Queasy Peasey

If you follow me on Twitter, know me personally, or even watch me from afar, you'll know that I spend a lot of my time on buses. This is an unfortunate necessity for me as I'm too lazy to learn how to drive and not anywhere near rich enough to hire a chauffeur.

Having a Chronic illness  is hard when you are at the mercy of public transport. Well it's pretty bloody hard most of the time but for the benefit of this post we are focussing on this foible of mines on particular. 

With Crohn's Disease I often feel the sudden urge to rush to the bathroom, queasy and on the verge of vomiting at any moment, and faint a lot of the time. One of these issues is difficult enough to handle on it's own whilst whizzing around town with a bunch of grumpy strangers, let alone when you are dealing with all three. 

Three is usually the magic number in my case as all three more often than not go hand in bowel. 

The sweats start, then I feel dizzy, then queasy, then faint, then icy cold, then the urgency to go the loo strikes, then back to queasy again and this cycle continues until one of the 3 wins the race and annihilates me first. 

I've never had 'an accident' on public transport, or outside of the comfort of a bathroom for that matter, and I've never fainted on a bus either. I have been sick on one though, and fainted and threw up in public an inordinate amount of times throughout my life. 

Being sick is almost a hobby of mine. Not one I enjoy or particularly relish to be honest (yuk, relish), but the amount of time spent doing it could certainly lead it to be called one.

Whether on a bus, or in a car, a plane or on a jet ski, throwing up or passing out in public is certainly never pretty and unfortunately never acceptable, even in this day and age. 

In my experience, if you throw up/pass out  in public you are either drunk, on drugs, haven't eaten, too hot, too cold, travel sick, or a combination of all of the above. [The only place these rules don't apply are in hospital - being sick in there is totally fine by the way.]

I run through a mental checklist when feeling nauseous on the bus; 

1. Is there a window near me I can open without irritating my fellow passengers? 

2. How far am I from home? Can I walk the rest of the way?

3. How many layers of clothing can I remove before becoming indecent? 

4. How far am I from the hospital? Can I walk? 

5. Do I have my sick bag? If not what can I use in an emergency? 

6. Are my lips blue yet? 

7. Would any of these people give a hoot/call an ambulance/notice, if I dropped to the floor right now?

8. BREATHE IN. BREATHE OUT. 

This daft checklist is the only thing that keeps my mind focused when I feel like death in public. If I can answer yes to any of those questions then I might just be ok. It's amazingly important not to let the panic set in otherwise you will probably end up projectile vomiting over the entirety of the No.27 and all it's occupants. Whether you want to or not. Keep calm is such a cliché these days but it's still very important to remember.

But that's me arrived at my destination now with my insides intact so this blog has served it's purpose as a wonderful distraction ;) THANK-YOU x x 

