Parking and Walking

Well our boiler is fixed and we have heating in our bedroom, wahoo!

I haven't been up to much really, I'm trying to go to yoga twice a week as I can't seem to be able to force myself to go swimming when it's cold! The usual has happened at the gym, it gets cold and snows and everyone parks in the disabled bays! So when I went last Monday the only spaces left were ones right at the back of the carpark, so I parked right in front of the entrance, halfway on the pavement. They clearly have no intention of doing anything about people parking in the spaces, so I shall park there from now on if necessary.

I started my voluntary work again on Friday and have a new mentee, she seems nice and I'm meeting her again in two weeks. We were chatting for about two hours!

On Friday Pete and I met my brother and his girlfriend for a few drinks at the pub, I got to drive Pete's car for the first time since he got it as I was the designated driver for the evening. Pete thinks his car is better than mine because it's a BMW, well now it's snowing we will see who has the better car since his is a rear wheel drive and was sliding around on our road yesterday, he is working form home today which means I have to put up with him haha.

We went for a meal yesterday for late lunch/early tea. It started to snow again whilst we were driving around and we did consider going back home, however we were too hungry! We had to park near the restaurant as obviously I cannot walk far at all in this type of weather, we literally parked less than five minutes away and on the way back I was coughing really hard. So we parked on double yellow as with a disabled badge you can park on double yellow as long as your car isn't causing an obstruction which is wasn't as far as we could tell. When we got back, we had a parking fine!! A ticket officer was walking past so Pete queried the ticket, the man said there was yellow lines on the pavement which means nobody can park there, I know this and if we had seen them we wouldn't have parked there but they were completely covered in snow! The ticket man said if we took photos and sent an email we would get the ticket removed (he hadn't issued it so couldn't remove it), so fingers crossed it gets cancelled!

Sometimes I wonder why everyone seems to make parking so difficult for people with disabilities, do people think disabled people disappear in winter so their spaces are available for others to use, or that we can see things through the snow? Perhaps I shouldn't be trying to have a normal life and stay inside all winter. All I want to do is go to yoga or go for meal without having to walk far and end up coughing my guts up!

I imagine a few people wonder why I can't walk far from my car but then I can take Alfie for a walk. So let me explain........ When I take Alfie for a walk I wrap up really warm, I even put tights under my jeans and wear thermal socks etc. I do cough at first because of the temperature change, but I'm expecting it, I am prepared and I accept it as I'm going for a walk and I know in the long run it's good for me to get the exercise. Afterwards I come home, get a warm drink and sit down and recover.
When I'm out and about doing the things I do, I'm not wrapped up as well, I'm constantly going into different temperatures so my chest can't adjust. I can't recover and it's not nice to be constantly having a coughing fit and people looking at me and commenting on my cough.
Think of it like this - people go to the gym and jog for half an hour on the treadmill, but they wouldn't want to jog everywhere would they? Well walking Alfie is my jogging, but I don't want to be 'jogging' all the time do I?!

Hello Good Week?

Well last week turned out to be a pretty horrible week really!
We already had the problem with the damp and the boiler and now I seem to have lost my sat nav! No idea how, but I usually keep it in the car, went to get it out and it's gone! I've looked everywhere I can think of and it's nowhere to be seen! I haven't left it in the Mini, as I've used it since then so who knows where it is!
The boiler is definitely broken, luckily a friend of a friend is fixing it for us, it needs a new valve or something. They were going to fix it on Sunday but had the wrong part, so now it will be getting fixed on Wednesday. In the meantime we just have to keep topping up the pres sue when it falls below 0.5 which is happening about 3 times a day now. Also they are going to sort out the radiator in the bedroom hopefully as it has never worked since we moved in, heat in the bedroom! Wahoo! Going up the world...!
My brothers friend came to look at the damp on the wall and he thinks its nothing serious and needs to do some pointing on the wall outside, so he is going to get back to us.
So fingers crossed, we won't end up shelling out loads of money to get things fixed which is a huge relief!

