Call for NICE to play nice with chronic pain sufferers!

For full transparency here is the article NICE published in relation to using alternative methods to treat chronic primary pain that has no known cause. NICE recommends

For the most part this starts well, offering people a range of alternative treatments in place of a prescription doesn’t sound so bad does it?

The issues here though, are plenty if you do in fact live with chronic pain. Many sufferers will have a) already tried alternative treatment options. Or b) Are still awaiting a diagnosis in the first place.

We know the opioid crisis is real, we know there’s a risk of addiction and dependency, most of us would give anything for adequate relief found elsewhere, but opiates aren’t the only treatment option available that’s in dispute here. Standard analgesics such as paracetamol and Non Steroidal Anti Inflammatory Drugs are also being branded ineffectual. What is particularly damaging is the statement from Dr Crisp that suggests pain relief doesn’t work to treat chronic pain, and antidepressants do.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them”

I’ve come to know many chronic pain sufferers that are indeed already prescribed antidepressants as an addition to pain relief for chronic pain. I’m yet to know any that find these effective in place of further treatment. I also know many people who benefit from holistic therapies and exercise and diet for pain management. The problem here is the assumption that everyone or nobody benefits from one type of treatment. NICE make some very encouraging points in the idea that collaborative discussion with patients will play a role in deciding treatment, sadly what it then does is states pain relief won’t be offered initially, leaving many people awaiting a diagnosis in agony.

If you’ve suffered chronic pain ongoing and for a long period it’s likely you will be hoping for a diagnosis. NICE addresses here that the prognosis isn’t always simple and a true diagnosis other than pain itself can be hard to find on occasion. Another of my issues with this statement is, people who are seeking diagnosis will be further fobbed off and advised their pain has no known cause without a full and thorough investigation being carried out. It also indicates that addiction to painkillers is commonplace, as opposed to people taking them in order to function and live a more fulfilling life.

Furthermore suggesting antidepressants come without similar risk or harm is also damaging. I have taken antidepressants and opiate pain medication on and off for twenty years, I’ve experienced withdrawal for both and I personally found antidepressant withdrawal a much more hellish experience, that said I don’t speak for everyone and I’m fully in support of medication being commonplace to treat mental health issues. What I’d also like is to not be branded or implied an addict for taking medication to treat pain.

I don’t dispute that alternative options to medication should be commonplace. My fear is the removal of treatment or the lack of prescribing in the first instance will lead to untold suffering and the search for pain relief elsewhere. Potentially from illegal drugs and under researched off label medications. You only have to look at Twitter to see the outrage from people in the chronically ill community to understand that this will impact us significantly.

As a mother and an expectant one it would be idealistic to not have a need for medication at all, but I like many other sufferers have tried countless attempts at reduction and abstinence. It doesn’t work, because my pain is physical and it’s real. To suggest psychological therapies in place of a prescription is another way of suggesting our pain is psychosomatic and not physical. Yet upon first analysis you couldn’t possibly know that to be the case. I don’t disagree that better information needs to be given as standard, that alternative medicine should be available on the NHS as standard and that exercise and diet are all impacting factors. I do however, disagree with the statement suggesting pain relief doesn’t work for chronic pain. Granted it won’t work for everyone, and granted NICE have advised individual plans will be made, but how many of us already feel judged on how we manage our health? I know I do, and I know hundreds of other people that do too. What would have been really nice is for NICE to include alternative therapies as standard without pillshaming people already taking medication or those seeking adequate investigations and subsequent pain relief.

Yes I have launched a petition and yes I have indeed read the guidance offered and I still feel strongly for the need for this advice to be overhauled and at the very least reworded in a more sensitive and less ableist fashion.

Not everyone can exercise. Not everyone can access alternative health care and not everyone will become an addict when treating their pain with painkillers even long term.

The petition is currently in review and will be shared when and if it goes live. I’ve also emailed NICE directly for clarification and I hope they are able to address the concerns of those of us that have voiced them.

I also feel the need to state: I am not suggesting everyone take pain medication for the rest of their lives to treat chronic and ongoing pain, I’m simply asking that we don’t have the option taken away from us.

A lot of noise

I make a lot of noise. I do. I talk (or rather write) honestly about my struggles in the hope it helps someone. Not just someone going through the same but maybe also someone trying to better understand a loved one. A lot of the time my honesty is met with kindness and I am grateful for that. Sometimes however it can deemed attention seeking and I wanted to address this a little.