Crohn Together

The 19th May 2013 was World IBD Day. ('Inflammatory Bowel Disease' to the uninitiated). It was a day where people from all over the World were helping in any way they could, big or small, to raise awareness of our conditions, and some cases in trying to raise money for IBD related charities.
Crohn's Disease and Ulcerative Colitis are two of the most well known and life-changing bowel conditions around. Of course when I say 'well known' what I mean is that you will be aware of them if you are a doctor or have a family member or friend with the illness. Or have it yourself. Otherwise, these conditions (incredibly prevalent across the UK alone) are still a bit of a mystery to many. That's why these events are so crucial. We need to make people aware that what we are dealing with is not shameful, should not go unspoken and that our strength is something to be admired not pitied.
As I've mentioned previously in the blog I had no knowledge whatsoever of Crohn's Disease until I was told I had it. The terror there was that I was told one minute I had Appendicitis and was getting my appendix out, then the next the news hit that I actually had and incurable illness I'd never even heard of.  Bit of a difference and pretty difficult to get to grips with.
Amongst other things, World IBD Day is prominently an opportunity for people suffering with these conditions on a daily basis to be heard by the wider world. To speak out about the trials and tribulations we have to endure day by day and for the remainder of our lives. The day is a chance for us to clear up misconceptions about our badly behaved bowels, and make others see that we are still people, not just patients. It's also a chance for us to take part in events all over our own parts of the world and involve those close (or not so close) to us too.
For my small contribution to the big day, I was invited to go to Birmingham to take part in an IBD Day Symposium. An event set up and organised by patients, for patients. It was the brain-child of Claire Hunt (a Crohn's patient and massive fundraiser for Crohn's Disease all across Britain and beyond) and John Bradley (the author of Crohn's tome 'The Foul Bowel' and Crohn's sufferer of over 20years). I was flattered to be asked and honoured to be involved in an event with such Crohnie Royalty ;)
Our event was held in Birmingham Children's Hospital and speakers were invited to share their experiences of living with IBD in their own words. I was asked to talk about 'Reaching Out' with my disease and in particular, blogging about Crohn's Disease.
It's a subject I'm obviously well versed in, but my public speaking skills leave a lot to be desired.. I put in plenty of practice before the event; trying to slow my Scottish speed-talking down to below 500mph and in attempting to remember I'd have an audience to look at and not just my feet.
After travelling down to Birmingham and meeting everyone I was much more at ease. Some of these people I'd chatted to and learnt from for several years and up until then only seen in tiny Twitter box form. Lots of fun. I found myself completely inspired by the speakers and in particular the younger ones. They have had so much to deal with at such a young age and yet show how strong they are and how they are looking to their futures with nothing but positivity and hope, in spite of an incurable illness. Only a stone-hearted person could fail to be encouraged and humbled by their stories.
My talk went down well and apparently no one could tell my knees were knocking and hands were shaking the whole way through. It gave me a heap more confidence and encouraged me to continue writing. The event was a success, everyone had a lovely time and left feeling a lot more positive about their own condition, or that of their loved ones. I left feeling emotional but comfortable in the knowledge I'm not and never will be alone in my fight.
I want to help people like myself who are coming to terms with their illness. It's a struggle for everyone, whatever age you are diagnosed. It's a life changing time and can be utterly terrifying. It's important to remember there is always support out there in one form of another for everyone.
You don't have to look far to find it either. You've found this blog so you're already on the right track ;)

'Maybe she's Born with it, Maybe it's Crohn's Disease!'

In undertaking what would appear to be a miniature vanity project (or as I disguise it; ‘research’), it would seem that the most popular post on my blog is 'Hair Today, Crohn's Tomorrow', and the most searched topic, is ‘how does Crohn’s affect your hair?’ or ‘My hair is falling out with Crohn’s!’. The same question is asked again and again in a similar style in varying degrees of panic and with incredibly varying degrees of bad spelling. *shakes fists*

For me it’s an issue I suffer from regularly and if this tiny bit of ‘research’ is anything to go by it seems I’m not alone in my hairy worries.

In considering writing about the misfortunes of my follicles again, I got to thinking about my body as whole. My mind tends to drifts from time to time and I have to take a moment to appreciate what the big man upstairs blessed me with...
No, what I mean by that, is that along with the headache that is my head, Crohn’s also affects multiple parts of the body on the inside as well as the inner. Although, it is definitely a MASSIVE blessing that the ugliness on the inside stays there.
It’s true to say that feeling like Crohn’s is ruining the outer shell too can be depressing. One of the few positives about suffering from Crohn’s is that it’s ‘invisible’, meaning you don’t necessarily have to tell anyone you are going through Hell on the inside because they normally can’t tell on the outside. This isn’t always the case though as often the disease makes itself known in your physical appearance in little ways that no amount of Maybelline can fix.

So what can be do to keep these horrible little foibles at bay? From the experience I’ve gained in living with Crohn’s and in having skin and hair and stuff, I’ve taken the liberty of compiling a small list of tips I’ve found to be a help in keeping the outside looking a million times better than the inside.

Hair Loss

There are many causes linked to hair loss with Crohn’s. In the majority of cases this particularly awful affliction is caused by drugs and the medication we unfortunately have to take to keep our disease under control. There is usually little can be done to help delay or ease this; discussing increasing your Folic Acid intake or starting Biotin, Zinc and various Multivitamins and supplements with your Doctor can be a good place to start. Other more natural solutions to ease a sore scalp and help treat your hair are to create a mask with Olive Oil – coat the entire scalp, wrap for up to an hour (depending on the amount of hair you have) and wash thoroughly. Another tried and tested tip from a friend would be to create a mixture of Olive Oil, Honey and Egg and massage into scalp for up to 20minutes. Anything with Vitamin E and Jojoba Oil are also lovely. If nothing else these help to keep the hair in good condition and stop the scalp throbbing quite so much.

