invisible illness

Confessions of a chronically ill mum.

January 14, 2022 — Leave a comment

I stood on my mum’s drive yesterday morning, trying to make plans to go for a walk together like we had earlier in the week. As I walked away from her with a ‘provisional’ plan for the following week, I felt sadness, embarrassment and shame. My mum is my best friend. I needn’t feel any of these things in her presence, but the truth is, I feel it in everyone’s presence. Since the beginning of December my physical health has been increasingly hard to manage. I have spent days in bed. My husband has had to take days off from work, and my daughter has said the words ‘when you feel better, mummy’ on repeat. I missed a visit to Santa with her, and I didn’t get to spend Boxing Day with family as was planned. Then on top of that, we all, everyone in our house, caught covid.

I’ve cried in pain holding my son and I’ve listened to his cries when I’ve been physically unable to hold him any longer.

I’ve also had good days. I had friends round and we toasted marshmallows in the garden. I sat through a pantomime with my son on my lap and my daughter by my side. I spent a night in a hotel with my husband. Following those days though, I suffered immensely for the privilege. That’s when life can be really sucky, when your body (and mind) punishes you, just for living. In the last two years I’ve abstained from alcohol. I’ve had one night out since August 2020. I’ve tried to eat better and I’ve tried to get enough sleep (not an easy feat with a baby.)

And I can say with honesty and confidence that I have done my best to partake in activities with my family. I have done my best to limit my symptoms. I’ve done an incredible amount of work on my mental health and I’ve worked through a lot of what was previously, unresolved trauma. I’ve fucking tried. But the thing with your health is, you can do everything right and still be unwell. You can do everything in your power to manage your illnesses and still suffer flare ups. You can get eight hours sleep and still be bone weary fatigued as though someone has poured cement into your bones.

I’m writing this because it’s true. Not for sympathy, though I’ll be honest, more empathy is always welcome. I don’t gain anything from sharing my illness and it’s trials. It doesn’t serve me personally, but occasionally I’m told it helps other people. I’ve said before, but sympathy is in short supply when people realise your condition is long term but not life threatening. Not life threatening no, but it IS life limiting in some way, every single day.

I feel often as if managing my health is a full time job. Being a parent is a full time job. I have no time for my actual job, and no energy left for anything fun. For six months I have had medical appointments every week, often twice a week. I’ve been unable to walk, and then I’ve been able to walk, followed by days unable again.

I often write about holding onto the good days and I stand by that, but it does get tiresome when you feel like you’re always being punished for them. I’m not even talking always good days, sometimes it’s good hours followed by a migraine, or a surge of otherworldly fatigue so achingly exhausting that there’s nothing left to do but take to your bed. The trouble with taking to your bed when you have kids is, you rarely get the opportunity to do such a thing, and secondly, but probably more notably, you miss things. 

My confession is, sometimes I find the responsibility of my illness on top of the responsibility of my kids so overwhelming I pray for oblivion. Sometimes I find time with my kids assaulting to my senses. And sometimes I feel so guilty for their plight having me as their mother that I wonder if they are better off without me.

Thankfully, and going back to all of the ‘work’ I’ve done on my mental health this past year, I know this isn’t true. I know they love me including my flaws, health problems and weaknesses, not in spite of.

I guess the narrative for this blog was to get these feelings off my chest, and also remind myself that (and I’m sure I’ve used this quote before) but….

Bad days do not equal a bad life

It’s hard being a mum regardless of health, wealth or any of the other things that make life easier. Perinatal depression and anxiety do not discriminate, chronic illness, illnesses of any kind actually, do not discriminate. The world is a tough place to parent, and knowing this doesn’t make it easier, but it does remind me I’m not alone.

Sending love to anyone else feeling like they’re on their knees. Know this, better days are always coming.

32 weeks of growing you

May 10, 2021 — 4 Comments

TW: Perinatal anxiety & depressive thoughts.

