Yesterday I was changing Winnie and realised I only had two, yes just two, of my special skin sensitive changes (bags) for her!!! Eeek – cue total hysteria and emotional meltdown… multiple calls to the stoma nurse, and getting, rather frustratingly and unhelpfully, the answering machine (the very message saying they will call back always makes me mad, I don’t even know why). Luckily after about half-an-hour of stressing and pretty much pulling my hair out I suddenly remembered it was the ‘drop in’ session for the stoma nurse at the hospital. So, off I went, tail between my legs, ready to be told off for letting myself get so low on supplies – in my defence, I have boxes of the bags I’m allergic to, but hadn’t sorted them out, sooooo thought some of them contained the Manuka honey bags – Rooky mistake!
So I went and had a natter with the nurse and she found me some more of my special bags 🙂 RELIEF!! And then I made my way home in a AHEM taxi!! As you will all know (if you read these ramblings regularly) I have been avoiding cars like the plague since my operation, as the roads are a nightmare, and the bumpy, rollercoaster of a journey always sends Winnie into overdrive and makes me feel like my insides are being hacked open by a chainsaw. But, when it comes to hospital appointments, I have to give in, the hospital is simply too far away to walk at the moment, and, it was raining, so I could have melted! Why, you ask, am I telling you this? Well the taxi drive home turned into a lesson for the poor driver. He made the mistake of asking me quite innocently, and may I say nosely, whether I worked at the hospital…and when I said no, simply replying that I had had an appointment, he formed the immediate diagnosis in his head that I suffered from a bad back (which I do but lets forget that for the time being). I don’t know why he assumed that or came to that conclusion, but at that moment I thanked my lucky stars that he had decided to ferry people around for a living instead of taking a different career path – namely in the medical profession.
By the time the short journey was over (it must have taken 10 minutes in all), this unsuspecting poor man had basically had a crash course in living and treating Crohns Disease. He learnt about my operation, my recovery, the numerous needles I have had stabbed into me, tubes shoved where the sun doesn’t shine and all sorts of other intimate details of my condition that probably put him right off the half eaten KitKat Chunky left waiting on the passenger seat next to him pretty much screaming to be eaten. I know that with each word, each symptom I listed, and each lesson about how the illness is an
‘invisable disease’ but is ‘very real and very serious’, he was regretting asking whether I was an NHS employee or had a bad back, in fact he was probably wishing he had ignored the call altogether and sat finishing his chocolaty snack parked-up at the back of a disused pub somewhere….£5.50 was simply not enough for this kind of crap (no pun intended)! I think that cab ride taught that poor driver the consequences of being a nosey Parker and asking intimate questions from someone, who quite frankly just wanted a ride home and was paying an extortionate fee for the pleasure. I welcome chit-chat in taxis, but asking someone what they have had done, well, he had it coming…and in my tales and stories I managed to educate one more person in this massive world about IBD, Crohns and Colitis!!! Result!!
In other news… I met my former housemate today to go shopping for a handbag for the girly outing to the Races tomorrow. I was facing a massive dilemma, and had been worrying about it again and again for the past few days leading up to the shopping trip. All of the bags I had seen were so pretty I could have eaten them, but all of them were simply too small to fit all of Winnie’s accessories and changes for if, heaven help us, she decided to have the mother of all strops in the middle of the race course. I just know this is going to happen. Things have been going far too smoothly so far, and I am starting to fear that Winnie is saving her first ever major tantrum for a day like tomorrow. It is the calm before the storm. She is, I am almost 100% sure of it, waiting and plotting for the moment when I am dressed-up to the nines, wearing fake-tan, and surrounded by thousands of heavily made up and tangoed women who will all want to plaster their layers of paintwork onto their faces creating queues around the block…then, and only then, when I am helpless and unaware, will she strike, throw a wobbly and cause my whole world and trust in her to completely fall apart. AND THAT DAY WILL BE AT THE RACES, I JUST KNOW IT!!! Hence why I need to take her changes of outfits with me….and all the lovely and suitable bags are just too small 😦 fashion is not, as many men believe, catered for those who wish to cart around the kitchen sink – or in my case an ostomy changing bag!!
So I walked around Primark feeling dejected and holding my bulging blue changing bag up to each of the gorgeous petite bags,
sighing with disapointment as each was just not quite big enough, or was far too big, for me to fit it in along with all the other essentials, keys, money, phone and all the makeup in the world etc….I did as you will see from the thousands of pictures we will take tomorrow actually find one 🙂 Eventually…so that was a small victory for me and, I like to think, all the fashion frustrated ostomates out there who love their bags but can’t find a bag that loves their bag back (hmm confused myself there I think!!!)
