever you talk about it, feeling guilty for being sick, imagine how lonely that gets.

Everyone has their own battles and some people have it much worse than you or I, that’s a fact. Some people have the same illness on a different level and some people have diseases that are killing them.

What living with a chronic illness has taught me is not to make assumptions on people’s lives, to believe people when they tell you they’re suffering, and to remember to check in on your friends. Pain changes people, in different ways, sometimes it’s empowering and when you’re on top of it you feel like you’re winning, other times it’s dark and makes you wonder what’s the point of living at all if this is how you’re destined to feel everyday. It’s overwhelming and hard to explain – but by sharing my experiences with it I’m remaining sane. I’m not hiding and so that is the reason behind yet another chronic illness post. If you know, you know. 💜

View this post published on The Mighty here.

https://themighty.com/2020/01/when-people-cant-see-your-chronic-illness/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/