I am seeking attention, but not for praise or pity, for recognition and understanding. Even some of my close friends and family still say things to me like ‘Well what’s wrong with you?’ And if you read my blogs you would probably already be of a better understanding. It takes a lot of energy to express our truest struggles, that’s why some people find therapy so triggering and this is why some people prefer not share because they don’t want to open up for fear of what lies beyond, maybe in the reaction of their peers. However this is also why advocates write and promote health issues. It’s not to say ‘hey look at me I’m thriving despite XYZ’ because most of us aren’t thriving the majority of the time. It’s not to say ‘hey feel sorry for me’ because your pity gains us nothing. It’s to say ‘Hey I have this….. if you haven’t heard of it here is a bit more information. It might help you better support someone who also has it, or it might prove useful to gaining a diagnosis, if you think you have it.’

It’s also to say ‘You’re not weak for feeling this way or thinking these thoughts, you’re not alone, and you’re not attention seeking for sharing.’

We all know their are people worse off than us we don’t want your sympathy to encompass us or your relationships with us. We aren’t asking you to change your behaviours to better suit us. We’re just asking for your support. So if you replaced the ‘attention’ in attention seeking with support you would see that all we’re really doing is support seeking, and trying to find allyship. We’re asking for your acknowledgment of our struggles and your belief.

What we’re also doing, is offering you our support. We’re standing in solidarity with you and saying we believe you when you tell us you are hurting. We’re opening ourselves up in promise to be more understanding of your struggles too.

Everyone can make noise, feel sorry for themselves and wish life was different. Everyone. It doesn’t make you weak to say so and it doesn’t make you an enabler to provide support to someone with a health condition. It makes you an ally. If we didn’t make any noise about our circumstances we would never be telling the full truth because to omit said struggles would be like saying we don’t have them, and we do. We all do! Whether they are similar in nature or totally different, each struggle is valid.

Telling someone who opens up about their struggle that it could be worse is not helpful, because they already know it could be worse, but for them it’s bad enough to mention. Telling someone to be positive is ok, but if they felt able to be positive they probably would be being so already. People don’t choose misery. If they did they wouldn’t be hoping to feel better in the first place they’d accept it and live with it.

So many things go unsaid and I’m tired of living in fear of reproach for how I manage my physical and mental health. There is no right way to manage, there are different ways that work differently for different people. But what works for one may not work for another it’s a lot of trial and error and countless days spent looking for new ways to live better. I’m not saying we should all make noise, but I am saying, if you choose to speak up in order to advocate for yourself or others you should be able to do so without fear of recrimination.

I was chatting to an online friend whilst recording a podcast about being our authentic selves. Feeling able to be honest about how we’re feeling is often part of the reckoning when wanting to live a more honest life. It will probably lose you some people along the way but if it does they aren’t your people. You are allowed to speak up, you are allowed to be honest about your feelings and if it makes other people uncomfortable you should be able to have those conversations without apologising for being honest. You are also perfectly entitled to be private, if being open doesn’t sit well with you, you don’t have to be, but you’re allowed to change your mind.

Being truthful doesn’t equal being negative. Speaking up doesn’t equal attention seeking. Putting your feelings out into the world doesn’t give any person the right to make you feel like shit. Make noise, stay quiet, fight for your rights or don’t, but whatever you decide, do it for you. Because you know yourself best, and you don’t have to suppress yourself in order to make someone else feel comfortable.

Unhappy New Year

So I think it’s safe to assume New Years Eve is cancelled this year, at least cancelled as we know it. Unpopular opinion maybe, but I’m so glad. I don’t get excited about getting dolled up after a week of eating more cheese than all of the mice in the country combined. The thought of squeezing myself into an LSD (little sequin dress) actually gives me nightmares. I also haven’t drank any alcohol since August so the a hangover that was sure to accompany me with celebrations will now stay firmly in my past, and maybe somewhere in my future but not in 2020.

Another reason I’m glad is I just don’t have the stamina for long drinking sessions these days. Alcohol triggers migraines, dancing for long periods exacerbates pain and booze also has a tendency to induce hangxiety, anxiety brought on and influenced by the onset of a hangover. I hasten to add, I’m also one of those people that needs a drink on a night out, otherwise I’m just happier in my pjs, so that’s where you’ll find me on this night in.

Kissing and hugging at midnight is not allowed with social distancing measures in place and so we probably won’t do much of that either. Maybe a mulled wine and more cheese to celebrate the beginning of another undoubtedly difficult year. On New Year 2019 I was 17 days away from getting married. I was eager and keen to start the new year off with a bang but this year I don’t think I’m alone in saying, I’ll be glad to see the back of it.

I’m not one of those people that moan about everyone’s New year new me posts, because I think if setting yourself new year goals helps you reach them, then just do you. It’s nobody’s right to shit on your parade. For me personally, I find I usually set myself up to fail so that’s why I’ve kind of done away with resolutions, but I’m definitely not opposed to them. I’ve recently gone from being someone with a chronic illness to someone with a chronic illness who is clinically vulnerable to covid, so I feel like the main resolution for me needs to be to look after my health better, again let’s not apply too much pressure, somedays getting out of bed is hard enough.

