March 30th - Not coping.

You wouldn't think it would be that hard for someone to dial the carers sevices in order to get a card to say that they are a carer. If he was taken ill then emergency care would be put in place. His arguement being that my mum would be there --- well not if it was Friday evening or other time when mum is unable to look after me. Karl is here for a reason. I blackout therefore it is not safe for me to live on my own. I wonder why he is here though because the jobs that I'd expect out of him he can't/won't do because he seems too lazy.

It is not safe for me to handle a kitchen knife, boiling water, walk outside on my own --- because of my condition.

To be honest, since he has lived here, I feel like I am becoming more and more depressed. I don't have a choice though - I live here with Karl, or I move back to parents. I brought this place for a reason. Freedom. I want to be independent and hoped with that "little bit of help" that I could be. It is not much in help which I do need, I am more a less independent.

Karl seems to be like a very big immature child. I saw this post on facebook, I think it sums everything up pretty well in regards to him! (Although not married).

Anyway, Karl is refusing to phone up carers swindon because he doeen't want it being said on his g.p notes... bit confused as to why not because at the end of the day it's the G.P/Hospital who need his details as they would be the ones to take on note if he was taken ill. It goes onto the hospital system that he is a carer. He doesn't want it listed as he is living here. He even basically said what is the point of him living here.

 Yeh why is he here I wonder, because he creates more work for me, won't walk the dog with me and won't even supervise with cooking the meals. He won't even do stuff that involves using knife or kettle. 

I'm becoming more and more depressed living here. Sh*t being at my parents with no freedom what so ever was better than living with a slob like Karl.Welcome to the world of depression if this is how my life is going to be from now on, I would be better off dead because I hate this! I am becoming more and more depressed each day. I had hopes and dreams that being on my own and regaining my freedom I felt would achieve. Seriously, what adults wants to live with their parents at this age? I don't, I really don't, but my options seem to be very very limited. Once again, damn you illness for ruining my life!

March 29th - Living with a lazy pr*ck.

Ok, so Karl can manage to do some things, let the dog out last thing at night, cook the odd meal (about 1 in 20) and look after the rabbit. Help with the Garden IF and only IF you drop a LOT of hints for him to do so! Doesn't seem to have any self motivation to help unless asked.

He seems to expect people to ask if the need any help what so ever, rather than offering assistance to anyone. Seems a bit immature to me. Not long after moving in, his parents came over with a car full of Karls' belongings and Karl just watched them bringing it all from the car into the house without offering to help. Then 2 weeks afterwards his dad brought over about 30 shoe boxes full of items that Karl had packed and requested that his dad dropped off after work, once again Karl watched after his dad brought in all of the boxes and didn't offer to help. I did say to him afterwards, how come he never asked to help, to which he responded I didn't ask either.... not my stuff but his!!! To be honest, I wouldn't be surprised if as a child his parents unloaded the shopping from the car whilst he just went inside and did his own thing.

If there is one thing that my illness causes me, is fatigue, so doing housework does use energy and there is only so much energy I have.

So the other day he laughed about the fact my bedroom looked like a bomb had hit it. Well I've not had time to keep my bedroom tidy as I've been running around after him and his mess clearing the rest of the house tidy and trying to get it tidy. He doesn't even put the empty toilet rolls in the recycling box, which annoys me. Why leave a pile of 3+++ empty toilet rolls on the windowsill? He tends to use about one per day, even me being a Crohnie that is more then norm. Would it really take that much energy for him to put them in the recycling box? Simple little tasks like that which he's too much of a lazy f*cker to do just annoy me. Yes, it is starting to make me depressed the fact that I seem to have more housework to do than I can keep up with. When I was living on my own, it was only myself I had to clear up after, so that was much simpler and it meant I had extra time to tidy and improve the house. However, living with him when I have extra work to do, is just using up too much energy. 

I made a joke to Rosie before I went in --- "I bet you £10 Karl is asleep", surprise surprise, in bed fast asleep.

