pregnancy journey

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.

Perinatal anxiety and me

June 17, 2021 — 2 Comments

I’ve written a lot about this in the past, in my first pregnancy it became crippling and really took over my everyday. This time round I’ve had so many physical complications that although this doesn’t help anxiety, it’s actually been a distraction in lots of ways from worrying about all the other stuff that flits into my head when it feels like it. Sounds confusing, I know.

But whilst I’ve had so much to think about, different appointments every week and new ‘diagnoses’ popping up all over the shop I’ve not been left thinking about what will happen when the baby comes too much. Mainly because I’ve been too focused on getting him here in one piece just getting through the weeks. Now that’s coming to an imminent end, doubts are creeping in.

Can I really do this again?

What if I don’t enjoy it, what if I don’t bond with him?

We have no money and have accrued some debt trying to manage my disability this pregnancy. How will I afford a new baby?

What if all of the challenges I’ve been facing hit me after birth and I struggle with my mental health?

What if I have a break down?

What if my body doesn’t recover and I can’t physically care for these children?

What if I mess them up, and I’m just not good enough?

I shared my experience of severe SPD recently on another platform – not even going to link it because the article has been republished with false information and generally isn’t very accurate. That wasn’t the worst of it though, the comments section. WOW. Those things should be banned. One woman commented that I ‘couldn’t value my mobility or my children very much seeing as I chose to have another one even though I’d suffered in my first pregnancy and knew what was coming.’ Another said I ‘should have adopted.’ Another said my ‘husband looks depressed.’

Brutal, but senseless comments from people that know nothing about my life or what led to us having a second baby and the choices we had to make or the mental turmoil we deliberated over. But words once spoken or written can’t be undone. It hurts and it is something I’ve thought about myself often, questioned myself and agonised over in detail, even more so in recent weeks. Some of you may argue if you share online you automatically allow yourself to be subject to negativity and public scrutiny by default, but I counter that with – this is my personal journey we don’t get to question or invalidate people’s own experiences, their trauma, or their choices.

I’m not sleeping – I would say I’m not sleeping well, but I’m barely sleeping at all, having piled on an obscene amount of weight from being so immobile I seem to have developed sleep apnea and that in itself is anxiety provoking so I’m awake at night torturing myself with what ifs and worse case scenarios.

When the baby is born we have to stay in hospital for a minimum of a week, and the thought of being parted from Ciara for that long makes me emotional. The idea that my little girl won’t get to meet and hold her brother straight away, won’t get to cuddle her mum whilst she goes through the biggest change of her life, saddens me. I know and understand the reasoning, though I don’t agree that she isn’t allowed to visit. I get that it’s just a week in the grand scheme of things but I’m still sad about it. I still feel sad about lots of things. I feel sad because I haven’t enjoyed a minute of this pregnancy and at every opportunity I’ve wished it away, and now it’s coming to an end and I didn’t get to even like it.

After last week and me sharing good news that we’d hit a milestone – this week we had some conflicting information and not so great news again. My health hasn’t improved or stayed the same as we’d hope and is now deteriorating again at the final hurdle. It feels like one step forward and ten back as it has throughout this whole journey. Constantly. It’s draining. Some days I feel empowered to stay positive and I do try, but most I just feel physically and emotionally done.

I really wanted to like it this time.

I know with anxiety the whole concept is a bit ridiculous, (I don’t mean that in a critical way) what I mean is it’s a lot of worrying about things we can’t change, things we aren’t in control of, and things that haven’t even happened yet. But it’s also very real. It’s the thief of so much joy and it takes a lot of strength to overcome. Sometimes the battle is long, and other times we are better at controlling it. With parenting comes more anxiety, and it really is a never ending worry, hitting us all differently but equally at times.

I promise to always share the good and bad, and I do fear that maybe I share too much bad sometimes, but I’m just trying to keep it real during a time when I feel so up and down.

It’s like that; my life. It’s a rollercoaster of juggling my health, looking after my babies and trying to get some semblance of living a good life, enjoying it. And sometimes it really is a case of ‘well you were fine yesterday’ I know, crazy right? And today I’m losing my shit and that’s just me.

