The Master Key

Hi Guys!

I seem to be having a bit of a roller coaster of a time since coming out of hospital. It is now just over two weeks since the day of my op and it constantly feels like two steps forward, one step back but I am told this is normal. But, with every negative thing that happens there are lots of positives.
Many new packages have been flying through my door, which makes me very excited!

In these are lots of lovely samples of many different products, I am very excited to test these all out but one company also sent me the most exciting freebie I have ever received. I couldn't quite believe it when I got it!

But this, ladies and gentlemen, is a master key to 9,000 disabled pubic toilets around the UK!! I now have access to most locked loos in public places which is so cool! I felt like I have been allowed in to some secret, underground club that only 'the chosen ones' are allowed in to. Matt of course ruined this idea by telling me they are given to disabled people or people with an IBD and can be purchased for £3. Well that was my bubble burst!
This however, has highlighted a slight issue that I haven't mentioned before.
I hate public toilets.
Now I am sure most people don't exactly 'like' them, but I truly hate them, in fact I do not use them. I will hold on for dear life, until I am ready to pass out, rather than use a public loo. This includes toilets in restaurants, shopping centres, public places, uni and bars. I hate how un clean they are. There are only three toilets which I actually feel comfortably relaxed using, these are my own at home, Matts house and my best friend Beckys house.
I had to get over this little issue when sharing a bathroom in hospital, but even that was a struggle. Now, what is ironic is that as a person with a bowel disease, public toilets are often needed a lot more than normal and now, as a person with an ostomy, they will no doubt have to be used! Of course this hatred is probably very un healthy and something I am definitely going to need to get over ASAP.

*Whilst on this topic I would just like to say that the toilets at Wembley Stadium were so clean, I was impressed so if anyone is reading this from Wembley - good job!

I also ventured out the house recently for a very cheeky trip to Nandos. I haven't had one in ages and was dying for some lovely chicken, the nurses told me to eat what I crave - as if I needed any excuse, so off we went! I ordered my food, settled down and it suddenly dawned on me, Margaret has yet to have spicy... It was obviously too late at this point to back out and I did think
'Sod it Margaret, ya just gonna have to live with it'.

Very subtle picture in the restaurant. 

We ordered way too much food

Now I can tell you that grumpy old Margaret was not impressed with my choice in spicy lunch and did play up later on that day. I am learning that she really doesn't like some foods, some of them I can live without eating and won't really miss, the hassle she causes me out weighs the taste (eg. baked beans), other foods she is just going to have to get her head around as there is no way I am giving them up (eg. tomatoes & Nandos).
I have in fact starting writing one of my lists with good and bad foods. With the amount I eat it is hard to keep track!

Matt and I have also continued on our walks to the garage, something which I never imagined would be part of our evening routine. We pick up some treats, sweets or ice lollies and wander back. The walk is yet to get any easier and I do return really tired, which is frankly ridiculous given what a short distance it is. The exercise I am told is great and keeping on moving will only help me get better quicker, shame Margaret doesn't agree.

With all of this good and positive news I feel bad to have to put a downer on things and tell you some of the not so great stuff! First of all my knee has once again decided to play up, I couldn't tell you why but last night it had stiffened up to the point where I could not bend it past 90 degrees and couldn't straighten it fully. I didn't pay much attention to the knee itself as it was 2am and I was trying to sleep, Daniel then arrived with a hot water bottle for my achey back (what a life saver!).
It was then that we both noticed that it had in fact swelled up again and was quite noticeably bigger than my right knee.
I caked it in my anti inflammatory cream to try and bring down the swelling and continued trying to move it as much as possible. I am so gutted that this has happened but hoping its only a little blip and I have nipped it in the bud before it really gets out of hand. The night continued to be pretty rubbish!  

I am still in on going pain with Margaret, I wish it would ease up as it really is dragging me down. In the day time I distract myself or force others to but at night it is really dreadful. There isn't much worse than lying awake at 4am, having not slept a wink, with pain in countless different places. Some nights are worse than others, with last night being one of the worst. My stomach and back were aching, my knee hurt and Margaret was gurgling and causing me so much pain. By 4am I really had had enough!

It isn't helped by the fact that even if I do drop off to sleep, I have to wake up in the night to sort Margaret out. I can tell you now, it is very hard to remain positive when you are stuck like this, there are moments where I want to burst in to tears and rip the bag off and just pretend to be 'normal'. I can't sleep in a comfy position because the bag gets in the way and leaning on Margaret is way too painful.

I am very aware of the fact that I am probably boring my family and Matt to death with Margaret and my illness, I hate that this has been going on so long and feel like the biggest burden to them all. I hate that every time they ask how I am, my reply remains the same. I don't mean to always be talking about it but right now this is all my life is. This is huge.
I am desperate to start feeling better so that I can get on with my life. Around me everyone is getting on with theirs, Mum and Dad are back to working, Dan has just finished his GCSES, Sean is off on holiday and in the middle of Uni and Matt is busy establishing his own business. My friends are graduating, getting jobs and going out. I on the other hand am stuck. The world keeps on turning and I feel like I am being left behind. I feel like all I talk about is the pain, the Crohn's and Margaret, without realising this illness has truly taken over my life and I hate it. I am so determined to get myself back and to move on from this absolute, god awful time in my life. The future terrifies me, I hate the unknown and after what I have been through in the past year uncertainty makes me very nervous but I know that if I can survive what I have been through already, everything else will be okay. Crohn's has taken enough of my life and I won't let it take any more.

My job now is to take it all one minute, hour, day, week at a time.
Right now I am just praying my knee doesn't get any worse and that the pain starts to subside so I can walk a bit further, sleep a bit better and be out of the house for more than two hours.
I will leave you guys with a snapshot of a lovely mention I had by a fellow stoma owner, Rachel aka @TheStomaBagLady. She tweets, blogs and vlogs herself and in a recent vlog mentioned my twitter handle! Lovely jubly!

Lots of love
xxx