I had used the last bowl on Satuday morning, knowing that I'd be spending the weekend at mums therefore kind of expecting maybe he'd managed to switch it on over the weekend? No such luck. I hadn't switched the dishwasher on in the morning as having left early, I didn't want to leave the dishwasher on whilst the house was vacant. The dishwasher holds the same amount of plates/bowls as we actually have, so when we are out of dishes, then obviously there is only one thing to do!

This isn't the first time I've got extremely mad at him for being a lazy pr*ck and probably won't be the last. 

A few weeks ago I sent him a long message after having talked to some of my friends having been upset by feeling like a "slave". 

 This is the message I sent him on facebook a while back after he had said to me that I "don't do anything" despite the fact I'd spent the entire day doing things. It looks like even though he appologised and did for a while "attempt to help" he is back to old habits. Old habits certainly do die hard.

• Ok, so like you, I find it easier to write then talk, and obvious sometimes you aren't going to listen because your stubborn. Who is here as the carer? I don't do anything huh? I was cleaning the bathroom, vaccumed, got rid of cobwebs and cleaned kitchen from 7.30am (yes I was up that early) until 10 (when mum arrived) gardening from 10 until 2pm, maybe you didn't notice it was any cleaner because maybe my cleaning skills suck, but I did spend a long time sorting things out. Then took dog walk, knackered after all of that, so took a few mins off and then cooked dinner. Maybe in future I won't bother doing anything like that again... because obviously I don't do anything. Well sorry but if you look up Crohn's it will state that one of the biggest issues is Fatigue. So sorry I didn't put away one can and turn one light switch off, but there was YOUR dinner you didn't want to eat that I cooked still needing to be put in fridge - but too hot to do so!!! You can't put warm food in fridge!!! So yeh, I had to wait up in order to do that. Sometimes maybe some help without me having to ask for it with meals would be nice? Don't think I don't do anything; because every single day I do as much as I possibly can. I can't do as much as a normal person, because, my health does not allow me to. I push myself to the limits and do as much as I can every single day; some days I do more than others, some days I'm stuck in bed or on the sofa unable to do much. That is part of my health.
  Did I or did I not cook dinner? Think I have the entire week actually! Not to mention the washing up too. Seriously, handling hot pans and sharp knives with POTS and no supervision... do you think that's the wisest idea??? Before you ask, yes I have blacked out with a knife in my hand before and still can show the scar. No, blackouts don't just happen at night. That is the reason I need a carer... if such things were safe for me, then I'd be living on my own. POTS has put me in resus several times nearly killing me... it happens without warning. It can happen any time, any where. Yes, I know you work, but even supervision when cooking meals should be part of your job. Maybe you need to understand a bit more about my condition... and the real reason why I need someone here. You've seen me on the floor with the dog food everywhere... n that wasn't even late... if that had been boiling water or a knife in my hand???
  
  
   Anyway, so now we seem to be back to him not doing much and critising what I haven't done rather than seeing all of the stuff I have done. I seem to spend all day whilst he is working doing housework, which goes un-noticed. It would be nice if he could at least do a few simple tasks - if dishwasher is full, put it on; if it's all clean put it away. If the toilet roll is used, don't just put a new one in it's place, but put the old empty one in the recycling box. Offer to help if I appear to be struggling or busy doing something.
  
  I feel like my depression is starting to hit me again and it feels like the fact is because I am having to put up with simple little things like this which Karl is unable to do, despite being an adult. His parents may have let him get older and do so as he wished, but it seems that being an adult and actually becoming adult was something his parents maybe didn't see the need to teach him? His parents obviously didn't enforce a healthy diet on him, so many foods he has not tried because he seems to have spent his entire life eating nothing but pasta and rice (not even with any sauces). No surprises he is over weight and has already lost a huge amount since having lived with me.
  
  
  

March 23rd - Brothers birthday.

So today has been my brothers birthday. Where has the last year gone?

This year I kind of shocked my brother by being able to eat pretty much anything I wanted and ate things which he hasn't seen me eat for a couple of years!

I have a really bad cold that has just started today, I'm glad it started today and not in a weeks time! I have my infusion on the 2nd of April and I know they won't let me have my infusion if I have any sign of a cold or other illness!

