Hotal St James'

Well this is going to be my home for awhile....Yes I'm in hospital! A first for this blog so I haven't done bad,I think it's almost 5 years since I as last in! I went to start my IVs on Tuesday and really wasn't feeling good, I was sick when I got home from coughing so much and just lay down for the rest of the day, I had to go back to the hospital in the evening for my second dose of Aztreonam as I haven't had it for several years and they like to check you don't have a reaction to it.

Later in the afternoon the nurse called me to say my blood results had come back and my crp was sky high at 160, its supposed to be under 10 and usually when I need IV's it's about 30-40, crp are your infection levels. She asked me if I wanted to come in to hospital or wait a few days and come in if I was no better, they had a bed for me and I could come in the next day. I decided to go in as I was feeling so rough and just wanted there to be people around to look after me so I don't have to do everything myself, I was upset though as I don't like being in hospital especially so close to Christmas when I have shopping to do and things planned! I still had to go that night for my second dose and got annoyed when some woman in the lift in a hospital for godsake decided to comment on my cough in front of everyone and told me I should have a mask on!

On Wednesday I went in to hospital, Pete managed to get some time off work to bring me in (he has just started a new job!) but he couldn't get parked as the CF spaces which are reserved for CF patients and have signs saying you need a permit were taken by people without CF, typical! Another guy with CF went up to one of the cars where a man was sat smoking in it and explained this to him and he told him he had a disabled sticker and wasn't moving! So instead of Pete being able to help me up to the ward with my bags he had to drop to me off at the entrance and go as he didn't have time to park somewhere miles away and walk over. Makes me so mad that people are so inconsiderate. So I dragged it all in myself and this time some idiot in the lift decided to ask me if I was going on holiday as it looked like it! The nurses said they would call security about the cars but I don't know if they did.

I had an xray in the afternoon, I got pushed there in a chair by a porter, I felt a right div but was glad of it as it's a long walk to Xray. There was then some problem returning me as the porter put I was completed even though I wasn't, something to do with how they had spelt my name wrong, can you believe it! So i was stuck in Xray for over 2 hours, luckily my brother has lent me his Nintendo DS and I'm addicted to Pokemon already!

My Xray revealed I have pneumonia in my left lung, its not too worrying, just explains the high infection markers. I think I did the right thing in coming in anyway and I'm already starting to feel better.

The CF ward is really good, we all have our own rooms with ensuite, fridge and kettle and we have a computer with free Internet access and a tv with blu ray dvd player that is free to use. The food has improved alot since last time I was in, it is freshly made and I get a fry up every morning! There is a patient kitchen we can use to make toast, drinks etc but I'm being barrier nursed at the minute as swabs showed I have rhino virus (common cold) so I'm not allowed in the kitchen at the moment as they don't want other patients to get it.

December - bittersweet month

I had outpatients on Friday and my lung function has fallen to 32% from 42% a month ago and my weight has fallen to about 55kg so not much but it still concerned the Doctor. So guess what? I have to go on IVs! I am actually past caring, I feel so ill I wouldn't have cared if they said I had to go in to hospital. This is the lowest my lung function has been for 2 years, to the date can you believe it! It was 31% the 2nd December 2009, I get the feeling December is not a good month for me!

I get breathless doing everything, I cough doing everything even during the night, my chest aches, my body aches, I am sweating buckets every night and sometimes sweaty during the day, my appetite is poor, I have little energy and just getting dressed is tiring me out. Its gotten worse over 2 weeks and I've had enough! I realised yesterday I haven't even considered when we are going to put the Christmas tree up, I always get excited about that and put it in my diary! I'm currently listening to Christmas songs to try get me in the mood, I get this from my mother, one memory I will always have of Christmas is my mum having the Christmas tunes on loudly whilst wrapping presents at the table and writing cards. I think I am one of the few people who loves Christmas songs!

So I am starting IVs tomorrow, I'm not having Ceftzadime, I'm having Aztreonam this time so have to have my second dose at the hospital as well to make sure I'm not allergic to it since I haven't had it in a long time. The nurse annoyed me a little as she said I could have my first dose then go Christmas shopping and then come back for my second dose, does she really think someone ill enough to need IVs would be able to do 6 hours worth of shopping?! I think I'll go home thanks....

Anyway I am excited about starting to feel better again and I will finish my IVs the Tuesday before Christmas, it could be worse, I could be on my IVs on Christmas. I remember once when I was a child I was in hospital over Christmas but I got to come home on Christmas Eve and go back in on Boxing Day, I don't ever plan for a repeat performance!

