Life after secondary Symphis Pubis Dysfunction.

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.

35 weeks of growing you

It was going much better until your dad and I went out the weekend and it threw me into a flare up. Again. We were only out for 2 hours.

So whilst Saturday was a good day Sunday was not.

You know that sleep is evading me, I know you know, because you’re awake with me – it’s not unusual for that to happen this late in pregnancy, some might even argue it’s par for the course and being tired now is some kind of subconscious way of prepping me for your arrival. Maybe, except it’s now making me really unwell again. I’m getting about 2 hours broken sleep a night. I’m having flare ups of fibromyalgia symptoms that I can’t treat. I’ve started getting the skin crawling sensation again, from head to foot – it lasts hours, sometimes days. I have been desperate for cold showers at 4am and I’m scratching so much my skin is bleeding and marked.
I’m also feeling rage viscerally, like I could actually start caving your dad’s head in if his foot touches mine in the middle of the night, because the slightest touch sets my whole body off with paresthesia.
Itching, numbness and tingling are common symptoms of fibromyalgia, except that usually they would be treated with heavy duty drugs. They’re also not uncommon symptoms of pregnancy, but you can’t take heavy duty anything, when you’re up the duff.
I phoned maternity Sunday who wanted to see me urgently to rule out intrehapatic cholestasis…. so we did the 80 minute round trip to the hospital again to wait and see if you have to come out even earlier than your planned early delivery.
The sun is not a helpful addition for me at the moment. It’s making my symptoms worse. It’s nice for my mood, but as much as I’d like that to be enough, as much as someone might tell me it’s enough, feeling better mentally doesn’t provide a cure for a physical problem.

Next week we find out hopefully how you’ll be making your entrance. I’m excited and plagued with anxiety at the same time. We know we have to stay in hospital for a couple of days minimum, and that’s bothering me because now we have your sister, your dad won’t be able to be with me every second. I don’t feel confident about doing any of this alone. I’m frightened now that things have taken another turn and that’s how quickly it happens. One minute we’re loving life and trying to move forward with positivity and the next it all comes crashing down in an instant. I have hope that if it can change this quickly, the positives can also come as quick and we can be pleasantly surprised too.

I’ve been solely focused on you and the few people that have been present on this hellish journey with us. Whilst trying hard to give less thought to the people who haven’t shown an interest. I don’t blame people for not wanting to jump into our hell, I know they have their own. But recently, I really have needed to remind myself that everyone has their own shit going on and I shouldn’t take it personally. I am mindful of this and I am giving people the benefit of the doubt, and accepting my journey isn’t someone else’s to bear, but sometimes I find that it still stings and I get hung on up on thinking about it. It’s still hurtful that people I consider close friends, people who I’ve involved in all big life events like your sister’s christening and our wedding have just stopped bothering. I know as a 33 year old woman, mother and person who can be totally overwhelmed with her own life, how hard it is to sometimes connect with people, so I am conscious of this, and the older I get the better I am at empathising with other people’s struggles. Occasionally though, I still, rightly or wrongly, feel their absence like rejection. I’m human at the end of the day, and maybe too honest about this stuff. When you grow up, you’ll go through all sorts of life trials and hurdles, but you never really stop needing people in your corner. Luckily for me I have my mum and your dad always. And luckily for you, you’ll have all of us.

Things are easier now restrictions have eased and people are helping us keep your sister busy again. She is happiest when she is busy and that has taken some of the pressure off your dad, which makes me feel less like a burden on him. I worry sometimes if one day he will wake up and feel like we’re a full time job, but he’s a good man, I hope you’ll end up just like him.

I’m not ready for your arrival if I’m being honest. People keep asking me if I’m ready but I’m not really, because it still feels like there’s so much we don’t know. Is anyone ever really ready though? I do know it will all fall into place when you’re here as life often has a way of working out.

Can’t wait to finally announce your name either! See you soon little chief. 💚

30 weeks of growing you

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.

What’s it like to be half way through a high risk pregnancy?

Lonely. Because everyone experiences pregnancy differently and when you’re more worried than you are excited, people think you’re being negative.

Hopeful. Because hope is all you really have. We can’t change the future or the past but we can hope for better.

