On the road to recovery

Wowsers! It’s been a rough time of late, but I am glad to say that I am now doing a lot better. After a barrage of medical tests and being poked, prodded and zapped (yes, with electrical currents), the doctors finally settled on my diagnosis of Polymyositis  (as discussed in my previous post) and started to give me steroids. Ironically they are exactly the same steroids as I had in the first trimester of my pregnancy with baby N. That is Prednisolone, the brand name in my case being Medrol.  BUT… the big difference is they gave me 4mg daily when trying to grow baby N and now I am on 48mg daily, taken in 3 doses after each meal. Eeek!

Anyone who has had the misfortune of taking these meds knows that they seriously mess up your sleep and it is quite a lot worse on a higher dose.  Actually though I am dealing with that ok at the moment, maybe even enjoying all my bonus energy, but what is most annoying is that the meds also trigger heavy night sweats.  And when I say night sweats I mean my entire body soaked in sweat, including my hair and my pillow. It is 100% gross and necessitates multiple changes of pj during the night (I now keep a stack of light t-shirts next to the bed so I can easily make the change) and a morning shower.  I am Captain Stinky otherwise!

It also makes me want to eat every carbohydrate in the universe pretty much 24/7.  It’s a bit like being pregnant but no baby inside. I confess it’s fun because yum, but it is a bit risky in terms of possible weight gain. Also because the steroids affect your blood sugar levels and there is a genuine risk of developing type 2 diabetes (no thanks).

And yet despite all of this the damned things are working and I am doing better!  I am slowly getting my energy and some of my strength back but I suffered “muscle necrosis” so basically I need to grow my muscles back properly to regain my full strength.  This will most likely happen, but it will take some time – weeks or months.

I went again to see the specialist doctor today – a rheumatologist – and it was quite overwhelming. There was good news and some less positive news. On the positive front he is happy with my rapid improvement and this means he will be reducing my steroids dose progressively from next week. In addition, he is adding a new drug which also targets the immune system to reduce inflammation, but it is a slower acting one and is more long term.  There is one special side-effect of that and it’s mild hair loss, but the aspect that is most saddening to me is that while on these medications it is not a good idea to get pregnant.

Of course I also can’t or shouldn’t be trying to get pregnant when feeling so poorly anyway, but the doctor indicated I could be on these medications for a year or more so that effectively puts me into being 41 or 42 at the earliest before we can even consider baby number 2. Even though I didn’t enjoy being pregnant or the newborn days, I still have a feeling of responsibility that he should have a sibling and the clock is ticking.  Thank goodness there are 15 embryos in the freezer that were conceived with my lovely 38 year old eggs!

Despite this though, I am refusing to let this bring me down strongly as the very most important thing right now is getting better so I can be the best mum ever to baby N and enjoy all his achievements. Having lost both of my parents now I achingly feel even more committed to this.

And what about baby N?  Well I think I’ve got to stop calling him a baby now!  He’s 18 months old and more accurately described as a joyous hurricane.  Toddlers are incredible!  What the world needs to do to solve the energy crisis is to channel the energy of toddlers into electricity.  Oh my goodness can this boy just go and go and go and go!  I often wonder where it comes from and I’ve decided it’s naps and bananas.

Every day he wakes up full of happiness and thirst for life!  This morning I couldn’t get him to get out of his bed because he kept doing rolly-pollys in it!  Other favourite activities include:

  • running around in circles until he falls over laughing with dizziness (warning: high risk of hitting his head so it’s both funny and terrifying to watch),
  • switching any kind of button/switch on and off repeatedly x100,
  • opening cupboards and drawers, taking out whatever is inside them and possibly putting them back in the right place thereafter
  • unscrewing lids off bottles, preferably of water or juice and then tipping it all over himself in an attempt to drink it
  • taking the dirty nappy/diaper and placing it in its special bin (which is located in a kind of laundry room away from his bedroom as poo stinks!)
  • taking dirty laundry from the basket piece-by-piece and delivering it to the washing machine, pretending to add detergent and pushing buttons on the washing machine to make it go (thank goodness for the child lock)
  • gently touching things that are hot like the heaters or a coffee mug and exclaiming “It’s hot!”
  • sitting on daddy’s lap in the driver’s seat of the car and “steering” as well as pushing every button that exists in the car
  • chasing the cat and trying to grab his tail (my cats are both fast and patient thankfully)
  • reading the book “Where is the green sheep?” and being super-excited to find the green sheep on the last page
  • climbing on everything and anything, constantly
  • swings and slides at the park – he can now independently climb the slide and sit himself down with his feet facing forward and then slide himself down
  • eating – he loves food!