Anyway, embarrassing moment of the day and a tip to all you ladies with ostomys. NEVER EVER wear a floaty skirt in the wind. Twice in the past two days I have left the house almost skipping down the road with excitement about buying new nail varnish, meeting a friend (etc) when SHOCK HORROR my pretty summer skirt has been caught in a gust of wind and I have flashed at unsuspecting passers-by. You might be thinking #LOL (if this has never happened to you) but #OMG if you have suffered from a Marilyn Monroe style public humiliation in the past. The first time it happened, on Thursday, my skirt lifted in the middle of a packed high street and I flashed my giant ostomy knickers to the old men sitting waiting patiently at the bus stop. At this point I have to thank the Lord that I was wearing my NHS prescription knickers, as, if not, Winnie would have been exposed like a blushing bride to the whole world – and, I think one of the old men would have had a heart attack!! The second time occurred moments after I had left the house, the evil wind struck again, this time lifting my long floaty maxi skirt, exposing my white Bridget Jones’ style panties to a bus load of shoppers innocently making their way into town – oh! and I shouldn’t forget several burly builders #theSHAME!!!
I am sure you will all be delighted to know that I took my final last blue pill of evil yesterday (antibiotics) and already feel like my body has breathed a visible sigh of relief. I am, at last, feeling like I am starting to emerge out of the yuckiness (sorry know this isn’t English) of the last few days and feel like I am finally escaping the snare-like grips of the snotty-nosed flu, which left me feeling like a marshmallow had been impregnated in my brain, leaving it hard to think for long enough to even watch Hollyhoaks – yes, shoot me I watch Hollyhoaks, it is my not so secret guilty pleasure, and I am proud to say I have met half the cast, and sickeningly they are really that pretty in real life 😦 (Back down green-eyed monster!!!)
Well I say I’m feeling incredibly better, I feel a little bit rough and worried that as I have shaken off one disgusting flu-style bug I am rapidly coming down with another. One of the cruelest things about this evil disease (Crohns and Colitis) is the way it batters your body down with its constant bouts of crippling pain, diarrhea, blood loss, weight loss and debilitating fatigue, leaving sufferers with so little energy some days it can be hard to lift a glass or pick up a knife and fork. But then, as if the pain, accidents, and insomnia weren’t enough, we are left without any defence systems, our force fields are destroyed and we are left totally susceptible to every tiny bug that happens to be sneezed or coughed within a mile of us – so, if you see me physically wince in pain when you don’t cover your month when you sneeze, or wash your hands when you have been to the loo, it’s because you are condemning my beaten body to a final act of torment, it quite simply has not got an ounce of energy left to fight.
The medication we are given to help our body control the flares of Crohns/UC and the bucket loads of painkillers hardly help. In fact the majority of drugs that have been infused, injected, popped and, on more occasions than I would like to admit, been forced up my blushing backside, actually help these bugs to attack our body. Many of the drugs are classed under the category of Immunosuppressant – the clue is in the name…the drug may as well be a waving a sign over our bodies reading “come on in meningitis, flu, pneumonia, conjunctivitis – this one is an open house”…
I had a very restless night last night, which is not unusual, but it doesn’t stop it being frustrating. I usually only grab on average,
and only if I’m lucky, around four hours unbroken sleep a night and six hours total shut-eye. But last night was worse than most as I kept waking up every two hours with my skin itching like millions of little bugs were having relay races up and down my legs. My mistake had been trying to celebrate after a very successful meeting regarding problems with our flats and landlord. I won’t go into it here as it will bore you all to tears, and, quite frankly I am bored of talking or even thinking about it, but the long and short of it is we live in ‘affordable housing’ new builds and we have a wealth of problems with our apartments and a serious nightmare communication problem with the landlords which are meant to be acting on our behalf. Anyway, anyway, anyway…after months of trying to get the landlords to meet with us, we (that’s me and the rest of the residents’ committee) managed to have a sit down, face to face, meeting with them last night to discuss all the problems and try to get them to make all sorts of promises – yes I did almost pinch the reps to check they were real and we weren’t all dreaming!! So after a rather successful meeting I threw all caution to the wind and thought WHAT THE HECK I WILL GO TO THE PUB WITH THE OTHERS!! I did have a little internal argument with myself, as my body still hazily remembered the first alcohol related incident following the birth of Winnie, where I suffered a crippling hangover, unrelenting sickness and dizziness, for daring to think I could sip a small glass of vino at my boyfriend’s BBQ after more than two months of not even smelling booze– big mistake.
