I think i fell asleep about 2am. The screamer chatted til 12.45am but then i had obs at 1am so couldn’t settle again.
I woke up a couple of times and have been wide awake since 5.10am.
Coupled with the 20 minutes of sleep Sunday, i think its safe to say I’m probably a bit tired.
I’m having to have regular obs as the Lemtrada can affect my heart rhythm (so far so good) and the steroids can affect my blood sugar. I tested at 15.5 and 14.9 yesterday. The higher one was just after i ate and the 2nd one 2 hours later, but i had had a packet of crisps and a chocolate bar inbetween as the steroids make me HUNGRY
The chest tightness from yesterday was relieved with my inhaler easily enough. I also got very achy like i did back in the early days of my symptoms and i felt a burning itchy sensation but no rash as yet.
Lets see what today’s dose will bring
To be continued…
The steroids are still vile as is the taste they leave
Last week we got back from 10 days in Northern Cyprus. We had a lovely time, Little T, particularly so!
The flights over were fine, but the layover in Istanbul was beyond stressful. Mum and my Bro went missing as we were separated getting off the plane, i had their passports and boarding cards, so they were stranded, and it took well over an hour for someone to take me seriously. This all because my Mum uses a wheelchair when travelling.
Anyway, we got to the hotel in 1 piece. Mums wheelchair spent the night at a different hotel mind you as it was unloaded incorrectly from the transfer!
My Grandad then passed away whilst we were there, but we tried to make the most of it. I think that’s what he would have wanted.
Little T was known throughout the hotel and down in the harbour. He managed with the heat incredibly well but isn’t a fan of a shower. He discovered chips and ate them everyday, along with Cyprus sausage, he learnt lots of new words and took lots of walks (not independently yet).
Since being back, I’ve booked Christmas dinner in Leeds, only to be told 20 minutes later, I’m having my MS treatment the week before Christmas and that kinda is the worst timing ever.
Ill be in hospital for 5 days from 17th Dec. Ill be given Lemtrada via infusion over those 5 days. The medication will bind to and destroy my white blood cells so ill be immunocompromised following the treatment. So being in a pub full of people 4 days later isn’t ideal!!!
Mind you, nor is handling strawberries due to the Listeria risk, but you gotta live, so ill be sat in the corner come Christmas day, keeping away from people!!!
I honestly thought after losing 2 babies and doing 9 rounds of IVF, I’d paid my dues, seems that’s not the case!
How do you reconcile being broody versus having MS?
How do you know its not just jealousy? There have been a fair few pregnancy announcements of late.
How do you know when the time is right to try again?
My head’s a mess. I really do want another baby. Sensible me thinks i should wait, my heart doesn’t think it can take it.
If i start MS meds, i have to be med free for a year before doing IVF again.
The longing for another pregnancy and baby is overwhelming at the moment. The idea of waiting another 18 months at least, scares me, the thought of feeling like this for that time is miserable.
I worry i won’t manage with 2, practical stuff i can sort, but the idea of Little T fighting with his sibling scares me.
I worry Little T will be jealous, but i worry he will be lonely.
Its a complete head fcuk.
My main problem is lack of information. I don’t know if i should start meds and then have a break and then IVF, or whether its easier to try again sooner rather than later, then start meds after a potential pregnancy.
I don’t want to waste anyone’s time, the NHS or my consultant (who is sourcing my medication). The problem is, I’m not seeing my consultant again until after we have been to Cyprus, which would be a prime opportunity to do FET (frozen embryo transfer)
Doesn’t help that my body is being weird, namely longer periods and random aches in the uterus area. I think its all in my head to be honest but its just messing with me.
Little T is developing so quickly at the moment. He’s now starting to hold the furniture and cruise about. He doesnt stand independently yet but we are not far off.
He also said his first word ‘Cat’. Every time he sees one, regardless of whether its ours, someone else’s or a picture, he says it.
He can also say ‘Daddy’ now too, although he says ‘Cat’ more. He says it all dam day to be honest. He shouted it so much at lunch time the other day, the cat actually came downstairs!!!
He is teething too, molars apparently, and its hard work. He isn’t sleeping before 10pm, and for 2 nights we’ve had to drive to get him down. I was out til 1.30am one night.
That has coincided with me suffering major fatigue. I wake up exhausted and am exhausted all day. Its an MS symptom so hopefully it won’t last, in fact i have felt better today, but during the spell, my patience wore thin and i found Little T’s whining very hard to cope with. Pretty sure i said ‘f**k me, what now’ under my breath about a hundred times over the last few days!
I felt like a terrible parent, ill be honest. I usually find him so easy to cope with, but i wasnt managing. The late nights and early starts and the fatigue, were just too much.
Im glad to say today was easier though.
Little T looking very tired!!!
Having said all that, I’m almost 100% certain i want another baby. Not now, but in a couple of years, I’m not sure its doable as I’ve no idea what the side effects of the MS drugs will be. I’m loathe to read up on it as, to be honest, i don’t wanna know. I’ll deal with it when it happens. At least i can tell my MS doctor in September that another baby is on the cards, unless the side effects make that impossible/unfair to another baby and Little T.
I had my repeat MRI, this time with dye, not so long ago. I had a strange experience during it. It felt like i was rocking back and forth, so much so, i had to check with the technician that i wasn’t, after the scan. My fingers also went numb/tingly, but that happens quite a lot at the moment, so I’m probably experiencing an episode. Pins and needles i can deal with, so long as i don’t start slurring again!
Ive a GP appointment next week as i need to take vitamin D to up my levels, so that’ll be 4 medications a month im taking. Thank you NHS for doing pre paid prescription certificates, they will save me a fortune!!
Im counting the weeks to our Cyprus holiday (8.5 weeks). Im so excited to show off Little T, I’ve had a romper made especially for the visit to our clinic…
I’m looking forward to sun, relaxation (thanks to my Mum and brother coming) and walking around Kyrenia again. I love the place, and it’ll be nice to be able to enjoy the pool, and alcohol, for the entire holiday, as no IVF will be taking place!
Little T pulled up today!! Given he couldn’t weight bear last week, it was a bit of a shock. I’ve been putting him on his feet but he didn’t seem interested, until today when he casually crawled over to a soft play shape and did this…