Too many tears. Too many days in bed. I’m done now. I have nothing left. Except I’m not allowed to be done, because there is more time left, there is more to do, there are more weeks you must stay inside of me to keep you safe, and despite feeling like I am losing my fucking mind and having no control over my body, my goal is still to keep you safe. You’re still the most important thing.

It has been over four months now that I’ve not been able to walk, drive, leave the house alone, spend one on one alone time with your sister. Four months of being told over and over again ‘it’ll all be worth it’ and that ‘it’s not long now’ it is long, it feels like fucking forever. Every single day feels like ten years. My skin feels like it’s crawling with insects. I cannot move without feeling like I’m rolling around in glass. I have put on so much weight, because I can’t move. My anxiety is through the roof, I am getting no sleep, and I cry all the time. What will I do when you come? How will I cope?

Nobody will tell me what happens next, I still don’t know if I will regain mobility and if I do, how long it will take. I’m just waiting, and wading through treacle, with limbs that don’t work. I feel like I can’t plan anything, look forward to anything. I feel physical pain so acutely, but I’m mentally numb.

People message to ask me how I am and when I tell them, they don’t reply, because they don’t know what to say. I think it’d be easier if they stopped asking, because it’s worse to open up and be vulnerable, only to then get ignored.

Everywhere I turn I keep seeing messages of hope, speak out, don’t suffer in silence, etc etc…. it’s everywhere, but it doesn’t feel real, because when you do speak out, when you do open up, people judge you. People think you should be doing better, feeling a certain way, being more grateful. People give you their opinion on how you should treat your mood. They tell you what they think, they try and fix you, they tell you that someone else has it worse, and they aren’t really listening.

It’s the honest, ugly, truth that nobody wants to hear. Not really. They say they do, but they find it uncomfortable. People tell you how well you’ve done when you’re out the other side of something. When you’re in it, they don’t know what to say, and I do get it. I really do, I understand, because it’s hard to support someone whose in a negative place. But sometimes you don’t have to say anything, you definitely don’t have to ask questions or have answers, sometimes you just have to be available to listen.

I don’t want to feel like this. I don’t want to be ungrateful or feel like a burden. It’s not a choice, it’s a lot of self doubt, and it’s a reaction to a difficult situation.

With all this in mind, I’ve been working really hard to try and change my mindset today. I know it’s only me that can do it. I know I can’t expect to be rescued. After days in bed over the weekend, today I got up. I had a bath and washed my hair, it was an exhausting task, but I know it helps. I put on clean clothes, I had soup for lunch instead of binging on crisps and junk. I took painkillers, because I needed them and tried not to feel any guilt. I watched a comforting film that felt like a hug and downloaded a feel good book to read. I’ve drank plenty of water, and the cloud is lifting.

I know I can do this, I know I have to do this, I know I’m strong enough to do this, but sometimes I don’t feel like doing any of it.

I’m downstairs now, waiting for your sister to get home from school, with a smile plastered on my face. I will watch another film with her, talk to her about her day and she will give me the hope I need to keep going and do the same tomorrow. I won’t sleep today, because if I nap now, sleep will evade me again tonight, and I need sleep. I need it to allow my brain to switch off. I need it to keep going. I need to enable me to focus on the positives, and they are that we are lucky, we are lucky to have you and I want to feel that. I want to feel joy override all these other emotions. I want to feel better, excited.

The below pics were taken less than 24 hours apart. It’s hard to believe that the extremes can peak and trough so rapidly. But I have to remind myself that it doesn’t matter what other people think, I’m surviving a hard and long journey, and I’m doing it whilst keeping you safe. I’m doing my best. I’m going to be okay, and so are you. ❤️

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

April 20, 2021 — 4 Comments

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

Third trimester

April 15, 2021 — 2 Comments

You made it.

You’re on the homestretch now.

Is the baby ok…..?

