Monday 27 October 2014

Day 266, Counting Sheep and Tramadol...

Endo 365

This blog is a little different- it's not about what is working well for me... Rather what I need to do. A pledge to myself if you like. So I am going to get off my 'Do's and Don't's' pedestal and lay out all my imperfections for you. 

I have four rules for myself to lessen Endo's effects which (being naturally predisposed to rebelling) I don't follow as well strictly as I would want my best friend or sister to. These 'rules' are: 

1) Look after my emotional health, keep me strong and happy- why do you think I go on so many holidays? I draw a lot of strength from them. I am currently writing this blog in Venice looking out onto the grand canal so I am doing well on this front currently. I also make time for myself at uni for coffee alone and doing some exploring in a new place. I don't know why but it's gooood for the soul, especially if it involves water or bargains. And baths. Baths are important for me. 

2) FODMAPS Diet- this contrary to my worries about university lifestyle has been a real success... Because the only food I can eat is that which I buy... Which is only food that I can eat. Don't you love positive cycles? First time for everything! 

3) Exercise. Between the gym and rugby training (yeah you read right) I'm exercising 4/5 times a week which is perfecto for me. And making a difference to the pain. However the irony is that sometimes we are in too much pain or too tired to do this, and do not feel bad for the days you can only exersise the horizontal position; however when I do not want to go or feel like going, is when I benefit most from the enforphins afterwards. 

4) Sleep. Ah sleep. You illusive tease. You bitter sweet essential. I am being very naughty at the moment and burning the candle at both ends and I may as well be eating a tub of gluten infused dairy having not left my sofa for days thinking about how awful my life is. This is what I need to sort out. And ironically, with some treatments such as GNrH, insomnia becomes a side effect. This is why it is good to be as diciplined and in a routine...

Due to my lecture/ seminar times/ working in an office on the days off I don't have my lectures/ seminars (why can't I just be normal for once?) I get no Chance to catch up on sleep, contrary to the images supposed of students who just lie in bed all day watching netflicks and eating pot noodles drinking lambrini as it is officially one-of-your-five-a-day-because-it's-grape-juice-k? 

Right now  I can hear my mother saying 'why don't you just go to bed earlier?'
Well mother, because I'm a student now, and have shit to do. For example, socialise. Or catch up on Downton. Or spend time with my flat. Or go dance. Or work. Or socialise. And then because I do this, I get fatigued. 

Now I realise this may sound like a moany blog which is everything my blog is not meant to be. So bare with me oh doubting Thomooose's. 

The reason sleep helps my pain (and most peoples) is because body then has a stronger constitution to battle the pain. Think about it; If you're tired and run down you're always more venrable  to colds (I've had mine 7 weeks and counting now kinda proving my point).  It's the same with pain. Being tired doesn't MAKE pain, however my body feels it more and can't shake it off the same. 

And then because of the pain I can't sleep. Or I take big pills which take away the pain but give me a half hearted nights sleep with weeeeeiiirddd dreams. 

But this really is pitiless ladies and gentlemen because it is within my power to change this. And I will, because I know it helps, and it is a god send of  an easy solution. But  then there is that little voice that does  not want my endo to stop me from enjoying university nights out, or spending time with my friends and gets the great idea that not sleeping is two fingers up at endo. But in this fram of mind, I am too stupid and stubourn to remember that two fingers up at my endo is indeed, two fingers up at myself. Useless. Cutting off your nose to spite your face my girl. 

So hear is the middle ground, Ima make myself a deal: 

Listen to your body and give yourself the best chance. Know if you're having a late night and busy day to factor in a lazy night, be it in bed catching up with MIC or having the gals over for a pot of earl grey and chocolate. 

It is all apart of the thing I and most women with endo are not very good at doing: beingg kind to yourself and giving yourself permition to slow down; knowing you limits. 

It is infuriating and hard to swallow that we have limits influenced by our endo, however ultimately everyone has limits, and if we look after ourselves properly, then the limits stretch, but first we must adhere to them. 

So this is me essentially telling you not what you can do, but what I should do and need to do, and hopefully get you thinking about what enhanses your quality of life too. 

Be proactive, find out what works, then stick to it with as much normality as possible. 

