So as you all know I’ve been suffering with terrible constipation since going back on my MST medication, so, on Friday I went to the doctor because by now I looked two months pregnant and was constantly in pain.
So I tell the doctor what the problem is and instead of putting me on alternative medication he prescribes laxatives. So Friday night I’d had enough seeing as I had to miss taking my mum to the cinema to see the new Merry Popins film as I kept needing the loo. So I took the laxatives. From 7:30am till 6pm I’d been on the toilet 9 times.
I want to say thank you to my mum for her unrelenting patience as she put my on the loo each time, it’s not easy lifting a 20 year old woman. I’m sorry that the weekend was shite (pardon the pun) and I know we came close to blows but, I wanna say thank you. You put up with a lot from me and sacrifice a lot, (which included cancelling your hair appointment this weekend.) if it weren’t for you I would have been a mess. It was frustrating on both ends but, not as much for me as it was for you.
I know it seems there’s always something with me being ill but I promise I’m not doing it on purpose, it’s just shitty coincidence. I know being carer must be tough and I can’t imagine all the things you’ve missed because of me. But, if it wasn’t for your love I’d be fucked!
So thank you, amazing mum,
If one of your family members cares for you, you need to remember that they have their own needs and lives as well, it can’t be about you 24/7, you need to let them rant, take it on the chin, let them cool off and don’t get mad because at the end of the day, we could be shoved in homes in Russia or left at the mercy of the Care funding. So just let them know that you’re grateful and don’t take them for granted. It only takes one straw to break the camels back..
With all my book promo and arthritis diagnosis I forgot to show my mum and dad some appreciation and realise when they need a break.
So I plan on giving them a date night on Friday and see if I can get the care agency to fit in a bed call so my parents can enjoy themselves.
I hope you’ve had a good Christmas? I’ve just finished a good book called Speechless by Kate Darbishire about a girl called Harriet who has cerebral palsy starting secondary. I read it within two hours, it’s amazing that despite our different severities of Cerebral Palsy it was comforting to see that she went through the same struggles I had in school. My question to you dear reader is this; would you like to read about the highs and lows of my school days? I feel in regards to Disability and in particular teens going to mainstream education that things need to be changed, things that should have been changed and abolished in the 70’s and how at the same time how I was treated like a normal student. I feel like this is the right place to start. FYI to all old teachers and friends nicknames will be given to keep you anonymous!
Should I go for it? Even if I don’t publish it, I think I’ll do it, it’ll be cathartic!
Tips are my own and may not work for everyone – consult your doctor before making any major changes to diet or medications.
- Organise your medication for the week – I’m ashamed to say my mother does this for me. It’ll be easier especially during brain fog where you don’t have to think of what tablet to take.
- Say there’s a TV show you want to watch at 9pm but it’s too late for you? Well take an hour and half nap in the early afternoon because you’ll be refreshed but by the time 9pm rolls around you’ll be tired enough to sleep through the night later on.
- Don’t beat yourself up about flare days or having to cancel on friends – they should love you enough to understand, you already feel guilty and you don’t need added pressure on top.
- Make the most of good days even if it’s just a walk outside
- If you’re like me and whilst your body hurts but your mind is racing, let audiobooks/colouring become your best friend or treat yourself to s Netflix subscription.
- Natural sunlight is the best medication – typically the more vitamin D I have the more improved my ME is.
- Understand what’s a flare and what’s not – a diary is helpful thing to have especially when visiting the doctors.
- Flick the bird when someone says ‘Your illness isn’t real.’ You live it, they don’t.
- Keep hydrated
- Regular toilet visits help especially with all the meds.
- Anti depressants help – an invisible illness is hard to deal with
- Don’t get your hopes up about trials and new research.
- Connect with the chronic illness community on social media – you are not alone!