Saturday, 1 October 2016

Charity events!

It's been a weekend of generosity. It's always lovely to share good, uplifting news!

On Friday night my 2nd cousin Suzie and her family organised a quiz night and a head shave. They raised an amazing £315 (and counting) for the CF Trust and a brilliant £145 for the CF Unit at Frimley Park. Suzie's husband Matt donated 6 plaits for The Little Princess Trust too! A truly giving evening, thank you!

Matt before

Matt and Suzie

Today, with the help of my wonderful family and friends, we managed to pull off the charity auction. I wasn't well enough to attend, but me and Alex was there via a Skype link. I had 32 lots generously donated: from pet portraits to weekend breaks. My dad and nana organised cheese and wine for our guests and our church kindly let us use their cafe as our auction room. Derek, our friend and auctioneer did a brilliant job and kept up the momentum and fun. My brother Tim whipped round collecting moneys and my cousin Ashley kept check on what sold for how much. My dad and I had done a presentation to go along side the auction, to advertise the lots and to give some information about the CF@FP charity. 

It was great to watch via Skype and we had a good turn out of friends, family and the congregation of our church. My uncle Ian's arm must have been aching by the end of it, having to hold up the iPad for an hour! 

We raised an incredible £1435, not including gift aid, for the CF Unit; I'm so humbled by the generosity. The auction has been a focus for me for the last 3 weeks and has helped me escape CF and the hospital. I can't thank everyone enough for helping me do this, I literally couldn't have done it without you! I want to come and give everyone a big hug, kiss and take them out for dinner as a thank you; may take me a while haha. 



The presentation

Derek our auctioneer

Until next time! xo

Thursday, 29 September 2016

Evening post

Evening all! I have an hour alone so thought I'd try and write a blog post; get some things out of my head. It's been about 10 days since my last post and my family and I have got into a good routine now that seems to work well.

At 8/8.30am dad arrives to help me start the day. Bless him, he is so supportive, patient and just the best dad you could ask for! Some mornings are hard and painful, some are better and we can actually have a conversation. Either way, dad is there smiling, comforting and holding my hand every step of the way.

My aunty Linda then arrives around lunch time and we have a catch up and do exercises together. We focus on legs, arms, pelvic floor and flexibility. It's great to have someone to exercise with who motivates you everyday, even if all you want to do it curl up and sleep- that won't build muscle now, will it!

Dad leaves around 12.30 and it depends on Linda's day as to when she leaves. Alex is next to come up to help me; sometimes we just sit in silence as I'm so tired and find it hard to talk. We usually eat a snack together and watch something on Netflix.

Then my mum and siblings usually come up in the evenings to see me and help me get ready for bed. It must be hard for them as they have just worked a full day, then driven all the way to the hosp, but they still do it and I am so grateful! We do my meds, try and have another snack, wash and teeth cleaned and get me comfy for bedtime.

I try to get the best night's sleep I can so I am ready to start all over again the next day. My dad says that for now we must just take it a day at a time. No big plans for the future that are unattainable; just one day at a time.

With CF, and I'm sure other illnesses, you have "good days" and "bad days". The last 3 days have been "good days", which is encouraging. I have had a lot, lot less panic attacks, no temps, and have been eating and exercising well.

For a while I had asked not to be told my numbers: CRP, lung function etc. That's very unlike me. I usually want to know all the information I can. I've just been too scared to hear them and if I knew them and they weren't good, I felt it would just make me so upset. I'm breathless enough without adding in crying! Today though, Emy asked if I wanted to know my CRP; I said yes. She told me that on Sunday it was 332- WHAT?! 332?! I was admitted at half of that! How had it spiralled so badly out of control?! Not cool!!! Then she got today's CRP and it has thankfully come down to 27-something. Still no where near good, but at least it is is coming down.

On the plus side, I have managed to put on 2kg of weight in the last 5 days! I'm determined not to have another NG tube after that disaster.

