When I started wanting to write down bits of my life the plan was to share the nice bits and funny moments. I didn’t want to write a negative post, my life isn’t easy with multiple health issues and I wanted to document the moments that keep me going…seeing past sick me! How bloody naive was that?
I have my bad days, (weeks and months as well!) but that has always been part and parcel of growing up with a chronic illness like Crohns. However, I’ve never really let it stop me! I figured out quite early on that if I let it Crohns would destroy all my hopes and dreams. I was 15 when diagnosed and only just finding out who I really was and what I wanted out of life. Ideas of college,a vocation and relationships were only just being formed in my mind so I just added living with an illness.
Life moved on, I learnt that whilst I couldn’t ignore my health totally I was too stubborn to give in. My first few attempts at furthering my education were thwarted by Hospital stays and medication, both had a big impact on my world.
My dreams changed but the more I was told I couldn’t do because of my health the more I was determined to do it! I promised myself I wouldn’t let it beat me. Over the years I found ways of coping with 90% of my issues including the constant fluctuating pain and the embarrassment of being a teenager with bowel issues! In fact I believe that starting my adult life with Drs knowing me best from behind, soiling myself in public and normal hormonal problems gave me the opportunity to develop my core nature in a relatively unique way! If I wanted to enjoy life then I had to work harder for it. I didn’t have the media fueled support that is so readily available now, I didn’t know what the future held for some one with crohns so I tried to deal with things as they came at me.
I can’t help but think how different my life would be now if I had had the resources that are available today! Better or worse, its one of those questions we’ll never know the answer to. The internet opened up the medical world to everyone. I had thought I was alone in my fight but suddenly I had people all over the world knowing how I felt, dealing with the same issues I do.
Has this made my life any easier? I’m not sure it has and in truth I feel sorry for those with issues now that have all the facts at their fingertips. If you were to search online the symptoms of a common cold you can come away thinking you were dying of a brain tumour. This is the same with every illness. So I’ve started to feel sorry for the newly diagnosed, the future to them looks kinda grim. I never questioned my specialist when he put me on meds, he’s done the training and knows more than me, now people are quick to look for side effects and turn down life saving tablets because some have bad outcomes. I do blame 25 years, give or take, of prednisolone for the damage to my body now. I hate them, I always have, but they have saved my life more than once or twice so it breaks my heart when I see people refusing to take them because they’ve read other peoples experiences but what worries me more is people telling others to seek out opiate based pain killers at early stages, saying that we shouldn’t be left in pain.
I never knew this, my pain was dealt with with soluble paracetamol and buscopan. The pain was part of Crohns it molded me and guided me. I only ever had morphine when in hospital and in the years before my major op, I didn’t like taking them but when my intestines were so swollen they created a permanent dent in my spinal chord and the meds saving my life made my joints into balls of fire I once again accepted the knowledge of the specialists and added Tramadol to my list of pharmaceuticals! Before long though my body had adjusted to them and they no longer helped the pains. I see a future filled with more pain and operations, its chronic illness fact 101 so I can only wonder how I’ll cope. This illness, like life, is degenerative. It will get worse and what will the future hold when my body is already maxed out on analgesia just to get through a ‘normal’ day?
With every new pain i’ve acquired, some with a diagnoses and some without, I’ve still denied myself the last line opiate meds for every day use. I don’t do this to be a matyr, I do it because I’ve always thought life was wonderous with so many things to see and do. My pain already makes my memory hazy and my body lazy that i don’t want to dull my senses anymore. The drawback to this though is that what started out as constant but copable pains turned into a few days of pain leaving me restricted has now grown into an everyday event! The activities I’ve always relied on to take my mind off the pain are now virtually impossible to do. My positivity eaten away by the Dr’s inability to help me, how can they? They only see 1 issue at a time, whether major or minor, and assume that i can live with whatever it is. The thing is they aren’t all that wrong. I not only lived with Crohns I also enjoyed life whilst living with it! I’ve done things in my life that some healthy people haven’t done and I’ve done it whilst being in constant pain, toilet trips up to 30 times a day and suffering from malnutrition but I cannot isolate my illnesses. Its like a constant dripping tap in a plugged sink. Every drop landing on top of the last increasing the volume until the sink overflows! That’s like the pain with my illnesses. Every one of them is just another drop but all together it’s a flood! It makes all the little aches and annoyances a lot to handle on their own but added to the major pains they are crippling me! My heart and head want to fight this but my body is letting me down. I can’t see major pain relief will do anything to help me live life, they’ll just dull my senses so I don’t feel so bad about not being able to enjoy life.
That then leaves me in a dilema. My mind is still very active, I still have things I want to do, new and repeats. If I take the opiates I won’t be in pain but the world will lose it lustre. If I stay off them my body won’t let me do anything but survive day to day. Either way I still have quite a bit of life left to live never being what i actually am. A social butterfly born to appreciate life at its best!
I’ve allowed the pain to get control though, of body and mind. Being unable to work, socialise or participate in normal life has given my body the chance to rule my head. Why try? Why do things? Especially if that then leads to an increase in my pain levels? Why?
Because This Is Life! This is my life. The medical world seems unable to help me with it, those around me have their own lives to trudge through and my body isn’t going to stop this onslaught so my only option is to continue fighting. To find a way to fight stronger! Because the alternative isn’t even a choice!