It’s a weird, weird time. Phrases like ‘when this is all over’ and ‘unprecedented times’ have become so ingrained in societal vocabulary I’m struggling to not grit my teeth at the sound of them to be honest.

I wanted to include some positives in this post because there have been a few for us as a family, but I kind of got berated for talking about being happy recently, as though I was boasting and aside from the initial feeling of reprimand, I get it. For some, maybe even most, this will have been the worst year of their entire lives and I by no means think it’s been a good one, I’m just trying hard to hang on to what I’m grateful for, it’s helping me cope amidst the chaos to be honest.

I’m thankful that I got to get married. I’m thankful I got to see my little girl start school, and I’m thankful to have people to love and to have people that love me.

But – I also want to say that if all you’ve done this year is survive, if all you’ve done is put one foot in front of the other, if you’ve struggled, if you’ve broken down, however you’ve coped. I’m glad you’re still here. I hope in 2021 we can all be less judgy. We don’t know people’s individual circumstances, so before posting about people not social distancing make sure you know for a fact those people aren’t bubbled up. Before you berate someone for not wearing a mask, make sure you know they aren’t exempt for medical reasons. I’m not saying their aren’t dickheads in the world blatantly flouncing rules making things harder for all of us trying to do the right thing, of course there are, but there are sometimes just people, using methods of survival that we have absolutely no idea about.

I, like everyone else want people to follow the rules to ensure this shit show is over quickly, but I don’t believe warring with each other is the way to get there. We can blame each other until we’re blue in the face but it won’t make an unhappy year any happier. I’m trying very hard to ditch the blame next year and accept some of the things I can’t change, and learning when to challenge and when to mind my own business.

Whatever your New Year looks like, if you have a vision board bursting with ideas or you’re just winging it, I hope that 2021 is better for everyone everywhere. We all deserve that.

This blog can also be read here: House21

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💊

We are still telling Mums how to feel?

I feel like I needed to share this. Not just to moan about feminism and stereotypes (though there is some of that) but because it irks me that the message isn’t yet clear. For some unknown reason we still feel it’s our right to tell other mums how to parent. How to feel. We are still putting mother’s in boxes of ‘she should’ or ‘you’d think she would….’

So to put this into some context for you, my daughter started school the first week in September. It’s her first year. Before covid she was at preschool 4 days a week, but since covid she’s been home with me since March. No childcare because preschool didn’t reopen until September either, by which time she was ready to start school. The most common questions I’ve been asked since people learned she was set to start school are 1. When are you having another baby? And 2. I bet you’ll hate it when she’s at school won’t you?

Note question 2 is in fact a statement, posing as a question. An assumption based on zero background information. It’s only merit is that because my daughter is starting school the presumption is I’ll have too much time on my hands. I’ll be bored. I’m her mother so I’m bound to miss her implicitly when she isn’t around for any length of time, but more so when that time is spent at school. Right?

Well sorry to act offended at your presumption but it does in fact feel offensive that you assume my life is less fulfilling when I am not around my child. There’s an undertone that when I state how, in fact I’m excited for her to be starting her new journey, and I’m excited for me too, getting to have some time to myself again – it’s as though I’ve implied in some way that I don’t love her or I don’t enjoy being a mum.

What’s more disappointing is that these statements are usually made by other women. Perhaps women who do love being at home with the kids. Which by the way is perfectly fine. There’s no right or wrong way to be a mum. You might love being with them so much that you’re going to feel a sense of loss when they go to school. Nostalgia for their infancy, and that’s perfectly acceptable, but so is looking forward to them going to school, looking forward to snippets of alone time or getting back to work and routine. A lot of women have to work nowadays in order to support the household, and this means we have to leave our children, but just because we have to, doesn’t mean we can’t want to at the same time.

I love the quality time my daughter and I spend together but I also love time to myself.

My circumstances might be unique because I’m chronically ill, and this often means I need to lean on people for support with childcare, sending her to school just means less relying on others and more time to recover. I’ve waited a long 7 months for some rest and I will wait less than 6 weeks at the start of term, for a week off with her when half term comes around.

The climax or crux of this article is this. We all parent differently, we all feel differently about our children as they grow. Some long for the baby stage whilst I love the here and now stage. The one where’s she chatting, drawing me pictures and telling me she loves me. Just because you don’t miss your kids every minute of the 360 she spends at school a day, doesn’t mean I love her any less than the next mum. I feel like we need to get better at normalising feelings of discontentment in motherhood. Feelings of normalcy. Feelings of desperation and in this case the lack of feelings in regards to empty nest syndrome or ‘school mum life’

As mothers we are weighed down with responsibility, organisation, emotional reactions, not least the physical endurance that is required to keep up with our mini me’s. We don’t need to feel the weight of someone else’s judgement whoever that someone is, but particularly less from another mother. We’re part of the same club now hun. The Mum Club. And I think we should try and make it wholly inclusive. What do you think?

