Showing posts with label #IBD #spoonie #medication. Show all posts
Showing posts with label #IBD #spoonie #medication. Show all posts

Wednesday, 19 July 2017

My Kind of People

Chronic illness is used as such a ‘catch all’ phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then couldn’t all of those words be used in the same vein? Don’t all chronic illnesses ‘disable’ us in one way or another? Make us feel ‘diseased’? 
Chronic, as it relates to illness, is defined as ‘persisting for a long time or constantly recurring’. Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite.
Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last for what can seem like the longest time and you struggle to see an end to them. This can be hard enough to deal with on your own, but factor in having to communicate your health issues to the outside world and you’re faced with a whole new set of complications to deal with.  Explaining the intricacies of a condition to an outsider can often be intimidating and challenging to say the least; particularly if you are new to it yourself and still learning. When we do discuss our condition with others and don’t get the response or reaction we perhaps expect, it can be quite the setback. Often living with a chronic illness can feel humiliating. It can be embarrassing, distressing and complex. Often we don’t want to talk about our condition, which is wholly our right, of course, yet sometimes our symptoms make that privilege all but impossible. If it is a visible condition it allows for comment, and that’s something we sadly can’t control.
So pulling on at that thread of uninvited comment, a certain infuriating phrase that sticks in my head, and has been said to me upwards of 168798782784240 times, (at last count anyway) is:
 “There always seems to be something wrong with you…”
This is generally said as an off the cuff, (perhaps feeble attempt at humour?) with a snide undertone. It’s often spoken with a question mark at the end of it; as though we are somehow expected to answer to it. It’s not really deserving of a question mark in my humble opinion as it’s more of a statement of fact. I’m not sure what the relevance of such a question is either, other than to remind us that we are ill, ALL THE TIME. Sadly something we are all too aware of already.  The only answer that could be given to such a bizarre poser (and I find it most effective bellowed through a megaphone) is “YES, THERE IS ALWAYS SOMETHING WRONG WITH ME: IT’S INCURABLE”. But that response only served to get me thrown out of the library and banned from the local church the last 5 times I used it.
It is phrases such as these that are upsetting to someone with a disability and/or illness for many, MANY, reasons. Let me count the ways. (7. There are 7 ways).
1.  It implies we are being untruthful about our health problems. If you have to query in a suspicious tone that expects us to answer for an incurable condition then you nail your ‘I DON’T BELIEVE YOU’ colours firmly to the mast. This funnily enough doesn’t make for a comfortable conversation to follow.
2.  It makes us feel like a nuisance. No person who even remotely cares for another person should make them feel this way. Implying we are using our condition for attention or exploiting it for our own gain is just mean at the root of it.
3.  It singles us out. We don’t want to be sick, and we certainly don’t want to be treated any differently to a ‘normal’ person. Suggesting we are seeking some end goal other than the best
possible health makes us retreat into our shells and that can be increasingly risky for those of us with already wavering mental health.
4.  It makes us feel we are appearing like a hypochondriac. Anyone with a chronic illness dislikes hypochondriacs intensely. We have to eat, sleep and think about illness every day; we don’t need to hear you give us chapter and verse on that one time in 1983 when you had the measles. Just because you perhaps aren’t used to hearing people talk honestly about an incurable condition doesn’t make it any less true when we do.
5.  It silences us from talking about our illness. This is NOT good. We need to talk about our conditions because it allows us to educate, share, unload and learn. The more we remain silent on what we are experiencing the more withdrawn we become and the more ashamed we feel.
6.  It makes us feel embarrassed and ashamed. As above: not good. Something we should never allow ourselves to feel. Chronic conditions can get such bad press; we need to be at the forefront of changing that, not being beaten down by uninformed opinions.
On the flip side of this ghastly and mildly insensitive coin however, when met with thoughtlessness of this degree, I often try to mentally counter these statements with any positives I can find in them. Easier said than done, especially when you are still clutching a knife to their throat, but if you take a mental (and maybe physical) step back, and look hard enough you are bound to find something.  Let’s throw the negativity over the balcony, crushing it painfully below, causing irrevocable damage, and try that now.
1. Yes there IS always something wrong with me yet I’m still here, being alive alongside you, making me better than you in so, so many ways, and that’s excluding my impressive rack. 
2.  No, nope, sorry I think that’s all I can come up with. Maybe I’m just not a very
forgiving person.
The issue with phrases like the aforementioned “There always seems to be something wrong with you…” is that, whether intended that way or not, they are simply unkind and just so unnecessary. As I’m not (at time of writing) practiced in mind control, I can’t stop people thinking things like that of course, but I can certainly voice my discomfort when they allow the words to leave their lips. Meaning if you’re going to openly say something along those lines to someone with a chronic illness then you should really be prepared for the potentially messy fallout.
What may seem an entirely innocent comment on our condition to you may come across as a not-so-subtle jibe directed at us for reasons we’ll have to retreat into paranoia to discover. You see, it’s not ‘just a joke’ when you make another human being feel essentially lesser.
Kindness is so easy. It’s often found simply in inaction. It’s effortless! You can be kind by just not saying that thing you know would be taken badly should the person it’s aimed at hear you. Just don’t say it! It’s that simple! You can be kind by taking a moment, just one precious moment, to consider the outcome
of your words. If you have an inkling that what you are about to say to another
human being may be mean or insulting then just don’t say it. NO, you won’t
receive an award for it, but you also won’t receive a black eye, so swings and
roundabouts. Think bad thoughts by all means; we ALL do that. It’s one of the silent joys in life. But in much the same way you wouldn’t follow up saying “I’ll kill him” with then committing
ACTUAL MURDER, you can think we are lazy (for example), without actually
accusing us of being so. 
Maybe just consider this: Are you the type of person who deliberately sets out to upset and offend another human being whose only crime is not acting or looking the way you want or expect them to? If you answered yes to that then I hope you find what’s missing in your life someday. 
(See how easy it is to be kind instead of wishing you dead?)