There's still a lot of work I need to do in my adjustment of life; I've accepted that, for now, my life is going to be very different from what I had hoped. Until transplant, then I can get back on track! The two main things are eating without getting so breathless and not being so scared to be on my own. It's only in the last few weeks that I have started to become uneasy being alone; I think it's because I feel so out of control at the moment. I can't control my breathing how I used to and the breathlessness makes me panic and a vicious cycle starts. I just feel if someone is with me they can hold my hand and tell me to take slow breathes and that it will be ok etc. I need to build my confidence.

Finally, it's my first charity event this Saturday at Ruxley Church at 2-3pm. It's an auction with lots such as reflexology, gardening, weekend breaks, baby sitting, paintings.... If you're around, come along! Cheese and wine provided :) All the money will be going to the CF@FP charity, which supports the CF Unit I attend.

Until next time! xo

Tuesday, 20 September 2016

Blurred lines

The NIV/BiPap is working well. The machine that assists me breathing so I can get some rest. It takes a little while to get used to, giving over control of something so vital as breathing to a machine; but once you get into it and let it guide your breaths, you can really relax your body. Parts of me that I feel I haven't relaxed in years: my shoulders, neck and back. Due to this I didn't need to go to MADU for IV Aminopholin and was able to spend my birthday on the CF Unit.

I had a wonderful day and was thoroughly spoilt with cards, gifts and love. After a slow morning (mornings are usually bad anyway so it wasn't a big deal), the CF team surprised me with a card that they had all signed and a big piece of chocolate cake. They all sang to me too, they are just so lovely here! Alex, his mum Tracey, my aunty Linda and uncle Ian came up in the day to spend time with me and gave me gifts. Alex and Tracey started working on the party they are organising to raise money for the CF Unit too. In the evening my mum, dad, brother Tim and his girlfriend Emma came up and we opened gifts and laughed lots. It was a really special day and I am so grateful for the wonderful family I have. I was blessed with thoughtful messages of love and well wishes on Facebook and by text too; thank you to those who took time to write me a message.

Me, Alex, Tracey, Ian and Linda

Nana and Papa

Me and Dad

Cake and card from the unit

Me, mum and dad

Alex bought me a Pandora bracelet and dog charm

Happy birthday to me!

I met with the palliative care team last week too. Before meeting them, I understood "palliative care" to mean care for people close to death. That may sound morbid, but that's what I thought it was. They introduced themselves and explained that yes they do aid people who are close to the end of their lives, as well as do a lot of work with cancer patients and also helping people who are living with an illness, such as myself. They help to make people comfortable. My 3 issues that I really wanted help with were nausea, breathlessness and anxiety. They were so helpful in thinking up suitable drugs for me and explaining what each do. Most were things I have had before such as anti sickness meds and oramorph, but the new thing I am on is an anti depressant. I'm not on it due to depression, but a low dose of the med helps take the edge off anxiety, which is really what I am needing! It's strange how I am now getting so anxious over things. It's a horrible feeling having panic attacks. I mainly suffer from this in the mornings when I wake up. My breathing is naturally worse due to sleeping for however many hours and not coughing and clearing my chest during that time. Then I wake and cough for ages and my oxygen levels drop and I find it hard to breathe and catch my breath. It is then that the panic sets in and it can take me a good couple of hours to calm down and get my breathing back on track. By this time I am exhausted again, but I can't go back to sleep because I need to start all my nebs, meds and treatments. So the aim is with this anti depressant drug, I won't spend 2 hours of the morning trying to catch my breath, I can spend those two hours doing other treatments and will have more energy for the rest of the day.

I have also found myself forgetting things lately. For example, my friend Ashley said we spoke on the phone last week but I cannot remember it for the life of me; and the physio said we had spoken about some oxygen tubing thing and I literally have no idea what she is talking about. Alex, my aunty Linda and the physio said it's probably because I have so much on my mind at the moment. I don't feel like I do, but I guess that is me just trying to go with the flow and not over think things. The subconscious mind is very powerful and I guess mine is likely trying to work things out for me and therefore I'm not retaining all information I hear. That's my theory anyway.