Acute Anxiety.

I can’t tell you why I’ve been feeling anxious lately, not really. I could guess a few contributing factors but I don’t know why it feels so bad, or why when I’m led in bed at night things I did 15 years ago pop into my head and I can’t get them out. Or the fact that I can be stood in the post office queue and have to walk out leaving my parcels on the counter because my mind is in flight mode. Or why I wake up at 4am crying. Why I feel like I can’t breathe.

I can tell you that intrusive thoughts (like those in the above pic) are fucking awful I can be there one minute planning my next holiday or working on the laptop and the next – bam ‘why did you do____ (insert all and any life mistakes here.)’

Hormones are also the devil when it comes to anxiety. People often underestimate their power to make you feel off kilter seemingly for no reason. Anxiety can manifest into physical symptoms such as stomach upset, fatigue, tension and or cluster headaches, increased flare ups in other conditions eg in my case fibromyalgia.

I’ve spent this week convincing myself why I should keep putting one foot in front of the other. (With a little help from my friends) I’m not exaggerating when I say somedays I can’t see the wood for the trees, and the urge to disappear is overwhelming. I don’t want to feel like this, but it’s exactly the out of control response that is anxiety’s sole purpose.

Fight or flight, our bodies natural response to intensely stressful situations. Some say they also freeze in these situations. When I’m anxious I find it hard to retain even simple information. I can become irritable as the panic overwhelms me and overly sensitive to noise, smells, touch. A literal sensory overload.

Here I’ve included some things that have helped me this week. They are by no means a cure or substitute for medical advice but they have helped me go from ‘I don’t want to be here anymore’ to ‘let’s get through today one step at a time.’

Fresh air is free and highly underrated. My natural response is always to take to my bed when I feel depressed or anxious. To block the world out and keep myself safe in my sanctuary, but this week I’ve fought that urge, it wasn’t without difficulty and I took some convincing from my friends and mum, but I got outside. And the results were almost instantaneous. The blustery air helped calm me in a way that lying in bed shaking just wasn’t doing.

Phone a friend. This one is always really hard for me because I hate talking on the phone and the idea of speaking to people when I feel like this is all consuming. I worry what they will think of me and I know I’ll cry because crying is my autopilot response, but on Monday I dragged myself and my daughter to my friends house and for a few hours I felt completely relieved of the demons in my head. It was a great distraction. Choose friends you know will understand if you need to offload.

Crying is a completely normal reaction to an anxious situation- let the tears come they release oxytocin and the likely hood is you’ll feel a little better afterwards.

Distraction is a great therapy tool and never underestimate its power. Some people say you need to face the problem head on and I’m sure in certain circumstances that’s true but to get through an acute phase of anxiety I find it particularly helpful. I do a lot of reading so choose the kind of things you read based on how you’re feeling. If you’re anxious a chic lit book maybe more suitable than a psychological thriller.

Finally my last and favourite – Swear!! No I’m not joking. Science somewhere proves that swearing aloud can’t reduce stress levels. So chuck it in the fuck it bucket and call it a prick for good luck. You can read this blog over on House21 also!

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.

A Decade Of Lessons

The last 10 years

Well, it’s been a testing decade that’s for sure, but it’s also been the most amazing pilgrimage of self discovery I’ve ever been on.

I feel like the last decade is where I really became an adult and anything before was part of my youth.

In 2010 I was glassed in a nightclub in an unprovoked attack whilst out with friends, and it shook me beyond measure and took me to a place I didn’t know existed. I’d been in fights before, been given a slap when I probably deserved it, in my teens, I’d even (believe it or not) been hit with a bottle before, but it hadn’t shattered the first time and this was on another level. This was in response to me just being out having a laugh with friends, and it could have left me blind. Thankfully, physically most of the scars are on my décolletage and not my face (though I do have a dent in my skull) it could have been a lot worse physically.

But despite keeping up appearances, mentally I was scarred beyond recognition. I was scared too just by the weight of the attack, but in being scared I got angry.

I went ‘mad’ for want of a better word. I was wild. Following that night every time I went out I braced myself for a row and alcohol only fuelled that self destruction. I got in more rows and fights than I’d ever had before. I rowed and physically fought with my then partner, and when I ended that relationship I continued down a rabbit hole of hell.

