Ace Husband

It's nearly the end of IV time and the past 12 days have not been the best, but neither have they been the worse. I was put on Aztreonam and Colomycin and my eyes have not gone sore at all, so it must be Tobramycin that is the culprit. However I have had terrible headaches, soreness in my joints and muscles and general lack of energy. However me being me decided that IVs were not going to ruin our plans to go to the Lake District last weekend so we loaded everything in the car and I was quite relieved I have an Astra as there was lots of stuff to take, and off we went. We did a short walk one day and that's about it, however I still came home feeling like a sack of crap which has continued all of this week. I'm still glad we went though as it was nice to get away, I love it in the Lakes, I love the views, fresh air and feeling of smallness.

I always convince myself that life is going to be normal when I'm on my IVs and this never happens. The reason for this is I forget all the little things that IVs do to you and how difficult and stressful it makes your day. One minute I can sleep for England, the next minute I can't sleep at all, things smell funny, I smell funny and as a result feel dirty, having thrush drives me insane, my skins itches, all my clothes feel tight and scratchy, getting washed is like a military operation due to a stupid needle in my arm, washing my hair is even worse, my dressing itches, my hands go dry from cleaning them so much and you guessed it...they itch, I have to plan everything to try fit my IVs in, I feel like I'm on another planet half of the time, my mouth feels like I'm hungover for the whole 2 weeks, I get daily headaches, my joints ache, I'm not hungry at all and feel sick...no wait now I want to eat a million chocolate bars, my sputum goes all thick from dehydration, it hurts to reach for the gear stick in the car because of my needle and lucky old me because I have hardly any energy to cope with any of these things.

Luckily I have an amazing husband because no-one else seems too bothered that I'm on IVs, people get so used to me been on them. Oh you're on your IVs again? Yep that's me, on my IVs again. Maybe people know I have Pete to help me so just keep out of it, I don't really know what I expect. Pete has got up every morning at 6am to prepare my IVs and put them on for me, some mornings I barely remember him doing them! He has also done my evening IVs and when we were in the lakes he did them all. He has helped me with my physio, has cooked tea most nights and taken Alfie out after work a few times. This is what being a CF partner or a partner of anyone with a disability involves and I really don't think they get enough credit, Pete doesn't have to put up with this like I do, he chooses to put up with it. My brother pointed out when we were in the Lakes that Pete does lots for me and yes he does. Pete lives with me and knows what makes me tired, what I can't manage, he understands my limits. On the hand hand he also knows what I am capable of, he knows that I'm not lazy (well maybe sometimes hehe) and I hate it when I useless. He doesn't rub it in my face or expect anything in return and it's taken him a long time to learn all these things, I sometimes worry one day he will have enough and leave me. I hate people that don't appreciate what they have and I know I am very lucky to have such a wonderful person in my life. He describes himself as 'a planner by day and carer by night!' I'm not sure if I like him labelling himself as my carer as I'm more to him than a patient! I know he isn't too serious though, I think he's a planner by day and an ace husband by night!

Pete is doing the great North Run today, sadly because I'm on my IVs it wasn't possible for me to go with him to cheer him on which is disappointing but he understands. I'll let you know how he does!

Here are some pictures from the Lakes

My Hero

Three years ago today I married the love of my life! I love him with every inch of my body and feel so lucky to have found such a caring, generous, gorgeous man to spend the rest of my life with! Here is a little video I made as to why I love my husband so much..!!

12 Weeks!

About two weeks ago I started to get a funny taste in my mouth and funny smell up my nose, and I knew my good patch was over. According to the physio I am not some kind of freak, its the infection I can taste and smell, I feel like i'm some kind of bloody sniffer dog that can detect infection! In addition to this I started to become more productive, I was getting dull pains in my lungs and I was starting to feel more tired.

I coughed my way through yoga and this man (apparently a GP) who has already commented on my cough to the yoga teacher and told her to tell me to take gavisgon came over to me afterwards and started telling me I have reflux and need to take some gavisgon before class. This annoyed me for two reasons, firstly, I do not like coughing infront of everyone and causing the yoga teacher to have to pause during her instructions because i'm so loud, so to have someone blatantly point out it's annoying is upsetting. Secondly, he has been told I have CF so why is he is insisting on interfering and trying to give me medical advice?! Even when I explained to him it was mucus on my chest he kept going on about reflux, I just wanted to yell 'leave me alone you annoying, interfering old man and mind your own business!', instead I just kind of ignored him after a while and walked off. I  was so annoyed I didn't go to yoga this Friday just gone, as clearly my coughing pisses people off.

On Sunday my friends and I did this modelling experience as my friend got us vouchers for Christmas last year. They do your hair and makeup and take photos of you. It was fun and we got some good photos, then we stayed in Manchester and went on a night out. I felt shocking the next day even though I had not drunk any alcohol and I only slept for 3 hours, I had toilet troubles and kept waking up sweating. Here are some photos from the shoot 

I had outpatients on Friday, my weight is down a little at 53.8kg so I was told to try put a bit more on by the dietician. She also confirmed after a lengthy description of my stools (always my favourite thing to do) that I was not taking enough enzymes which has probably contributed to my small weight loss and massive appetite. So stools wise.... pale, fluffy, large stools mean you are not taking enough enzymes, they do not have to be oily, orange, floaty and extremely smelly as I thought. Also going to the toilet five-six times a day is a sign too! I've hardly had any stomach pains though which is weird as i'd expect that if I wasn't digesting my food properly.

My fev1 is a steady 42% which is great and the physio thinks all the exercise I have been doing is helping this. The doctor wanted me to go on IVs though as I do feel as though i'm slipping and when I suggested going on oral Ciprofloxin I was informed one of the psuedomonas infections on my chest (I have two types of Psuedo on my lungs) is very resistant to most things including Ciprofloxin. So I agreed to go on IVs, blugh! I haven't had any since May so done well! So I am starting them tomorrow, i'm really going to try and keep up with the exercise though, it's just so difficult when your head feels all fuzzy and moving your body is like trudging through mud. 

On Saturday was my sister in laws hen night so I was out in Manchester again! We went in to town in a pink limousine, had chinese then went to the Birdcage. I have never seen so many women in one room and so many hen parties! I left at 11.30 with Pete's mum, Pete had gone to watch Man City with his Dad, so we were both staying at his parents. The next day we went to see some friends who recently had a baby and then had a meal at Pete's parents with all the clan over after going to have a look where my sister in law is getting married in a months time. I can't believe it is going to be Pete and I's three year wedding anniversary next week! Here are some pictures from the hen do, I have figured out how to do fancy things to photographs now to make me look better haha!

So today and I am exhausted and not really done much apart from take Alfie out for a short walk!

Pete is doing the Great North Run again in two weeks time and is only going to take sponsorship money if he beats his time from last year. He is going to donate the money to the CF Ward (Ward 6J, St James Hospital, Leeds) that look after me. Because of this there is no just giving page, if anyone would like to pledge to sponsor him please let me know either on here or facebook etc. We would both really appreciate it! He has some new trainers to hopefully run faster and is training ever so hard, he ran home from work last week! Thanks in advance!