Holiday Coundown Begins!

Went to the hospital today to finish my IVs even though I technically finished them on Saturday. My fev1 is up to 42% and fvc is down slightly at 59%, but fev1 is the most important and its gone up and is back in the 40% range so I am happy!
My weight was 53.5kg, I don't get it! How can I put on and lose 3kg in 3-4 weeks? Its crazy, I think I am going to stop paying attention to my weight, its like its on a yoyo! I haven't had any supplements for weeks, I just couldn't be bothered making them when on my IVs, maybe I'll start them again after my holiday, I mean who wants to put weight on before a holiday?!

The best news of all is that I don't need oxygen for my flight! Apparently my blood gases fell to 7.3 and 7.4 is the bracket they use, so I am still borderline and therefore only need oxygen on long haul flights. I rang BMI Baby yesterday to find out what I'd need to do if I did need oxygen, I was told it was £100 per flight (so that would be £200 as I have a flight there and flight back) plus £30 for medical clearance! I really do not know how they get away with it, I was so angry I cried afterwards because if I needed oxygen there was nothing I could do about it and they know it! It's taking advantage and I think it's disgraceful. It does not cost £100 to supply some oxygen for a 2 hour flight. Whats medical clearance? I'll tell you what it is, it's them sending my doctor a fax for the doctor to fill some details in. From now on whenever I book a holiday I shall make sure the airline provides free oxygen or the charge is reasonable. I don't know when I am going to stop being borderline and need oxygen on short haul flights and I won't let companies take advantage of my illness! Anyway now this is over I can just look forward to my holiday, without any worries!

This morning a lady came around from the council to check our second room is been used a treatment room. This means I can get a discount in our council tax, all my IV stuff is still in there plus my physio table, so she had a quick look and said that was fine.

I fear I may be seeing more assessors regarding benefits etc after the Budget yesterday. Everyone on DLA (new and current) is going to have a medical screening by 2013 apparently. This has worried me as I rely heavily on my DLA, it forms part of my income to help pay the bills, mortgage etc. I know I am not a fraud and people keep saying 'well if you are genuine you will be OK' but people can be very naive. Disability is whatever the government say it is, meeting with someone for an hour or so doesn't really give a fair few of all the problems someone with an unseen disability like me has to face. If I lost my DLA or it was reduced, I would possibly have to go back to work so we could stay in our house. This would have a negative impact on my health and help it to deteriorate quicker, I've tried working, I'd love to be able to work and I still do work a few hours a week (which tires me out!), but I know from experience that even working part-time affects my compliance, energy and overall health. So yes I am a tad worried about these so called assessments! But I also agree that there are loads of people on benefits who are not disabled or ill and they need to be made to go back to work. So it's a catch 22 really! However I'll worry about it when the times comes and have faith in the system...!

Arghhh Matey!

It feels so good to be getting back to living and enjoying myself, when you are on IVs and they are making you feel so emotional and rubbish, its difficult to see any light at the end of the tunnel. Yes I know in a few months it will all happen again, I'm not like other non-CF people, it's not a one off, it's something that happens regularly. However the months in between make it worthwhile, the few weeks after when I know I'm free and I don't have to go back to outpatients for awhile. I can just be me and enjoy life!

I often say people with CF appreciate life more and people ask me what I mean by that, how do they appreciate it more? Well because we have to work so bloody hard for it! On Saturday I had to do my last dose of IVs, then work at my mums shop for a few hours, then go get my needle taken out, then get home and get a proper shower for the first time in 2 weeks. So yes that shower was amazing and I am sure I appreciated that shower alot more then anyone else appreciates a shower! Then I had to get ready and do my physio and nebuliser before going out. So yes I think I do think I appreciated that night out more than others, I haven't been out for three weeks, I've felt like crap and it felt so good to be partying!

I went to my cousins house party and it was a pirates and princesses party so naturally I dressed as a pirate! It was another friends birthday and she was in town so after midnight I rounded some people up and went into town to see her but I only saw her for a few minutes. After a few hours my friends wanted to go home so I went back to my cousins party. I mean can you believe that? I probably still had strong antibiotics in my system and drank rather alot, but I wasn't ready to call it a night yet! So yes I think I do make the most of things when I have the energy to do so! I'd just like to point out the idiot bouncer who thought it was extremely funny inspecting my firearm (I had a fake pirate gun), they really need to get out more!

Tell you what, I had a banging hangover on Sunday but it was nothing compared to how I felt on that first week of IVs! Ah the joys of a simple hangover...!

