ten thousand tablets later…


3 a day

21 a week

84 a month

1008 a year.

10,080 in ten years

So, if I carry on taking my small little 3 tablets a day of Azathiaprine, then potentially by the time I am abour 30 years old I will have taken over ten thousand tablets in just the last ten years alone. Adding to this any antibiotics I may have to take because of a reduced immune system from the medicine. And the normal like paracetemol. It both amazes and disgusts me.

I am amazed that modern science can remove the crippling pain that I felt for so long last year, I am disgusted that my body couldn’t sort it on its on. I am amazed that this is relatively new technology, and what else could be achieved in the future, I am disgusted that it was my body that failed to function properly on its own, I am amazed, but I am also disgusted.

I am lucky enough to be getting my treatment done privately, through private health care my dad receives with work; although I am only covered another 3 months until I turn 21..but I am still paying for all my medicines myself. Every time I go to get a prescription it is at least £8, and due to the changing medicine and the amount at which I get through them..I am going regurlarly. I don’t even want to think about how much that will add up to.

 

I was looking at the British Museum website for part of my studies, and found this exhibit:

https://www.britishmuseum.org/explore/highlights/highlight_objects/aoa/c/cradle_to_grave.aspx        called “From Cradle to Grave”,  about the number of tablets the average person has in a lifetime. It follow a male and female story. Both contain over 14,000 pills / tablets / lozenges etc – which doesn’t include the ones that we take over the counter. If so it would be about 40,000 pills each (according to the website). just re-read that number in your head, forty thousand. That is a huge, a ridiculous number. But for me, and others like me, that number will be oh so much higher. I will be taking 1/4 of that number in the next ten years of my life alone – and ontop of that many other potential pills -antibiotics, contraceptives , etc. That boggles my mind.

 

I am so grateful to live in a time when this medicine is available to help my body to cope, and to allow me to live once more a normal life. But I am also a little disappointed in myself, in my body, for not being able to cope. Why does it need THIS much help? Why couldn’t it just…well, work?! Regardless, it doesn’t and life goes on. But that number of pills in my body, each releasing a little something which affects how my body should naturally work…. I know I need them, but it feels a little weird.

 

Full of reflections today,

 

H x

 

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one month ago today


I might do a longer post later, I’m not sure.

But, 20/12/2013 I had my operation, one month ago today. I cant believe it, seems so long ago, another lifetime that I was waiting in that hospital ward holding my mums hand and watching the minute on the clock tick by and waiting, waiting. I remember waking up in recovery. I remember being given my morphine button. I remember getting wheeled back to my room – we had to go in a lift and the bed bumped in and out of the lift doors. I remember seeing my mum for the first time. I remember asking if I got a stoma bag. I remember it. But it feels so long ago.

 

Im nostalgic about it in a weird way I guess, I feel like a big thing that was in my life is over, in terms of the operation. A huge step in my life has been taken, forwards I hope; and of course I am glad, but it is a weird feeling. I hope that, in a weird selfish way, my scar remains visible for a while longer (which I know it will) but because I get caught in this weird place – one where I am stuck between not wanting people to treat me differently and treat me ill, but also wanting them to know I am ill (or was ill – hopefully its mainly in the past) and accept that fact when I have a bad day and not just think I am moaning. With the hospital and the surgery and the scar I was no longer in that place, I was accepted as having been ill and weaker and needing to recover, and I am not trying to say I want that, or need it in my life; but it felt good to have proof and to not be constantly trying to justify how I felt when I was down. Its the weirdest feeling, and one I never thought I would have, or struggle so much in expressing. It seems an almost childish desire in a way; a need to be recognised and supported with sympathy when I need it, but not to be pandered to when I don’t… is that possible? I hope to find that balance.

 

Maybe I wont need another post later…I hope that those ramblings make some sense to some of you, I never feel like I write in an eloquent fashion compared to many bloggers out there, but my aim is more to get honest thoughts and feelings out onto this space, as opposed to well written ones with good sentence structure!

 

One month can change a lifetime.

 

H x

Recovery Time


Turns out having surgery to remove part of your insides and getting stitched back together again is something you don’t bounce back from all that quickly..

From all the talk before hand about needing weeks to recover back to 100%, and having to miss my university exams in January and the deadlines for coursework that I have – I never really appreciated just how much it would affect my everyday life, I know, stupid, I had buried my head in the proverbial sand in an attempt to ignore the changes that were approaching in my life. After the operation I was in a very weak state, only what was to be expected in retrospect. As I described in my last post, https://livingmylifewithcrohns.wordpress.com/2013/12/30/the-operation-with-a-capital-o/, when I woke up I was hooked up to several different tubes running off into some scary looking machines; but at the time I was in too much of a morphine induced haze to care. I think in summary of the entire procedure I would say im surprised at how little the actual wound hurt me, but shocked at other issues (such as a sharp pain in my shoulders, that was apparently caused by the air pumped into me during the keyhole surgery which had not yet escaped) and how they affected me. In all honesty it was a little bit terrifying, I cannot remember having so little control over myself – an inability to even sit up and hold my own cup of water for the first day or so. Not something I want to repeat. I was lucky enough to have my parents stoically by my side doing everything from holding my hand constantly for the 5 hours they stayed, to sponging my mouth with water when I couldn’t drink, and sitting in a silent room bored watching TV whilst I slept – I don’t think I will ever have enough words to say thank you.