Anxiety is something that presents in strange ways. I find it really hard to communicate how anxiety effects me to people, even those who know me well. Most of them probably just think I’m a stressy, moaning old bitch (not wrong) but the reality is very different inside my head. For me, anxiety is often restlessness, sometimes accompanied by rage and anger, sometimes tears and fear. My natural instinct used to always be attack first, now it’s always defend, so I’m defensive when I feel attacked. I don’t even mean attacked by people, I also mean when I’m in a place or a situation that overwhelms me. This is another reason I’m worried about being in hospital, staying over night on a ward full of other people and noise, when these are real triggers for me. I don’t like being forced into situations, I like being solitary and if I want to have a cry or a scream I like do it in private. Being surrounded by other mums who’s babies need similar care post partum may be reassuring for many, but for me, it’s my idea of hell. I want to birth my baby, bring him home, lock all the doors and collapse into a heap so that I can process all the overriding emotions I’ve felt whilst carrying him.

Obviously hormones are factoring into my anxiety at the moment but even in general and pre pregnancy – when I feel anxious it can present in any of the three ‘fight, flight or freeze’ responses. It’s not linear. It’s not something that ever really leaves me, and there are times in my life when I’m really good at managing it, and other times when I just don’t feel like I can regain that control.

Luckily for me, I guess, is I’m good at recognising its onset so I am able to at least minimise its effects by surrounding myself with things that comfort me.

It’s all very well being under the mental health team, it’s all well and good reaching out to our GP’s but as far as I’ve found the last 9 months not a single one has listened to anything I’ve said. And whilst I hugely advocate for speaking out when you are struggling, sometimes you just don’t have the energy to force people to hear you, and sometimes you just don’t want to. So getting through in whichever way works is so important.

Pregnancy Timeline

May 6, 2021 — 6 Comments

I use writing tools a lot to make sense of feelings, I always find it gives me clarity and as I’ve had very little actual support for my mental health this pregnancy, despite being under the perinatal mental health team, covid restrictions have played a huge part and the fact I can’t attend groups because of lack of mobility. That said, I’m pretty good at managing these phases if I let myself feel them. So I decided pulling out some old tools might help, and here started the pregnancy timeline.

I’ll explain at the end why this was such an important process for me.

4 weeks – Found out I was pregnant had to reduce and abstain from medications that had been keeping me well. Very anxious, unsure and not feeling excited.

5 weeks – withdrawal symptoms, migraine, nausea and vomiting, unable to get routine appointment with GP. Lots of tears.

6 weeks – Hormonal migraines started coming every 3-4 days and increased in severity and duration. Unable to reduce Migraine meds. Mental health sketchy, had to fight to be booked in with the perinatal mental health team.

7 weeks – High temperature, still sick, time off work, negative covid test, later confirmed UTI at emergency GP appt and course of antibiotics

8 weeks – Booking appointment with midwife. high BP and protien still present in urine. More antibiotics. Discussed medication benefit vs risks.

9 weeks- low mood, tearful and anxious. Migraines still severe. Several trips to maternity in the same week to check blood pressure.

10 weeks- pelvic pain present. ? SPD. Fibro flare up. More time off work.

12 Weeks – First scan. No physical abnormalities present with baby. Heart beat strong. Consultant advised go back up migraine medication. Blood thinners prescribed

14 weeks – Pelvic pain increased referred to physio, no appointments because of covid, sent exercises in the post.

16 weeks – Pelvic pain so severe can’t bear any weight, SPD confirmed, back on crutches again. Heard heartbeat at routine appointment.

17 weeks – Unable to drive, can’t do school runs, more time off work. Mood swings, hormonal allergies and itching.

18 weeks – Felt baby move for the first time.

19 weeks – Reactivation of shingles virus causing more pain & long fibro flare up, prescribed antivirals. Permanent exhaustion.

20 weeks – Start using Avulux glasses, migraines decrease and can reduce migraine medication further. praise be. Twenty week scan delayed.

