Six days we had been in newborn bliss. Six days we had been a family of 4. Six days I had had the most wonderful post-partum experience. Minimal bleeding, minimal pain and we were adapting to parenting two children pretty well. On day six we hadn't done anything in particular, we were in the middle of decorating the kitchen/dining room so Dan was cracking on with that, Amelia was in school, so Evie and I were taking the day to relax and of course cuddle! Those newborn cuddles are just something else, the way they nestle into the security of your chest, that newborn smell you inhale as they lay there peacefully... My ovaries are starting to hurt I'm wrapping this up now!
Later in the evening I bathed them both, shortly after I began to feel 'funny'. Then I felt a sudden pain to the base of the back of my head/top of my spine. Working for 111/NHS Direct, I knew the protocol for a headache of that nature but I didn't want the fuss and palava of dialling 999. I thought 'I've probably just overdone' I'll feel better if I just have a sit down. I in fact felt worse. I felt weak and tired and the pain was intense. I rung my GP who advised to dial 999. Urgh.
When the paramedics arrived they did their standard checks and found my blood pressure was high and my HR was 30. Anyone that has followed my blog knows that is in fact the opposite to what I normally run at and unsafe vitals at that. I looked at that 6 day old baby and sobbed as they told me they needed to take me into hospital for further tests. At the time my eldest was 5 and although, sadly to say, she was use to this scenario, doesn't mean to say it was easy to experience at any time. Not only was it incredibly difficult to go to hospital so poorly and leave behind my newborn baby, but because we have no family living close by Dan had to stay at home with the girls. With Evie only being 6 days old it's exactly where I needed him to be though, I felt much better knowing they both had daddy home with them.
I waited a good half an hour in a wheelchair in the corridor on my own before I was seen. Sobbing in the corridor in excruciating pain missing my family. I was eventually taken into a cubicle, at which point, everything went very fast and there was alarming sense of urgency in everybody's tone. I had a nurse checking my BP, another nurse doing an ECG, a Doctor taking bloods and putting in a venflon. Then another Doctor came in attempting to ask me questions, the Doctor taking my blood said to her 'you haven't got time to be asking her questions, as soon as I take this needle out of her hand she's being taken for a scan, we think she has a bleed on the brain'
This was the first I was hearing of a potential bleed on the brain. Laid on a hospital bed they wheeled me down to the MRI scanner. I burst into tears half way down the corridor at which point the nurse confusingly asked 'What's the matter?!' I was really confused by this question.... What's the matter? What's the matter is I'm 6 days post-partum, I've had to leave them at home, I'm being taken for a scan to check for a potential bleed on the brain and I am ALL alone! Unfortunately I'm use to hospital admissions but I had never been so scared in my life.
Shortly after the scan they made the choice to move me to resus as my HR keep dipping under 30, they advised I needed one to one care, the pain was still excruciating despite pain relief. The results of the first scan came back clear, and they advised a CT angiogram was necessary to check the smaller blood vessels to check for a bleed. From resus they moved me to the stroke ward. The CT angiogram came back clear but my vitals were still reading the same and the pain had not let up!
Next test.... Lumbar Puncture. NO! They needed to do this to see if any blood was coming from my spinal fluid to indicate a bleed on the brain. It took A LOT of coaxing to get me to agree to this especially after they read the disclaimer to me informing me worst case scenario I could become paralysed or even DIE! Yep you have definitely just convinced me to let you shove a fuck off needle into my spine! I eventually, with a lot of reluctance, complied to the procedure. They tried THREE times, that's right THREE times! The first time they failed, the second time they hit the bone, OH YES you heard that right, I felt that needle grind my spine like a good'en! I tried to decline the third attempt but the consultant came and asked if he could have a go, so I thought you know what if anyone's going to have a better chance perhaps it's him...
Nope, he hit the bone again. He explained that after giving birth all of my ligaments a very weak so he was struggling to get to the spinal fluid and due to the scoliosis.... hang back the fuck up..... scoliosis? Yes he diagnosed for the first time with scoliosis. I've always walked funny and have a huge complex over it but never had I known it was due to scoliosis! He asked if I would consent to going down to theatre to have it done. HELL YES I will go to theatre of course you can knock me out! That was not the case I still had to be wide awake to curl into a ball for the procedure. So what was the point?! What was the difference? There's more light down there? More light than the lamp you are shining directly on to my spine?
So my next question.... what is the treatment if you find I have a bleed on the brain? The answer... not much, we would probably move you to a more specialist hospital and just monitor you... the type of bleed we think you have will resolve on its own. Happy days then... you do not need to be shoving that needle in my back anymore to diagnose me with something you're not going to treat anyway... bye bye!
So from there they eventually found something to manage my pain and what a relief that was! Now, due to my vitals being backwards they had to stop ALL of my PoTS medication, for obvious reasons I couldn't be taking a beta-blocker when my HR was 30! Towards the end of my stay in hospital they did my lying and standing blood pressure and HR and said the results were still very much indicative of PoTS so I would need to restart my medication. But I felt fantastic!! I hadn't been symptomatic of PoTS during my whole stay and although my tests results showed I should've been on the deck I didn't feel a thing! So, what's the point in taking medication if my condition isn't actually effecting my quality of life!
So I remained medication and symptom free from October 2017 until July this year! The relapse is hard and beyond disheartening and yes I am struggling! I am struggling to stay afloat, I constantly feel like I'm drowning. I'm trying to juggle, being a wife, mum and student nurse, and my biggest fear is I'm going to lose my place in university and not get to graduate and become a nurse. I fear my children will become tired of having a 'sick' mummy that is always tired and I fear that I am a burden to my husband and family and he might become tired of supporting me. I will add though he has never made me feel that way I am so lucky to have a Husband and family that don't think these symptoms are all in my head or think I'm clinically insane (I mean they may think I'm clinically insane for other reasons... who knows?!).
I have lived a normal life, whether that be on a combination of medication or un-medicated and I'm determined I'm going to get there again!
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