Dry Skin

This is something I only began to suffer from after my surgery. My face is the worst and during flares can really break out, especially around the nose and forehead (which is most of my face to put it bluntly). Oil comes into play again here, a good tip is to mix together Olive Oil and Castor Oil then gently spread evenly over the affected area. Remove and repeat a few times until the skin feels soft. When I was younger I read somewhere that Honey on the face was a good tip to keep it soft, this led to an embarrassing moment when my Mum walked in on me in the bath, but needless to say it was a mess but does the trick.

Mouth Ulcers

Drink plenty of fruit juices where possible as lack of Vitamin C can be a major hindrance. Always ensure you are keeping your whole mouth as sparklingly clean as possible by mouth washing along with brushing. Mixing a solution of Sodium Bicarbonate and water is a good way to cleanse the mouth if no mouthwash is available. When ulcer-ified avoid foods with sharp edges, like crisps toast and nuts. Also stay away from chewing gum as it can lead to biting the inside of the mouth. A couple of final weird but wonderful solutions are Peppermint Oil and eating raw onions. (Obviously in a salad or something please don’t start chomping on a raw onion, it’ll only end in tears) Ahahahahahaha…. Ha..ha..   

Red Raw Rear-End

Steer clear of perfumed products when cleaning that area and avoid flannels and sponges or anything that may irritate the skin. Do not rub, and stay away from talcum powders and lotions and potions. Wear cotton drawers when you can and finally, WET WIPES ARE YOUR NEW BEST FRIEND.

Ache Me Up Before You Go, Go

Crohn's is like an irritating alarm clock from time to time. One minute you are in heaven, blissfully unaware of the terrors that will await you when it goes off. The next, it does and it's in turns immensely irritating and depressing. It's an annoyance and often comes at a time when you least expect, (or want) it.
Like an alarm, Crohn's is there most days, for me usually making itself known most prominently in the early hours of the morning or at mealtimes. It strikes with such force and audacity that it has become the most hated of all my inanimate objects. (The fridge and I get on better now since that awful period in 2011 when it left the Iceberg lettuce disturbingly flaccid after only being inside it for 24hrs).

The unpredictability of the condition is something that most sufferers find very difficult to adapt to. If they ever do at all.
It's the interference in one's day to day life that grates most for me. I hate the idea of making plans, looking forward to said plans, building the excitement of said plans, getting dressed and raring to go then requiring excessive toilet time, vomiting all over your brand new Primark number, being struck down with blood curdling pain, or all of the above.
I hate cancelling on friends and family, especially at the last minute. I know they understand, they truly do, but it can't be easy on them either. Plus, if I may be permitted to be teenage about it for a minute, its SO UNFAIR!! Why can't I just once enjoy myself without worrying about the consequences?! Other people do it! Some every weekend! Some 3 or 4 times a week!! (I'm not entirely sure what the 'thing' I'm talking about is anymore..)

Crohn's Disease has a few cheeky ways of reminding you who's boss. It has a hold over sufferers that it seems unhappy to let go of from time to time. Of course I'm well aware I have a life-long illness, but does that really mean I have to think about it 24/7 baby 365? Apparently the answer is a resounding 'yes'.
I have days when I am 'well' and even feel 'good' - but I will still have to ensure I am watching what I eat and looking after myself. I have a barometer of pain - a twinge is just a twinge, a sigh is just a sigh.. But when it's bad it's BAD. I then have a further barometer of, ok it's bad, but how long will this last? Can I make it through the next few hours without passing out?
This may sound melodramatic but it's a genuine routine for me. I'm not looking for sympathy, because I am 100% grateful for the days when all is well with my lady-bits. It still doesn't make the unpredictability factor any easier to deal with.

It's important to remember that when Crohn's acts up and tries to take you down with it, to maintain what you can of yourself. By that I mean; although you may be floored (often literally) by the physical aspects of the illness, don't allow it to infect your brain too. Don't let your emotions get the better of you and allow it to bring you down. I truly believe that just makes it harder to get out of.
Try to think of my alarm clock metaphor - yes, its an irritation, but as we know an inevitable one, so we might as well stop hitting the snooze button and just get on with it.

Crohn To Bed

Fatigue within chronic illness is a major stumbling block for me at the moment. No matter how much rest I seem to get, the urge to snooze for Scotland still comes over me and it's utterly relentless.