We didn't do much for my brothers birthday in all honesty because I had a dentists appointment mid afternoon and dad had a doctors appointment in the morning. Maybe when the weather improves I can do some things with my brother, maybe go on a camping holiday or something fun? It is a shame neither of us can drive as it does limit what we can do.

February 21st - First geocaching since house move.

So it was more a less nice weather today, or at least it was when we set off for our dog walk. The dog needed a nice long walk, so I thought we could make it interesting and do some geo-caching in the process in order to find out some more walking areas and get to know the area a little bit better. When we turned into the end of our road, it suddenly started to hail - I'm just glad we were very near home as the hail was very heavy and all I can say is being pelted in the face by it, sure hurts a lot!

February 6th - What animal is Rosie?

Starting to think once again that Rosie is actually a human. She has developed a huge habit for watching T.V and hates it when people change the channel. She even sits upright just as though she was human!!!

January the 29th - One month in.

So, it seems that the dog has settled in very well. She has already found her new favourite spot in the house. --- On my bedroom windowsill. It's a big bay window, almost ideal for a reading spot, or in Rosie's case. The perfect area to sit/lie and wait to see who walks past, spy on the neighbors and keep an eye out for any intruders - including cats. The perfect Rosie spot, something tells me that my window shall always be the dogs from now on!!! To be honest, the windowsill is pretty high up and it's a fair distance away from my bed, so I am not sure how she actually does get up there and it'll be interesting to watch and try and find out her secret!

January the 16th - Pudsey in the making.

My dog starting dog dancing lessons today.

I felt that moving to a new area meant that I had to start at least one new interest and bonding with my dog seemed to be the perfect new way to do that.

"you put your left leg in, you put your left leg out"....   ok, so dog dancing isn't really like that, nor doing the waltz. Today being the first lesson was only really showing the teacher what my dog already knows  so that she knows where to progress from. The trainer is a lovely lady herself with a poodle. In-fact there are a couple of poodles in the class, so Rosie isn't alone on that side of things.

The dogs in the "advanced" class were doing some trotting, so I had a little go at that. It appears that Rosie is a dog who can trot well, however, being a big dog, she likes to have a fast pace, which I am not able to manage myself that well.

We will be going every Friday (providing both me and Rosie are well enough). I am sure this will be great fun and can't wait to learn lots of new moves and tricks with my lovely dog. 

January 10th. - Pain in the A*se.

Pain in the a*se --- a phrase commonly used amongst siblings and others. To many of my friends and myself, the phrase has a completely different and more real meaning. We know that phrase very well and just wish it would go and do one! Right now I have a great big pain in the a*se. I have been to the hospital since my surgery and have been informed that there is no reason of why I should still be in pain. Time will tell. I am mincing a lot as finding it pretty painful to walk. Maybe it is just the surgical operation healing itself, fingers crossed it heals pretty quickly as this is not a nice experience! I am also struggling to go to the toilet still.

January the 5th - Birds. Gardening.

Mum brought me some bird seed, nuts and fat balls for Christmas, so I put them out for the birds. Decided that the birds may as well get some food as it's pretty rough weather out there and no doubt they are hungry. Within a few seconds of putting the food out, a flock of birds came --- just shamefully, not the sort of birds I had expected, but instead what must have been at least 20 seaguls.

All I can say, is sometimes having a dog is a blessing, Rosie soon saw them off for me! Why on earth are there seagulls around here??? Crazy birds.... where are the cute little blue tits or robins?  I am NOT impressed with the birds here!!! Anyone would think that I lived near the sea. The fact is I am probably the furthest away from the sea that you can get!

I have spent a fair amount of time out in the garden, despite the winter weather. My mum has been helping me and we have removed a fair amount of weeds, it is looking a lot better then it did already, but still it looks like a mass of weeds to me! So much to do, will there ever be light at the end of the tunnel?

December the 29th - Move in day at long last.

So, today I am moving in to my bungalow. I have already unpacked a few boxes, dad has put in new floorboards and put a wardrobe in.