Love on the Transplant List

I'm sorry I haven't blogged much, i'm feeling really rough at the moment. I woke up with a cold last Tuesday and started Amoxicillin straight away to try stop it going any further however I don't think it has worked. Sunday was the worst day, I haven't felt so ill for a long time.

I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!

I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!

There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme



Link for BBC IPlayer - click here

My Little Munchkin

Sorry for lack of blogging, I know know....!

I finished my IVs two weeks ago and my lung function was 42% so back to normal and I felt alot better. The Doctor and I have agreed I am going to start one month on and one month off Tobi nebs again to see how I cope, its to do with costs and how toxic they are, plus the time they take. I must admit the last two weeks have been wonderful, only having three nebulisers to do rather than five! I am worried though that when I go back in December my chest may have suffered as a result, not good so close to the busy festive period!

The day after I finished my IVs I felt terrible, I was so tired and my whole body ached. The thought that my IVs hadn't worked made me so miserable I just curled in a ball and I slept most of the day because of the tiredness. Then the next day I felt great! As I was driving back from yoga I realised I'd had my flu jab when I finished my IVs and that is what has made me feel so tired and achy! I have never felt like that before with a flu jab, so it must just be this years vaccine for some reason.

Two weeks down the line and my chest isn't the best but I think most of it is down to the weather becoming colder, I took Alfie for a 40 minute walk yesterday and my chest hurt the rest of the evening, it felt like it was burning and I must have loosened lots of mucus as I coughed all evening. This doesn't help my shoulder and upper back situation, they've been sore for about 10 days and it hurts so much when I cough. I don't know if I have pulled something or what but if it hasn't gone by my next outpatient appointment I'm going to mention it.

The hole in our ceiling is finally fixed! However we decided to decorate the bedroom whilst it was empty, so we are still in the spare room until next week. My mum has done the wallpapering today and I've finished off the paint, half the glossing is done so we are nearly there, this week has been tiring and I haven't even done that much!

I don't know if I mentioned on here but we are doing some behavioural training with Alfie at the moment to try encourage him to be more sociable. We are doing BAT (behavioural adjustment training) with teaches him to think before he acts, easier said than done! We also have a sounds CD to desensitize him to sounds that scare him such as fireworks, traffic, children etc. Not really sure how well it is going but I'm trying my best! Here are some pictures of my little munchkin as requested, aw I love him so much!

On our walk yesterday

All snuggled up in my blanket, he likes the cold weather about as much as I do!

Catching some rays whilst he can!

Fantasies

I want to thank everyone that commented on my last blog post, I think I've had writers block for a few months and felt my blog was getting slightly boring, but I guess that's CF in a nutshell and relates to my previous blog, CF is boring and is very repetitive!

The post wasn't a cry for help, it was just thoughts I had that I wanted to put down in writing and sort out in my head. Sometimes once I start to write them, it starts to make sense why it is how it is and I can apply some logic to how I'm feeling. I know my family and friends love me, that's why I hate it when I have these panicked moments where I think nobody gives a damn about me. The world and relationships aren't perfect and sometimes you have to learn to deal with it along with everything else.

Today I'm stuck inside with not much to do as our house has stuff everywhere, I am going to go crazy! Our bedroom ceiling is finally being fixed so we had to empty the room out completely, which means there is a dressing table and drawers in the kitchen and an extra bed and other junk in the spare room. I had to get up at 7 today (after getting up at 6.20 to put IVs on and going back to bed) to try to be ready for when they arrived which I failed at miserably, the electrician arrived at 8.15, I mean who works that early?! Luckily Pete was still here as I was about to get in the bath. The electrician left and so did Pete and then I frantically tried to be ready for when the plasterers arrived in 10-15 minutes. Not easy when everything is dotted around your house! I'm happy to say I was dressed and even had some makeup on by the time they arrived. So now my home is taken over by men and I'm hiding in the living room trying to stop Alfie barking every 5 minutes, I think we shall escape at some point to go for a nice walk!

I am so excited about finishing my IVs on Wednesday, I fantasize about getting my dressing off my arm and my eyes looking normal again. They won't stop weeping and are all red like I've being crying, they are dry and I want to itch them all the time. It's driving me insane! My skin near my armpit has gone all sore so I've had to sort out my dressing for my needle so there are no sticky bits on the sore part, this means I have loads of padding going all the way under my armpit. Again, driving me crazy... want to itch, want to itch, ohhh I can't wait to rub some moisturiser on it! I woke up Friday night and I'd ripped some of my dressing off in my sleep, oh hello top of needle poking out and hello having to try sort own dressing out at 3am with one hand, how fun! SO yes very excited for Wednesday!

