Today I ate my first meal in 6 days.
I managed to sit upright for more than 10 minutes without needing to lie down and even managed the short walk to the shop with my littlest boy to get him some sweets (I did need a lie down after that mind!).
Why such accolade for everyday activities taken for granted? – MEDICATION ‘to make me feel better’
I had been taking Levadopa & Entacapone as 2 separate tablets for about 3 months now but still struggle to go any more than 3 hours between doses which is not ideal. So ahead of a referral to a Neuro Specialist I agreed with my PD Nurse to try 1 more tablet to try and lengthen the time between doses – Levadopa + Entacapone as 1 tablet as there were more options regarding dosage levels that may help manage the ‘off’ times.
So I started taking Stalevo 14 days ago, from day 1 I started to feel unwell – sleepy sometimes drowsy falling asleep on the sofa (this is not me), nauseous, hot flushes, more aches and pains than normal, increased apathy, low, and just generally feeling unwell. After 7 days I thought about switching back to the 2 separate tablets as before but thought I should at least persevere for a further 7 days to give my body time to adjust.
Well that was the wrong choice! By day 10, last Friday, I started to go downhill rapidly, I THINK I contracted a bit of a virus too which added to the decline. I was having hot flushes and sweats, extremely weak, nauseous, no appetite, joint and muscle pain, headaches, constipated, thick heavy head, could barely think or move as I wasn’t getting much relief from my daily PD symptoms.
By Sunday I was so poorly I was almost delirious, just moving from sofa to bed and back again not able to find any relief from the discomfort and pain. So my partner called 111 who after consulting a clinician referred me to A&E. Well that was joyous, you certainly see some sights there and a waste of time – the words of the doc on duty……
…. ‘we don’t get many 37 year olds with PD I am going to have to just go and research your medication and come back to you’….
……eventually concluding they are not qualified to do anything with my meds so here is a suppository and a prescription for some anti-sickness tablets to hopefully give you some relief until you get to speak to your PD nurse – brilliant!
Still unsure as to if it was completely down to the meds or a severe viral infection I took it upon myself to reduce my dosage level down and drop a tablet a day until I could get hold of my old meds from the GP – it’s dangerous to just stop. Well I did begin to feel slightly better with some windows of light in between feeling rubbish.
I spoke to my PD nurse and GP as soon as I could get hold of them and today I switched back to my old meds and guess what – the cloud has lifted – see the opening line of this blog!
So what have I learnt from this?
I trust pharmaceuticals even less as in theory I was simply swapping 2 tablets for 1 combined tablet, so should have been fine, yet I had such a severe reaction – what are they putting in these meds? – you see after doing a little research and hearing of other people’s experiences a simple change in BRAND can have major impacts.
I really can’t function at any level of normal without them.
Trust your instincts and listen to your own body – even if the professionals tell you its fine it’s a simple switch or get frustrated at you for constantly challenging or rejecting – sorry PD nurse.
I have THE most amazing support network and am very humbled and feel very privileged to have such awesome family, friends and neighbors – THANK YOU.
It’s hard to lose weight! Hardly eaten a thing for 6 days and lost 6lb – jeez I will eat a biscuit and put that on!!
It has hit home though the importance of me investing in myself – I am rubbish at this, it always feels self-indulgent and makes me feel guilty – you see a simple cold for me can knock me off my feet and the time spent relatively immobile has left me feeling very stiff. My kids need to me to be the best version of me I can be, this beast is going to get hold of me one day but not this day, not now, as I am (almost) back and ready to step up this battle.
I am still delicate and not back to where I was but hey compared to just yesterday I am 50% there – I will take that.
“Take care of yourself Mama. Go for a jog, get your hair & nails done, read a book, have a drink, cry. Do what you have to do. Your children need you to be okay”