To get excited could mean to jinx it. I don’t want to rave about how excited I am when I still can’t fully envisage a happy ending.

Only another 4.5 months to go, I can do this.

Oh shit another 4.5 months left of this, I can’t do it anymore.

What does high risk mean?

Different things for different people, even pregnancies for mums without underlying health issues come with environmental risks. Sometimes the risk will be more prominent for the mother and sometimes for the baby. But risk factors can be present for both.

What does in mean in my case?

For me, it’s meant the risk of long term immobility because my Symphis Pubis is at risk of rupture and I can no longer walk. It means another 4.5 months minimum of immobility to go. If the SP ruptures it could mean further more extreme long term disability, loss of mobility, incontinence and need for surgical intervention.

Preeclampsia. You are more at risk of preeclampsia if you had it during a previous pregnancy, which I did. I have had also high blood pressure throughout this pregnancy along with chronic migraine. Migraine can be an indicator of preeclampsia and I’ve had one every 3-4 days for the last 22 weeks. So you can imagine the worry is ongoing, and the risk of early onset preeclampsia is higher. Survival rates for babies increase significantly if preeclampsia is developed later in the pregnancy.

Withdrawal. 1 in 3 babies exposed to medication in utero are at risk of being born with Neonatal Abstinence Syndrome. Ciara was born with NAS from antidepressant medication. I no longer take antidepressants but I still take medicines that I need to be able function medication that I will be on for the rest of my life in all probability. I take more medicines than I was taking when pregnant with Ciara so our risk is already much higher this time.

Underlying health conditions. Though Fibromyalgia & Migraine don’t directly impact the baby during pregnancy, the reduction in medication along with hormonal changes exacerbate symptoms drastically, and I have spent the last 22 weeks in pain, every second of every day. There are no ‘good days’ we are getting good hours and that is the best we can hope for. We know pregnancy is impacting my health, but we don’t know what it means long term.

When you tell me it’s not forever I am reminded of how long I have left to go being unable to walk, dress myself and cook, and that actually as a functional human being I was already struggling. A positive mindset is very difficult to hang onto when you lose your sense of self through physical disability. Your mind knows what’s going on but your body doesn’t do what you want it to.

When you tell me you’re excited for me I’m reminded of how scared I am. I’m reminded that I too should be excited, instead I’m fearful.

When you ask how’s the baby? I’m reminded that I’m their house and I don’t know really how they’re doing, not really, because until they are here and in my arms I won’t know if all of the above risks have impacted their development. I wish you would ask me how I am instead because that’s a question I can answer. But when you do and I’m honest I feel like it’s the wrong answer and I’m a burden, so again I feel forced to stay optimistic about something that scares me.

It’s been 22 weeks of anxiety, worry and physical disablement for me and though we have hope, hope is still all we have.

Nobody knows what to say so they stop saying anything at all and some might question why I even bothered to get pregnant in the first place if all I am going to do is complain. But my complaints are not born out of a dislike for pregnancy. They aren’t because I don’t want my baby. They are born out of fear and worry and the inability to fix a broken body. They are born from exhaustion, and guilt and trauma.

I do need help, but I won’t ask family and friends for it because it makes me feel like more of a failure and because I know that every single person in the world right now needs something. I know that people are all going through stuff, maybe worse stuff like dying and losing loved ones and everybody’s mental health is in a state of decline, so what makes me special? Nothing.

So why am I speaking up? Why don’t I do my wallowing in private? Because I still want to feel connected. Because I don’t want to be the person who suffers in silence anymore. Because if it was my daughter going through this I would want her to feel able to open up in whatever form that helped her, and incase you’re new here. Writing is what helps me.

Today we found out the gender of our baby, and all I could think was at least they’re alive. Grief does not only come from loss, I am grieving the excitement I want to feel, I’m grieving the process, and I’m grieving past pregnancy and birth trauma that still haunt me vividly whilst I wait for the arrival of my second child and hope that when they get here I will be strong enough to keep them safe. I am grateful that we have gotten this far, and I am hopeful that will can get to the end.

I’m grateful for a little girl who can’t wait to find out if she’s having a brother or sister and who has enough hope and excitement for all of us.