Sunday, 25 September 2016

By The Book

I haven’t been blogging as regularly as I might be lately as my writing time is occupied writing another book. I’m really excited about this one and putting much more pressure on myself to make it brilliant and funny and genuine.

The first time round I had nothing to lose in writing a book – I wanted to do it to achieve a dream and to help people come to terms with an IBD diagnosis or just to give long term Crohn’s patients maybe something to smile at. I took my time in approaching any publishers because I genuinely didn’t think anyone would look twice at it, and to be totally honest I was afraid of having to face the knock-backs! But it turns out I didn’t receive any of those and the publisher I went with has been just brilliant to work with.
Getting a book out into the world with no knowledge of the industry, marketing or public speaking is no easy task so I’m proud of myself for all the work I put in to making it happen. Obviously my loved ones played a big part in that too but I’ve already thanked them enough privately to restraining order proportions.

So now I am working on book two and it’s strangely even scarier than the first time. What if no one wants me this time? What if I’m a one hit wonder? What if I hate every word I’ve written? (the 3rd one swims about in my head EVERYTIME I sit down to write).  

But that’s where I am with that: trying to make something readable and enjoyable and HELPFUL and consistently filled with self-doubt. But I guess that just makes me an author. If you’d like to be first to know any book news and aren’t my Mum or lover then you can sign up to my mailing list if you’d like! Click on this helpful link -

I'm also thrilled to have been nominated again this year in the WEGO Health Activist Awards! I'm up for both Hilarious Health Activist and Best in Show: Blog. Thanks to everyone who nominated me! If you want to cast your vote by way of an 'endorsement' you can do so to the right of this post or on my website. Thanks!

Health wise things aren’t too great at the minute, I’ve been pretty floored with a nasty sinus infection that I can’t seem to shake. My immune system is so low that the minute I start to improve someone just has to sneeze within 20 miles of me and I’m flattened again. My partner isn’t loving having to sleep with Darth Vader, but we all have our crosses to bear. Infliximab is still going well, so far so good, so I’m counting the days to next week when they pump me with more of the good stuff. And also Infliximab.  

But enough about me, how are YOU? 

Sunday, 17 July 2016

Saved By The Bowel

I was walking my dog today, he had a bit of a poorly tummy (bit of a running theme in our house) and he unfortunately threw up on the way home. This was on the path on the way into my street and just happened without warning. He was sick, I petted him and after he was done he trotted away quite happily and carried on with his day. However the look he got from a woman across the street stayed with me for the rest of mine.

She looked utterly disgusted. She shook her head and looked at me as if I’d just stripped naked and danced the cha-cha in church. I HAD just done that but she didn’t wasn’t there and that’s beside the point. The point is, she looked as though he had been wrong to be ill in public. In her eye-line.  As if I should have somehow stopped him.