When I take my naps my dreams are so vivid that I wake disappointed that I am where I am. In my dreams I am oxygen free, running around, with friends and family, laughing, eating, just a "normal" person. Then I wake up to feel an oxygen mask on my face, struggling to breathe and desperate to cough my guts up. I feel like I have been asleep for hours and hours and look at the time to see only half an hour has passed; it's deflating and confusing for me. My head feels so blurred and foggy. Possibly it's side effects of the stronger drugs I am on now.

I was able to get out for a few hours on Sunday to celebrate my uncle Mark's 50th birthday. He is one of my uncles who ran the Great North Run for the CF Trust. It was a lovely day and great to catch up with the family. I was very exhausted by the time I left, but I'm so glad I went.

I am really trying to work on my muscles. Since being in I have lost a lot of weight and it's very apparent on my legs; they look like twigs. I am walking round the ward as much as I can and walking to the toilet instead of using the commode. I need to keep my strength up. I also need to increase my weight. Due to the nausea I hadn't been eating well at all, so we decided that we should try an NG tube. An NG tube is a tube that goes up your nose, down the back of your throat and into your stomach. Then "feed" can be put through it. Feed is like a bag of liquid that has lots of nutrients in it.

I have quite a few CF friends who have used NG tubes to top up their calories to gain or maintain weight. Some of them have even learnt how to place their own tubes and have done videos on it. So I wasn't too nervous about it and thought it would just be straight forward and an easy fix to help me put on weight. God, how wrong I was; nothing is ever an easy fix for me at the moment, I swear! It's obviously not the most comfortable thing having a tube shoved up your nose, past your gag reflex and into your stomach but this was just a disaster. It took 5 of us to get it in in about an hour. Then we couldn't aspirate it (when you draw back fluid from the stomach and test it's pH to make sure it's in the right place), so I had an X-ray, which showed it needed to go further down. It was another struggle to get it down further and I ended up being violently sick everywhere. But we got there. I was in a lot of pain at this point in my sinuses, throat and the top of my stomach. It's not meant to be painful so we thought it was just that I needed to get used to having the tube there. I was just glad it was in and hoped it would last the month that it's allowed to stay in for. Again, we couldn't aspirate it so another X-ray was booked. I was just settling down for bed when we got the results of the X-ray and the doc said the NG tube needed to come out as she wasn't confident that it was in the right place and you can't risk putting feed into other parts of the body. I was so disappointed, all that work, tears, sickness, perseverance- not just from me, from lovely Rubina, Charissa, Alex and Judith. For nothing. Rubina yanked it out quickly and suddenly all that pain in my sinuses and the top of my stomach vanished. I was exhausted and emotional and just needed to get to bed after that.

And now we are on to today. I feel like this is a very pessimistic blog post! I'm really sorry it's just there have been a lot of disasters and set backs recently. I hope it won't continue lol... so I was up at 5.30am with a temperature; I have had a morning temp the last 3 days so took paracetamol and cleared my lungs as much as I could, since I was awake anyway. I was trying to get back to sleep but pain was creeping around my chest and back. Sometimes pain is just pain and it goes in a few minutes, but this was getting worse and after about half an hour I asked for some pain relief. As I've said before, I have been very lucky not to really get any pain from my CF, so I didn't know what to do to try and relieve it. A lot of morphine later, I fell asleep about 8am, just as the busy hospital day starts- typical! My dad also arrived at about 8.30am. I managed to stay asleep until about 9am but woke in even more pain. It was uncomfortable to move and breathe, I couldn't work out why. Anyway, we carried on with the morning and during physio I was finding it hard to shift the stuff in my chest. Recently it has been very easy, so again I was wondering what was going on. Then I thought about last night; we had a bank nurse in as our usual night nurse was ill. I remember she didn't really know much about the Bi-Pap and said something about no humidifier on it. I was thinking at that point, I'm sure they had some sort of water going through it; but I didn't question her as I was no wiser myself! I mentioned it to the physio and she she checked the machine to find it had dried up. You are supposed to top it up with special water each night so that it doesn't dry up your throat, mouth and lungs. My lungs had dried up and that is why I was in so much pain and unable to shift anything. So you learn something new every day!

