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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My Mum died, and other news

I’ve been wondering how to title this post long before I even tried to write it, so I’ve gone with the direct option because frankly this is the sentence that sits square at the front of my brain right now: My Mum died.

My Mum died and my heart is broken.

She died at around 2.15am on Saturday 8th December with both my sister and I by her side. I had arrived late Wednesday night and came directly from the airport to the hospital as during my flight she had deteriorated significantly to the point where she was unconscious when I arrived.  I think she knew I was there though as her eyes flickered a few times when I spoke to her. I told her many times that I was there and that everything was ok now.  In the morning I got on her bed and gave her a cuddle too and she seemed to rest her forehead on mine as though she knew I was there.  By about lunchtime on Thursday she was completely unconscious and we didn’t see much response from her thereafter.

Both my sister and I stayed at the hospital in her room for the entire time.  The only time we left her room was when the nurses came to tend to her and freshen her up. By Friday we were both losing our minds but also we knew that it was more kind for her to go, than to stay in the state she was and we started willing her and giving her the “permission” to go.  She was such a feisty, strong woman though that she really, really hung on. Her heart was so strong that even the nurses couldn’t believe she was still alive on Friday.

When she finally left us early Saturday morning it was a blessed relief that she was finally at peace but it was truly awful.  Towards the end she looked so ghastly that I was afraid to look at her.  I realise that is terrible but it is quite traumatic to watch someone die in increments. When she died I was stroking her hair and holding her and my sister was on the other side holding her hand.  I guess as far as deaths go it’s the best you can hope for in such a circumstance.  She was surrounded by love.

I guess there is an argument that we all knew that she was gravely ill, but it doesn’t actually make it any easier to deal with. I’ve lost both of my parents now in vastly different circumstances – one as quite a shock and one not-so-much – and the trauma is no less in the latter scenario.

The days that follow are now some kind of blur.  Maybe I should have written something at the time but I didn’t feel able to. Almost immediately after my Mum passed away I developed laryngitis so here I was trying to organise a funeral with no voice. Apparently it is a legitimate reaction to grief to lose your voice.

People were very kind to me and my sister but it was a strange time.  I was living in my Mum’s house for a few days alone but without her (my son stayed back home with his dad and grandparents which was weird in itself). The funeral was the Wednesday following her passing, during which I recalled some happy and funny memories as part of the service. My voice had partially returned then but was not 100%. I remember feeling afterwards that a 45 minute service, lovely and heartfelt as it was, it just not enough to pay tribute to her life.  It almost seemed rude to have such a short amount of time dedicated to such a full life.  I still can’t get over this.

Also, I found the funeral to be a massive exercise in managing other people’s grief. While many people were certainly keen to support my sister and I, it really felt like we were doing the heavy lifting with looking after other people. My husband didn’t come over to Australia as we jointly agreed that it would be better to have him stay with baby N so that there was some consistency there. I had good friends supporting me so, while I missed him, I was ok.

Then at the funeral, I had two completely unexpected guests turn up – one was a girl I went to school with and practically have had nothing to do with since, and the second was an ex-boyfriend of mine from when I was 19. We have remained excellent friends over the years as we have some bond that is hard to put in words.  We definitely have a connection as he lost his mum to cancer at a young age as I did my dad, but we also have a special something between us beyond that.  It’s all above board, my husband knows about it and I think we both recognise we are not a good romantic match, but I do love him. Anyway, so he’s this tall, gorgeous, blonde surfer and he just strolls into the funeral and you know what?  I lost it. I had kept it together so nicely until then but I was so very touched that he came that I just hung onto him for dear life for about 5 minutes. It was kind of at the point where someone almost had to tell me to let the poor guy go.

Afterwards about 80 people came back to my Mum’s house for the wake. It was so bizarre.  Everyone is so convivial and yet you can’t hold down a conversation with anyone for longer than 1 minute because someone else comes to ask you something else. Also, because I think people realised we would (eventually) be selling Mum’s major items they started asking me if they could buy things.  At her wake, they started asking to buy things.  This still blows my mind.  So here I am in the middle of all the post-funeral feelings and someone is asking me how much for her sofa.  Seriously, WTF people?!

And then you know what happened the day after her funeral? I turned 40. Yep, it was my 40th birthday, which I was meant to be spending on a romantic trip in Milan with my husband. But instead I spent it at my Mum’s house with my sister and friends crying and drinking champagne.  Actually, somehow it turned out to be a great birthday full of love. I missed my Mum ENORMOUSLY but given the situation we did try and smile and celebrate in a low-key way.

The following Sunday I said goodbye to Mum’s house, and goodbye to the town I grew up in from the age of 3 and full of all the pain and emotion headed back to my boys.  And for the first time in my entire life, I got upgraded to business class on the plane.  I cried.

My return back was a blur.  Baby N was a bit strange with me for the first couple of days – he wouldn’t sleep the first night which was great with jet lag! But he soon got back into the swing of it and seems no worse off thankfully.  He’s at a beautiful age now – 18 months – and I adore him.

I don’t remember much what happened next.  There was Christmas and New Year, which was a blur. I didn’t feel much up for anything so we kept a pretty low profile, doing simple things as a threesome. I was exhausted too and couldn’t really seem to catch up with myself.

About two weeks ago I started to feel a tiredness in my muscles that was similar to how you feel after a really, good, tough workout.  Except I’d not worked out. This progressively got worse over several days until I found one night I couldn’t get out of bed as my muscles were so weak and I was in so much pain.  After I vomited a bit with the pain it completely freaked my husband out and so he sent me for some blood tests.  Long story short it seems I had a viral infection of sorts.  Nothing very exciting or unusual about that in winter… except that this viral infection seems to have triggered something far worse which is called Polymyositis. This is inflammation and weakness in your muscles and if not treated it can be very dangerous.

It has rendered me quite disabled in that I have no strength in my body to do basic things such as holding my hairdryer above my head to dry my hair, or pouring the water jug, or lifting /caring for baby N. I can’t walk very well or very fast and I’m in a lot of pain. At the moment they are trying to confirm the diagnosis – I’ve had a bunch of blood tests and an MRI so far, but they also need to do some kind of neurological test and a muscle biopsy so it’s not over yet. So far 2019 has sucked so very much!

Many people seem to think my immune system was compromised by my grief.  It all sounds believable but I’m just so unhappy right now.  Meanwhile my sister-in-law has just announced that she’s pregnant with her second, a girl.  You may recall that my husband and her husband are brothers and our relationships are not at all strong.  Throughout this she and her husband have been completely unsupportive and downright rude so I’m struggling with that too.  My parents-in-law, however, have been incredible and baby N has half-lived at their house as I’ve been incapable of caring for him alone.

Right now I’m trying to focus on getting better.  My treatment is high dose steroids – the same ones I took for the IVF but at much higher doses. On low dose they made my face fat and me kind of psycho so I am freaking out somewhat about what kind of nightmare I will become on the strong dose.  Either way I have to get better so there is no option.

Please someone tell me I’ve had enough drama and I can go back to a quiet, normal, boring life again soon?!

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These are some special tulips my Mum grew and tried to live long enough to enjoy (which she did)