The Lonely Disease

When you have CF and you are on your Ivs, or feeling unwell or anytime really, you soon come to the realisation that this doesn't change much. If people are under the illusion that family and friends offer to cook you tea, do your shopping, take you out etc like they would in a film then you are mistaken. People don't rally around to help you or to raise money for a charity, they don't feel inspired to do anything extra because of your illness and the difficulties it causes. Pete is the first person i've known since I can remember to raise money for the CF Trust. In Emmerdale last night the whole village was seeing if they could be a bone marrow donor for Sarah, I doubt this happens very much. My own husband doesn't donate blood, his choice, I can't make him and I'm not going to nag him because that would be me pressuring him to do something I wish I could do myself (I can't donate blood or anything, I've researched it). Most people I know are on the organ donation list, least that's something!

There is a part in the film 'The Beach' where a guy is taking ages to die and the main character says 'You see, in a shark attack, or any other major tragedy, I guess the important thing is to get eaten and die, in which case there's a funeral and somebody makes a speech and everybody says what a good guy you were. Or get better, in which case everyone can forget about it. Get better or die. It's the hanging around in between that really pisses people off'


I think people with long term illnesses are like this, people are supposed to die or get better. But we don't do either, we sit somewhere between, keeping going but never quite one or the other. This confuses healthy people, they don't understand it as they have never experienced it. They judge people with long term illnesses and make assumptions. He/she seems to manage OK, he/she doesn't seem that ill, he/she wants to be treated like a normal person, he/she is stronger than other people. I probably do it myself about others such as elderly people or people with children, I assume they are managing although I would try to never be judgemental about something I don't know about.

I imagine when I was first diagnosed with CF, my family were worried and anxious, eager to help out how they could. As years go on it just becomes the norm, people become complacent, one of my brothers doesn't seem to even acknowledge I have CF and if I mention it he thinks its some kind of excuse I'm using and sighs at me. I feel I have to push all the time to remind people, even my own husband who lives with me and sees how much I have to do, how tired and ill I can be, he sometimes expects me to be able to do everything I need to do, as if I have become immune to feeling exhaustion and pain over the years. Like I can push it aside and be tired when its convenient.

We went to a surrogacy social event on Saturday and stayed over 2 nights, being on my IVs made this day very stressful and non stop for me. I was exhausted on Sunday and still am to some degree, nobody even appreciates how much effort went in to me making that social event, but why should they? To them I was there just like everyone else. Why do I even want them to appreciate the effort it took? It won't make a difference to anything! I guess I feel like my achievements go un-noticed because to others they are nothing, but to me they are everything.

My eyes are so puffy and red and my headaches are clouding my mind and incapacitating me. I've asked to not be put on ceftaz again unless really required, I always say I will take it easy when on my IVs but it never seems to happen even though I don't seem to do much! Why do people always seem to ring you when you are trying to have a sleep? Why do I feel like people are calling me all the time, but the phone call is never to see how I am or if I need anything?


At the end of the day people like me are supposed to be dead, if it was survival of the fittest I'd have been gone long ago, even though I think mentally I am stronger than most. The thing is, I can do it on my own because of my strength. I can't remember the last time someone came to a hospital appointment with me because I don't need anyone to be there, I don't need someone to do my physio or tell me to do it, or do my IVs for me although Pete often offers and do you know what, its great when he does, to not feel alone in this quest for me to feel better. To know I could do it if I needed but the offer to be there to make things a little easier. My Nana pays for a lady to come and clean our house every week, its one of the best gifts anyone has every given me, not just the cleaner itself, but the recognition that I was struggling with the cleaning.

I like that I am independent most of the time, I don't want to rely on others to get me through, it's my CF and my responsibility, this makes it hard for me to ask for help and its mostly my fault as I don't ask. The thought of going in to hospital and someone else taking over my care frightens me as I know whats best for me. I like people see me as managing and getting on with life because that's my aim. I suppose I just wish that I didn't feel so lonely, CF is a hidden disease but also very lonely at times.