Emy also told me today that my CRP levels have gone back up for 138- almost as much as when I came in :( Disappointing to say the least. 2 and a half weeks in and practically no improvement, maybe even worse seeing as I have lost a lot of weight and muscle. *Sigh*, let's keep plodding on though 'ey! Everything happens for a reason, just have to have faith that it will all fall into place in the end. I WILL GET THROUGH THIS AND COME OUT THE OTHER SIDE SMILING AND READY TO LIVE MY LIFE TO THE FULL ONCE MORE! :D :D :D :D :D :D :D

Until next time xo

Wednesday, 14 September 2016

Quick catch up

Hello world! It seems as though I have been off the radar and off the planet for a while. Have a fair bit to catch up on but don't want to end up with another super long post, so shall try and keep it brief.

It's been a week and a half since I was admitted and in all honesty I have just gotten worse each day so far. They often say you will feel worse before you feel better, but this is getting out of hand lol. The sickness, pain and breathlessness have been unbearable; I have lost so much weight and muscle.

On Friday I asked my dad to put up a Facebook status to ask anyone except close family not to visit me at the moment. The main reason being that I don't want people generously travelling all the way here and taking time out of their busy lives just to watch me sleep! If you'd like to see that, my sister has hoards of photos she can send you to fulfil that desire ;) I am finding it very hard to talk and stay awake at the moment and just don't want to bore any of you or feel like you have wasted your time. Once I am on the mend I shall let you know and will welcome you with open arms!! I need my gossip fix haha. Thank you so much, as ever, for the love, support and for understanding my circumstances <3

I have had two of my hypnotherapy sessions now. I would have had 3 but I unfortunately had to cancel this morning's one due to ill health. It is the most strange thing ever but I feel it is working. It is almost like you are asleep, that's the only way I can describe it at the moment. Your limbs feel so heavy but at the same time you feel like you are floating. Very odd but I am enjoying it and really have faith it will work! The hypnotherapist, Helen, is such a wonderfully kind lady too and it's lovely being in her uplifting presence. Such a small world, she used to live down my road!

I have decided to raise money for the CF Unit at Frimley (the place where I am). I receive exceptional care here and I wish everyone who has CF could receive the high level of care I am fortunate enough to. I want to ensure that the unit can carry on delivering this care to all of their patients now and in the future. They rely on donations to help offer extra services such as free wifi, free parking, free TV, a snack trolley; as well as the life saving equipment. The doctors, nurses, care assistants, physios, dietician, psychologist, cleaners and reception staff go above and beyond for their patients day in, day out. I am planning on holding a few events over the course of the next year, the first being an auction where people donate and bid on services i.e. baby sitting. This auction is being held on Oct 1st. I am also lucky to have my cousin Suzie holding a quiz night, my mother in law Tracey organising a big party and my aunty Linda holding an evening where you swap plants, all for charity. Once I have more energy I will write a more in depth post about the charity work :)

My uncle Mark and uncle Jeff ran the Great North Run on Sunday for the CF Trust. They completed it in 2 and half hours and have so far raised an incredible £1020 between them! Well done and thank you so much guys. 

2 more paragraphs... feeling rough, need to type these then I can lay down.
My friend George who had her tx just over a year ago popped her head in today. She's a naughty little minx but I love her for it! She looked incredible. She would say she looks fat, but I think she looks beautiful. The picture of health. She has joined the organ donation committee here at Frimley so was in doing bits and pieces for them. She stopped for a quick chat and it was so lovely to see her. She has said over Facebook Messenger if I ever need to ask any questions regarding tx just give her a message but I couldn't ever think of anything. Then when I saw her I suddenly had 101 questions, strange how the mind works 'ey. She was encouraging and uplifting and I felt on such a high after she left that I ate food! First time in days I had dinner :D

Finally, the next plan health wise. I am trying out the NIV at night time tonight. This is a machine that will help me breathe at night so my body can rest. If I am no better tomorrow then I have to have IV aminopholin again :( I really don't want to. I will have to move wards to MADU where I have no phone signal and I don't know the people there like I do down here on CFU. Things are done very differently up there. Also, I will have to have another power glide. Last time the Ami didn't work, so I am reluctant to go through all that trouble for nothing. It's my birthday on Friday and if I need to be in hosp I'd rather be on CFU!