When I was pregnant with my daughter I had chronic migraine from the minute I found out I was expecting. I was diagnosed with SPD at 16 weeks unable to walk and that was extremely painful. I soon became very depressed and ridden with anxiety and intrusive thoughts. By the third trimester I was bedridden and had developed preeclampsia. We were induced later, she was born in withdrawal from antidepressant medication. Her first year was defined by trauma and towards the end when she was recovering, I was being diagnosed with fibromyalgia. As she grows, and continues to thrive I feel like with each flare up I die a little inside.

You’re so strong.

Lot’s of people go through complications and come out of it okay.

Stay positive.

It’s a myth (I believe) that people come away from pregnancy and birth trauma ‘ok’ we all move through trauma very differently, but what your mind is able to process your body fights against and you don’t always fully recover. Trauma and stress have a lasting impact on the physical health of a person.

This week I turned 28 weeks pregnant. Last week I found out I didn’t have gestational diabetes and I cried tears of joy, because I didn’t think I would cope with more complications. But every glimmer of hope is followed by a plummet, a sense of doom. Here we are today and my diagnosis and risk catalogue, continue to grow and the list of complications multiply again. I’ve again suffered migraine from conception, got diagnosed with SPD at 16 weeks, again. My blood pressure has been high. I’ve had a reoccurring shingles infection that isn’t responding well to treatment. My whole body is in a constant flare, I’m in agony, not just occasionally now, all of the time, surviving on the very minimum of pain relief. Some days I can’t move my body at all. This week I turned up for a growth scan only to be told I have a low lying placenta (placenta praevia) they’ll book another scan for 36 weeks but and I quote, ‘if you make it to 36 weeks.’

Don’t have sex – I can’t even move my legs hun let alone spread them.

Don’t do…. (insert anything) here.

You might need a cesarian.

No big deal right? Women have c-sections all of the time. Except it is a big deal for me because my body is already broken and major surgery only hinders it’s recovery further.

But the baby is ok, right?

My baby, the one I’ve been fighting for. My second baby, is currently safely cocooned inside me. But We don’t know if he’s ok, not really. I find it odd that this is the first question people ask when so many babies suffer complications late in pregnancy and post delivery. I also feel like it unintentionally goes towards invalidating my struggle. The baby’s fine so therefore you’re fine, stop moaning. We know he has a 1 in 3 chance of suffering the withdrawal similar to his sister, albeit to different medication. We know he’s at risk of infection because my body isn’t fighting them off well. We know that he is at risk of being born prematurely. We hope that he will come out of this unscathed. I am doing everything I can to ensure that happens, but I am not in control of this situation. So I can’t answer the question with anymore certainty than my doctor can answer me.

As a family we are doing our very best to survive, and surpass the finish line, in one piece. We are trying to stay focused on the outcome of a healthy baby, but we are definitely not okay.

My daughter who can’t wait to meet her brother has no understanding of why her mum is ruining all her fun by not participating in anything. My husband is now my carer, and he’s not getting paid, not even in kind.

I am thirty three years old and I feel like my world has been tipped on its head for the 100th time in my life, except this time I have no control, no way to turn it around. I don’t feel brave or strong. I feel petrified. I feel weak. I feel out of control and I feel bone weary, exhausted! As though cement has been poured into my body by mistake and set overnight.

I don’t like the idea that we must keep calm and carry on, because I don’t feel calm. I’m carrying on regardless, because I have no choice. Not because I’m not broken. Or because I’m coping better than I make out. It’s because carrying on is the only option. There’s a saying that goes, you don’t know how strong you are until strong is your only option.

I hope once our baby arrives we will look back on this time like we look back on that time with his sister and we will be okay. We will have all survived, together. We will be happy, and we will have reasons to laugh. I hope that I will regain some control over my health and days will look brighter again. Hope is my coping mechanism. I hope, because to give that up isn’t an option. You might be wondering why I continue to share all of this information, why I’m not holding out to share better news, and the answer isn’t a simple one either. I write to hear myself think. I write to process my thoughts, and to unburden myself of the doors negative thoughts lock when trapped inside my head.