The garden is nothing but weeds and brambles! I kid you not! It will be a huge job to get the garden to look anything near nice, but that will be part of the fun of it!

December 19th - Exchanging house deeds.

I now officially own a new house - Swindon of all places.

A bungalow actually, 3 bedrooms, a short bus ride from the town center. A quiet part of Swindon with a few local good dog walks and not too far from my hospital! (Just in case).

Not much to say apart from the place is now officially mine. A lot of work to be done before I can actually move in because we have found out that the "damp patch" which the surveyor picked up on, is actually "damp - floorboards need to be totally ripped out" sort of issue! So lots of work to be done, then I can move in!

December the 9th / 16th - 2014 - Surgery, my biggest fear.

So following a week of constipation, yes great fun and a stomach ache which progressivly got worse, I made a trip to our local small hospital and told the on-call dr my symptoms and how I was not feeling well. She did what every single person does when you go to hospital and check the urine sample. As always when my crohns is bad, my urine sample came back testing positive for infection (for 4 different tests) So I was sent home with some antibiotics despite the pain being my back passage not my front passage which I had very clearly told her! You'd think with her having asked my medical history therefore knowing I had crohn's would have realised that it was not Urine related!

A trip to the G.P (who is also a surgeon) the following evening resulted in him putting his fingers where the sun doesn't shine and being anal probed. My G.P is the sort of G.P who actually does listen, he's great to be honest. He phoned up the hospital and told me that I'd need to go in now for emergency surgery as he had felt a "bigger than a tennis ball" sized peri-anal abcess.

As mentioned in a previous blog, surgery has always been my biggest fear. So when my G.P mentioned the word surgery, it was more than enough to break me down into tears. I've never had surgery before so was extremely terrified.

Upon arrival to hospital surgical ward (severe worst pain ever) I had to wait for 2 hours for any pain relief due to the fact that it was the doctors switch over time! Those were the most unbearable 2 hours in my life! I could not sit nor stand and actually ended up taking over the pre-admission examination bed! There should have been at least one doctor on who could have given pain relief, even mild like a paracetamol?


The following day, 6th of December I had my first ever surgical procedure.

 22 hours after my surgery (tennis ball sized perianal abcess) I was sent to discharge unit... Luckily the surgeon who operated was outside the ward and saw me with packed bags and asked what was happening. I told him how I was still in agony, had not been to the toilet. My G.P (who is also a surgeon) had told me it'd be suitable for me to be in for at least 4-5 days with relation to my heart condition and no knowledge on how a General Anaesthetic would affect me. So after huge discussion with the ward sister nurse and the surgeon I was kept in for further 5 days.

The following day they were sure I needed further surgery, so had me nil by mouth (fair enough), however a trauma happened so surgery was postponed (yes, fine with that). The following day, nil by mouth, then told no surgery actually needed, no examination etc needed either - so 2 days of no fluids/food for no reason - obvious with my heart condition where I need to maintain 7 liters and excess salt I was blacking out left right and center - therefore causing havoc for the nurses with me being unconscious on the floor!

I was never told anything about what to expect after the surgery, so when it came to the fact I passed a LOT of blood out of my backside, I had no idea that this was "normal" after the type of surgery I had just had!!! You think they'd tell you what had happened and what you would expect from such surgery. As a result of this amount of blood which I had no idea that it was actually normal, I was absolutely scared. Why hadn't I been told that blood following abcess removal was normal?

There have also been numerous confusions with my medications, my gastroenterologist says for me to go back onto the azathioprine now home and the infliximab.... yet the surgeon has told me to stay off them until my sugical review in 5 weeks time! The immunosuppresants caused the abcess in the first place! However, without the immunosuppresants I go into a flare. The Surgeon and the Gastroenterologist just don't seem to talk between themselves and I have no idea which one I am supposed to actually go with and listen to!!!

What chaos.... hmm my first ever surgery incident (been lucky so far) and now I seem to be even more worried about any further surgical procedures that may happen in the future.

Letter received on the 16th December from the doctor following my surgery -  so it appears it was my mother who had surgery and not myself? Weird...