Hello! So it’s been a while and I do apologise for that. Wrote too many ‘down in the dumps’ posts and I try to keep my blog as upbeat and positive as possible but also try to remain honest at the same time. I love all the feedback on my blogs as it gives me a clearer direction as what you guys want to read, know about and so forth. It’s nearly 1am so this blog might beshort and I’ll post a better one tomorrow but I feel bad for neglecting those who read this and I think my last post was….Mayyyy?…. o.O
Anyway, a lot has been going on this year.. it’s hard to keep track now! So far I’m under: surgeon, gastroenterologist, dietician, gynaecologist, pain consultant, stoma care team and colorectal team, on four different meds (two introduced in the last month) and it’s all very very confusing at the best of times! It’s sadly gotten to that point now where people don’t know what to do and are discharging me, don’t know what to do and are trying out all the options or don’t know what to do and have no options left. Hmmmm. In about 8 hours time I’ll be sitting in a room with my surgeon to basically come to the finality of whether or not a reversal is even an option anymore and send off the referral to St Marks down in London before my stoma may or may not become a permanent solution. Now, I’m not saying a stoma for life is a terrible, terrible thing.. it’s not. Would you rather be dead or adapt? My reason for this being my possible outcome is because I was never told it was going to be permanent, I have spent nearly three years being told it is temporary and therefore your mind is in the zone of “it isn’t forever, so we don’t need to fully come to terms with it and adapt”. Yes brains are weird, complex, mumbo jumbo blobs of fudge. Well.. if your brain is made of fudge I’d be a bit worried but metaphorically speaking.. big blobs of fudge!
This week I have spent two days bed bound, the first day was a “warning”, the second I was daft and pushed myself too far and the third and fourth I’ve given in the twats they call nerves and stayed in bed, but eating and watching dvds so it has it’s perks ;-) This is caused by what is called Visceral Neuropathic Pain. Which basically means the nerves in my pelvic floor and surrounding organs have been damaged in one way or another and this can very rarely be cured and only dimmed slightly by drugs (average percentage is a decrease of pain by 30-50%). Unfortunately the drugs I am on and have tried do not seem to be preventing these random ‘attacks’ of pain that make me very immobile for several days. I am currently on 225mg of Pregabalin which is an anticonvulsant drug used often for neuropathic pain, as are strong antidepressants such as Amitriptyline but there is no specific drug designed for neuropathic pain, instead drugs that give off a side effect of easing neuropathic pain is used in an attempt to decrease the pain. So far nothing is working and this is the hardest out of all the problems I have going on at present. Once the Pregabalin kicks in, it becomes extremely difficult to focus visually and balance, and my consultant is aiming for me to be on 600mg split into 300mg morning and night…. balls.
Strangely enough not everyone responds the same way I do to these drugs. A good friend of mine is currently on Gabapentin and has no side effects whatsoever but when I took it I felt violently sick and had to come off it after a week. Another drug I tried was Duloxetine and for an entire 24hours I couldn’t focus properly and felt very nauseous and never repeated it. No matter what you hear from other patients, if you have prescribed a drug you should always be willing to give it a go and the worst that can happen is that you need to come off them, at least you can say you tried. I’ll be perfectly honest, drugs suck and I swear illegal drugs would not screw you over as hard as some these that are prescribed!
Today is going to be a difficult day, and it the day I have tried to avoid for over a year and a half now but what will be will be and whatever I’m told later today is going to be something I’ll grab by the horns and fight till I know the battle has been won. By winning it doesn’t mean the conclusion I may of liked but regardless I’m going to do it. As Saoirse Ronan says in ‘Hanna‘: “Adapt or die”, well Eric Banner technically says it but if you’ve seen the film you’ll know what I mean and if you haven’t, YouTube! I’m growing to grow the biggest set of bollocks that I have and walk into the room, take a deep breath, read through my notes, be diplomatic, formal and patient and then walk out of that room and accept whatever feelings suddenly rush through my body when I’m out of the room. Never forget, at the end of the day you are still human, and you should never get caught up in being an emotionless robot because you feel you need to keep missioning on all the time. It’s going to mission on I feel but it’s also good to know when to let everything out and embrace the moment there and then. As my Aunty always told me, “you can feel shit and sad today, and then tomorrow you pick yourself back up again and get on with life” and it’s true, I say it to my friends and I say it to myself because that day of crying, screaming, shouting etc is just what you need and then missioning on the next day is what helps you carry on. Life is wasted on drama, over-thinking, worry, stress, fears, grudges and all of that negative, bitter nonsense. It doesn’t matter what you’re going through, you need to tell yourself you will never let it get the better of you and live your life how YOU intend to! Yea I’ve spent this week stuck in bed in my pjs, when I’d rather go out and have fun but this time next week I’ll be doing exactly what I want to do and my stupid body can’t tell me what to do. Tomorrow will not stop me being able to live the life I want and stoma or no stoma, I am me and I’m goddamn proud of that!
So do me a favour, look in the mirror and be proud of who you see.
Goodnight :) x