Nana

Started IVs yesterday, i'm on Tobramycin and Ceftaz like usual. My lung function is down to 37%, weight is 56.8kg, not sure if that's down/up, not really interested! Got a headache yesterday and woke up with one this morning which paracetamol doesn't seem to be shifting, hoping it will settle down, really can't face having headache for 2 weeks.
I'm taking ondansetron for sickness, certirizine to try prevent me getting sore, puffy eyes and i've also started a 5 day course of aciclovir to treat a coldsore that popped up to say hello on Tuesday morning.

The nurse came from calea this morning to do my tob levels, this is to check the levels of tobramycin in my blood after the first dose, as too much tobramycin can make you loose your hearing.

Found out today that my Nana was admitted to hospital last night, she is currently having chemotherapy as she has terminal lung cancer but her platelet count is very low (it should be 150 and I think my mum said it was 39) so she is having a transfusion. It's bad enough that we know her cancer is terminal and her treatment is to give her longer, but now she might not even be able to have anymore treatment so it's very worrying, my Mum said they will find out next week. So fingers crossed the news isn't bad next week as so far my Nana hasn't had good news and I think she deserves some.

My Nana, Mum and I when we went to London for my Hen Night

10 Things Not to Say

Someone posted 10 things not to say to someone with a long term illness on facebook, I thought it was quite good. Here they are:

10. You can't be in that much pain

There is always some problem I have with my body whether it be constipation, getting breathless, needing to cough, having a headache, my body aching etc. If I were to display to people every problem I had, I wouldn't be a very fun person to spend time with would I? I don't learn to 'ignore' my problems or 'get used to them', I learn to live with them because I have no other choice.

9. Stop being lazy and get a job

Trust me, I'd love to have a full time job and the wage that comes with it. Do people think I really enjoy sitting around all day, feeling useless? Getting a degree and not being able to put it to use? Seeing my friends have lots more money than me and talking about how great their jobs are? My illness is my job and trust me its not easy, I never get a day off. Remembering to charge things up, get IVs out, send off prescription requests, get my port flushed, waiting in for deliveries, picking up prescriptions, going to the hospital, planning physio and nebulisers in to my day, remembering all the tablets I need to take, trying to park close to where I need to be, holding in coughs, cleaning and sterilising nebulisers, remembering how many times i've been to the toilet!
Oh and I'm not lazy at all or at least I don't think I am, try doing everything on about the amount of energy you have the day after a long night out or when you have a cold.

8. You just want attention

Yes I have a life threatening illness and have known 20+ people die from this illness before their 30th birthday, just to get attention.... If anything I hide my CF from people and they have no idea how serious my illness is

7. Your illness is caused by stress

I'm not going to even address this, we all know CF is genetic

6. No pain... no gain!

Erm whats my gain? Will my CF improve or go away? Will I get a reward for having CF? If you go to the gym and work out you get fitter/more muscly, if you give birth you get a beautiful baby. Say this sentence to those type of situations please.

5. It's all in your head

Look at my medical records and tell me that, pretty certain my head didn't make me produce loads of mucus and give me lung damage or infections...

4. If you just got out of the house....

I take 2 meanings to this one
A) As in fresh air or speaking to people is going to cure me - I get out plenty thanks, in winter its not nice when I piss myself because I'm coughing so hard due to the cold!
B) As in because I can get out the house, I mustn't be that sick - I always have my illness, I have to learn to function with it. Its not a cold, I can't stay in bed for a few days and then get on with my life. Just because I can take the dog for a walk or drive to the shops, it doesn't mean I'm fit as a fiddle.

3. You're so lucky, you get to stay in bed all day!

Really? Would you really want to do that every single day? I know I wouldn't and p.s. I don't.

2. Just pray harder

If anyone said this to me I think I'd punch them

1. But you look so good!

People with illnesses do not have to look ill to be ill!! Why is there this belief that to be genuinely ill you must look it?!

Keeping Cool

I finished the cipro on Monday and I can't say I'm feeling any better, worse if anything as I had forgotten that cipro has nasty side effects like all over body aching!

I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.

I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!

In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.

So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!

I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!

IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!

Transplant Programme

There was an excellent programme on last night about organ donation. It showed the points of view from the family of the donor, a 65 year old lady and the recipients who received her heart, liver and kidneys. I thought it was put together very well and explained the process great, it also showed how the donor is treated with respect and how important it is to let your family know of your wishes as it is them who have the final say.

It made me feel honoured to know people who have been part of this journey and how many people are involved to try and help save a persons life. It made me realise how difficult it is for the families who agree for their loved ones organs to be donated, but also how proud they felt when they received a letter telling them how many lives had been saved.

Its not an easy watch, but worth it.

Click here to watch