Now I know he’s a dog and you’re probably thinking what does this have to do with IBD, but it was a moment that made me feel the same way I’ve felt many times in living with chronic illness. Embarrassed, ashamed, and ANGRY. You see these ‘moments’ happen a LOT in living with health problems. Here are a few from my (never ending list) of embarrassing moments since I got sick for reference:

-          Stripped down to my bra and pants for an MRI and walked into the room only to be reminded it was for my head only so I didn’t need to take anything off.

-          Threw up on a bus full of people into my BF's hoodie then stuck my face into it in some vain attempt to hide, in the process covering my face in my own vomit.

-          Passed out as soon as a needle hit my arm then threw up all over myself.

-          When my arthritic knee gave way when I was crossing a main road and I had to direct traffic around me. 

-          The time the tube containing my latest stool sample rolled out of my bag in a hospital waiting room under the chair of an old woman.

I could go on for another 56645451354854 examples but I don’t want you to get dumped/ fall asleep/ burn your toast /whatever, on my account. My point is that having a chronic illness often causes ‘embarrassing’ moments. Moments you’ll undoubtedly laugh at later, but in the moment you’ll want the ground to swallow you up.

The main issue I have though is that other people tend to make these moments embarrassing; they judge. They look at you with pity, or confusion or even disgust. They think your illness should be dealt with behind the safety of a hospital-ward curtain, where your sickness doesn’t have to offend their eyes. They have a rule book of ‘done things’ and you throwing up in the street/ on a bus/ on them isn’t one of them.  

But what do they think we are thinking? Well we mainly feel ashamed because they are staring at us like we’ve just arrived from the Planet Zod, we feel vulnerable because they are looking at us with disgust, and while we are trying to focus on simply putting one foot in front of the other we suddenly find ourselves in the position of trying to consider YOUR feelings. Those of an abject stranger. Then we get ANGRY because IT HAS NOTHING TO DO WITH YOU.

The point I’m trying to make is that people with a chronic illness can’t always hide away for fear of offending you. We shouldn’t ever have to. Bodily functions and ‘accidents’ happen to everyone, some more than others perhaps, but that’s our problem not yours. How much of a tit do you have to be to take offence to someone else’s misfortune? A triple-G-cup-sized tit that’s how much.

So when someone is vulnerable and you don’t know the full story, if you can help, then you should do that instead of look on in horror like you’ve just seen your own reflection in a puddle. Also maybe be more mature than that last sentence, and try to bear in mind that when things happen we maybe can’t help it. Having an invisible illness can be hard for so many reasons, please try not to make it harder for us just because it’s visible to you. 

Saturday, 2 January 2016

16 Things to Eliminate in 2016

1.       Ignoring or minimising health issues.
Let’s start with a biggie. This behaviour is not smart. If you see/feel a problem, talk about it. It never does any good keeping things in; emotionally or physically. What if the things you are ‘keeping in’ are slowly killing you? Isn’t it better to know what you are dealing with rather than spend your days living in a constant state of anxiousness and anxiety? (The answer is yes there by the way. Just in case this very sentence is making you anxious). If in doubt, get checked out.

2.       Doing diets/workouts/joining gyms if you don't want to.
It’s January! You’re a big festive fatty! You better lose those pounds fatso! And what better time than the start of a new year! That’s right, your purse is barren, and you’re heading back to work after a blissful indulgent period of time off, what better next step to take then silently crying as you mount a sweaty treadmill? If you don’t want to a join a gym – don’t. Yes, exercise is great, and necessary but find your own way – you don’t have to force yourself to join a spin class or kale eating contest if the thought repulses you.

3.       You don’t have to ‘classify’ yourself.
Personally, in living with a chronic illness, I prefer not to be referred to as a ‘crohnie’ or a ‘spoonie’. I don’t like the idea of feeling like I’m separate from the rest of the ‘healthy’ world; in some sort of bizarre sickly cult. Of course I hold no ill will against those who take comfort in these terms, it makes many feel they are ‘in it together’ – however for me it strips identity. I don’t ever want to be determined by my disease.  