I had my flight test today. I explained what happens in a flight test in this blog entry so won't bother going through it again. My sats fell to 88%! This is not good, I was borderline at 90% last year so I have no idea what this means. I am guessing it means I might need oxygen even on a short haul flight that is less that 2 hours long. I am going to call the hospital tomorrow so that if I do need oxygen I have the documents to take with me on Wednesday to get the doctor to sign to get it sorted asap. I am not impressed, is this a sign my health is worsening?

I have received a letter through the post saying I need to start looking for a new car as my motability car will be getting replaced in September. No I do not get a FREE car as people always like to point out I do, 'oh it must be nice to get a free new car every three years', yeah well it must be nice to have a healthy body arsehole! I get money taken out of my benefits for the car, so it is not free atall, I think I lose about £50 a week in benefits to have the car, so no it's not free atall, it's not like my benefits make me a millionaire as it is. Plus alot of the cars, you have to pay an advancement fee, when you collect it. So yes I do feel lucky I live in a country where I can receive help with transport, but no it's not free and I'd much rather not have CF!!

I'll be quite sad to see my mini go, I can't afford another soft top car and I need something bigger really. I'll miss driving down the motorway with the roof down and my favourite tunes blasting out. There really is something great about going fast and wind isn't there? I imagine running might feel abit like that if you were a good runner, kind of like you are free and invincible, or riding fast on a horse! On the way back from the hospital today I went past my junction and carried on to the next then turned and came back just to stay on there abit longer because it's so good!

Fitness

This week I have been trying to get out and about again, mainly to get my fitness back up. Its amazing how quickly your fitness can decrease and then its difficult to tell if your chest is actually better or not!
I've been trying to take Alfie out everyday for a 20-30 minute walk and I also went to the gym on Wednesday which I did not enjoy atall. It was boiling in there and I went on the reclining bike for 10 minutes, then did 30 sit ups, then went on the bike for another 6 minutes and I thought I was going to pass out! I might try and go again today, but it gets so warm in that gym which makes the task so much more difficult. I'm looking forward to be able to start Yoga again, I haven't being for about a month now as the nurse said I probably shouldn't do it when I have a needle in my port, and I miss going!

I'm now not going to the hospital on Wednesday to finish my IV's, they can't see me on Monday, well they can but the main CF doctors can't see me and they think I should see one of them, I'm busy on Tuesday so Wednesday it is. I'm going to go have my needle taken out on Saturday so that's OK! They have also had a cancellation for a flight test so I am going in on Monday, yeay!

My friend is coming around tonight for tea, I feel like I haven't seen my friends for ages. There was a party last week that I didn't go to, so now I feel left out! I know it's only been a few weeks and my friends aren't that shallow, but I do tend to feel like I have been forgotten about and they are all having fun without me, which totally isn't true. They have probably all being busy at work and I wouldn't have seen them anyway! Nevertheless I am glad to be getting my social life back again even if it is just a friend coming around for tea!

Good and the Bad

The good news is I got the bikini from Warehouse. Although I went in and it had gone! So asked a member of staff and she said they had put it in the back, so kindly went and got me some to try on. Mondays must be when they get new stock or something and its only a small store. I also treated myself to three new tops, two are from the famous Primarni...!! (also known as Primark), you can buy things from Primark as a pick me up without feeling bad about spending too much money.

The bad news is that the hospital called me yesterday and they can't fit me in for a flight test before I go on holiday! They have requested if anyone cancels for me to have the appointment but other than that there is nothing they can do! My last one was before our Honeymoon which was just about August time I think, I will refer to previous blog entries to find out (I knew this blog came in handy for something). The doctor is going to see if she can agree I am fit to fly on Monday when I finish my IV's so it all depends on how I am feeling. My last flight test said I was borderline which meant I needed oxygen on long haul flights but not short haul, well this holiday is to the South of France so it's only a short haul, so fingers crossed she will say I am OK as Pete looked on BMI Baby's website (who we think we are flying with...) and it says oxygen is £100 for each flight!

Other good news is I am starting to feel more myself, I can't tell if my chest is feeling better, it's so difficult to tell when the IV's are still making you feel tired and messing with your chest. The good thing is, I finish my IV's on Saturday but not going to the hospital until Monday so by then the drugs will be out of my system and I will hopefully know if I actually feel better than when I started. Although it's hard to remember since it seems like I have been on my IVs forever! Seriously, it feels like forever! I am getting so frustrated now and want to be off them!

Edit: Just looked and my last flight test was the 11th June 2009, gulp!

Two Piece Nightmare

It dawned on me the other day that Pete and I are going on holiday in less than a month! Wahoo! However this meant I am abit late in asking for a flight test, the nurse wasn't too impressed when I told her on Friday. She said she would get me booked in though before the holiday, phew!

