Hi all! I hope that lockdown/quarantine is treating you okay. Personally, it was pretty smooth sailing to begin with, but this last week I have found tougher. I think it’s partially the weather. I have also noticed a dip in my IBS/mental health this week, leading to me taking half the week off. So I thought I’d give you all a little update on where I am now that will also hopefully help me once life is back to normal and I can have an appointment with a specialist.
I had my second hospial appointment in March, which was a mixed experience. While the doctor (possibly a registrar) did book me for some further texts, which were unfortunately cancelled due to COVID-19, he initially was quite dismissive, because the pills appeared to be working (in that they had lessened my symptoms, not got rid of them entirely). I had to wonder if it was possibly because women’s symptoms are often played down in medicial scenarios, but maybe that’s the ardent feminist in me. Anyway, I wasn’t happy to leave things as they were and come back for another appointment in a year, as he initially suggesteed, and while I wasn’t exactly thrilled by the prospect of the tests (which, when I eventually have them rearranged, I will document here), I was pleased something was being done. As I have said, these have had to be, rightly, cancelled because of the current pandemic, so now I feel a bit like I’ve been left in limbo.
At the beginning of the outbreak (from 11 March to be precise), my IBS was better than it had been since July 2019, but not as good as it had been in March 2019. (I can pinpoint the worsening of my symptoms from about late June/July 2019). That is to say, while I didn’t feel so unbearably nauseous that I couldn’t leave the house at all and had resumed some of the social activities I had previously enjoyed, such as going to coffee shops with friends, I was still very anxious about social situations that I ‘couldn’t leave’ (e.g. theatres, cinemas, restaurants). My normal everday life was slowly resuming, I was able to work with more ease and was enjoying some more freedoms, thanks to a combination of the medication the doctor had prescribed (pizotifen and stemetil) and some counselling/CBT therapy I had got from the Wellbeing Service. Once lockdown was announced, I wasn’t too worried about how it would affect my day-to-day life, as I am self-employed and work from home anyway, but I was worried that it would constitute a step back in the progress of my IBS. This was because A) my tests were inevitably cancelled, despite being due to happen right at the beginning of the lockdown, and B) I had been slowly reintroducing the social activities that made me most anxious and I was no longer able to do this. However, I kept taking the medication and felt generally okay.
Fast forward a couple of weeks and I had noticed and effect on my IBS. I was beginning to feel slightly more nauseous so began to regularly take the pizotifen and lessen the amount of alcohol I was drinking (prior to this, the doctor had told me I could take the pizotifen as needed, e.g. if symptoms worsened, take it until I had three symptom-free days and then ease it off again).
Fast forward again to last week. I suddenly crashed on Wednesday. Despite consistently taking both pizotifen and stemetil, as well as the antidepressants (sertraline) that I was prescribed aged 18 for depression, my nausea had been creeping back in and I felt horrible that day. It was weird though. I felt exhausted and achy, as well as feeling nauseous. And the nausea was different. Instead of being constant, it came in waves meaning that I could eat and get on with some tasks when the wave was gone. And the nausea had changed from feeling like a bloated balloon and being relieved by passing gas, instead I felt bilious. I felt like I was on the verge of retching or vomitting and it was associated with some acid reflux. Taking the regular medication seemed to help a little, but didn’t fully get rid of the symptoms.
Thankfully, this did abate and I felt better in terms of the nausea on Thursday and Friday and today. However, I am left feeling very drained from this very severe attack of IBS symptoms and, as work was quiet anyway, I have taken these days off to ‘reset’. However, I am left wondering what caused this particuar bout, as my diet had not changed and I was under less stress if anything than the previous weeks. The only conclusion I have been able to draw is that I am susceptible to changes in pressure (our weather changed from very sunny and dry to overcast and raining very suddenly), which gives me slight headaches, which in turn may have worsened the nausea. I also noticed that I was experiencing some ‘referred pain’ in my right arm (which did make me panic a bit that something worse was going on) and breathlessness. And of course, this had an effect on my mental health…
As I said above, I was prescribed antidepressants at age 18. I had a really down period, due to stressful life circumstances, and after being diagnosed with depression and trying counselling, I opted for medication to help boost my mood. It’s not been plain sailing since and maybe I’ll explain this further in another blog, but I am now at the point that I take a much lower dose of my antidepressants and generally feel well, unless I am experiencing stresses and troubles, as we all do. I have to remind myself during these times that it is normal to feel down about certain things and that that doesn’t necessarily mean my depression is rearing its ugly head.
All that being said, my IBS is definitely one of the factors on my mood. It’s a bit of a chicken and egg situation – is my IBS worse because I am down or I am feeling depressed because my IBS is worse? In this particular flare-up, I wouldn’t be able to tell you, but I know that I have been feeling more down this week. A) It’s exhausting feeling unwell and B) I have concerns. My concerns are, of course, the normal ones we are all experiencing in these uncertain times (will I and my family stay healthy? when will life return to normal? will my job be affected? etc.), as well as some additional ones due to my personal situation. I have a lot of guilt about these concerns, because they seem so small and selfish when people are dying from COVID-19, but life goes on, even in these troubled times, and it is okay to feel bad about things that would make you feel bad in normal circumstances. My biggest concern is therefore: this lockdown is a set back to the progress I was making with my IBS and I will never (or at least not for a very long time) feel as well as I did a year ago. This will affect my work, my ability to travel, my hobbies (I love going to the theatre and acting in amateur theatre but haven’t done either for about a year), my relationships with friends, family and my husband and, well, everything!
Having talked over my worries with my family, friends and husband, I have made the following decisions:
1) I have contacted the Wellbeing Service to seek help for my mental health. While I only had one ‘bad day’ last week, the waiting list is very long and things could get worse. Also, if I’m honest, I think everyone could do with counselling right now!
2) I will try not to worry about things I can’t control. I have to accep that this is my life experience right now and things will change for the better. If that takes a few years, that’s okay. I’ve got time.
What I’m hoping by sharing this with you is that you may find this reassuring if you are also struggling at the moment. Things are tough right now, especially if you’re living with a chronic illness/disease/syndrome, but they will get better. 🙂 Also, if anyone has any suggestions of things to try to help my symptoms, let me know! Feel free to chat to me in the comments or on instagram.