Well, on top of everything I have come down with a stinking cold, thanks to my wonderful boyfriend!...
My throat feels like I have swallowed razor blades, I have gone through a whole loo roll, blowing my nose, in less than 12 hours and I have a temperarute. Safe to say I am feeling pretty awful. The problem with having an IBD and the medication you are often put on, is that your immune system is shot. I am actually on drugs called "immunosuppressants" which says it all huh! This not only means that I catch everything going but also that when I catch a common cold or bug it can turn nasty much quicker. A cold which has made Matt feel pretty rotten for a couple of days could knock me for six for double the amount of time. Lovely jubly!
Having to constantly blow my nose, cough and sneeze is also proving very painful for poor Margaret, I am scared I am going to do some damage to her but I am hoping she is a bit stronger than that!
This bug has meant that I have had to cancel seeing my friends, which I am gutted about.
I was recently asked by an anonymous reader, what my thoughts and experiences were with managing my disease with diet. Obviously being a bowel disease, diet is a very important factor. However, I personally do not believe it can cure or treat the disease on its own. If this were possible, I would obviously be doing it and Drs would be promoting it. Instead, my Drs have barely touched on my diet and I have never been referred to a nutritionist. I have noticed that what I eat can effect the severity of symptoms, for me this mainly comes down to lactose, but I have found that once out of my system it goes no further. I do believe that food and diet is important but only alongside traditional medicine. By eating the wrong things, I aggravate my symptoms rather than cause them, which is a big difference. This does however mean that at times I will treat myself to naughty foods, some people choose not to do this, but for me I believe you only live once and sometimes a few stomach cramps or a difficult night is worth it - especially knowing that it won't cause me any lasting damage - as I said, I love my food!
Of course, this is only my experience and others may disagree. Over time I may change my mind and start cutting out foods completely, or focus more on diet, but right now I have found a way that suits me.
A few days ago I stumbled across a fellow IBD sufferers blog, her name is Sara Ringer and she is American. She has been through a lot with this disease and still remains positive and vlogs her experiences with an IBD. Whilst reading through her posts I came across a section which captured my thoughts perfectly. This pin points my thoughts when people ask if I am feeling better...
"There is no better because there is no cure. There are just varying degrees of how bad it is and when it's less bad than normal then to me that's good. We have to adjust to what is normal, or good, or healthy because to the average public they'd never be able to put up with what I go through daily"
http://www.inflamed-and-untamed.com/
When I am asked if I am better, I never know what to reply.
"Yes, today, right now I feel better than I did yesterday but next week or tomorrow or tonight I might be feeling worse again. It is not a steady journey of getting better, I have set backs and good days and bad days. Yes, I feel better than I have done but am I better no, my 'better' symptoms are your "ill off work". I am still in some pain or am exhausted even on my 'better' days."
But you can't really say that to everyone, I think their jaws would hit the floor. I know they only mean well and it is the right thing to ask someone who you know has been poorly. It is just a hard thing to answer. It doesn't help that Crohn's is a hidden disease. From the outside I can put on a brave face, slap on a smile and nobody would know that I was suffering. This means that it is very easy for people to forget I am sick, and that actually it is pretty bloody awful. I thin for many it is a strange concept that I don't just 'get better', they can't get their heads around it and can't possibly imagine being un well, every day, for months of even years at a time.
Last night we, along with 1699 other homes, had a power cut. Like a little kid I found this strangely exciting until I realised that meant no internet and that my programs wouldn't be recorded.
Matt and Dads reaction was to go to sleep, which left me awake and bored and darkness set in. It was then that it dawned on me, I would have to sort Margaret out in the dark. I prayed that the electricity would return in time but I soon realised it wasn't going to and I had to face emptying and cleaning the bag in near pitch black, with not even a street lamp for guidance. For months I have had a flashlight app on my phone for times like these, but on Wednesday I deleted it, always the way!
I managed to do the whole thing, in the dark, on my own! I am very proud of myself. Things could have gone so much worse, I dread to think.
We also have a strange blip in our back up alarm system which means that when the electricity goes off, so does the alarm, for 20 minutes. Luckily, it only sounds from the outside, which for us inside isn't too bad but our neighbours aren't too happy. The alarm also sounds when the electricity goes back on, which in this instance was at midnight! Thank god, we got the code to work!
Last night it was also my brothers prom!
Doesn't he look smart! I felt like a proud sister, and even went with my mum to drop him off at his friends house, where they were all hopping on a London double decker red bus to arrive in style. I mainly went so I could be very nosy and look at all the girls dresses!
I will leave you with the newest bunch of flowers, these are from my Auntie and Uncle and are gorgeous, they came with a lovely vase too - which I am so happy with! They are so pretty and arrived in a HUGE box!
Lots of love
XXX
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