I did some messed up things and 2013 saw the catalyst to that phase of crazy.

I lost my job, almost my house, and I was alone. Friends had given me a wide berth and my nights out were spent with people I didn’t even really like and who only hung out with me for some drama or entertainment.

I’ve always had a need to fill the shoes of the life and soul of the party, but I’ve filled them by acting like a fool. Being the loudest, the craziest and the wildest person in the room.

I met my now partner at the end of that year. I saw the new year in in Ireland with a good friend and it was like something just clicked, an epiphany if you like, and I didn’t want to be that self destructive, unemployed mess, that I had become.

I got a job, a pretty good one, and from there life has progressed at a steady pace. The following year I was shaving my hair off for charity and raising thousands of pounds. I’ve had some backslides, like being diagnosed with Fibromyalgia and it’s affect on my both my physical and mental health. Having a baby wasn’t an easy feat for me, and it can be hard work just being ‘normal’ most days, but I’m surviving it, and thriving too.

Last year my mum nearly died from a freak fall and I can say with certainty, I’ve never been as scared as I was then. It puts what’s important into perspective.

Nowadays I don’t feel like I’m falling from Beachy Head every time I wake up. I don’t want to hide for a week after a night out anymore, and I don’t wish I was dead. Even on the bad days, I’m glad to be alive.

I still feel like some days I fight stigmas and a bad reputation, but it took me a long time to make it, so I guess it’s only normal that it will take me a long while to break it, too.

That being said, my future is bright and I’m lucky. All the people in my life are in it because they want to be and contribute in some way to helping me be and feel better. So I’d say, despite all of that drama, this past decade has been pretty spectacular and I’m looking forward to the next one. Taking nothing for granted is my only resolution.

Happy new year 🥳

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/

Forgetting your illness

Things are good, you’ve had low impacting symptoms for a while and you’re starting to remember your pre-diagnosis life. Surviving quite happily on a steady dose of painkillers and enjoying the festive fun.

Not so fast pal!

Cue a poorly child you’re responsible for nursing back to good health, a weather change, or maybe an allergic reaction to some costume jewellery. Could it maybe you’ve done a little more walking than you usually do, or a long drive? – and bang!

Hey chronic illness, long time no see.

Now there’s no need to pretend like all the above things haven’t been thoroughly enjoyable, because if it wasn’t for those things you would have been sure to shrivel up and die of sadness, but when a flare up occurs it can be completely life limiting, and that’s why it’s called an invisible illness, because you don’t see it coming.

It’s December and Christmas cheer is everywhere. You’re getting right into the spirit of it and so you should, but then you catch that cold your daughter came home from preschool last week with, and it’s downhill from here.

I wanted to write a bit about how it feels to have a ‘just a cold‘ whilst fighting a chronic illness and what catching viruses does to our already weakened immune system.

Of course at first it starts like any other common cold and you get a sniffle or a bit of a sore throat. Then the pain from your congested sinuses trigger a migraine and the onslaught of nausea that follows makes you feel weak and shaky – for days!

Once that’s passed, the aching from the flu like symptoms, makes your already weary joints feel like they’ve been battered with a hammer, every single bone in your body feels bruised and your skin is sore to the touch. The raging temperature you’ve acquired messes with your already shot internal thermostat, and you constantly flit between grabbing extra layers and peeling sweat covered ones from your limbs. After you’ve done that a few times the fatigue completely floors you, and you have to close your eyes. Which is a bit of a problem when you’re sat at your desk or the school run needs doing.

What is just a sniffle to the average Joe can disable someone with an already weakened immune system and if you see them feeling a bit sorry for themselves try and refrain from telling them to man up. You can’t see the fight they’re fighting but underneath the snot their body feels like they’re in the ring with Ali. Don’t make an assumption that because people look well means they aren’t battling, they may well be trying harder to conceal it.

It’s so important to pace yourself when you suffer from a chronic condition but it’s also really difficult when you’re feeling well to remember to do this, and not get down about missing out on fun stuff. Suffice to say I didn’t pace myself all too well this time around and now I’m paying for it.

I’ve tried really hard to fight through the tougher days lately too, and I’ve done so with not much back lash, however the start of this flare up is swiftly reminding me that actually I need to slow down. So this is my reminder to you, be kinder to yourself and anyone you know who has an invisible illness – the winter struggle is real for us all, but it’s even harder for them.

5 things not to say to someone with mental health problems.

1) But why are you depressed? What have you got to be depressed about.

Maybe nothing. Why have you got a cold when it’s warm outside? Getting the message? Things that seem trivial to some are huge for others and maybe there’s not a specific reason. Remember it’s a chemical imbalance, an illness like any other.

2) It could be worse, you need to think yourself lucky.