So last night I indulged in a small glass of wine – crazy times yeh!! You will all know by now (that is if anyone reads this regularly – Hi Mum!) that I am no wild child, I wouldn’t describe myself as a live life by the string of her pants kind of girl. Sometimes I do unexpected, ridiculous and quite frankly stupid things, often when alcohol is involved, but I have learnt in my many years of wisdom (#LOL) that most times that I think Why not, or What the heck, mean waking up several hours later with mascara all down my face and dozens of embarrassing pictures of me miraculously appearing all over every social networking site for the whole world to see my moment of weakness, tipsyness or me trying to dance like Beyoncé or thinking I can do the perfect Vietnamese Waltz in the middle of the local nightclub and falling flat on my face (yep that has happened #hangheadinshame)!! And, that’s despite me being almost 100% sure that none of my friends took a camera out with them (ahh but you are forgetting the dreaded camera phone!! Like living a life being surrounded by constant paps).
Anyway so even when I was at the bar last night I was still umming and ahhing about whether to have a wine or a lemonade. So
in the end I panicked and said “White wine and lemonade please”, before shouting across “small please, and nice wine to, none of the heartburn inducing stuff”…ok, I didn’t actually say that but I did say I wanted the nice stuff, which actually ended up being pointless as it still tasted like I was drinking stomach acid. So it took an hour for me to sip down this glass of wine…to put this into perspective it used to take about two seconds like natter natter natter GULP natter natter natter GULP…gone!! (I’m not an alcoholic just a fast, and may I add sensible (amount wise) drinker #tinieweeniewhitelie). Now I feel like I am drinking paint stripper or poison, which obviously is making it difficult for me to enjoy the wine which I used to soooo love. Anyway I walked the short distance back to the flat, stumbling a little in the business like (take my seriously or else) high heels, which having lived in slippers and flats for the last three months I was finding incredibly hard to walk in before the alcohol, let alone afterwards. I am ashamed to say I stumbled a few times, tottered into a fence and almost fell on my face – thank the lord that didn’t happen as I would surely have squashed Winnie and landed back up in hospital – imagine the shame ending up in A&E after falling down a manhole after one small glass of wine…can imagine all the nurses sniggering at how much of a cheap date and lightweight I was.
Anyway, what was I writing about before I went off on this tangent? Oh yes, I woke up this morning after sitting up most the
night reading My Family and Other Animals by Clare Balding for the read 50 autobiographies part of my challenge…which by the way is hilarious and is making me, yes me, start to want to ride a horse, which is actually a big deal as I have had a secret fear of the creature since my gran (who looked like the Queen) got rudely kicked by one – she was, in fairness to the horse, invading its personal space. So I woke up with a throat which felt like it had been attacked with rusty razor blades during the night, puffy red eyes and hair sticking up like Sonic the Hedgehog. Horrendously unfair for the amount of the poison I actually consumed last night. I also woke up hungry, which is pretty much an alien feeling to me and had to down an Ensure (yuck) and force down some Rice Krispies to stop myself feeling this horrible feeling, which, I must add was making me feel cranky and rotten!
Obviously I am feeling much better now, but still worried about this weird dizziness I am continuing to suffer from. It’s a little unnerving and scary to tell you the truth, making me feel like I’m seeing the world through someone else’s eyes, an out-of-body experience of sorts you could say, and I don’t mean in a good tripping out sort of way kids 🙂 I promise if it continues I will get it checked out (yeh yeh I hear you say…I WILL)…but, for now, nothing is going to ruin my amazing day at the Races with the girls. Not Winnie having a paddy, not bad hair (well not anymore now I have had my hair done), not makeup malfunctions (not on my watch) and not typical English weather, which knowing my look will see a freak blizzard descend in a bubble around the racecourse at the very moment we step outside. I am DETERMINED to have a good time and not to worry about Winnie – but, we all know, I will!!
Anyway, if your still reading this….CONGRATULATIONS you made it to the end, but I’m afraid there is no prize, apart from these pictures of my amazing new haircut 🙂 Please keep your fingers crossed for good weather for me and Winnie tomorrow, and for a winning streak on the horses (for me, no one else) 🙂 I will let you know if I win big and some of the money will go to Crohns and Colitis UK, but the chances of that happening are tinie weenie as I am only placing £2 on each race – Crazy times eh??