4.       Getting a mountain of ‘Likes’.
We are but tiny specks on this massive planet, inevitably floating into oblivion, what does it matter how many ‘likes’ you get on Facebook/Instagram/your social media of choice? Give up seeking approval for every thought that enters your pretty head and try putting that energy into more productive activities. Did you notice I called you pretty there? LIKE.

5.       Things you didn’t achieve.
Look, unless you are a Time Lord you can’t go back in time, so stop mentally torturing yourself over what you haven’t accomplished in the past 12months/your life. Yes, a new year is ‘just another day’ – but it’s also an opportunity to clear away the cobwebs and put the past to bed. So do just that and focus on looking to the future and what you want to achieve.

6.       Seeking validation from others.
An inspirational mock-up Marilyn Monroe/Minion quote once said ‘The only opinion that matters is your own’. As with the previous advice of ceasing ‘like’-seeking, try to give up seeking approval from others. The more you aim for it the more addictive it becomes, and therefore the harder to give up. You have to find comfort in your own opinion – because you’ll never please everyone, but mainly because your opinion matters.

7.       Tolerating trolls.
The scourge of the internet – little boys/girls playing with their toys and getting so hot and bothered over a complete strangers comments they are left with no option but to call them names hidden behind their keyboard – the internet equivalent of pulling a schoolgirls pigtails.  It’s hard to know what the best way of dealing with these trolls is; do we pull them out of their caves into the light for the whole world to see or simply ignore them and eventually they’ll go away? I prefer to pay no attention to them (sometimes it’s easier said than done) – when they have no one to bat their nasty ball back, the game is lost.

8.       Wearing heels every day.
Nope. Have you ever seen a bunion?

9.       Desiring the ‘perfect’ body.
Such a thing doesn’t exist. So really you’re pinning all your hopes on the unachievable. ‘Perfect’ is different things to different people – don’t change yourself in order to attain a fruitless goal that will leave you miserable. Albeit attractively so.

10.   Feeling obligated to make plans.
You think; ‘I’d rather die than go to your baby shower/housewarming/all night rave/brunch date in artisan restaurant where they serve your steak on a shovel’. You say; ‘Oh absolutely! I can’t think of anything better! I wouldn’t miss it!’ Stop doing that. Just don’t go.

11.   Selfie shaming.
If you want to post a million and one selfies then go for it. You have a great pout! Just know that we all love you and want to help you deal with your insecurities, if that involves you selfie-ing yourself to ecstasy for a while that’s ok. Just don’t mock others for the same thing.

12.   Making a mountain out of Valentine's Day.
Why are you succumbing to the pressure of every advert/shop window in the country? If you want to do something romantic then do it – you don’t need a ‘day’ to show someone you care. If they forget that ‘special day’ who cares? Make him/her a cup of tea! Run them a bath! Throw a toaster in there, they’ll love it!

13.   Comparing your life to others. 
Stop it.

14.   Losing the What If’s
Move on and look to the present, and the future. It’s pointless and redundant trying to replay what you feel are missteps in your past, you’ll never know how things may have worked out if you’d taken the other sliding door and it frankly makes no difference on the here and now.

15.   Getting back ‘out there’. 
Yuck. The best moments normally happen by accident. Unplanned. Don’t feel you have to follow some imagined rule book in order to find happiness.

16.    People who are toxic for you.

You don’t need people in your life who make you unhappy, stressed, think less of yourself. It’s just not necessary. Stick like glue to the ones who show you care, make you feel happy and loved. Start the year as you mean to go on: feeling GOOD.