And you Karen, need to shut the fuck up. We know it could be worse. It could always be worse. But honestly, that’s irrelevant and unhelpful.

3) You just need to ______ (insert unsolicited advice here) go to the gym, eat better, go out more, lighten up. Etc etc.

Again, unhelpful and bordering on offensive. A) We may have already tried what you mention or B) We may not feel able or ready to tackle these ‘small’ things yet.

4) Chin up, cheer up, smile…

Suck a dick, eat shit…. see where I’m going with this?

5) At least you haven’t got____ or you’re lucky to have_____

Don’t state the obvious. This is the reason many people feel unable to speak out, in fear of being ridiculed or not taken seriously.

These things may seem obvious, they may seem a bit pedantic but to be frank, they could save someone’s life. In my experience someone who is really suffering mentally needs the opposite of what these words convey. They need a listening ear and empathy, not an I told you, you should… or a chin up! The age old saying sticks and stones may break my bones but words will never hurt me, doesn’t apply to people with depression. All it takes is a little bit of rephrasing on your part. Nobody expects you to walk on egg shells but try to put yourself in that persons shoes and ask yourself if you would find the above 5 things helpful to hear in your time of need. If the answer’s no, stop saying them!

Hamster Wheel

Do you ever feel like your on a hamster wheel?

Round and round you’re turning but you still can’t seem to heal?

You’re doing what they say, talking and moving, eating drinking.

But you’re still not able to stop your mind from over thinking.

Intrusive thoughts they grow, as if from a planted seed.

They are watered daily by you, even given feed.

You want to stop the cycle but you’re not sure how.

You try to spread awareness but it doesn’t seem to help.

You feel like you are failing, as a mother and in life.

But you’re so not failing, I wish you could see.

How strong you are getting through everyday and going about your routine.

People don’t seem to notice, but don’t do it for them.

Do it for yourself, write a journal, grab a pen.

Whatever makes you feel better is an improvement, an act of self care.

Don’t let other people’s opinions ruin your hard work.

They aren’t you, they’re not there.

You’re doing so amazing, I wish that you could see.

To others, to me, just how strong you seem.

Rejection

Rejection.

I’ve never taken it well. From my father to boyfriends, one night stands, friends to colleagues, interviews and talent shows. I don’t even like the word –

R E J E C T I O N – ugly isn’t it?

As an adult you really do have to accept it to a certain degree, applying for jobs and not getting them, trying to get your writing published and getting turned down, it’s all par for the course on that journey we call life. However that, for me, doesn’t make it any easier to handle. I find rejection a real personal slight and I internalise it in every which way possible.

I applied for a job last week that I had convinced myself was the only job I wanted and needed despite it being a draining drive all the way there.

When they emailed me, yes emailed because in business these days people seldom call you to tell you when they don’t want you – when they emailed me to say I had most of what they were looking for but lacked knowledge in a specific area, I was gutted. They then proceeded to say they were putting the job back out for advert. So, go figure, I have almost all the desired skills but rather than train me on the few I’m lacking you’ll just keep hoping the better person will come along. Thanks hun.

They may as well of just said ‘No thanks, you’re not good enough’ – Ok I’m being a bit melodramatic, but seriously I find that kind of recruitment so unconventional. Whenever I’ve interviewed people before of course they are judged on their skill set and have to tick boxes, but I also get a feel for them as people and their desire for the job in question.

Do they want it?

To add insult to injury one of the articles I’d written for a magazine was also declined. It was about taking antidepressants whilst pregnant, a really relevant topic with the mental health crisis being as it is, and maternal mental health being still such a taboo. I’d edited it to a standard of polished finery, it was good.

And their reason for not publishing it, it didn’t set the tone they were after. Which is weird considering they asked for honesty, real life, feminist type topics. Everything my article contained.

I often think my style is an acquired taste because I do write with an honesty that can sometimes be construed as offensive although that’s never the intent.

I have to defend myself here and speak up though, because I know I have a niche and I want to be heard. I know my writing resonates with hundreds of women. That’s not being arrogant, it’s ok to be good at stuff you know!! I love words and I feel I use them well. I use my voice to speak up about parenting, chronic illness and mental health and I know that all this rejection I’m receiving is ammo for a new article – queue this post. However, I can also write reports, stories poems and so on, so I think I really do have to learn to accept rejection, learn from it, and keep plugging away.

People will tell you you’re not good enough, but what they really mean is they have an idea of what they want and you’re not it. The secret is to try and see past the rejection and use it to prove them wrong. But I have never really been very good at secrets and I can’t help but feel like I’m failing. I feel like I need validating, as if that will prove my worth.