I feel like I say this at every stage of development but I absolutely love this age.  He is so funny and curious and intense.  I mean, it’s completely exhausting (even before you consider my illness) but I wouldn’t change it for the world. Toddlers teach you so much about yourself, patience and endurance mainly, but to look through their eyes at the world is a beautiful thing.

I can’t thank toddler N enough for being my rainbow through all of my clouds of late.  I really think I would have been even worse mentally if it wasn’t for him.  I mean, I could have done without the chaos of a toddler while trying to recover but knowing that there is more to life than just me and my introspection is actually very cathartic. It also helps me to see there is a way forward, even though it is shadowed heavily by the loss of my Mum.

So now I know what I have to do for my recovery I can focus on getting physically strong again – staring with getting back into yoga and maybe some acupuncture – and also I think I may look into some counselling. Not just for me, but so I can be a positive influence for toddler N as he grows into a beautiful boy.

 

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10 thoughts on “On the road to recovery

  1. I’m glad things are going better for you! And I hope things get even better soon. I also love the toddler age, they are so inquisitive and find everything so much fun. I took my little girl swimming for the first time in a while the other day, and she literally screamed with happiness for the whole half hour! Xxx

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  2. Get well soon, mama! I hope you won’t end up having to be on those steroids as long as the doc has said, so you can get to work thawing those babies. It sounds awful. I was on Medrol a few times, and … yowzer!

    Also: I agree with the first 4 and the last 3 of Baby N’s “List of Fun Things.” Like, as in I currently as an adult would enjoy doing them!

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    1. Oh thank you lovely! I am trying! I have a love-hate relationship with Medrol. The sweating and bad sleeping definitely sucks but I am just so damned efficient and bouncy on it! It is kind of magical when you think about it. Science is mad! The new drug is methotrexate and I’m not sure that’s so much fun. I don’t have thick hair so if I lose it I’m going to have to go all Beyoncé with wigs. Hahahahaha!
      I had to go check the fun list to remember which ones you liked. You’re funny! But yes slides are life! Also bouncy castles!
      Hope you’re doing well? Any news about the new surgery? 😘

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      1. Oh great! I really hope it goes well for you. Sending all the positive vibes and love I have. I’m not a religious one -though I appreciate you are – so if I did go in for praying I’d be giving you all my prayers. xx

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  3. OK I should have read your update before our Instagram chat! Dumb question: will your frozen embryos make it easier to get pregnant or will you need to go through the ringer?

    I love 18 months too. I’m literally just laughing all day. So cute and funny (and exhausting). Honestly, that list of baby N’s favourite things are literally exactly the same as Augie- minus the cats because we don’t have any, but he does have duplo cat he plays with instead. And patience and endurance is a great description of what toddlers teach (or force on) you.

    What a great idea to look into counselling. You have been through so much and it definitely can’t be underestimated. I’m so glad to hear such positivity behind your post today, I’d be feeling sorry for myself if I was in your situation, you’re doing an amazing job. Baby N is very lucky to have you as his mum.

    xxoo

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    1. Haha! It’s cool!
      So technically yes it’s better to be implanting 38 year old eggs fertilised into embryos. The older you get the lower your egg quality can be. Many older women going through IVF have to get donor eggs as their own ones aren’t high quality. Whether there is any impact of age on the success of an embryo transfer I’m not sure but maybe it’s not that high.
      Thanks for the love. It really helps. xx

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