That's all I can manage at the mo. Until next time xo

Wednesday, 7 September 2016

There's something I need to tell you

This is going to be the most difficult post I have written to date. The most serious. Why am I writing it publicly for anyone to read? This blog is like a diary for me and it has helped over the years to express and clarify my feelings and thoughts. It has helped me work out problems. It enables me to keep in contact and update my family and friends in one go so I don't have to repeat myself a hundred times and I can spend time writing all the facts and figures and wording things correctly so I don't miss out details. I also hope that it may be helpful and insightful for other CF suffers or people with other illnesses or disabilities. I hope that it raises awareness for CF, organ donation and other topics that I raise. This will most likely be a long post, I warn you. I need to write this as part of my acceptance of the situation and to normalise it for myself so I can have the strength and confidence to go forward.

It was about a month ago, 2nd August, when I was admitted just before my holiday to Suffolk. I had come into the unit exhausted, breathless, had wet myself on the journey, was on a lot of oxygen and generally just very poorly. I had done a poor lung function and was very upset. One of my consultants, Dr Higton came in to speak with me and my parents. I was going to be admitted. I did a post on this on Weds 3rd Aug titled "The last few weeks", but I left out information that I wasn't at all ready to accept or talk about. While speaking with Dr Higton, she came down to my level, looked me in the eyes and very honestly and softly told me that she thinks it's time to start thinking about being assessed for a double lung transplant. In that moment I completely broke down. I have never been so upset, scared and crushed as I felt then. I screamed for my mum who rushed over to hold me and I just cried and cried. I was panicking and saying that I couldn't do it, I'm not strong enough for it. It was honestly the worst moment of my life so far; not because I was in any pain physically, but emotionally I just couldn't cope. I didn't expect to hear those words. Not from a professional, not about ME. I feel I am too young. 6 months ago my lung function was just off 60%, my weight was the best I had ever been, I had huge plans for the future: holidays, starting a family, expanding my business.... This had never even crossed my mind. After a few minutes I managed to compose myself slightly. I opened my eyes, Dr Higton was still sitting there calmly and patiently letting me go through the emotions I needed to. As a CF consultant I'm sure she has had to have this conversation many times with patients and she is wonderfully professional and kind at the same time. I couldn't have asked for more from her in that situation and I am glad now that it was her who told me.

I will never forget that moment, those few minutes. It's life changing. I am glad my parents were there with me. I needed them. Even thinking back on it now to write this it brings tears to my eyes. It was so emotional for me. More so than any other situation has been for me so far in my life.

I was admitted then and had to go to MADU as the CF Unit was full. The thought of transplant was still at the forefront of my mind. I wasn't ready to talk about it yet. That evening on the ward, the woman next to me was told she was dying. There was just a curtain between us and I could hear all the conversations. I had never witnessed a death before. Alex was with me and I prayed for her. She was an elderly lady who had her son and daughter around her. She was on a ventilator and was told she could decide when she was ready to take off the mask and allow herself to die. Imagine having to make that decision. Knowing that is your only option left in the world. She was made comfortable and wouldn't be struggling in her final moments. It was heartbreaking hearing her and her children having their final conversations; she was asking them to make sure certain things were done and taken care of when she was gone. She had her favourite cup of tea ready for her and took off her mask. It took about half an hour but she passed peacefully and comfortably. The ward was respectfully silent and we only knew of her passing when her children started crying for their mother. My dad often says that God puts things in place for us to learn from when the time is right for us. I believe this was one of those instances. With the talks of transplant, thoughts can naturally turn to death. It's something I need to come to terms with and I want to be at peace with death and not be scared of it. It's something that will happen to us all eventually. Witnessing this woman's death has definitely started to put me at ease. I know now that if that sort of situation happened to me, I could be made comfortable and not be struggling. No one wants to die in pain or suffering.