But even after this, off I went, geared up applying for more jobs, saw another I knew I could do and wanted – pay wasn’t amazing but right now it’s about ticking over whilst I write, rather than making my fortune. Filled out the application, again to a standard of polished finery and got to the bit where they ask if you have any criminal convictions. I do, and whilst now spent, this role included providing details of even spent convictions. So I wrote down my 2 convictions and 2 cautions.

All from a time long ago, when I was at rock bottom and a bit of a reprobate. Also all pre my life with Shaun and Ciara.

I filled out the form anyway – nothing to lose, and I’m sad to say I’ve not had even an acknowledgement.

So how, I ask are we supposed to rehabilitate? I’m not defending myself, I know I was a knob and did some stupid shit age 22/23 like kicking off in the street and breaching the peace, my worst crime was driving drunk. Something I will never forgive myself for as I know the damage that could of caused endangering others. I’m so sorry for that, and thankful I didn’t hurt anyone. It’s something I have paid the price for though, I can assure you and something I’d never do again. Ever!

I didn’t commit fraud or burglary, I didn’t bring harm to people or get involved in hate crime. I just didn’t know when to hold it down and my decision making was erratic. They were all, (accept one when I was 13) offences committed whilst under the influence of alcohol, drugs or both.

You often see these amazing inspirational stories of people turning their lives around and that’s me, I did that too, but I’m not always being given a chance to prove it. We had Ant back on our tv’s after doing the same thing and we still love him. He made a mistake but he’s not a bad person. He didn’t have to deal with job rejection when being honest about what he went through. I understand some roles don’t fit if you are potentially at risk of reoffending especially, crimes involving children and the elderly. We have to protect people’s welfare first and foremost but we also sometimes have to take a leap of faith. Put yourself in someone else’s shoes and take a chance. I’ve not just done bad things in my life, I’ve done some amazing things too. I’ve raised over £10,000 for charities, been a good friend, a good mum, kind… there is always more to people than meets the eye if you’re willing to educate yourself.

Being rejected is something I wonder if I’ll ever be able to cope with but I am determined to keep trying, I’ve turned my life around and I want to show my little girl that her mummy never gave up when trying to be a better person than she was the day before.

Mum guilt and chocolate teapots

Mum guilt, if you’re a mum, you’ve had mum guilt at some point. You may even have it regularly – let’s be real about this, it’s a thing that has blown up in recent years because we (I, in any case) spend far too much time comparing ourselves to other mum’s on social media, at the school gates, during a PTA, at soft play or on someone’s follow Friday post.

A friend of mine called me earlier this week to say she’d been called into school about her child’s behaviour. They were acting out and she felt tremendously guilty. She felt like she’d failed as a mother. Let me be clear here, she is a bloody fantastic mother, but seriously, she tore herself a new one over this. I went away and thought about the times I’ve been criticised or not even criticised as such, but spoken to about Ciara’s tantrums and or her lack of sharing and I’ve felt like the worst person on the planet. I’ve gone on social media to make myself feel better and been faced with everyone gushing about their perfect kids or at least that’s what I’ve taken from it and ended up feeling worse. I’ve been penalised for being ‘real’ for admitting when my child acts like a knob. People have said ‘no wonder if you call your child a knob, they’ll act like one.’ FYI I don’t sit there calling my three year old a knob to her face, but sometimes people, she acts like a spawn of Satan, so she gets the finger when she’s not looking, and sometimes….. she’s cute and shit. If you complain about your child’s behaviour or chastise them, you are branded an awful mother, and if you don’t, you are still an awful mother as you must not even notice or worse, don’t care!

It’s funny because when I thought about this in more depth I thought about our mothers and grandmothers. There weren’t parenting books and baby led weaning, or the Ferber Method. There also weren’t tens of thousands of mums on social media talking about being one. (I’m aware I’m that person too) What I’m getting at is, they had nothing to compare it to accept real life experiences from friends and family. There was hardly even any reality TV when I was a kid. None of this teen mum stuff or one born every minute (which I love by the way) but we all sit there and have a little ‘ooh I wouldn’t of done it like that’ moment when watching. Don’t get me wrong, there are just as many mums taking a stand against mum shaming on social media as there are ‘perfect’ parents, but where does this end.

If your kid acts up these days it’s because they have something wrong with them, or there’s something wrong with you, or you’re neglecting them, smothering them, missing something, and so on!

This is a time when if you kiss your child on the lips and photograph it, you’re branded a paedophile. Has the world gone absolutely bat shit?

My mum always gave me a big smacker before bed, she wasn’t/isn’t a paedophile. The only difference is, back then she didn’t photograph it and post it on social media. We seldom take pictures of our babies cute little bums or let them waltz around starkers because let’s face it, there are some sick people in the world and we’re quite rightly protecting our kids, I wouldn’t ever condone anything that put them at risk, but come the fuck on people, can you not give your child a kiss or a cuddle in public anymore? Loving your child and showing affection in a positive way does not make you a monster.

