invisible disability

104 days postpartum

October 12, 2021 — Leave a comment

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

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

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

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

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

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

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

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

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

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

54 Days postpartum

August 24, 2021 — Leave a comment
23.08.21

My daughter was on her way to bed last night when out of nowhere panic hit me full force. My son, lying in the crook of my arm, suddenly started to spit milk out from the sides of his slow flow teat, and I realised, the hand that was holding his bottle was shaking. I felt hot, from the feet up, like a flush, my brain scrambling for grounding thoughts that just couldn’t make their way to the forefront of my mind. It’s coming I thought, knowingly.

My husband comes when I call, and holds me tight. Our son, bewildered at why he’s suddenly had his bottle snatched from his mouth, our daughter, obliviously cleaning her teeth in the bathroom above our heads. Breathe Shaun tells me. Why am I like this???? I sob, trying to catch my breath. You’re not like anything, Steph. It’s a panic attack and it will pass. He reassures me, never letting me go.

It’s been 54 days since I gave birth. Our son will be 8 weeks old on Thursday 26th August.

This isn’t a birth story, because my birth story is too long, the trauma that surrounds my pregnancy will not shrink into an Instagram caption or a rushed blog post. This is a progress report.

When my son Kaiser was born, and during the days preceding, I was in a constant state of panic. I would have moments of calm, but they were fleeting and hard to grab onto. I’ve plateaued at a panic attack approximately once a week now. I know that a large part of their occurrence is directly linked to hormone sensitivity, yet that gives me no control or reassurance regarding their assault on my life.

I’m currently under the care of the most amazing perinatal mental health team, they are some of the best medical professionals I have ever come across in my entire life and I’ve met a few. Sadly this support was massively lacking during my pregnancy – but that is a story I’ve semi already told and one that would take up the duration of the rest of this blog. The point, is that I have some amazing people in my life at the moment helping me heal from acute anxiety, intrusive thoughts and various states of panic. I genuinely don’t believe without their consistent support during the postpartum period, that I would have gotten these bastard attacks down to once a week on my own.

The trouble is, I’m still very much in a state of fight or flight. During the periods of calm, I am logical. In fact I am probably calmer than I’ve ever been in my life and generally laid back (a term probably not often used to describe me as a person) but I can’t stay there, because as quick as I’m calm, a storm cloud opens up the heavens on my head and I am ready to flee the country as though I’m being chased by a hungry tiger.

However, during those moments of calm I have reflected. I have corrected, and I have made changes to my mindset. Living with chronic illnesses as I do, migraine, fibromyalgia, PMDD etc it’s easy to become all consumed by pain and suffering. The shift in my mindset has been that I don’t want to be consumed by this suffering anymore. I know I am going to suffer, bad days, sometimes bad weeks and maybe even bad months, but I don’t want it to consume me. I want change.

My community nurse said to me this week you have to do different to feel different and so I’m doing different. Every day I’m fighting tiny fires of fear. For example, I’m frightened of being alone with my kids in case I have a panic attack, but I’m staying alone with them anyway, because I know if I avoid this fear it will only grow.

I was absolutely distraught about Shaun returning to work after paternity leave, but I knew if he delayed that process I would be as scared, if not more so, when he eventually did.

I’ve been avoiding books and television that might be triggering or that contain storylines of anyone with mental illness, but very slowly I’m reintroducing those things into my life.

I’ve been too afraid to walk or drive anywhere on my own because of how much pain I’m in. What if I get stuck with the kids? And then what if whilst I’m stuck, I panic?

I’ve been too scared to enjoy days out for fear of repercussions on my body, or to go places more than half an hour away from my house in case I panic and need to flee, but slowly I am doing both.

I’m making this sound easy, and yet it’s been the hardest most hellish experience ever, doing things I’m so desperate to avoid goes against the grain. But I’m using these examples to measure my progress, because it’s so easy to feel as though I’m making absolutely no progress at all when anxiety strikes.

I want change. I want my life back. And I have to do different to feel different. I have to be open to the idea there are positive outcomes in life, because if I don’t open myself up to this possibility, I will forever be living half a life.

Life after secondary Symphis Pubis Dysfunction.

July 31, 2021 — Leave a comment

For those of you that follow my blog you’ll know that for the last 7 months I’ve been using crutches and a mobility scooter because for the second time in my lifetime I developed Symphis Pubis Dysfunction during pregnancy, rendering me unable to walk unaided.