Tuesday, 8 December 2015

Every BODY Hurts, Sometimes

Everything” - was the am-dram response I gave earlier today to the question, “What hurts?” from a friend. It may sound dramatic and borderline bullshit, but at the time it was a frighteningly accurate description.
Allow me to set the scene: I’d eaten some lunch; nothing wild, no endangered species lathered in butter, no sizzling spicy concoctions. Just some chicken and some salad. Oh and a bit of potato too, but even then I only ate the inside, leaving the skin as I know it destroys me. So, a boring, but non-hazardous lunch – YOU WOULD THINK. But you’d be WRONG. And you can tell how serious I am because I AM USING CAPSLOCK.
Today ‘everything hurts’ is an accurate portrayal of how I am feeling. Boring lunch or no boring lunch.
My bones and muscles ache. My stomach is cramping and pained. My head is splitting. My eyes are itchy.
The list goes on. (But not here, and not right now, because I would like to retain at least some readers by the end of this post). The reason I’ve taken to my blog to electronically whine about all of this is because answering that question today and feeling like a drama queen stressed me out. It frustrated me that answering questions on my disease honestly, often has such dire consequences; even in my own head! I know I am not lying or bending the truth yet I can still feel like a fraud saying it out loud.
How is it possible to feel pain, and then feel shame when audibly expressing it? (I suppose ‘shame’ isn’t the right word; maybe frustration?) A feeling that happiness, and ‘normal’ conversation is thwarted by a constant nagging pain. Crohn’s is that annoying boy who used to pull on your bra strap, or that puddle you step in with suede shoes on. Always putting a dampener on daily life.
It’s possibly the raised eyebrows and the perceived doubt from others imposed upon us when we convey our illness. We look fine after all. I can’t even really blame people for this doubt; I sometimes look at myself in the mirror and even though internally I feel like Satan has set up home in my intestines, I still look a million dollars (well… maybe a tenner). That alone can have even the most diseased women doubting their symptoms. We learn to question our every twinge and hold off from seeking help because ‘it could be worse’ or ‘it has been worse’. But that can also be dangerous.

If we are struggling we should vocalise it. Not to doubt ourselves, or accept doubt from others, but to trust our gut. Even if it’s the gut causing all the drama in the first place. 

Thursday, 3 December 2015

Day 3: #7DaysOfIBD

Day 3:
Well firstly, It’s been an exciting few weeks for me, as I've recently signed a publishing contract for my first book! I am still in shock that it’s really happening. The pessimist in me is still waiting for it all to go wrong but I'm trying to live in the moment and ENJOY IT.
It’s on Crohn’s Disease and is designed around my own experiences. I hope it helps someone like me. I know I certainly would have benefited from something practical and light-hearted when I was diagnosed. Everything seemed so bleak and hopeless. I was bombarded with information (and worse, misinformation) and medical facts and figures that were impossible to take in. But nothing on how to cope day to day. After the initial shock of finding out what was wrong with me,I was still at a loss as to how to ‘live’ with my new disease. I'm hoping that my writing will help at least one person in the same situation.
But I'm not here to plug my book! (Which will be available in mid 2016 ;) ) I merely mention my news as it serves as the precursor to my update of the day. In my whirlwind of nervous excitement and celebration, Crohn’s has snuck up on me. I've been absolutely loaded with the cold for what seems like months now, and my immune system is at an all-time low due to my current Infliximab treatment.
I'm finding this week a struggle and am floored with exhaustion. But the light at the end of my colon is my good news. This is a rare occurrence and although in living with, and writing a book about my disease it’s been my every waking thought, it’s nice to sometimes forget. IBD makes that harder than you think. Almost impossible on days like today when I feel so tired of it all. 

I have to force myself to focus on the good in my life and rest where I can. I hope all of you are able to do the same today my friends! xox

Wednesday, 2 December 2015

Day 2: #7DaysOfIBD

Day 2: 
Woke up in a lorryload of pain today. My BF who is currently on holiday, offered to nurse me/do unmentionable things to me if I sacked work and stayed in bed. Unfortunately I am a sucker for punishment and don’t want us to lose our home and cats so grudgingly went to work instead. 
It’s going to be a hard day; excruciating pain at my desk makes it hard to concentrate on the job at hand and slapping on a smile is easier said than done. It can be practically impossible to grin through pain. You can't focus on little else. And don’t even start me on the fatigue! No amount of sleep is ever enough. So when your colleagues arrive and complain of how 'tired' they are, it can often be a major tolerance tester.
As with most days I’ll have my daily dose of ‘suggestions’ on how to best treat my disease. Before 9.30 yesterday I was suggested Manuka Honey and Aloe Vera. On both occasions I smiled and said “well if it works for you that’s great” then silently considered all the ways in which I would gut them and bury them under my patio if I could get away with it/had the stomach for it.
Being offered suggestions on what we should and shouldn’t do is a common aside in living with IBD. What we eat is watched and judged (“should you be eating that?”), how often we visit the bathroom is monitored (“you were away a while…”), how we look (“well you look ok…”), and how often we are unwell is pressed (“but you were sick last week…”). Those are just a few of the enquiries we encounter on an almost daily basis.
Some of these comments can come from loved ones though, and in almost all of these cases; said with care and concern. On the whole I try to remember that the majority of people proffering advice on my illness are doing it with good intentions and a good heart. I'll try to remember that later today when I'm water-boarding them with Manuka Honey.

