Chronic illness & Maternity Care

I’ve been sharing my experience of pregnancy while living with a chronic illness. My last two blog posts have covered Managing My Fibromyalgia during Pregnancy & Arthritis & Pregnancy . I’d like to share my experience of accessing good maternity care & the support I’ve received so far.

The most difficult part of my journey was conceiving & coming off medication. It was a testing time coming off Methotrexate & reducing painkillers. I had a supportive Rheumatologist who respected our decision to have a baby & she supported me to reduce medication. She also referred me for further tests with infertility Specialists & I was referred to pre-pregnancy counselling.

At the time, I underestimated the importance of the pre-pregnancy counselling, it helped put a plan in place for when I did get pregnant & they made it clear that I would be consultant-led with regular hospital appointments & check ups.

At first, my maternity care was based with the Community Midwife as my GP arranged the first appointment. I had made it clear to her that I would be consultant-led & asked about the referral process to the consultant in question. She was dismissive of this & instead I was assessed by a consultant at the Health Centre who deemed me as “green” pathway & not a high risk. This didn’t sit well with me & my gut instinct told me that I would have to push for more support.

I chased up the hospital referral for the consultant & after many phone calls, I finally was given an appointment for the consultant at the maternity unit & was prescribed a low dose of aspirin as required for pregnant women with chronic conditions.

This was a turning point for me during my pregnancy & I’ve been seen every 4 weeks by consultant & midwife with regular growth scans. The maternity support I have received has been consistent with an assigned midwife & consultant who are aware of my conditions. I’m now 30 weeks pregnant with a clear plan in place with the view of being induced at 38 weeks.

If you are pregnant with a chronic illness, have a plan in place & ensure you receive the right support & don’t be afraid to ask for more support.

Baby Kelly,28 week scan.

This post was also published by The Mighty Site & can be accessed here:

https://themighty.com/2018/03/maternity-care-arthritis/

Managing My Fibromyalgia during Pregnancy

Since I was diagnosed in 2016, I’ve struggled daily with widespread pain, brain fog, anxiety, migraines, IBS, skin sensitivity & sleepless nights. Living with Fibromyalgia was never easy before I conceived & I knew that it would continue to challenge me during my pregnancy.

Similar to my Arthritis, the first 12 weeks of my Pregnancy were relatively pain free & I felt a burst of energy like never before. I was able to walk in the mornings & got through much of my days pain free. I made the most of this unusual feeling & was able to enjoy a trip away to New York & Philadelphia. Thinking back, I would have struggled to enjoy that trip with Fibro flare ups.

Although the symptoms of pain had eased during this time I experienced morning sickness or should I say all day & night sickness! From the moment I woke up until last thing at night I felt sick & I developed a sensitivity to smells. Even the smell of my husbands aftershave was enough to tip me over the edge.

From week 12-20, the little burst of energy I had left me & the fatigue creeped back in. I struggled to find a work-life balance & was so exhausted after work & I felt myself sliding back into a flare. My IBS symptoms were active during this time which left me feeling sluggish.

As I mentioned in my previous blog Arthritis & Pregnancy, I was diagnosed with Symphysis Pubis Dysfunction (SPD) also known as Pelvic Girdle Pain which is common in pregnancy. This has caused much of my pain to be in my hips & lower back.

My fibromyalgia has been up & down during my pregnancy but I do feel like I’ve been able to manage it & battle through it. I was relieved to experience 12 weeks pain & flare free & I made the most of that time. I’ve now reached my third trimester & final stretch is in sight.

This blog was also published on The Mighty & can be accessed here:

https://themighty.com/2018/03/managing-fibromyalgia-during-pregnancy/

Mother’s Day

I wrote this for Mother’s Day on the 11th of March & posting it on International Women’s Day. I feel it’s a fitting post for both.

I’m well aware that life with a chronic illness has been just as difficult for my Mum as it has been for me. From a young age I’ve been attending hospitals for various conditions & my mum was always there supporting me & making sure I followed treatment plans.

She was there every step of the way with me, she endured as much of the pain as I did as she watched me & had many a sleepless night looking after me. Not once did she complain, or question my pain & fought hard for me to get support.

Many times I would falter. I would question my ability to do things. I wanted to give up. It was that voice of my Mum in the background “Leann, you’ve came this far. You can’t give up. You can do this”. She reassured me things would get better & she instilled in me a can do attitude where giving up was never an option.

A strong, independent & determined women who brought me up on her own & supported me through High School exams & University. Through the tears & tantrums she guided me.

I’m blessed to have such a strong women by my side & I hope that I’m half the Mum she is to me.

Photo by Premier Photography

Arthritis & Pregnancy

The most difficult part of my journey has been conceiving & coming off medication. It was a testing time coming off Methotrexate & reducing painkillers but ultimately it was worth it.

I’ve been lucky that during my early stages of pregnancy my symptoms had reduced & this is due to the surge in hormones.

The first 12 weeks of my pregnancy were the best for me & I was able to walk in the mornings unaided without pain. My arthritis affected my feet the most & it caused so much pain when walking so it was quite the relief that this pain had gone. My knees had previously required steroid injections every few months but were holding up well with no fluid gathering. Overall, my arthritis symptoms had eased during this time & my mood had lifted to a happier & optimistic one.

From week 12-20, my body changed the most with the most noticeable change at 16 weeks with the appearance of the bump. Fatigue started to kick in & it was exhausting managing work & home life. At 20 weeks I was in denial about my increased pain & tried to battle through it without support.