21 weeks – Gender scan. It’s a boy 💙low lying placenta picked up but not mentioned to us. Warned not everything can be seen on a scan but all good so far with baby growth. 28 week scan booked.

22 weeks – crutches becoming unmanageable with fibro – mobility scooter purchased, gaining weight fast.

23 weeks – Spotting after sex. Reduced fetal movement monitoring. Feeling ashamed and embarrassed of my immobility, weight gain rapid.

24 weeks – mobility worsening, mental health struggling as a result. Feel like a shit mum. Social services agreed for adaptations made in the home, grab rails shower seat etc

26 weeks – Glucose tolerance test – came back negative. Praise be

27 weeks – Almost every day spent in bed, midwife doesn’t reply to message for 10 days. phoned doctor in agony and tears begging for pain relief – Shaun having to lift me from bed every morning before he goes to work.

28 weeks – Growth scan confirmed placenta previa – talks of early cesarian birth. Talks of baby needing to stay in hospital post birth. Talks of NICU and breathing difficulties. Must abstain from sex. 36 week scan booked. Consultant okayed using tens machine for pain.

30 weeks – shingles flared up again, back on antivirals, sitting on ice packs, barely moving from bed. Tens machine doesn’t reach nerve pain.

31 weeks – Not long now but still feeling uncertain – not much advice about mobility after birth specifically if needing cesarian birth. Midwife appointment moved for the 3rd time no support re reducing medication further for delivery to avoid withdrawal in the baby.

In 7 months I’ve had approximately 10 good days. That’s not an exaggeration. It’s the truth. I’ve been unable to work, drive, leave the house on my own, cook a meal, take my daughter to the park, walk our dog. In 31 weeks I’ve been told by people who have absolutely nothing to do with my medical care that I’m just depressed, I’ve been told ‘at least the baby is ok’ and I’ve been told to ‘wait and see.’ And to ‘stay positive’

I’ve been hit with statistics, risks, percentages and ‘can cause’ (‘s) at every appointment.

In 31 weeks my husband has gone from being my lover to my carer. My daughter has gone from having a mum who actively participates in her life, to one who just watches. She has spent more time with her Dad and Nanny than anyone else. She has been going to school for 10 hour days because I can’t do the school runs and I can’t care for her alone in my house when her dad isn’t home. I can’t care for myself alone in my house.

I have gained weight like a duck pending foi gras.

I’ve been told not to wish pregnancy away. To enjoy it. I’ve been told that I’ll forget all of my pain once he’s here.

Despite all of this, every single day all I do is think of the baby. All I do is wait and see. All I do is think of my family. I have lived the last 31 weeks in agony and begged for the pain of labour over how I feel daily – at least then I could have some decent pain relief without worrying it’s going to cause my baby long term developmental damage.

So the reason this timeline was helpful is because, actually, despite all of the shit I have dealt with in the last 7 months, I have kept going. I have made decisions for the sake of the baby and my family that have negatively impacted me but have been important in supporting them. I have survived. I have tried, and I have kept going. I have found ways to push on.

My friend told me about a quote the other day that says

‘Everyone wants to hold the baby, but who holds the mum’

And I have needing holding. I have needed reminding, though even when I have been reminded, I have failed to remind myself.

I have sacrificed a lot in hope, in knowing it’s worth it, in putting other people before myself. I’ve been in agonising pain, I’ve cried and screamed and complained but every single day I’ve still got through it. I’ve had a great support in my close family and friends and I’ve been lucky that people have taken the time to remind me how well I’m doing despite the challenges – but I wrote this to remind myself. It might seem like as long as the baby is ok everything is fine, but that’s so far from the truth when it comes to pregnancy and health. A healthy baby might be the most important thing. But it’s definitely not the only important thing.

And while I’ve been thanking everyone for their help, I’ve been condemning myself for needing help in the first place. I’ve been drilling myself every single day about how useless I am. When actually I’m not useless. I’m not redundant in this journey, I am the journey. And when we come out the other side whatever the outcome looks like, I plan to celebrate the fact that I made it.