I went bikini shopping yesterday, one of the most difficult shopping trips that exist for women, finding one you think your body looks ok in, is difficult enough! I think it is even more difficult for women with CF. People with CF have large chests, I don't mean big boobs! I mean the whole chest area is big, the rib cage and the width of the back. I have no idea why, I assume it's because our posture is poor as we tend to hunch from our breathing difficulties and our lungs are sore and infected so take up more room? Anyway, I have to wear bras that are 36's and even then I have to wear it on the loosest setting and sometimes wish I had a 38 on. People who are usually a size 8-10 in clothes would have a 30-34 size bra on so you can see there is a difference. It can be a pain with clothes as dresses etc are always tight around the chest area but fit everywhere else. Everyone who knows me now is going to look at me and realise I am a freak! Argh!!

Anyway this means I cannot wear bikinis that fasten with a clasp at the back. If you get a bigger size then the bust size is bigger. I've had bikinis with clasps at the back in the past, they dig into me, I feel like I can't breathe and I feel restricted and I end up not wearing them. So this leaves stringy bikinis, already limiting your options. Then if you are like me, you hate bikini knickers that have stupid stringy fastenings at the side, then come undone, then make the knickers baggy and they dig into you. Pete says I am too fussy, well I'm sorry but when I am warm, sweating and covered in suncream, I at least want my swimwear to be comfortable! I will be wearing this outfit the most out of everything I take on my holiday, so surely it should be the most thought out?! Plus bikinis are not cheap! We are talking £20+ for the tiniest bit of material!

Therefore my criteria so far is stringy top, not stringy bottoms. Then due to my paleness there is the colour to consider.... Nothing pale or wishy washy, nothing too dark, a nice deep colour is preferable. Can you see now how difficult the task of picking a bikini is?!

We spent over an hour looking for one and I didn't get one. The shopping centre shut and I left with nothing, but somehow Pete left with three shirts and a tie! However I did spot one in Warehouse I think is the one, I just didn't get chance to try it on. I'm going to go back today and try it on, wish me luck!

Clicky

I have a clicky needle! Today I had a check up at the hospital and was going to get my needle changed however stupid me forgot to take all my special dressings etc which meant I couldn't get it changed! So the nurse just changed the smartsite bung (the bung at the end of the line) and I changed the dressing when I got home, however the needle is still clicking!! My arm is looking great though, no mankyness atall! Yeay!



Apparently letting my IV's go through whilst driving to the hospital was not a good idea, something to do with if I have a reaction whilst driving. There was no other way to fit them in since my appointment was at 2pm! I am doing my IV's at 6am so they finish at 7.30am, then leaving the minimum 6 hours and doing the next dose at 1.30pm so they finish at 3pm. Then doing the final dose 6 hours later at 9pm so finishing at 10.30pm. So how else could I fit them in unless I let them run through whilst driving to the hospital?!

Snap out of it!

I seem to be feeling OK this time around, I think it must have had something to do with the virus I had. My chest isn't feeling much better though so I have just asked for another week of IV's, I have to go to the ward tomorrow as the doctor wants to see me since I haven't seen a doctor since I came off the IV's last Tuesday.

I'm not really feeling myself at the moment, I don't seem to be doing anything. I've put weight on and feel all fat and frumpy! I haven't even been having any skandishakes, I think it's all down to me going back on the pill! I weighed myself the other night and it said I was 55.9kg!

I just feel like I'm getting up, doing what needs doing and that's it, I'm spending most of the day infront of the TV and my justification is that I should be resting. However I feel like a hermit now that the weather has turned cold again. It's weird, I don't feel like I'm in my body, must be some drug side effect. I was cutting a bagel earlier with a massive knife and cut into my hand and it didn't even register, I just carried on and then when I saw blood I was just looking at it not sure what to do really. It's now got a bandage on it don't worry!

Yesterday I made a lasange and a cake, I just randomly decided to cook some stuff, I thought it might make me wake up abit but it didn't. I keep saying I'm going to go to the gym to build up some fitness to help my chest but it never happens. I feel like I'm in a trance and need to snap out of it! Way too much time in this house by myself I think! I need some purpose!

Ouchie

On Thursday my brother and I took the dogs for a walk, it was so warm! We considered throwing the dogs in the lake to cool them down but decided that would be nasty, since they both hate water. Loads of people were in the lake though, braver than me!

Here is my brother and the dogs in the car, note my car roof is down, my car is in it's element at the moment! Look at Alfie admiring my brother, I think it's love haha!

