My Crohn Personal, Disease

Spending more time than I probably should on social media, has brought up an interesting issue for me lately. Aside from the usual; getting disapproving looks from my significant other when I check my phone AGAIN in the middle of watching a film. 

Lots of you message and email me querying your symptoms and whether or not I've tried this drug or had that jab, whether I've felt this pain or had that side effect. What I seem to constantly relay is that no one's Crohn's Disease is the same Your Crohn's is not my Crohn's. 

Like any illness there is always a strange undercurrent of competitiveness amongst it's sufferers. It's a strange human trait that spreads like a virus the longer it's left alone. 

Comparing your symptoms to others can of course be helpful in gaining knowledge and an understanding of your condition, however it can also lead to feelings bordering on inadequacy. 'Ive never had surgery so my Crohn's can't be as bad' 'I don't seem to be in pain a lot so maybe I shouldn't be talking about it..'. 

I've seen occasions of people being shot down in flames in group discussions because they still have all of their insides or because they've only been on one treatment and so far it's working. How bizarre. How strange that other humans have the urge to 'better' one another by reminding them that THEY are worse off! The rules of logic don't even seem to apply. 

There is no positive outcome from reminding the world (or in this particular example: a fellow, and vulnerable, patient) how awful you've had it: think about this for a moment before posting graphically about your experiences; will it help to ease the worried mind of the person you're directing it towards or will it only serve to terrify the briefs off them? Will it make you feel more satisfied? Why? What is lacking in your life that you feel it necessary to play the victim? 

If after mulling those thoughts over you still post then fair enough. 

I just fail to understand what benefit comes from attempting to out do someone else in a similar position. Isn't the point of communities and help-forums to share knowledge in an informative and supportive way?

 

When I was first diagnosed I was given so much misinformation it terrified me. Amongst other symptoms I was told I'd go blind, lose my entire stomach, require a bag for life, eventually get cancer, lose all my hair, etc etc. 

In reality I lost some of my intestines and a lot of my hair. Not nearly as horrifying. 

It's a culture of shock and drama that people seem to thrive on. Always clambering for the worst case scenario. 

The reality is Crohn's Disease, and chronic illness as a rule, is really pretty rotten. But everyone is an individual and everyone suffers differently. What treatment works for me may not work for you, it doesn't mean I am better or worse off than anyone else. I'm just my own woman with my own body and my own miraculous rack. No one can tell me I  don't FEEL a certain way because only I feel it. I decide when I can't cope and I reach out for help. I don't allow someone to tell me I'm 'not that bad because I..' BLAH BLAH BLAH - I know my own body and abide by it's rules not anyone else's.

Crohn's is very hard to live with and can affect all areas of your life. You just have to decide whether you live with it or against it, because the latter is a much harder climb. Especially when you are constantly batting away horror stories. Trust your gut. Sometimes it won't let you down.

Big Spoonie Little Spoonie

The term 'Spoonie' is one commonly used with chronic and invisible illnesses. It originates from a great read; The Spoon Theory by Christine Miserandino, in which she attempts to explain to a friend how having Lupus affects her daily life. (http://www.butyoudontlooksick.com)

She uses spoons as a physical interpretation of the unlimited possibilities most 'normal' people have in daily life. She explains that those with a chronic illness don't have that luxury and are limited in the number of activities (spoons) they can undertake. The spoons were used to convey things being taken away as the day progresses. Things like energy running low and how sick people quickly 'lose' parts of themselves in the process.
To be completely honest, I’ve never been entirely comfortable with the ‘Spoonie’ term. I certainly understand why it's so commonly used in explaining the life of a professional sick person, but I often feel it's almost an acceptance of defeat. I want to award and applaud myself for what I can do, not what I can't.