Saturday, 31 October 2015

Write On, Write Aff

Here in Scotland a common phrase one may use when they are perhaps hungover, ill, or just generally looking an absolute mess, would be; “Whit a total write aff” 
[translation: ‘What a complete write off’: not currently fit for purpose]

In living with chronic illness you will find yourself feeling and looking like a ‘write aff’ more often than most. I've had a good few 'write-off' days recently. Those days where you find, thanks to illness, all your plans are out the window whether you like it or not. You are floored. Work is a mammoth undertaking; in fact much more than turning over in bed is nigh on impossible. Plans made are cancelled, friends and family are let-down and housework builds up around you faster than cat hair on a silk blouse. (Speaking from experience there obvs).

On my recent series of write-off days, I missed a day of work and spent around 3 full days in bed. Today though…I got out of bed! And even showered! I'll wait for the applause to die down then I'll continue. 
Celebrating small victories is a common aside in living with chronic illness. It may not seem much to praise ourselves for, but it’s important, as we spend so much of our time internally beating ourselves up for what we are missing out on or unable to do for ourselves and others. It’s incredibly frustrating being ill. So, SO many wasted hours. The guilt at missed work, the annoyance at letting those you love down, and the pain and misery experienced when riding the wave of debilitating symptoms.

What I've come to realise though, is that self-care is very important. No, I'm certainly not saying that knowing how vital it is to look after number 1 makes the guilt of missed work or cancelled plans any easier, because it doesn't. Mores the pity. However it’s the sensible thing to do. Always the most boring I know. 
The more in tune you become with your own body the more you know when something is wrong, and the more you know when it’s time to take a step back and let yourself rest. If you manage a little work, or complete a menial task then well done. Just don’t break yourself in two trying if you don’t have  to. 

Learning to take the time you need to recuperate will always be more important than doing the dishes or hoovering the carpet. Besides I've been "unable" to lift the hoover since my last operation, and I intend to ride that particular wave for at least another 12 months. As far as my other half is concerned, hoovering is a ‘write-aff’ ;)  

Wednesday, 7 October 2015

Crohn-er of a Lonely Heart

Sometimes I can't believe how much I love cats. I feel a painful pang in my chest at the mere idea that some cats might be lonely in the world. That some might have no one to give them treats while we watch CSI repeats together. No one to feed them half of their dinner then go hungry. I can't bear it. I can't even see those adverts about cats in need for my uncontrollable sobs. I love them.

But what does all this cat chat have to do with bowel disease I hear you cry. And well you may as I've gotten so sidetracked talking about wee cats that I'm not sure I remember myself... Ah yes. Loneliness.

The reality in living with a chronic illness is that there really is no amount of sugar-coating that can make the feelings of isolation easier to stomach. It can be hard to go through this alone. Relentless and utterly exhausting. Even if you are surrounded by loved ones it can still strike. They don't go through what you go through so essentially you are still 'alone'.

Chronic illness can change you: make you afraid and anxious, and too nervous to ask for help. But it doesn’t always have to change you for the worse – it can open your eyes to what you truly want out of life. Having the prospect of life taken from you encourages you to see things with a clarity most people aren’t afforded. You are lucky! You realise you aren’t shackled to those people who bring you down, or to a job you hate; and that it’s only you who can make the changes in your life to make it more than just ‘bearable’.

Being ill can be (and often is) your first thought when you wake and your last thought when you go to sleep. Not very romantic is it? It can overshadow anything seemingly good in your life, so it really is vital you both take the time you need to heal, and then try to live your life to its absolute fullest when you are well enough to do so. Otherwise what is the alternative? Giving yourself over to misery and loneliness? That’s not for me thank-you very much.

Reach out and ask for a friend when you need one. I for one have a lot of life still to live, and a love to give and I don’t intend to hold back. There are approximately 600 million cats in the world and I’ve only got a few decades worth of petting left in me. Time really is of the essence.

Saturday, 3 October 2015

Crohn Star

I feel great today. I feel ‘well’. And I’m not even being sarcastic.

I’ve had a rough few days; loaded with the cold and pestered by migraines and last night a spontaneous chicken korma got the better of me, leaving my stomach swollen to the size of a heavily pregnant, but surprisingly alluring, elephant.