I’m not a person who believes her suffering trumps someone else’s. I know other people have it worse. I know I may come away from this beating the odds and better, but I don’t share for your attention or your sympathy. I share for my own peace of mind. I share so that when we come out the other side, we can look back and know we survived.

Call for NICE to play nice with chronic pain sufferers!

April 8, 2021 — 4 Comments

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.

27 weeks of growing you.

April 4, 2021 — Leave a comment

It’s been a long one, one full of apprehension, appointments, medication, embarrassment, but smiles too.

Last week I had a recurring shingles infection outbreak, it meant I had to go back on antiviral medication and it was painful. During this time we had to see a midwife for a routine appointment and because I can no longer attend these appointments on my own, your dad drove me and got to hear your heartbeat live, for the first time. That was smile number one.

On Thursday I attended the hospital again for some blood tests, and also had a GTT or glucose tolerance test as they are known, to check for gestational diabetes. I have been dreading this test. I had one with your sister too, though I have diabetes in my family, I wasn’t considered high risk during my first pregnancy. This time though due to BMI and hypertension, I was convinced gestational diabetes was a given. The test was painless but it’s effects on my body, fasting, blood taken on an empty stomach with only pain killers rattling round in there made me sick. The drive was uncomfortable, the wait in between the same. I felt like dog shit. The twenty four hours that followed scared me. It was your sister’s birthday party the weekend following the test, and I was panicky about not being able to indulge in birthday cake. Thankfully though, I found out on the morning I DIDN’T have gestational diabetes, my relief was tangible, I cried real tears. Finally a sliver of hope amongst what has otherwise been an assault on my body.

Friday morning I took my recently hired mobility scooter for a spin. It pains me to say that this was difficult. It shouldn’t have been, but deep rooted in my psyche is inherent ableism. I didn’t get questioning looks, but I did get a lot of sympathetic smiles, which in truth were almost as uncomfortable as the former would of been. However, with that in mind, I enjoyed a morning out with our family, and that inspired smile number two.

Saturday arrived and your sister was buzzing for her birthday party, we’re still under strict restrictions here so she was only allowed one friend, but it was her bestie, Maddie. It was wonderful, your nanny, daddy & I all dressed up in fancy dress and I painted your sister and Maddie’s faces. Using the crutches has become increasingly difficult and painful for me, making my fibromyalgia scream, so after a few hours I was beat. But smile number 3 was the best, seeing your sister’s happy face and feeling like under the circumstances I had given her the best possible birthday party, was a moment to cherish and be proud of. I couldn’t sleep last night because the pain following has been so unbearable and today your Daddy took your sister out for the day so I could get some rest. The pain of carrying you on top of my illness is becoming harder to control the more you grow. The hardest part of all this is the limitations on the medication that is safe for me to take whilst carrying you. I worry how I will care for you when you arrive.

In under two weeks time we have another scan to check your growth and also to discuss how you might enter the world. I think I’d like to have a planned induction this time if it’s possible for me to avoid cesarian. Your sister was induced and it definitely wasn’t easy but in comparison to pregnancy, labour isn’t something that scares me.

Tomorrow is your sister’s fifth birthday and we will celebrate again despite the pain I’m in, because us mums push through for our kids, but I know I’ll need time to recover again afterwards. I have an occupational therapist visiting next week to see if I am suitable for some more adaptations to help me see out the rest of this pregnancy with limited mobility.

I am staying strong, and so are you. Keep it up. We’re doing okay you and me.

A letter to myself.

February 21, 2021 — Leave a comment

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

Migraine – not just a headache

December 28, 2020 — Leave a comment

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

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

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

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

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

You can also read this blog here on The Mighty Site

Three things

July 23, 2020 — Leave a comment

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. ✅✅✅💗

Acute Anxiety.

July 8, 2020 — Leave a comment

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!