I've struggled for years in having Crohn's Disease to deal with the idea that parts of my life that I love have to be limited, or phased out entirely. It's often heart-breaking and can seem so unbearably unfair. I feel like I've gone through puberty and the grieving process all at once since my eventual diagnosis.  I was almost unbearably angry at first, and accepting my life had changed irrevocably was something I'm not sure I'll ever get used to. I wept and pushed myself to be the 'old me' rather than adapting my life to suit the newly diseased me. I didn't want to be this person; I wanted to be ‘normal’, and fun and not the friend who can't make it YET AGAIN. I felt a constant temper tantrum bubbling away inside myself, (and there was enough bubbling inside to deal with as it was).

I now try to decide as I wake what I can manage that day. If I find I'm really struggling, I mentally rate myself on a score of 1-to-hospitalisation and then take it from there. I work full time but my employers are very considerate of my condition. If I can't cope they appreciate I still want to try (plus sick leave only leads to incredible anxiety) so they'll give me alternative work, or even let me go for a lie down. Housework needs to be planned too: I will maybe try at least one task after work, maybe two if I'm feeling cocky and make sure I have enough time left over for an hour or two's relaxation.

In the last year or so I feel I've finally begun to understand what it means to be a 'spoonie'. I try not to plan to far ahead wherever possible, as I hate letting people (or myself) down. My loved ones understand this now too which is an amazing bonus. They never pressure me and have adapted our relationships to cater for my badly behaved bowels. Those simple acts are incredibly kind and remind me how much I should never take them or anyone in my life for granted.

This post was written as part of The Super Spoonie Story Swap

Crohnly in your Head

A few months ago I found myself in a bit of a black hole. I was ill, and stressed in my home, and work life, (thus exacerbating my already horrendous symptoms) and I was struggling to hold it all together. I was snappy and weepy and found myself bursting into tears on the bus to work or the toilet, because that's where I was spending most of my time. Eventually after a chat with my then manager, I decided to try speaking to a counsellor. 

On making that decision, all at once I felt relief at possibly having an outlet for my apparent abject terror at the state of my life. 

I also felt a little silly. 

'I don't need 'therapy'! I'm a grown woman! I just need to get a grip of myself! It's probably just PMT! I'm taking up valuable time for someone who might really need it! Someone might have had their whole family murdered in front of them or lost their kitten and NEED help and I'm whining about MY life?!'

I calmed down and cooly calculated that if a counsellor could see me it's because they had time to do so, and weren't snowed under with distressed/kittenless orphans. Plus i was just being a big fearty.

After my first 'session' (I had 6 in all), I felt positive, and vowed to start a wee video diary to log my experiences and share it with all of you. I managed two videos then couldn't continue. Not because I got bored, but because seeing a therapist is really emotionally gruelling. If you are honest with him/her of course. 

In my experience over the few weeks I visited my counsellor, I came to realise that I had begun to blame every wrong thing in my life on my disease. In my mind, I was at fault for not looking after my emotional/physical well-being, and I was solely responsible for my symptoms worsening. 

I was angry and confused at first because she wasn't giving my the answers to these problems! Where was the quick fix and problem-solving I'd expected?! I was having to do all the hard work myself?! I had enough on my plate!

Obviously there IS no easy answer, or quick fix to heal emotional wounds. 

I had begun to realise I was much, heartbreakingly, further from having accepted my illness than I'd thought. The truth of the matter was I wasn't sure I ever would. But I'd begun to realise that that's ok. I don't have to. 

In not 'accepting' Crohn's I'll never lie down to it. I understand of course, and 'accept' that I have a lifelong and incurable condition, but I don't have to let it rule my life. It never has to seep into every part of my being.

I cried a lot over that few weeks and was angry and sad and furious, and an absolute nightmare to live with, (sorry James), but I am still here and now with 98% less fear. I accept that there are things in life and in my past that I can never change. I can't force people to act in certain ways or say certain things and I can't be all things to all people. 

I am by no means on some hippy-style path to enlightenment, but I definitely feel 'emotionally lighter' and that can only be a good thing. 

Nothing worth doing is easy, and the hardest thing is looking at your own behaviour and judging yourself. Blaming a condition, your surroundings, people around you, or your place in life, means absolutely nothing if you can't look yourself in the mirror at night. 

I can. And I still see that squint tooth and hate myself for it. 

Where's that counsellors number again...?