Waking up in the morning I never feel ‘awake’. I know that isn’t a particularly surprising statement, it’s a pretty normal occurrence for everyone to feel decidedly less than joyous when the alarm goes off.
But I’m talking about waking up feeling like I’ve only just lay my head on the pillow the night before. It’s annoying and frustrating and is hard not to shake off – and that’s just me opening my eyes.
Lately I’ve developed an intense hatred for a wee bird who lives in the tree outside our bedroom window. Purely because he is LOUD and sound so HAPPY to be wide awake at 5.30 in the morning. It’s not natural to want to locate the nearest utensil to throw from a window at an unsuspecting twitterer before your eyes have barely opened. You eat worms mate, what have you got to be so perky about?

After dragging myself to work whilst attempting to remain awake on my bus journey, I manage around 3-4hrs work before the tedium strikes again. Then when midday comes around I consistently think ‘Lunch will perk me up!’ – It never does. In fact it only serves to make me even sleepier. The need for 40winks is almost unbearable at this point. There is nowt I can do about it either – I don’t have a car to nap in or the chance to nip home as my home is a 50 minute bus journey away. (Plus I only have an hour’s lunch break – that just wouldn’t be do-able – believe me I’ve considered it).  The next few hours until my shift is over are a struggle. Add to the constant fatigue the pain or nausea that comes with whatever I’ve dared to eat for lunch, it’s a tricky tightrope to walk.

When that glorious moment arrives and my work day is over, I get that same lovely bus back home. This is where the fun really begins. How much time have I lost from dozing off on my journey? How many times have I fallen asleep? Did anyone see me drooling? Am I now 12 stops beyond my house?
It’s the trip home where my skills at keeping my eyes open when my whole body is telling to do otherwise really come into their own.

Every day in life I tell myself I’ll nap when I get home. It never happens. I get home eventually around 7ish – then chat to my partner then have dinner then it’s almost bedtime anyway so ‘what’s the point?’ I don’t want to spend my life waiting to go to bed.

The thing is, even if I was blessed with the ability to work from home, or I had a shift that finished midday, I still don’t think I’d take the opportunity to nap. I would feel like I was wasting time or that there was something else needed doing. Have you seen the state of the grout on my bathroom tiles for a start? Don’t answer that.

Fatigue is a common symptom of Crohn’s and most chronic illnesses. It’s very hard to deal with as it also affects your mood – I find myself irritable and snappy when I haven’t had enough sleep (so that’s all the time I hear you cry). I find myself getting regular headaches and sometimes even nauseous when I’m tired. There is no simple fix for this either, many Crohnie’s find vitamins, changes to diet and/or sleeping patterns helpful but in most cases it’s just a cross to bear along with everything else.

Trying to get as much rest as possible does tend to help – even if you like me, can’t nap, at least make sure you are being lazy and putting your feet up. Take it easy when you can and if sleep wants to take over and you are not in charge of a vehicle, crossing the road or carrying a small child then let it.

I feel it’s soft duck-down pillow grip on me now….zzzzzzzzzzzzzzzz

 

Crohn Out

My body is an amazing piece of kit.

Before you all cease reading immediately due to my extreme vanity, let me rephrase that;
All of your bodies are amazing.

Since I was diagnosed with Crohn's Disease I've found that my fascination with the human body and how it works, has grown tenfold. Well, it's blossomed. I suppose before I became ill myself I took much of how my body performed for granted. I didn't pay any attention to it as I really had no reason to. Other than the normal activities you are required to attend to in order to keep it ticking over. Resting it, feeding it, washing it and keeping it active.
Appearance wise, I did all the usual things women (and some men) do in order to 'maintain' my particular piece of machinery. I painted my face and pouffed up my hair, made sure it smelt nice and was kept sparkling clean. I draped it in nice clothes (and some not so nice), and prised it into high heels and made it pay for it later. I covered it in lotions and potions and trussed it up like a turkey in various degrees of torture-inducing underwear. 
But, like any piece of machinery, the outer casing can look beyond glorious, but if the internal parts are failing then you really are fighting a losing battle.

Shortly after my initial diagnosis I was angry with the body I'd ended up with; why was mine so useless? Why do I have to be stuck with this failing machinery?
I raged with myself that I hadn't taken enough care of myself and that this disease was my punishment. I understand now of course that this isn't the case at all. In fact I could have eaten gold plated chicken kievs, bathed in asses milk and drunk from the fountain of youth and I'd still have ended up with Crohn's Disease. Albeit looking about 12 and with teeth like Jaws from the Bond films. Besides, asses are not particularly common in Scotland so it's completely impractical.