Anyway, this is due to be a general post about my recovery and the related activities- I am pleased to report that as of today (tomorrow will be two weeks since the surgery, and one week of being at home) I am feeling a lot more like a human being! I am managing to wear nice normal clothes again (a new dress from Christmas yay, with tights rolled right down so as not to press on my stomach) and managed to get driven into town to hobble to a coffee shop to chat with my friends; all of whom are sadly going back to university this week. Its official, I missed pretty much my entire Christmas break being dependent on my parents or in hospital and unable to leave the house, I am truly not impressed. Aside from that the eating is going really well, and feeling a lot more independent and happy that I may actually get my life back – something which seems a long way off on Christmas morning in a hospital bed! The day after I was discharged I was advised to have a bath to help remove the dressings and as a relax, which I duly did (do love a good bath!) and the wound started to bleed- HELP! It was only droplets at a time, but pretty steady and after no sign of it stopping we were advised to go to A and E. It turns out that they reassured me it was nothing but some “healthy bleeding” as the muscles etc had been cut through, and it wasn’t infected. They were all busy admiring my wound and saying what a beautiful scar it will turn out to be- I think you have to be a nurse to see it, I hate it! Aside from that, and 5 days on it is still bleeding a little bit, I have to have a foam plaster/ dressing on it all the time to stop it leaking onto my clothes, but I am hoping it is part of the healing process.

I think, and I rarely speak about myself like this, but I think a bit of self-congratulating is in order, both mentaly and physically. Well done body, you have taken less than 14 days (yes with some medicinal help) to get back into a semi-working order, something that has allowed me to be a person again not just a bundle of clothes unable to do anything for themselves. I am impressed and proud with how well I can walk – when I went to A and E when I got back, about the bleeding, they couldn’t believe how well I moved and that was nearly 6 days ago! yes, its slow walking, yes I cant walk far or for long, but I CAN walk. One week ago my biggest achievement was making it shuffling round the ward to the lift and down into the main entrance of the hospital, and now I am managing to function normally enough to get into town without attracting too much attention and to get around my three storied house all okay. GO BODY. Aside from that, I really don’t think I moaned too much about it all – I did let it get to me, and I am feeling the emotional strain from the operation and everything I missed; but I think that I coped well and have accepted what is happening as a force of nature and something this has to happen, no point crying about it. In the spirit of this paragraph I have to be honest, in the dark depths of my worst night in hospital (I think the Monday night?) I texted my parents asking them in the most ratinoal way possible to break into the hospital give me painkillers and smuggle me home because I was dying alone in the hospital and I had never been so miserable. Potentially a bit cruel on my parents, as I knew at the time they would have to say no, and then I got angry at their lack of care – how dare they not break me out?! Aside from that blip, I think I coped well and I got on with it, and still am so now. Even as all my friends head back to uni, and the partying, and the socialising, I am stuck here at home – but I am determined to make the most of it, enjoy the home cooked food and the family support.

I don’t feel the need to go into the details of all of my recovery – it would read as a boring and elongated medical diary to everyone out there; and I am hoping that more people will follow the blog, rather than bore people senseless! I had the catheter in for about 4 days, and when it was removed it was pretty scary – I suddenly felt like I wouldn’t be able to cope with controlling my own bladder; and although I was fine it reminded me just how fragile everything was, and how much I used to take basic bodily functions for granted. I had the cannulas switched to just one in my other hand as they became very sore, and slowly as the morphine usage reduced I had that removed too – I think on the Tuesday? I struggled quite a lot with sickness, but slowly that decreased as my water intake upped and I began to eat. It took me about 3 days of just on yoghurts, jellies and soups before I mangaged to eat without being sick – and I am talking about 3 or 4 mouthfuls as a meal, nothing really. On Christmas day my big meal and treat was a chocolate mousse, of which I managed to eat half – wild child! I had to keep forcing myself to eat little and often, and to go on walks around the ward which I tried to do at least twice a day, going further each time. By the point of leaving the hospital I managed to be able to walk for a reasonable distance, and could eat small mouthfuls of “normal” food without feeling sick. As of today I am pleased to report that (touch wood) the progress is constantly upwards, slowly but surely and I am determined to build myself back up as soon as I can.

I am sorry for the long and rambling posts. When I started this blog it was a way for me to track the physical and emotional challenges I am facing; in an attempt to increase awareness about Crohns and to come in contact with others in similar situations. Never did I expect that within the month so much would happen to me, and so many changes would occur, or that I would lose 15cm of my insides! Please, comment below or message me, I would love to have some feedback on the blog or on anything you guys are interested in; or general interest in terms of others experiences.

Keep Smiling, and a happy new year to you all!

H x