On Friday night I had to take a sleeping tablet as I just needed to get some sleep! They are some tablets my CF team gave me ages ago and I never took them. Sleeping tablets are quite addictive and not good for people with breathing difficulties so they don't like you to take them really. I'd never get some over the counter ones as I don't know what I can and can't take. Anyway it helped me sleep and I only woke up about twice, compared to about 10 times and then it taking me about 2 hours to fall back asleep each time or not falling back asleep at all! I can't understand why I have become such a bad sleeper, I used to be the opposite and sleep all the time and quite deeply, now the slightest noise wakes me and I just can't nod off. On Saturday I was tempted to take another tablet but I didn't and I managed to sleep quite well last night, so hopefully things are improving. Laying awake in bed for hours makes you so miserable, then the next day you are so tired, it makes no sense!

Yesterday I didn't feel too well, my whole body ached and my sputum tasted horrible which meant it was affected my taste buds and I just didn't fancy any foods. I make a skandishake and the stupid stuff sprayed everywhere so then I had a strop! We did manage to take Alfie for a walk but ended up getting takeaway rather than cooking a risotto which is what was planned. Today I feel better so hopefully it was just the end to a bad week and today will be the start of a good week!

Oh there is one piece if good news, I finally have my flu jab booked for the 1st December! Miracles do happen! Also I got my first delivery of Christmas presents that I ordered last week, I tend to try do most of my shopping online as I hate shopping, all that walking and carrying stuff is too tiring and it's too busy!

Attack of the Mould

Well the title says it all really, we have a bit of a problem!
It was discovered yesterday they behind our sofa in the living room, which is an external wall, there is damp and the wallpaper is peeling off and underneath is some lovely black mould. The wall actually had water on it, so there is defiantly a problem. My brothers friend is a builder and we are hopefully going to get him to look at it to see what needs to be done, although I'm not sure if we should contact a larger company to get a proper guarantee from them?
This also means we are going to need to redecorate at some point and I will not be able to help Pete strip the walls as it will release all the fungus spores into the air and with all my fungus issues, I'm just not risking it, even with a mask on! In fact I probably shouldn't go into the room for a few days after? Call me the over the top but it is clear my lungs like to let fungus' breed on them and it's clear they cause me a lot of problems so I'm sorry but I'm just not going to risk getting anymore. Therefore Pete is going to have to receive some help, any family members reading this, please feel free to offer...!

Ok so that's the first problem, the second is that Pete found some suits that he never wears were covered in mould last night. I can't understand this, the wardrobe looks fine and it's not on an external wall, all the other clothes seem fine too? I'm freaking out to be honest, I mean where we will find some next?!

I'm also freaking out, because anything we need doing is going to take money out of the money we have been saving up for our surrogacy fund which isn't much to start with!

Then to top all this off, our boiler hasn't started properly for the past two mornings! It comes up with a fault which has happened before and all you do do is twist two taps underneath to increase the pressure as the fault means low pressure, then it works again. But why does it keep doing it that's the question?!

Needless to say, I didn't sleep very well last night and so don't feel great today. I was awake for nearly 4 hours before I feel asleep and had to sleep on the sofa because every little noise Pete made was annoying me.

Alfie has been sick this morning so I hope that is nothing serious, he is quite often sick on a morning and I've read I should feed him more often in small amounts, but he already gets fed twice a day and if his stomach hurts he won't eat anything anyway! It is apparently acids building up, which sounds about right as natural yogurt always seem to settle his stomach to some extent. I think we are going to have to start feeding him natural yogurt on a regular basis.

Oh and I still haven't had my flu jab because my GP's are completely useless! Every time I ring they are either fully booked or have no clinics on, I have been trying since mid October! ARGH!!!!!!!!

Happy Me!

I had outpatients today and I am so happy! My lung function is fvc 62% and fev1 46%! Wahoo! That's the highest it has been since September 2009!

My weight is 54.4kg so I got in abit of trouble as apparently it is slowly dropping, so I need to keep an eye on it. I asked the dietitian at what point would she get worried and she said if my bmi dropped below 19 which is 51kg, so I think she needs to just chill out to be honest...!
They are retesting my fungus levels to see if they can think about taking me off voriconazole as I've been on it for about a year now and since no-one has been on it long term and I'm their guinea pig, they don't want to keep me on it too long!

Pete and I went for a nice walk yesterday with Alfie, we haven't done it for ages, not sure why. I guess you get so caught up in life that you forget to just have time in each others company talking, with no tv on or not making tea, doing physio etc. On Saturday night my friend came around and we watched this terrible film called 'The day the Earth stood still', I wouldn't recommend it!

Anyway that's it for today folks, I'm still buzzing from my results at clinic!