At 22 weeks I was diagnosed with Symphysis Pubis Dysfunction (SPD) also known as Pelvic Girdle Pain which is common in pregnancy. It causes joint pain around the hip, pubic bone & lower back. I self referred to maternity Physio who confirmed it was indeed SPD & adjustments were made with crutches & a maternity belt.

22-26 have been the most challenging because of the pelvic pain & it’s resulted in time off work which I was reluctant to take. Unfortunately, I had to as the pain has been difficult to manage & I would have been unable to sit at my desk for long periods of time & pain insomnia doesn’t help matters.

I’m now at 26 weeks & I’m consultant led at the Hospital with a supportive midwife & consultant. This means I get appointments every 4 weeks with growth scans starting at 28 weeks with a view of being induced at 38 weeks. I’m also on aspirin due to my arthritis which was recommend by consultant & monitored by him.

Despite the increased pain I am doing well & feeling happier & excited about the future.

You can also access my story published on The Mighty Site:

https://themighty.com/2018/03/what-its-like-to-be-pregnant-and-have-arthritis/

In Memory of my Nephew

On the 24th of February 2014, my nephew Tyler was stillborn. The awful news tore through the family, grinding us all to a halt & filling us with utter sadness. Our happiness & joy of a new baby coming into to the family quickly turned sour to heartache & pain.

Not only did it affect my brother & his wife but the wider family were devastated. As an Auntie, I felt lost & heartbroken & I turned to online resources to help me through this.

The Stillbirth & Neonatal Death Charity Sands provided me with much comfort & support through this experience. The group meetings provided great support & comfort to both my Brother & Sister in Law. Peer support & a safe place to talk helped them through their most challenging point in their lives.

In Memory of Tyler’s 4 year Anniversary I have donated money to the charity Sands & to raise awareness of the great work they do to support families who are affected by stillbirths & neonatal deaths.

For further information & support please visit: https://www.sands.org.uk/?gclid=EAIaIQobChMI9arqhey02QIVBomyCh3OjQuBEAAYASAAEgIrq_D_BwE

A Valentine’s Night Like No Other

I’m not the biggest fan of Valentine’s Day & it’s took me 7 years of celebrating it with my husband to finally enjoy it. I was reluctant to spend it in a overcrowded restaurant with the added pressure of eating dinner in under an hour, before the Waiter gently pushed you out the door for the next set of love birds to arrive. I was reminded of this mayhem as we drove past my favourite Italian Restaurant in Glasgow to see it queued out the door and onto the street!

Instead,we booked a private baby scan at Baby Scanning, Glasgow. I was a little disheartened after my 20 week scan as my little one was lying in an awkward position & we didn’t get any clear scan photos. More than that, I wanted to know my baby was healthy & doing well.

It’s only natural to feel anxious as a first time expectant mum & to put my mind at ease I opted for the 4d scan. The scan was 45minutes & it was great to lie back & watch it on the screen. Our little baby is 24+5 weeks now & our active little one was kicking about with their legs over their head. Time seemed to stop as I was lost in the moment of watching my little bundle of joy move around & was lucky enough to catch them yawn – it’s a hard life.

Not only did we get to see our baby but we heard their heartbeat & got a lovely little keepsake which was the heartbeat inside a teddy bear.

Perfect way to spend our 7th Valentine’s Day together ❤️.

Fertility Support: How to Plan & Prepare

My husband & I went down this route after two years of trying & struggling to conceive. My periods were irregular because of medication I was on for my Arthritis & Fibromyalgia. So it was difficult to track when I was ovulating & we were very much in need of the support from the infertility service.

I had to get a referral from my GP to the consultant at the hospital but this wasn’t a straight forward process. I was 25 at the time & I remember vividly the GP commenting on my age & how I had the rest of my life in front of me. She uttered the words “You’re 25, not 35.. plenty of time for a family” & I quickly chipped in to remind her that it was my choice. I never did get a referral from that GP but that didn’t stop me. I went to another GP, explained my circumstances & the referral was made.

After a 6 months wait, I was seen by a Gynaecologist who examined me & discussed the issues I had been having. I remember telling her the main reason I was there was because I was looking for answers. Her response stays with me to this day & at the time I didn’t understand what she meant. She told me not to look for answers because they might not be there, I might never get the answers I need. It soon made sense to me that this would be the case.

The first appointment with the infertility service was with a Nurse who took our medical history, performed blood tests, ultrasound & a further appointment was arranged. The appointment focussed on do you drink alcohol? Do you smoke? Do you take drugs? The line of questioning changed to weight & the dreaded Body Mass Index (BMI). I’ll be honest my weight and BMI fluctuates; managing chronic conditions & trying to be active is difficult & this was reflected by my weight.

Don’t search for those answers; what if they do remain unanswered. Most couples who receive fertility support are classed as “unexplained fertility” & we fell into this bracket. I hated that it was out-with my control but so many things remained in my control. I stopped drinking alcohol & I altered my diet for it to be more healthy & found a meat free diet was much more beneficial for me.

The best advice I would give you if you are about to embark on your journey is to prepare, support each other & aim for a healthy lifestyle. If you get the opportunity I would recommend pre pregnancy counselling, it’s especially useful if you have chronic conditions & are on medication.

Still to this day, I remain in the unexplained category but with changes made to my lifestyle I’ve been lucky enough to conceive without any support. Those questions still remain unanswered and I feel very lucky to have conceived before starting the IVF journey.