It's very important to me now that the inner casing is as 'attractive' and taken care of as the outer. More so the other way round I reckon.
If you are sickly on the inside that often radiates on the outside too. Crohn's may be an 'invisible illness' but many of the symptoms are so visible that they are hard to conceal at times. For me it's the colour draining from my face, the swollen stomach, hunched up stance when in pain or the weird hot flushes when I'm having a flare. No amount of make up can conceal all that. And to be honest, I wouldn't really want it to. Sometimes it gets hard fighting an illness alone. Trying to explain to others how utterly awful you feel on the inside. It also gets tiresome trying to hide the more visible signs.
Like a car running out of petrol these are my personal warning lights that remind me I need to take action. Be that the simple act of allowing my machinery to rest for a while or take it to see an expert for a good checking over.
Don't ignore your warning signs. They are your body's way of letting you know something inside isn't performing as well as it should.
You wouldn't let a car run until it packed in, so treat your own piece of kit with the same respect.

'I'm a 1977 David Bowie Album'

I don't consider the life I have to be a hard one. I have a full time job, a mortgage, a man I adore and a family and friends who I love unconditionally. I don't have money as such, but I have enough to get the bills paid and have a little left over for fun. I have a pretty good social life and hobbies and I am blessed with people around me who make me laugh until my sides ache. I have a cat who is the feline apple of my eye and I get to pet him anytime I like whether HE likes it or not.
So with all that joy in my life, why do I sometimes feel so low I could fill a Loch with salty tears?

There is a colloquial saying in Scotland that goes "Well at least you have your health!"
I think this phrase is supposed to instil hope and encouragement in its recipient. Whatever happens, however bad things get, however hopeless you feel, at least your not dead!
Over the years that saying for me has gone from one that I used to hear the over 80's of my local area reciting at the end of every conversation relentlessly, to thinking it was utterly pointless and redundant, to finding it such an unbearable cliché I find it laughable. I find just the utterance of it is peppered with bitterness.

The truth is, Grannies of Scotland and beyond, I don't have my health.
I have an incurable illness I will most likely have until the day I meet my maker. The majority of my twenties have been spent being 'ill'. This isn't going to change, those are the resounding memories of this decade. I fully intend to ensure my 30's are better, but as with any plans for the future, Crohn's will unfortunately have the final say in this.

Everyday in life I am aware of the fact I have Crohn's. I wake up and go to bed having felt it/thought about it/been irritated by it or all of the above. But some days I KNOW I have Crohn's. It hits me like a bolt from the blue and I am floored by it. These days usually come after/during a bad flare, but sometimes they are completely unexpected. Some days the reminder I am not ever getting better and the realisation are almost too much to bear and I feel entirely overwhelmed. I feel like I am on the outside looking in on myself and in that moment I feel utterly hopeless.

These days are thankfully few and far between. Most of the time I have a positive outlook on my life and my disease. I know that it wont go away and I try to make the best of a bad situation. That isn't easy at times but its essential.

When I'm low about Crohn's Disease, I'm LOW. I'm the limbo champion of the World. I'm a paving slab downtrodden into the dirt after a particularly heavy rainfall. I'm a 1977 David Bowie album. You get the general idea.
It's a position that I find incredibly difficult to get out of. The feelings of hopelessness and misery are difficult enough to deal with on their own, but these are compounded by my own frustration at myself. Why are you suddenly getting upset about this now?! You've had it for years! Get a grip of yourself! ETC.
Its this mental vicious circle that can be almost unbearably hard to break. This is the part of Crohn's Disease and many other chronic illnesses that for the most part goes unspoken.
But not by me. I'm not ashamed of these feelings. That doesn't mean to say they don't antagonise and frustrate me, because they do, incredibly so.
But unlike Crohn's, they are temporary. These blue moods are a part of my illness and therefore a part of my life, and like The Terminator, they will be back. I have accepted my condition but I know it will hit me brick-in-the-face hard from time to time. That's not something I look forward to, but I don't spend my life waiting for it either. I live my life to the fullest and best of my ability when I have the physical and mental capacity to do so, and I try not to be too hard on myself when I don't.

Please never allow yourself to be anything less than honest with yourself and the people who love you.
Your feelings are not your failings.