Symphysis pubis dysfunction (SPD) is a condition that causes excessive movement of the pubic symphysis, either anterior or lateral, as well as associated pain in the legs, hips lower back and groin area, possibly because of a misalignment of the pelvis. Most commonly associated with pregnancy and childbirth, it is diagnosed in approximately 1 in 300 pregnancies, although some estimates of incidence are as high as 1 in 50.

After the birth of my first child my mobility returned almost instantly requiring no further treatment and little associated pain. Professionals tend to believe SPD worsens with each pregnancy and the likelihood of developing it in subsequent pregnancies is extremely high. Many women experience pelvic pain in pregnancy and the severity of SPD varies from person to person, loss of mobility and need for walking aids is generally rare. It’s onset usually occurs in the latter part of pregnancy in the second and third trimesters. For me, I had developed symptoms during both pregnancies, at the end of the first trimester and required crutches by sixteen weeks. In my first pregnancy I needed to use a wheelchair at around 25 weeks and in my second this was sooner, at around 20 weeks. Highlighting to me the very real and tragic reality that society isn’t accessible.

Since giving birth four weeks ago the question on everybody’s lips is ‘can you walk again now?’ And the answer is yes, I am able to walk unaided now, but my symptoms have NOT disappeared, far from it.

I’ve lost a lot of weight in a short space of time and I believe this to have provided significant relief on the pelvic joint, thus I am able to walk a thousand(ish) steps at present, but it’s not without pain. I’m currently unable to walk around holding my son and rocking him and swaying in a standing position is agonising. Same goes for carrying anything, including the car seat, along with bending and sitting for prolonged periods. I spent almost 4 of those 7 months pretty much horizontal in my bed and so getting used to different positions causes increased aches and pains.

I’m so relieved to have some mobility back at all though, as it was suggested I may need crutches postpartum and that would have made life with a newborn and an older child even more challenging. After the first two weeks following birth I started trying to go for walks everyday with my mum or husband. Short walks that lasted around thirty ish minutes, however this seems to have aggravated pain and I’ve had to reduce the amount of exercise again and pace myself. I’m still trying hard to keep moving I just need to be mindful not to overdo it. Some of you will know I also have fibromyalgia and so pacing is important for me anyway.

During pregnancy I was unable to see a physio, constantly being fobbed off with covid being a reason for not treating in person my very real and very debilitating pain. However I do plan to chase them again as soon as I’ve had my postnatal check.

It’s definitely not easy having a newborn and limited mobility, but I’m humble in that I’m able to move around at all after so long without any freedom. I feel positive that with the right strengthening exercises I can increase the time and distance I’m able to walk but whether I’ll ever be able to move like my prenatal self is still an enigma. I’m desperate to get back to the woods and explore with my daughter, but I know uneven ground is a no no at the moment. I’m also not able to carry my son in a sling. The great thing about buggies is they provide a stand in crutch, giving added support, but it’s really important to remember to do simple things like bend your knees when lifting and stretch often etc.

I’m used to being in pain everyday and whilst it’s not fair or fun I do feel extremely grateful. Losing my mobility to the extent I did in my second pregnancy has really made me value my abilities so much more than I ever did before. It’s also opened my eyes to how other disabled people manage (or not) in a world that isn’t designed for us, even things like high stools in restaurants and benches without backs can cause excruciating pain!! Crutches were a constant trigger for flare ups of fibro symptoms, causing fatigue from too much effort lugging about a baby bump on your arms, being unable to participate in days out with my family was soul crushing, and whilst I’m a long way from climbing round soft play or going for a run I’m closer than I was just weeks ago.

My advice to pregnant women experiencing pelvic pain is to act fast, don’t ignore it, keep moving but don’t do anything that hurts and if that means walking, try to exercise seated or led down. Learn to pace and rest often. Take the weight off of the pelvic joint whenever possible. Goes without saying but don’t do any heavy lifting either. DEMAND to speak to a women’s health physio and look up your own safe exercises for pelvic pain in pregnancy. Weightless exercises like swimming are recommended but be careful of over doing it with the legs.

Something I didn’t do but would also recommend, is try and keep within a healthy weight, it’s nearly impossible when you can’t move around but the extra weight causes more strain on those joints.

Life after SPD isn’t the same as life before but it’s better than life in the peak of it. The world needs more awareness about the impact pregnancy can have on our health and information about how to lessen that impact going forward.

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. ❤️

31 Weeks of growing you.

May 4, 2021 — Leave a comment

I’m tired. Tired of explaining why things are so hard. Tired of feeling stuck on a loop. Tired of the unknown. Tired of my body failing us. Tired of pain. I’m just so fucking tired.