Sore Chest

On Friday I started to develop a really horrible productive cough and just couldn't stop coughing and coughing stuff up, it was never ending! I did an extra hypertonic saline to try shift some mucus but no sooner had I done it there was more to replace it. I was planning to go swimming but unless the gym don't mind bits of green mucus floating all over their pool, it wasn't going to happen! By Friday afternoon I was getting pains in the middle of my chest, especially on the right side. I didn't sleep well as I coughed during the night and the pain didn't help. On Saturday it was still bad but by Saturday afternoon I was coughing less and by Sunday night the pain seemed to have gone. I'm still really productive but the cough seems to have calmed down abit. I was going to call my team on Monday if it still hurt but I have Outpatients next week so since the pain has gone I didn't see the point.
I don't know if it's infection, or the cold and weather. It seems I was on my IVs at this time last year which makes me think it could be because its turning cold. I always have a more difficult time during winter, it's cold, your don't get as much exercise and there are loads of colds going around. I still haven't had my flu jab because my GP's are a pain in the arse and basically try to make it as difficult as possible!

Pete and I went to see the film 'Let Me In' on Saturday, its about a young girl that is a vampire and makes friends with this young boy. We both thought it was really good, it's not glamorous or sexy like your typical vampire film these days, it's more of what I think it would be like to be a vampire!

On Sunday we went to see Pete's family and went to this buffet lunch, there were starters and a carvery and desserts. You also could get pasta cooked infront of you and pick what went in it, it was really good for a buffet! Pete's got an Iphone now and has this app where you speak to this cartoon and then it repeats what you have said but in a squeaky voice, Pete's nephew who is about 2 and a half found it so funny and was laughing loads, it was really cute!

The other night Pete was making tea and found a caterpillar in the lettuce! We didn't want to put it outside as thought it would die so have put it in a jug and are giving it bit's of lettuce each day. After surviving on a lettuce in the fridge for 6 days, I felt it our duty to try give it a chance! I have tried to find out what type of caterpillar it is but I can't find out, so not sure what to do with it! Most stuff on the Internet is how to kill them! I can't see it this morning amongst the leaves so hope it hasn't crawled away!

Today is remembrance day and it's about to be 11am so I shall finish my entry for today and take a few minutes to be silent xx

Halloween Party

Well my nose is back to its normal self, wahoo! Although its very shiny so I'm going to give myself one of those mud facial things tonight to see if it helps!

On Saturday it was our Halloween party which went really well. No-one was a party pooper and didn't dress so that was good! We had seven people sleep over which was abit of a squeeze but we managed it! By the time I woke up the next morning Pete had made them all bacon sandwiches and tidied up alot of the mess, he's such a good husband! Although I do think he has learnt from the last party we had when I had a go at him for doing nothing...

I've been tired ever since the party though. You don't realise at the time how much energy you are using getting everything together and making the food, sorting people our etc, because of your adrenaline. But then once it's all over it catches up and even though I just laid around all day Sunday once we had put all the decorations away and cleaned up, I'm still feeling tired three days later. This weather isn't helping, I officially hate winter. The thing is, I quite like autumn because of the colours and also loads of good stuff is on the TV hehe, however every time I go outside it's 'cough cough', I feel so wheezy today after taking Alfie for a walk and coughing so much. I felt sick yesterday after coughing all the way to my car which was literally a five minute walk. It's not like I don't get wrapped up, it's just the change from warm to cold or vice versa, it's like it freaks my lungs out and they have a fit! It's also depends on how long ago I did my physio, like if I go our first thing after doing my morning physio it's not as bad as say if I went out at 5pm so due my evening physio in a few hours.

Another thing that's bugging me and I have no idea why it's happening, is that I keep waking up in cold sweats during the night. I'm not warm but I wake up and I'm dripping from head to toe and my pillow and sheets are all wet, it's totally gross and uncomfortable and I don't know what's causing it!

On Sunday we found out that my mums car has been stolen. They broke into her house whilst her, my brother and girlfriend were asleep upstairs. Luckily Murphy was in bed with my mum and not in the kitchen, because that's where the keys were, as who knows what they would have done to Murphy if he started barking at them. When my other brother came home with his girlfriend, the front door was wide open which is when it was discovered what had happened. It's scary to think that someone was in the house, one of my brothers could have come home whilst they were still in there or Murphy could have barked and my brother gone down to investigate. Some people are just scum!

Anyway here are some pictures from the party