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.

Day 6 #HAWMC - Letters

Dear 80yr old Kathleen,

Firstly, Congratulations on reaching the ripe old age of 80!
Considering we are Scottish and have an incurable illness I'm pretty proud of that achievement in itself!

We are almost 30 as I write this letter, and I am going through a stage of constant wonder at what the next couple of decades will hold for me. I am entering a new one so its only natural I suppose.
I'm excited. Terrified. Anxious. Insecure but pretty happy all at once.

Right now I am in love with a wonderful man who I can't imagine being without. We have a little house and a littler cat and I am incredibly content. I hope this is the same man you are sitting on the porch with as you read this. (The porch should have a swing seat thing on it like in the films - we've talked about this remember?)
I hope he is still as amazing as he is right now and that you make him feel that way everyday.
If not, I'm sure you had your reasons, you have pretty good judgement and I reckon you know your own mind by now. Well at least I hope you do (I've a good few years to catch up..;)

I'm in a job I can't say I'm overly happy in. This is my main stumbling block. I think I've become someone who is too happy to please others and maybe this has led me to make choices I perhaps wasn't 100% comfortable with. I can get stuck in a rut, and with the pressure of staying financially afloat and maintaining my health, I often 'settle' in positions. (Ooh matron).
This is something I really do hope to change in the next few years. I don't want to look back on my 'wonder-years' I realise I spent them worrying about having to scrimp and save with seemingly no return.
I also understand however, how lucky I am to be employed in the current climate and often don't want to risk a change for fear of my health or our finances being jeopardised. Plus, I suppose I'm still insecure in my own abilities, lack of confidence often holds me back.

I wonder what you are thinking when you are reading this. I hope it's being read with a little chuckle at how naive I was and how much better things get.

Apart from stresses like my job, money and my illness, things are pretty good. I love to write and am doing pretty ok at that. I love to spend time with my beloved and my friends and family. I love to dance. God, I do hope you are still a right wee mover in your old age.

As for our illness, I obviously would love to know there was a cure for Crohn's in our lifetime. If that's unfortunately not the case then I hope at least you are as well as can be and stay that way for as long as possible. I will continue to try and raise awareness of what we are going through and help others. Don't ever feel like a burden to anyone, you are incredibly strong and I hope you stay that way.

More than anything else I hope that you are truly happy and contented wherever you may be. (I also hope it's somewhere hot and that you are eating sensibly and that you still have all your own teeth).
I pray that the choices I am making now are good ones and that you are proud of yourself.
I hope you are loved, and laugh everyday. Those two are things I simply can't do without and hope to maintain. For now and for then.

Love,
Kath, aged 29 and a half


This post was written as part of WEGO Health's Activist Writers Challenge #HAWMC 30 posts in 30 days

Day 4 - #HAWMC - Sharing Resources

Today's post asks us to create a 'Care Page' for the newly diagnosed. It's aim to provide a starting blog for future advocates and a little help along the way shortly after diagnosis.

As I am a UK resident I've focused mainly on the first few places I ended up when seeking advice and support following my diagnosis.
If you too are in the UK, your first point of call should be the NACC. The National Association of Crohn's & Colitis. They are an excellent website and organisation offering help and information to Crohnie's new and old. They encourage you to reach out and come to them for guidance. They offer meet ups and events members and non-members can take part in. You can make use of them purely for informational purposes or get actively involved in charity events, marathons and coffee mornings.

http://www.nacc.org.uk/content/home.asp

Another great website to hit when Crohn's arrives on the scene, is the site of author John Bradley. He has written a wonderful book on living with Crohn's called 'The Foul Bowel' - which is funny, insightful and informative all in one. It's a great read for newly diagnosed Crohnie's as it is in turns informational and hilarious. It goes to places no books have gone before.. :)

http://www.foulbowel.com/

A relatively new UK charity set up for Crohn's support is called the Stephanie Rose Crohn's Foundation. One of the founders is the parent of a Crohnie herself and is an active member of the Crohn's community. They offer excellent advice and information for newly diagnosed patients. They are active on social networking sites such as Facebook and Twitter, and lovely people to boot :) 

http://www.thestephanierosecrohnsfoundation.org.uk/

These are all great places to start, and definitely worth a look. I would definitely recommend joining Twitter. I've met hundreds of amazing Crohn's sufferers who I could now call friends. They are always on hand for advice and support and as they are all over the world, there is always someone up and awake when you are down!
Finally, patient written blogs are also an excellent source of perspective and outlook on the ins and outs of living with the condition day to day. Look up Crohn's blogs on the net or check out my recommendations under my reading list.
Oh and I assume it goes without saying, READ THIS BLOG FROM COVER TO COVER ;)


This post was written as part of WEGO Health Activist Writers Monthly Challenge #HAWMC 30 posts in 30days

#HAWMC Day 1: Getting Started

I've been involved with WEGO Health's 'Health Activist Writer's Month Challenge' for the last 3 years. This being the 3rd.
The first year I got involved was the first year it was launched. I thought it was a great idea.
I was around 4 or 5 months into having started writing my blog, and around 6months post surgery.
I was ,by this point, pretty hooked on writing and more importantly, in learning about my condition. 
The idea of writing a new blog post a day and relating it to my condition seemed like a great challenge, and a great opportunity to share opinions and advice with other sufferers. The blog challenge gives a whole new perspective on Crohn's for me. Although the prompts are the same for everyone daily, its exciting to see what spin other writers give them.
It's also incredibly inspiring to read what others go through and how they manage to make the best of it. It's fun to get feedback on my own posts and compare experiences with other sufferers.
Because WEGO is a Health website and a patient forum, all kinds of people with all kinds of conditions join in the writers challenge. The beauty of this fact is that we can all learn about one another's illnesses. We can spur one another on. And hopefully educate and inspire our readers at the same time.
For me, there are conditions out there that I'd never even heard of before I joined the site. I am learning about what others go through on a daily basis...on a daily basis.. What could be more educational?

This post was written as part of WEGO Health's 30 posts in 30 days #HAWMC