I’m irritable, I’m fed up of people saying stupid shit to me, shit they don’t of course even know, is stupid – because how can anyone be expected to know what the right thing to say is, when I don’t even know? I’m just tired of all of it. I’m tired of feeling like I have to fight to have questions answered. I’m tired of having my situation dismissed or compared to that of so many others. I’m tired of feeling like I’m broken.

I have maintained the pretence that I’m not depressed throughout this pregnancy, because I don’t want to take more medication, it’s the first thing anyone says when I complain of low mood. Do you need to go back on your antidepressants? – and I feel like saying, please fuck off.

Because I know what depression feels like, and whilst I do feel very low many days, I also have a list of reasons as long as my arm as to why that is and a pill, unless it’s one that reignites my ability to walk, or makes me promises of a healthy baby isn’t going to change that at the moment.

So far I still feel like I have some grip on my mood and reality. However low I feel, I don’t feel like I’m fully depressed yet, but maybe I am and I’m in denial, who knows. I have gotten this far though and I can see it through until you’re born. We will then reassess my mental capacity, once we have a better understanding of my physical abilities.

I also feel like I’m becoming a social outcast – I can maintain a level of strength and resilience as long as I don’t have to talk to anyone. When I speak to people I feel like I either have to explain all the whys and what ifs or I have to appear strong and excited, whilst really feeling neither.

Feeling like I can’t hide myself wincing in pain, like I can’t hide the fact that I am in uncontrollable pain, every single day. Even before you existed I had to navigate a social life around pain and bad days, now I’m starting to feel as though I am incapable of a social life at all, where are the good days? Good hours pass by too quickly only to be met by flare ups of more uncontrollable pain. Most of my friends are amazing, they want to help and include me, they care, they check in, but I still feel like I am bringing the vibe down at every conversation. Like I’m just that person that people would rather avoid. I know I’m probably overthinking it, as you’ll learn, I do this a lot. It’s a work in progress.

We haven’t got long left – so it is exciting in lots of ways, but fear overrides. I don’t know what to expect this time despite having done this before. When I was pregnant with your sister the excitement was more pronounced because the outcome was completely unknown. This time the worry overtakes the excitement because we know how bad it can get. A pessimistic view I know, but in my head it’s also a realistic one. It’s a self preservation tactic, if I expect the worst I’ll be happy when better happens.

I’ve learned some things about you recently that do make me smile. Things like you hate me lying on my right side even though it’s the one I find most comfortable. You kick and kick and kick until I turn back. You don’t like loud noises. Your sister dropped a dumbbell the other day and you jumped with such force I thought you would jump right out of my body. You’re not bothered about baths even though everyone says babies go crazy in the water, neither you or your sister did. You protest after I indulge in too much sugar and you push back now when any one of us prod my bump.

I nearly didn’t write this, this week. It’s maternal mental health awareness week and my feeds are full of recovery stories, whilst I don’t feel like we are any closer to recovery. I know I will recover mentally, because I’ve been in much darker places than this before, but will I ever recover physically? Trauma, whether to the body or the mind comes with very real physical implications that filter into the everyday.

Mourning your old life is a daily battle when it comes to chronic illness and it’s why I find words of optimism so hollow, however well intended.

Still we move through the days, bringing us closer to you, and we hope that one day in the not so distant future these down days will be memories easily forgotten and better ones will replace them.

You could be here in a matter of weeks and I know I have to be strong for you, so I’ll keep fighting.

Baby Cullen number 2. Can’t wait to meet you. ❤️

30 weeks of growing you

April 27, 2021 — Leave a comment

With each week my mobility decreases, yours increases. You are kicking those feet like your life depends on it whilst my vagina feels (and looks) like a punched lasagne. (I hope you grow up with a sense of humour because if I stop making jokes I will die)

Thirty weeks of uncertainty and stormy waters.

Thirty weeks of tests and tears.

Of what ifs, of percentages. Of comparisons. Of risks.

Thirty weeks of unanswered questions, of time spent in survival mode, counting down and hope.

You are so precious. So physical. So big, so heavy. The excitement I’ve been holding back, too scared to make room for, is pushing it’s way through my fear. I won’t lie and say I’m not scared, because I want you to know it’s okay to be scared. I won’t lie and say it’s not been horrifically hard, because I won’t lie to you, ever. With the exception of Santa Claus and the Easter Bunny, maybe also that the ice cream van is out of stock, oh and superheroes are totally real too, your dad is mine.