After the walk I developed a terrible headache, it eventually went with the help of two paracetamol and ibuprofen, just before I was due to meet my friends to go see the Sex and the City film. I really thought I was going to have to cancel. However like I say, it went just in time but meant I hadn't done my physio. The film was really good, I didn't like the first film as it was nothing like the series, however I think this film has gone back to its roots, not totally, however more than the first film which I hated. Towards the end of the film my headache started to return and by the time I got home I was in pain again, I tried to do my physio but only managed half then went to bed.

Friday morning my headache had thankfully gone, I went to the hospital to have my needle put back in and start on colomycin. Then in the afternoon I did some gardening, I pulled up some weeds and planted some seeds, not sure if they will do anything but here is hoping! I then got another banging headache! It went after about 2 hours and another dose of pain killers, thankfully!

So far I feel OK on the colomycin, colomycin always makes my face feel funny, like my muscles are all relaxed. You know when you go to the dentist and they numb one side of your face? My face feels abit like that! It's also affecting my coordination which was interesting yesterday when I was at the shop cutting hair, lets says I had to concentrate alot! I'm making sure I drink loads of the energy drinks and I had a re hydration sachet yesterday. So, so far so good. I am going back to hospital on Monday to start on the ceftaz. I feel like I live there at the moment!!

This morning I woke up with the worst pain in my chest I ever remembering having. It was in my left side and when I breathed in it felt like I was getting stabbed just under my boob. The deeper breath I took, the more the pain spread. I tried laying on my back and it was hurting so much I started to cry, I didn't want to breathe but obviously a person has to breathe! I sat up and Pete got me some co-codamol and then I needed to cough but I didn't want to because I knew I would need to take a deep breath! Anyway I didn't have a choice and once I started I couldn't stop, my god it was painful! But afterwards the pain felt alot better, it's still there but hardly hurts now. Must have been some mucus that needed moving! Ouchies!

Bring It On!

Bring it on IV's! I have my IV Kit ready so that you don't ruin the next 7 days of my life. Unlucky for you and lucky for me, the Co-Op had a deal on energy drinks and re hydration sachets, so stick that in your pipe and smoke it!

I have energy drinks, re hydration sachets, co-codamol, ondansetron (an anti sickness tablet) and most importantly some chocolate! Let the battle commence!

The Glass

Well I am currently off my IVs! Yeay! I got a nice shower this morning, I think everyone should get a break inbetween their IVs to get a proper wash!

I have felt worse and worse since I last blogged, I'm not kidding, I thought I was at deaths door. I got in the bath on Monday and I was thinking about everything I needed to do in order to get dressed for the day, just little things like 'get out of bath' 'dry myself' 'brush teeth' 'moisturise face' etc and I just couldn't do it, I didn't have the energy to do those small things. I just sat in the bath and started crying because I didn't even know why i was making myself get dressed, it's not like I had the energy or will to do anything. I've been getting up at 6 to put my IV's on, going to bed about 11pm after my last dose of IV's, doing physio, tablets, eating and sleeping and that's it. It's all been CF related and it's been bloody hard work to make myself do it. Doing other stuff has not being possible, it was my mums birthday on Saturday so I went for a meal for that, and we went round to hers on Sunday for dinner and that's about the only times I've left the house.

Then on Monday I started to get out of breath really easily, just walking to the bathroom or talking was making me breathe funny and it was really worrying. So on Tuesday I called the hospital and went in to see them. The weird thing is, they couldn't find anything wrong with me (apart from the usual stuff), my fev1 was only down 3% and my fvc was down 12%, my stats were 96%. Oh apparently I have put on 2kg in 6 days, think there might be a dodgy set of scales on the ward.....! My throat swabs showed I had the rhonovirus which is the common cold but the doctor didn't think that was causing the problem. I went for an xray and that showed nothing unusual, so the conclusion was that the IVs were causing the problems.

Therefore I have come off the IV's and have to call them tomorrow to decide what to do. As I obviously still need to have IVs, I went on them for a reason! I'm feeling alot better today, my energy levels are alot higher and my breathing is better, but not 100% better, but like I say, I did go on IVs for a reason! So I will probably go back on them tomorrow and maybe go on colomycin and meropenum, if I do I am going to ask for some anti sickness tablets to try help the side effects. People have also put some tips on the CF Forum which I am going to try and do.

The good news is, that my port seems ok and isn't red or itchy! Must try and see the glass as half full!

The thing that has worried me about this drama is that one day I might feel like this all the time. Breathless, no energy and tired. Isn't that how it feels when you need a lung transplant? I don't know if I can do it! That's the crap thing about CF, you know it's going to happen one day, it's a disease that gets worse, it doesn't get better! OK maybe the glass is half empty, at least I tried to be positive..!