I decided while its still fresh in my mind I should finish telling my story after being blinded by grief, literally! As I mentioned in my other post, the doctor at the TIA clinic said not to worry and had ordered an MRI scan of my brain within 4 weeks. Well the day after this appointment I was panicking with how bad my eyesight was in my right eye. I asked Fabian to phone the opticians to try get an emergency appointment to put my mind at ease. I was worried because during pregnancy I kept seeing dark spots in my vision and although the optician couldn’t see anything he asked me to come back in a month in case anything was progressing. The only problem was then we found out about Silver and our priorities changed so I never got around to going back. Of course I did the natural thing of going to google too and was now worrying about cancer or a brain tumor- like you do!
We had a problem however, it was the bank hoilday Easter Friday. Opticians were either fully booked or not open. We were advised to phone 111 and ask for advice. They told me because my vision hadn’t improved and my sensation in my arm and leg was still not right that I needed to be in hospital within the hour. Anyone who already has children will know this is not easy to do with a toddler. Even if I could drive it wouldn’t have been safe, so we all went together. This time when I saw the triage nurse instead of going back to the regular waiting room I was given a wristband and sent to the doctors side where all the cubicles are. So already I was worried it was more serious and perhaps I had had a stroke. This was a very difficult situation to be in, I was worried about my diagnosis, upset seeing all the generic hospital reminders of Silver and also trying to keep a toddler entertained without disturbing other patients.
So I saw a doctor who did all the grip and coordination tests and then waited for a stroke nurse to come speak to me. We had thankfully called for my parents to come collect Beau so he could be taken care of whilst Fabian supported me. What I never expected however was for her to suggest I get admitted into the stroke ward in a different hospital!! I couldn’t think of anything worse considering the circumstances and trying to grieve. So naturally I broke down in tears and desperately didn’t want to go. But we all knew I’d only worry if I didn’t go, plus she told me they might do the MRI that night and then let me come home. Naturally I queried us driving ourselves so we could at least go home and get things in case we stayed overnight. But nope the stroke nurse wanted me to go via ambulance. So of course we expected to be transported straight away since they implied it could be serious and decided we wouldn’t even have time to get phone chargers from the car. This is the NHS we are talking about though, so obviously we somehow ended up waiting over two hours without being told it would be such a long wait that we would have had time to even send Fabian home to get overnight items.
To make matters worse they kept checking me while we waited for blood pressure, pulse and temperature and my heart decided to play up! My pulse was jumping all over the place so I had to have an ECG whilst I waited. Thankfully it showed all 4 valves were working although it did have a little blip it was perfectly fine. After a very long wait we did finally get transferred via ambulance which was fine, there wasn’t really any reminders of Silver in there and in hindsight it was a good job Fabian fell asleep during the journey! The ambulance crew took me straight to the stroke ward and got me admitted.
Panic set in as I was guided into a large room with 6 beds, one of which the assigned me to. Naturally I was the youngest person in the room by about 50 years! I suffer general social anxiety and so being in a room with other people where I would potentially be expected to sleep I found quite overwhelming. I was very confused about what was happening but the thing that triggered me was a woman opposite took a nasty turn. She was on a monitor very similar if not the same to what Silver was on. As soon as she took a turn the monitors went crazy with beeping. The exact same beeps I’d heard the night we lost Silver. It was completely overwhelming and I broke down. Fabian had to very quickly go ask if we could go somewhere else and so they thankfully sent us to the quiet room while they made up a private room for me. The last time I’d been in a quiet room was due to Silver passing away…
The worst part about the whole night was not having phone chargers with us and we also obviously didn’t have our car with us either. So we needed to conserve battery to get transport in the morning. Sitting within four walls with a television you have to pay for for it to work meant way too much thinking time. this night was quite possibly one of the worst nights we’d had since losing Silver. It was like our own personal brand of torture, being left in a room where I had no home comforts to help me sleep, still hearing beeping noises all night and generally being in an environment which was the perfect trigger after what we had been through.
I had a complete breakdown during the night. I couldn’t sleep and I just needed to get out of that environment. The main nurse was not so understanding nor friendly and gave a tough love approach. This just made me more and more angry, I was getting close to self harming I was coping so badly. in the end I spoke with the doctor around 4.30am and she granted I was okay to go for a walk if I wanted to to clear my head and simply get some space. I felt like we were doing the walk of shame as we walked past the nurses station to the exit after they all knew I’d just lost my shit. And of course this was a trigger too! At SCBU they also had a similar nurses station outside silvers room and it was just another painful reminder. Its them sort of moments where I don’t know what I’m meant to do, hold it all in and feel a lump in my throat and pain in my heart or completely break down in tears and collapse. I write this blog to help people understand its okay to talk about your beloved baby but even I am guilty of sometimes trying to put on a brave face.
Anyway, long story short! I had an MRI which said my brain was fine and it wasn’t a stroke and they concluded it was a hemiplegic migraine. Basically the most severe form of migraine which mimics a stroke and you don’t need to have a headache to get it. I was told it was likely caused by the stress of losing Silver and they have no idea if it will happen again or not and if it does how often it might be. They told me my vision would go back to normal within a few days though which it didn’t. I still have blurred vision in my right eye but after an opticians appointment today I’ve also been told it was likely a hemiplegic migraine and although my eyesight has got worse and I need new glasses there’s nothing serious wrong with them! Oh and I also walked away looking like I had self harmed because their blood pressure machine left awful marks on my arms which is so weird considering at Newcastle I had my blood pressure checked like 4+ times a day for almost two weeks and it never did it then!
So in conclusion it was a completely horrendous experience and I keep asking the question why me because I honestly don’t think the timing could have been worse after losing my baby in hospital to then be forced back into somewhere which had so many painful reminders and too much time to think. I am now focusing on the one thing every parent should be doing in this situation – self care. I am taking the time to do things I enjoy (mainly gardening and reading books) and focusing on trying to fix my poor sleep and get lots of healthy food into me to make my body at least feel the best it can even if my heart hurts and I feel a little empty on the inside.
Lets hope I don’t have any more stories like this to share with you any time soon!
Until next time
(oh and if you’re vegan be prepared if you ever go into hospital! I got a packet of crisps and bread the night we arrived which I made into a sandwich and the next day I thankfully got aubergine stew- better than nothing! And it turns out people still have no idea what vegan means – they still thought I could have cheese, butter and fish…!)