On a brighter note, Venice is very special and refreshingly different. I fly home tomorrow and the sight of a car could well break my heart a little. I love being on  the water, however ended up having to talk myself out of a big ass fine today on the Vapperetto. I had lost my ticket and unfortunatley our boat was unfortunate enough to have a spot check  inspection of tickets... I  panicked  and started speaking  unintelligible made up gobbeldygoop with a few sporadic english words to add to the confusion, giving my biggest puppy dog eyes and playing as innocent and dumb as someone as evil as I can do.  To top it off whilst he was calling his manager, I kicked myself in the shins to make my eyes water and then poof, 90 euro fine diminishes into a 7 euro ticket and it has all  been a good ruse. Why thank you Karma, I now forgive whoever backed into my car and drove off. 

There is an interactive architect/ modern art exhibition in the Giardini; at  Hungry's exhibition you wrote on pegs and left them, like a temporary legacy. This is mine;  



Sweet Dreams, 

AL XXXX

Monday 20 October 2014

Day 259, Crying in Public Toilets With Happiness...

Endo 365 

I have been in many a weird and wonderful situation, this one, however, this one is up there. 

The point to this blog is a bloody on however cringily poignant for the everyday person.  

As you may know, I had an operation in February excising the endometrium in my naughty tummy. At the same time I had the Marina Coil implanted which has been okay, but I spotted everyday for six months and had a pain attack ever 5 days accompanied with copious amounts of tramadol (weeeeirddd dreams), morphine and bed rest. All in all a fairly unproductive inconvenience for me. So I conceded and took joint treatment (as advised) and am taking the mini pill in-conjunction. 

Now this has worked fairly well; no brake through bleeds and far less frequent pain attacks. Amazing. Perfectly timed for once as I was starting university. 

About three weeks in my body was screaming at me that I needed a break from all the WhoreMoans and so I stopped taking the pill for one week and something magical happend. 

My first proper period in five years. 

It was oddly liberating, like re-starting puberty and I felt the initial smugness I remember ironically, so long ago. 

And what was particularly amazing for me (minus the fatigue and Whoreiffic WhoreMoanal swings) was that I did not end up in hospital... and on top of that... I had next to no pain. 

Me, next to NO pain. 

I very very very rarely surprise myself health-wise. You know what it is like... We know instinctively how our body is going to respond so certain things that the doctors suggest. We know what will work and what will not. We know within minutes whether the pain will pass or whether its going to be a biggie. 

We Alice-the-expert-know-it-all did not anticipate this. 

And do you know what, for the first time ever; it felt so bloody good being wrong. Liberating even. 

Tom and mum take not of those last two sentences as they will never happen again. 

And even though I have been in daily agony since, do you know what it taught me? It is hard to type this with out it bring cringing because this word is so over used, I have never felt it in such a pure sense until I was indeed, crying with happiness in my university toilets; Hope. Thats right, Capitalised Hope. 

This beautiful realisation that my body can in fact, suprise me in a good way is what reduced me to happy tears. I can say I cannot remember whether it has ever done that, but I hope this is not the last time. 

Thankfully my endo has been caught early enough that I should be able to have children, however I have come to the terms with the fact that my side effect are so extreme I felt I absolutely knew I would not be able to naturally cycle and conceive the 'normal way'. I had accepted I would have to conceive via IVF/ have a horrible time of it irregardless. 

However now for the first time, who knows, maybe I'll be proved wrong, again. I Hope so. 

The Hope I have been given is lovely, it is not a lot but I am going to savour it and so should you, wherever you find it. 

And that, Ladies and Gentlemen, is how I ended up awkwardly crying in public toilets with happiness. 

Last weekend I attended the Endometriosis UK Information day which was a fantastic day and I heard some inspirational stories and some which brought tears to my eyes. 

But it also reminded me that: Endo is an asshole. It can be a life wrecker and it has the potential to break you. Do not let it. Search for the good and although it is so very unfair, and we have days where we cry and are angry, this is our one life cannot be anything but with endometriosis so make the most of it and search for the positives and hope because life is much brighter and better with them than without. 

It doesn't matter who you are and how you deal with your endo, if you are living with it you're an amazing woman of strength, keep going and be an example to yourself. 

Over and out, 

The Cheese Master XXXXXX

p.s email me if you need alice.smith@marriottfarm.co.uk