My daughter doesn’t eat any veg, or fruit, accept in the form of juice. We have tried EVERYTHING! Her eating has gotten worse the older she’s got and it’s a real fight in our house some nights to get her to eat pizza and chips, let alone home made vegetable ragu. I can assure you, it’s not for lack of effort on our part as parents, whether you believe my assurances is another matter.

When Ciara’s tired and in an ‘I want Daddy only’ mood – I wonder to myself if this is because I’m a terrible mother. Does she hate me? What am I doing wrong?

When she forgets to use her ‘kind hands’ at preschool I wonder why it’s my child that plays up, what did I do?

I know I’ll go away after this post feeling liberated for all of five minutes for the rant I’ve allowed myself, and then I’ll get back to wondering why I can’t do better or be better. Why nobody looks at me as an idol, why I’m not up on a pedestal of perfect parenting.

BUT when I look at my daughter each day and see her happy and healthy little face, when she randomly comes and plants a kiss on my cheek or puts her little hand in mine, I’m going to try and see myself from her perspective. I’m going to try and love myself a little more how she loves me, and I’m going to give myself a pat on the back for every day we finish a meal, every time I refrain from referring to her as a little knob, and every time she’s kind. Fuck it I may even get myself a reward chart because I am a good mum. Deep down I know this because my perfect girl is so loved, and guilt, guilt is an emotion I render as useless as a chocolate teapot.

Frank Bruno

On Saturday the 2nd March I had the pleasure of attending an evening with Frank Bruno. Being an avid boxing fan I was excited to hear about his bouts against the greats, such as Mike Tyson and Bone Crusher Smith, and of course his amazing win of the title against Oliver McCall. When these fight’s originally occurred I was very young so didn’t watch them first hand, I do however remember Mike Tyson Vs Frank Bruno 2. Purely because it was strange to have this on in my nan’s house, but there she was up late in all her glory on the date of 16th March 1996 with a Tia Maria in hand, watching this brutal rematch that would see Frank defeated a second time by the animal that is ‘Iron’ Mike Tyson. Hearing Frank speak honestly about these fights often with huge respect for the other fighters was fascinating. Even after the grudge match with Lennox Lewis, Frank regarded him with respect. He also talked about current fighters such as Chris Eubank Jnr and Tyson Fury.

But for me, the most fascinating, heart wrenching and humbling part of the evening was hearing Frank talk about his battle with Mental Health and how he started the Frank Bruno Foundation, in a bid to ‘knock out’ the stigma that still surrounds mental health today. Frank spiralled into a depression after retiring from the great sport and following the break down of his marriage. He was victim to phone tapping and harassment from the media that made him feel as though he was ‘going mad.’ He was eventually sectioned for the first time in 2003. For years following this he suffered a long and debilitating battle with mental illness and described it as his ‘toughest fight.’ When asked how he overcame his demons, Frank’s reply was ‘I haven’t, but I fight very hard, I use fitness and determination to keep me going.’ I think that’s a really important message for anyone who thinks mental illness is some kind of excuse or elaboration, and believe me, sadly those people do exist. I urge those people to read Frank’s latest book Let Me Be Frank and then decide if you still feel this is some glorified publicity stunt. This is a man who has battled with some of the toughest men in history, but found battling with his mind so much tougher. You have to admire his strength and determination as well as his courage to speak out.

After the show on Saturday we had a photo opportunity with Frank so you can imagine my excitement. I patiently awaited my turn, thinking in my head of something to say, it was probably going to be the one and only time I got to speak to him so I wanted to say something memorable. Frank talked during the evening about his battle with antidepressant medication and how he was now 4 years medication free, I wanted to tell him about my own battle trying to withdraw from the same type of drugs, but there wasn’t enough time. All I was able to stutter when my turn came around was ‘Frank, I’m so excited, shit, everything you do for mental health is amazing’ and I truly meant it. For someone in his stature use his voice to promote health and well being for people who suffer mental illness is truly commendable. We all battle demons from time to time but we tend to put celebrities on pedestals or misunderstand their motives. Frank now has his own charity in The Frank Bruno Foundation and that charity works hard to really help sufferers. He makes no excuses for his illness, blames nobody for his failings and refers to his dad as his ‘hero’ it was a truly inspirational evening and I felt privileged to have been there, obviously I paid a premium for that privilege but it was worth it. It’s a night I will probably remember for the rest of my life. I think I may have found a new hero myself.

His parting line after being asked ‘ Who hit you the hardest Frank?’ Was ‘The Taxman.’ What a legend.