Tag: living with MS

Day 3 and 4

Day 3 and 4

Days 3 and 4 were for the most part, boring.

I had a sleeping pill day 3 due to the screamer and the steroids. Still only managed minimal sleep though.

Got a bit of a surprise yesterday, i was moved to another ward. I can still hear the screamer, but with the help of another sleeping pill, i managed 8 hours sleep!!!

I also developed hives over night. My fellow MSer in my new ward, tells me it means its working

Im now struggling with my eyesight, they warned me some of the MS symptoms could come back

Its now Sunday. My eyesight came back within 2 hrs. I was exhausted but excited to get home. I left at 8pm

I slept all day Saturday. I was awake about 3 hours.

Today, the cat was sick on my bed so after an hour i managed to change the bed, put a wash on and have a shower, I’m now back on the (clean) bed awaiting Mr Me and Little T to come home from shopping.

I’m exhausted. This may be life for the next 2 weeks. Luckily Mr Me has time off over Christmas to help me out, i am on my own tomorrow but I’ve got backup if i need it

Love, Little Miss PMA xxx

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Day 1 of Lemtrada

Today i arrived at the hospital half an hour early. I didnt sleep a wink last night.

I was shown my bed, I’m in a ward of 4. I was last woman in. We have a screamer, a lovely lady who weeps a bit and the lady next to me is quite poorly and struggles to speak.

I’m the only 1 with MS. I’ve had bloods taken, swabs taken and pee’d in a cup.

Nothing of note happened until about 2pm.

I’ve had IV steroids (left a vile taste in my mouth), and I’m finally on the Lemtrada.

Its the stuff in that bright red bag. The stuff that can’t see light. The stuff that looks like it could kill ya. Yeah. Even the nurse described it as a toxic medication

I’m waiting on paracetamol and an antihistamine as ill spike a temperature and ill get an itchy rash.

My drip needs a new battery pack and i think my chest is feeling a bit tight.

I’ve been on the bloody thing less than 30mins and I’ve got a tight bloody chest.

What fun.

I’ve watched a lot of TV and I’m now watching The Meg.

Love, Little Miss PMA xxx

A date with L

A date with L

My appointment with the MS consultant was actually today, not tomorrow, thank god i checked my diary…

I’m going to be treated with the Lemtrada, the drug that sounds horrific.

It could stabilise me for up to 12 years though.

I will be able to try getting pregnant again in a couple of years.

I’ll likely start treatment in November/December as i have a trip to Seville booked early November.

The drug will essentially wipe out my immune system, ill need lots of post treatment meds, antibiotics and anti virals for example, for a fair while after the 5 day stint in hospital.

Ill be very fatigued during and for a few weeks after the treatment as it’ll break down my T and B cells, and all the chemicals from inside the cells will enter my blood stream

I will be able to have my 4 weekly blood tests locally which is a small bonus.

I can still have an alcoholic drink, but not too much before blood tests as it’ll mess with my enzyme levels.

Ill probably need another MRI before commencing treatment and have to keep my Dr up to date with any relapses.

So, there it is. Next 4 years of my life planned out, probably a rubbish Christmas, at risk of picking up everything due to a suppressed immune system. Excellent.

Been advised to avoid forums, won’t be an issue as i just want to deal with what comes, as it comes.

Going to be difficult, but when is life easy?

At least i can enjoy Cyprus and Seville and theres a plan in place, and i do like a plan!!!

Oh, and i need to stop vaping before the treatment!! #myonlyvice

Love, Little Miss PMA xxx

Reconciliation

Reconciliation

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.

Why does this have to be so hard?!!!!

I’m so back and forth

Love, Little Miss PMA xxx

Cruising

Cruising

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…

Made by https://www.facebook.com/babsandmoo/

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!

Love, Little Miss PMA xxx