In the days following my consultation in London even though I was finding the weaning of the drugs terribly hard, I managed to reason with myself when I was at my lowest points. At night I laid in bed devising an email to the clinic saying I was giving up and I could not cope with the side effects any longer, but I never did hit the send button. I still have it drafted and I add to it some days when I’m struggling but so far I’ve managed to just see what tomorrow brings each time.
I decided the best way to spend the following weeks whilst starting on the new drugs was to continue to research and learn as much as I could. The thing I find the hardest with the steroids is the heart palpitations and chest pains it is terribly scary. I was walking the dogs one day and I genuinely thought I was having a heart attack I couldn’t regulate myself and I panicked and called 111. An hour later I was in an ambulance on a stretcher, trying to explain to paramedics and hospital staff my medication protocol which proved difficult.
It’s so hard when the nhs won’t treat me or license the drugs that I’m on for fertility purposes, because then no one has no real understanding. I knew that I knew more than they did, everyone in the hospital showed great interest in my treatment but that didn’t help the way I was feeling.
Seven hours later I was discharged, exhausted and drained with a diagnosis of pleurisy on my lung which they found on an X-ray, I had no symptoms of pleurisy and think it was just by chance that they found it. The consultant did say that due to my now non existent immune system I was bound to contract more serious illnesses that previously would have just been a cough or cold before I was so heavily medicated.
After a long nights sleep I did some reading and decided that I would try to cut out caffeine altogether whilst on steroids as caffeine can cause heart palpitations. Anything I could do at this point to help me feel better I was willing to try, so I have switched to decaff tea, I generally have around three cups of tea a day so i wouldn’t say it’s excessive but I’ve found it easy to cut caffeine out. I won’t really get to test out if it’s had any effect until the next time I go on the full dose of steroids as I’m not sure what effect it would have on the smaller weaning dosage. However it does make me less scared to go back on them thinking that I’ve made some changes.
The next change that I’ve decided to make which I did discuss a few blogs ago, is related to the MTHFR gene mutation and folic acid. I know that I decided to do as I was told and to take the higher dosage but now that I’ve had a 4th loss I’ve decided to do my own thing and self medicate. Therefore I’ve taken myself off the prescribed medication and Ive switched to natural methylfolate, research shows that my body has a higher chance of absorption taking a non synthetic form of folic, so I’m going to give this a try and just not tell the consultant. I have to be my own advocate at some points and if it doesn’t work then I’ll also hold my hands up.
The good news is that so far the hydroxychloroquine has no side effects that I have noticed apart from they are the most awful tasting tablets I’ve ever had to take, but I can handle that. It’s just remembering to take another set of pills in the middle of the day, but I’ll get used to it. As the drug takes 8 weeks to build up in your system before it starts working I’m not sure if I will then notice any side effects but so far so good.
I started to have acupuncture this year and have found it so beneficial to my mental wellbeing and it has helped my anxiety no end. I originally made contact with interest in acupuncture for fertility and the lady that I see does do exactly that and has lots of experience working with Hull ivf patients, she was also a midwife for many years too. I think acupuncture can help with evening out peoples cycles and all kinds of things for fertility, I don’t go along thinking that I’m going to leave pregnant but I do think anything I can do to help does make me feel better.
Funnily enough I never went to acupuncture thinking it would help with anxiety and worry that absorbs me nowadays, however even after the first session I noticed a big difference in myself, I sleep better, I feel happier and I am able to distinguish between rational and irrational thought.
I managed to find an old online forum full of patients that were under the same consultant as me, it went back as far as 2012 up until Christmas 2017 and there was posts every day! So you can imagine how long it took me to read, it was like a novel, it was so helpful and I learnt so much. I also found comfort because there were women that had losses on treatment but went on to have success. In total over 40 babies were born from the start to the end of the thread, so he must be doing something right! I’m just so ready for it to be my turn.
After reading that thread I wanted to reach out and find current patients that are in the same position as me and to find people to talk to that are on the same journey. I’m now in contact with 8 other ladies who are all under the same consultant. We all have a lot in common but also have differences in our treatment needed and our results too. We have formed friendships that provide so much support and I imagine we say things to each other that we would never say to anyone else, because we understand each others level of crazy.
Even though we are all at different places in our journey, we can be happy for those succeeding as it gives us hope and we can make sure that no one is left behind by pulling each other through our bad days. If you ladies are reading this, you should know that you are amazing and give me strength at the darkest of times, so thank you 💗
Sam xxx
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