What I will say is, it’s worth it, I know this every time I look at your sister. She is so worth it and her start was hard too. Carrying her felt hard too. It’s harder with you because we have already had a taste of what it feels like when nightmares happen, but we also know how it feels to pull through them.

I wonder sometimes how people manage to love all of their children equally when they love the first so much. With such visceral intensity. However, I know with certainty that I will love you as much. I might love you differently, but it won’t be less. I will love you as hard, and you will probably be as much of a pain in my ass as she was (occasionally still is) but none of that really matters. Nothing diminishes a mother’s love. It is unconditional. I didn’t really understand it before I became a mum. I love my own mum unconditionally, with forgiveness and without limits, but it’s different when you become the mum. I can’t explain it. I can’t make sense of it, I just know you’ll be loved as fiercely with the same primal instinct that is ever present in my love for your sister.

You’re not an accident, you’re not a mistake, you’re not unwanted. Just because I haven’t enjoyed carrying you, I haven’t loved the process, I just don’t love it. I don’t even like it, but I still know how much I will love you, because I already do.

I’m not a maternal person, I don’t brood over babies, I don’t love being surrounded by other people’s children and chaos. But I love my own children more than I have ever loved anything. With such ferocity, that it scares me sometimes.

Being a mum is scary generally, it’s always guessing what to do for the best with nobody able to give you a definitive answer. It’s always wondering if you could of done something differently. I wonder that about the last thirty weeks. I wonder if I had done anything differently would I feel differently, would I feel more able, less disabled? Sometimes I think I could of tried harder to fight through pain, fed you better foods, looked after myself better. I’ve done my best though, the best I know how with what I have.

I’ve tried, and if I’ve learned anything it’s that my best is all I’ve got, and it’s enough. I hope when and if you ever read these, you will know that despite hopelessness and despair, fear and pain, the goal never changed. The goal has always been to add you to our family someday, even before we knew about it. To love you, to bring you into this world. A world full of uncertainty, but one in which you will be loved with certainty.

The doctor has told us now that you might come early, they’ve told us you might have a hard start, they’ve told us a lot of things that we didn’t want to hear, lots of things that impact both you and I, but we can’t predict what will happen. So I’m holding out for the might nots, because with risk comes worse case scenarios, and we aren’t in control of those, but with hope comes dreams, and we have big dreams for you.

Thanks for sticking with me for these 30 long weeks. Reminding me that every sacrifice, every ailment, every ‘bump’ in the road, brings me closer to 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.

28 Weeks of growing you

April 12, 2021 — Leave a comment

After your sisters birthday it was my own. An event that used to have such a big place in my life but that has dwindled in importance over the years and many are now spent in recovery after the buzz of your sister’s celebrations.

We have been out a few days, me on my scooter and had some fun with it too. There’s no denying that it takes it out of me so significantly now, just popping out for a few hours leaves me feeling like I’ve ran a marathon. The SPD is worsening as you grow, and for the last few days I have been completely unable to get myself up in the mornings. Your dad is having to lift me from bed and before I’ve even got my feet on the ground I am crying in pain and it’s hard. It’s not in my nature to be this dependent on another person it’s also scary and feels like another string in my bow of can’ts at the moment.

On the plus side, and there have been pluses, mentally I feel a little less erratic and panicked and more prepared for the worst in terms of my health and mobility. We have had some changes made to the house which is enabling my independence whilst you’re inside me, and will hopefully continue once you are here. Grab rails are appearing everywhere and though cosmetically unsightly, they are providing me with much needed independence.

We will see you again this week, on a scan and talk to the consultant about your arrival. I hope we’ll be able to avoid going overdue with a planned induction rather than a cesarian, just because my recovery is already a worry, but what will be will be. Now things are opening up again and restrictions continue to ease, I hope extended family will make more effort to be involved and help with your sister if only to take the onus off of your dad. He returns to work this week after a week off, being without him will impact me again. He has been so hands on and it’s fair to say I don’t know what I would do without him how I would of gotten through these months without his undivided support. Your sister is going into holiday club for a few days this week to take the edge off and we’re lucky that she is a sociable little darling who’s happy to make new friends.

She went quiet for a while asking about you but her interest has piqued again and we are getting back to our daily chats and cuddles, though your kicks don’t seem as exciting to her at the moment, your pending arrival definitely still is. Onwards we move through the quagmire of a loose routine and no real structure, getting by on a wing and a prayer, but getting by we are with a lot of love and a little help from our friends. 💙

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.