To view MASIC’s notice on Covid-19, please click here:
It is official that we have at least another three weeks of self-isolation. Here at The MASIC Foundation, it has been met with mixed emotions. Obviously, we all want to do our best to stay safe and help the NHS, but that isn’t easy, especially if you are living with the consequences of a severe birth injury.
One of our brave MASIC Ambassadors has written about her experiences of self-isolation due to the current lockdown imposed as a consequence of the COVID-19 pandemic. We’re sure many of you are facing similar challenges, and wanted to let you know that you’re not alone.
My injury happened during a forceps birth of my third child, two years ago. I have a ten year old, six year old and a two year old. Since the birth I have suffered with faecal incontinence, I have bowel urgency and accidents where I soil myself on most days. I sometimes have accidents in my sleep and it has also happened during intercourse which was very distressing. I have a very short perineum with scar tissue and pudendal neuropathy which causes me a lot of pain when sitting. I finally managed to get the right help and referrals to the right healthcare professionals around a year ago. Prior to the COVID-19 pandemic I had just had my first appointment with a colorectal surgeon, who was making a plan with the Urogynaecologist and considering if I would need surgery or other intervention. I was having regular physio, including use of a home electrical stimulation machine to use daily to help with my pelvic floor.
Being in isolation during the pandemic has had both positive and negative impact on myself and my family. Firstly, it is a huge relief to not have to rush in a morning and go on the school run. I’ve been off work for six months due to my condition, but as my partner works I used to have to get up well before my children and try and empty my bowel. If I didn’t go to the toilet I was almost certain to have an accident on the school run, as I am so determined that the children will not be late for school. Now in isolation, I just let everyone get up when they want to, which means I can take my time and use the bathroom before they all get up to start the day. I feel so much better for having more sleep, which I think most of us do.
However, before the lockdown I was usually at home on my own so if I needed to go to the toilet urgently I could. Having a busier house now means more little people using the bathroom. I try not to burst in when they are using the bathroom and tell them to get out, but sometimes I can’t help it. So I am probably having more accidents during the day than I usually would. Another issue is that my children are so observant. My six year old has noticed my urgency a lot more than she used to. She started asking me whether I’d ‘pooed’ myself again’, and I feel she has normalised my actions. I don’t want them to think this is normal, but I do want my children to be understanding of my situation.
Another big problem is managing my pain. I’ve managed to get a good combination of pain relief which is really working for me, however as the medication is very strong, I can’t take it when I am on my own with the children, as I am concerned about possible side-effects. So, I find myself in a lot more pain, and with the added pressure of running around after three children this is very difficult to deal with as I can’t lie down as much as I usually would. My youngest child has gone to a private childminder a few days a week since he was four months old because of my injury, so I’ve been able to get jobs done at home albeit slowly and in pain. I am now struggling to get everything done, but my partner has been helping a lot more which is a massive positive and I hope he keeps this up afterwards!
I have left the house to go shopping. I don’t usually suffer with anxiety however the thought of having to queue outside and inside shops is making me panic. I recently queued outside my local shop for 20 minutes but had to abandon my shopping trip for essentials, as I needed to use the toilet. No public toilets were open (rightly so) and I had an accident trying to make it home.
I am fortunate to have a good support network with my friends and family, but due to social distancing, I cannot access this at the moment which is hard to get used to; even asking my mum to sit with my children for 10 minutes whilst I shower.
I’ve been asking my employer about working from home since I had my last baby. I work for a large, well known charity, however they said that my role cannot be performed from home. Recently my co-workers have been allowed to work from home. Although this makes me angry in a lot of ways, I feel hopeful this will open doors for me in the future and they will have to accommodate home working for more people like me.
The thing I have found the hardest during the lockdown is the cancellation of medical appointments. I literally live for those appointments (who knew you could start to look forward to a physical examination?!), because every time I went for an appointment I felt a step closer to being “fixed” in some way, or getting more answers. Now the prospect of not even being able to arrange a routine appointment for another six months and receiving letters saying that my issue is “none urgent” is so difficult. To me it is just as urgent as the day my baby was born and my life has been on hold ever since. I know it is none urgent, and I feel very guilty for even thinking this way when people are losing loved ones; but I can’t help feeling angry. I am very fortunate that I’ve been able to have private telephone counselling for a while now and this has continued. My counsellor has given me a lot of reassurance and validation for the feelings I am having.
I feel like I am two and a half years down the line in recovery and now have some coping mechanisms in place. However, if the pandemic and self-isolation had happened when my baby was new born or even a couple of months old, I don’t know how I would have coped. I feel so worried for other mums with a new baby who have an injury like this.