April 3rd - Infusions.

Usually I look forward to my infusions. Infliximab is working great for me and the 6 week wait is certainly worth it.

11 o'clock appointments, a perfect time for me, not too early - I don't do early mornings. A two and half hour infusion, not too long, so should be plenty of time when I get back to walk the dog and do other things.

This time, 2 hours in the waiting room, then I was called in and told to take my infusion seat. A lady who arrived 1 hour later then me to the waiting room was called in at the same time and they set her infusion going within 10 minuets of her arrival. It wasn't for almost 2 hours after she had started her infusion that they started mine! My infusion time should have been before hers and was the exact same infusion, so no reason why mine should have been delayed or even done after hers was.

Oh well infusion done now! Didn't get back until 6pm. Shattered as always. Due to having been sat in a chair for the extra 4 hours, was unable to move my leg and was in agony - not sure if EDS is the reason for that. Something isn't right with my leg - think I need another appointment with the Rheumatologist, however I have been told I am no longer on his list and Swindon are no longer taking on new patients, so I'll have to travel up to Bath - not easy for a non driver, nor someone who finds traveling distances makes them feel very ill!

April 3rd - Grrr once again.

Mum sat us down on Monday for a long chat as I'd ended up crying to her on the phone about Karl.

Karl actually seemed very responsive to the chat and said he'd do more to help and so on. Sounded great.

However, Karl has proved once again he is all speak and no action - he complained earlier that the house was "a tip". I started tidying up and things so he walks away, so much for him saying it's a tip - I was thinking why should I be tidying it up on my own. So half hour of cleaning and I go check up on him where he says he'll do some in an hour, just because he had said it was a tip doesn't mean it had to be done there and then. So 3 hours later and he asks me how to clean the floor - I answered a mop... so he shouted at me for being sarcastic and stormed off like an immature kid. What else was I supposed to answer? Of course use a mop... if he wants he can always use a bloody toothbrush! Not sure why he saw that as sarcastic.

Another hour has passed and has he bothered to help clear up this "tip". No, obviously he is one of these guys who expects house work to be done as it is womans work!

I've swept floor, sorted out next load of washing, cleaned all the glass work on 3 doors, done the washing up from the meal he cooked yesterday (following my hospital infusion). I'm knackered already, I only had my infusion yesterday!!! Grrr Men!

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!!!