Hi guys I hope everyone’s doing well. I havent the in the blog-post in quite while, but I really wanted to share some things with you.. some super great and some pretty crappy..I’m writing this from Portugal I’m on holiday with my husband and children as well as my parents and my dad’s mum, my nannan, so the kids great nannan.
This holiday is only been possible thanks to my parents generosity, to say we are grateful is the biggest understatement I don’t even know how to put that into words but we are having the best time.
Before we left…
If you have medical needs, like me there is quite a lot to be organised before you go away, for example your medication. You need to make sure you have enough of everything and a medical letter to confirm you are prescribed them. This is especially important if you have stronger medications as some in countries it may be a banned substance. (I think Turkey has a Codeine banned, for example).
I’m very lucky that I have a awesome medical team at my doctors surgery, and a wonderful GP who helped me prepare for my holiday.
So we had 7 day holiday booked so I needed 7 days worth of all my meds, but my doctor said it was sensible/ advisable to take an additional 7 days just in case of delays or other problems. (Similar advice can be found on the Pinnt website too.) That in itself could be quite a lot to organize for most, but if you have liquid medications then the physical size and weight of them makes it difficult. G was great and helped me work out how much we needed of each medication for example:
Senna I take that twice a day 20ml each time.
So…. 20ml x 7 = 140ml PLUS 140ml = 280ml
We did this for all of my medications and gave the numbers to my doctor who wrote a fantastic letter explaining everything, including dosges etc and very importantly that I would need to keep all of the medications on my person at all times. This is for a few reasons, firstly if I have it, it cannot end up lost luggage, or stolen. Secondly incase I need to take any meds especially if there is a delay, you may have seen the on the news the guy who had Parkinson’s and was delayed without medication LINK here .
Two of my medications include control drugs and one of them is sort of in that category (pregabalin), but it’s nothing we can’t handle.
Then we have my nutritional supplies this is for me ensure compact, flexitainers (empty bottles for pump), the tubing known as giving sets) and syringes. Again we did the maths and my GP added this to my letter. This didn’t need to be kept with me but would most definitely use up my baggage allowance as it weighed 17 kg. So I spoke to TUI who added additional baggage for me. I will do a video on how to arrange this and special assistance at airports etc.
We arrived in Portugal and wow it is beautiful and the villa was amazing once we found it..lol as we went the scenic route!
Mom and Dad have been great, from making sure there was a downstairs bedroom to making sure beaches are accessible to somebody on crutches, plus finding shade from the sun as it has been an excessive 35° here most days so it’s been bloody hot. To help me cope with this I’ve added electrolytes to my fluids each night (dioralite) when I have my feeding pump running because I’ve been trying to play catch-up. I don’t reply as it’s been bloody hard.
I have pushed myself each day but have desperately tried not to let it impact on the next day – and to be honest I have done pretty well. Food wise I have tried to take part in meal times but have found it pretty hard I’ve ordered children meals and picked at that, so that I looked and felt part of the family activities. I’ve also managed to hide my chokes and coughing fits……. I have learnt over time to suppress the choke\panic reflex and I just clear my throat if I can or calmly ask G to help … it’s something I’m actually pretty proud of. The main reason I’ve done this is that panicking makes the choke worse but also being a mummy I try to not scare the kiddo’s .
I have slept till 9 or 10 am most days and with having the pool here we haven’t had to go out to entertain the children (they’re no allowed to go in the pool without an adult poolside)
On Thursday we had our big trip planned so Wednesday I had extra fluids and feeds overnight and slept in in preparation for the big trip.
On Thursday we went on a boat trip to see the Caves and Dolphins (the dolphins were a bit shy). Getting to the marina was a 15 to 20 minute taxi ride and then there was a bit of a walk to the marina where we had lunch and drinks. I was pretty glad to have a sit down and drink as it was massively hot – we weren’t due to depart till 4 pm and had hoped it would be cooler by then …WRONG it was still at least 36 degrees…. but because our party had my nanny who is in the 80’s and children (and of course me) we chose a boat that had some shade.
This is who we went with: Ocean eye. They were brilliant and we DID see some dolphins .. actually Daisy and I saw them first which was awesome and then standing on the boat (folding on for dear life ) whist it sped over the ocean was such and exhilarating feeling – the wind through my hair – it was AWESOME.
We got off the boat and found a taxi as I WAS EXHAUSTED…. seriously knackered – my speech was shit and I was nodding off at a seconds notice, we arrived at the restaurant and I did my usual order – a children’s item, and wow it went tits up!!!!
Almost immediately I choked on the food, and spat it out, and had some drink. Desperately thing to hide it as a member of our party is *grossed* out by my peg and all things related. I then tried again and this time I couldn’t trigger a swallow so I was doing my chin tucks and NOTHING – I had to spit it out. But in my desperation to be normal I forced some food down and BANG I had food stuck in my throat- cue coughing fit – I did keep calm it enough to walk outside and have a further coughing fit followed by a visit to the toilets to vomit.
I had managed a grand sum of nothing. and was left feeling totally crap and embarrassed (yes I know they’re family and probably don’t care – but I DO… ). The NEED to look and feel normal is still as strong as it was 6 years ago – I don’t think it will ever leave.
We came home and the pain of the day hit me and it was a 9 out of 10 – so bad that I needed G to help me go to the bathroom and wash up before bed. Its not often that I need G to help me with EVERYTHING down to my underwear. I then needed putting to bed, and we made a makeshift fixed sleep position with a duvet from the cupboard and various pillows and cushions.
I had my max meds including the liquid one PLUS we used the lidnocane patch that we purchased over here in Portugal (I will post about this separately soon).
I woke several times because of the pain and took today very slowly – that said I would 100% do it again – I think sometime we need to take the hit … I know its coming but we don’t let it stop me …. some might say it’s daft to do it but you know my mantra: “fuck it”.
Anyway, this is my penultimate night here and I have had several vodka and cokes so it’s bedtime!
Sending love to all who’ve managed to read this to the end you are amazing and Iove you lots.. keep fighting whether its cancer, a long term illness or another battle … you are strong.
Feel free to message me anytime!