Physically I’m still utterly exhausted. Constantly blowing my nose, coughing up my lungs, a kidney and a lasagne I ate in 1992, but I feel better.

In the past year I’ve been quite badly affected by anxiety and depression. I didn’t realise any of this until it was pointed out to me by people who are medically trained/have half a brain cell. It’s never been something I’d considered in the early days of my illness; that my head would misfire in the same way as my body does. But it happens. It happened to me. It’s happening to me.

For a while now, and much to my own chagrin, I’ve hated my body. I’ve tried to pretend it doesn’t matter to me that I’m scarred and bloated, that my skin is porcelain and speckled in syringe marks, but it does matter. Because although I don’t care if YOU don’t like it – I care that I don’t. It worries me when I begin to disgust myself, because it means my disease is winning.

I’m generally pretty positive, and try to maintain a positive outlook on my illness (and my appearance), but being diagnosed with depression made me sink lower into self-hatred. I felt worthless and pointless. I didn’t care about myself. I’d past the point of being pro-active and slipped into a version of browbeaten acceptance. Everything I’d written, about how to live despite your illness, seemed embarrassingly hypocritical – I wasn’t doing that so what gave me the right to profess the same to you?

So today I’m enjoying the fact that those feelings are at bay. I feel happy and confident and attractive. I feel loved and valued. And I value myself. I’m a few months into my anti-depression medication and a few months into my Infliximab treatment. I don’t know if I still feel ‘depressed’ – I suppose I do from time to time, as many of us do. But my treatment is working and my mood is lifting.

I don’t feel hopeless I feel hopeful.

I feel positive about the future and happy to have such incredible support, tangible and otherwise.  I hope you all feel great today too. If you don’t; you will. Remember, like eye-patch aficionado Gabrielle once said, ‘Dreams can come true’, and I know that’s accurate because Jon Hamm is now single.  

Wednesday, 23 September 2015

We Care A Lot

I don’t have a ‘carer’ as such. Not in the traditional sense anyway.

Many of us do. Many of us are unable to work, unable to dress ourselves, unable to ‘be’ without the help of another.

I have a full time job, and am physically fit and healthy enough (the majority of the time) to do pretty much everything for myself. I’m very lucky. I still have a chronic illness though. So at times I need to be cared for. Whether I like it or not, and I usually don’t like it one iota. 
I value my independence massively and when I am too unwell to do even the most basic of tasks and am forced to rely on people around me to pick up my slack, it grates. Big time.

My own ‘carers’ are wide and varied. 
My friends, my family, my love. 
They are self-appointed in this role, and like the superheroes they are they simply don their capes and fly into action whenever they are required. Thankfully they only wear their pants outside their tights indoors and for my own personal LOL’s. This care they offer me comes in what they do for me, both physically and mentally. They help me walk when I falter through pain, they hold my hair back when I’m sick, they make me eat when I don’t want to, they make me laugh when I think I never will, and they remind me life is worth living when I can’t see it for myself. They do all of this with such precision and ninja-like stealth that I’m sometimes sure there is some sort of co-ordination going on behind the scenes.

It’s often such a whirlwind from me being well to being the polar opposite that neither of us really notices we have fallen into the roles of patient and carer. But we do. It seems it’s all effortless on their part. We know it’s far from it.

They make me feel that I am worthy of love and care and that my illness is never a burden, although at my lowest ebb I usually feel like that excess baggage you have to pay over the odds just to get on the plane with you when you didn't really want to bring it in the first place or even go on this stupid holiday I don't know why we cant just go to the caravan its such a waste of money and the waiiiiiiting at the airport don't even get me started…OH MY GOD….

Caring for someone else isn’t easy. It’s exhausting, and a job that generally goes unappreciated or even unnoticed. That isn’t because we don’t appreciate you, or don’t notice what you do; it’s just that it’s normally after the event that we begin to realise what you’ve been doing for us. 
We are ill and miserable and require ‘care’ in the moment – we are generally too concerned with managing pain and sleeping and drifting into drug-induced oblivion to thank you for all you do.

So here I am, thanking you for all you do.  
We appreciate you! Please know that! 
I know we are difficult, and tiring and absolute NIGHTMARES from time to time, but we love you and are always incredibly grateful for your time and attention.  We care for you too. Always. Pants inside or outside your tights, you are my heroes.