The next morning I woke up in tears; something I am not used to but I needed to cry. My dad always reminds me that it's ok to get upset. For me crying is important; I cry quite a lot! More so these days. I have to remind myself that it doesn't mean I am weak, it's just my way of dealing with things at the moment. I don't usually cry for long, but I sometimes just need to to move forward in my thinking and acceptance. My dad and aunty Linda came to visit me that day and my dad mentioned the transplant in front of Linda. I wanted to tell her, I had been thinking of telling her the whole time she was there but when he mentioned it I started crying and asked him to not talk about it. I wasn't ready yet. He later filled her in on their way out and, for then, that was what I wanted.

During the rest of that admission I avoided talking about the transplant and no one in the team really mentioned it. I was constantly thinking about it in my mind, but I could do so almost in secret and in my own time and that suited me. I could work out my thoughts. During this early period, my thoughts were that I wouldn't go for a transplant.

The end of that admission was when I went on my family holiday to Suffolk. It was very much needed and was so nice to escape hospital, CF and transplant. I'm not sure who in my family knew about the transplant talks; I still don't really know who knows! I'm hoping my parent's have told my family. Again, I have avoided actually asking them to take on this role.

During the holiday, again I thought about transplant a lot but kept it to myself. It wasn't until the last night before the end of our holiday that I had an open conversation with my mum and Alex about it. I expressed my worries and concerns that had been building up inside me: mainly my fears of death. They must have been thinking about transplant themselves too as they were prepared for my fears and had comforting answers and advice to give. They reminded me of my good friend George who is a year post transplant (tx) and how well she is doing and how much it has changed her life. They talked positively about it and I needed to hear these things. I wasn't looking forward to going home, back to reality and having to face tx talks: the next chapter of my life.

The following week, I had a check up at the hospital. My results were good and I was a lot more relaxed. When I saw Dr Higton again, she mentioned starting the assessment process for tx: requesting the different tests that need to be done and starting the paperwork. I don't know why exactly, but in my own little world, I had thought that as no one in the team had really mentioned the "transplant" word since back in early August, that it was off the table for now and everyone (except for me) had forgotten about it. I was quite happy with that thought as I just wanted to brush it under the carpet and not have to deal with it for another few years at least. Again, my reaction was to cry; when I hear the word "transplant" in relation to my own life, it triggers tears. Before I left that appointment I spoke with Shelley, another of my favourite nurses (who I am kidding, they are ALL my faves!). She was brilliant in talking me through some of my initial worries and queries. It was the first time I was asking questions about it. It felt great after to have relieved myself of some of the burden. One of the last things she said was that if I didn't go for it I'd have her to deal with! Of course this was all in jest, but it made me rethink and almost instantly I changed my mind. She was right, of course I had to go for it!

That appointment and those conversations were the next step in my acceptance of my need for a tx. I now needed to be able to talk about it openly with my close friends and family and desensitise myself to it so that I could actually talk about it without crying. I began with Alex, mum and dad. Just bringing it up every now and then. The next step was to tell my closest friends. I wanted to do it in person with them where possible. I knew eventually I'd have to write this blog post, so I wanted to try and tell them before they read it on here. Firstly I told Emily; I cried and she was there for me. Then I told Daniel; I managed to keep composure. Next I told Ashley over the phone as we were too busy to meet up in person. I cried, but less this time. I was getting better at speaking about it. I haven't managed to tell all the people I have wanted to as I haven't had the energy to see everyone. If you are one of my close friends reading this wondering if I wanted to tell you in person, chances are I did and I'm sorry I haven't had a chance to speak to you <3

Last Friday, when some of my CF team came to do a home visit, we started the assessment process. I had most of my blood tests (except the ABG, which I will explain later or another time), lung function, weight and filled out a lot of paperwork. I cried (again!) but I am improving! I am crying less and less and am able to have conversations about it. I asked a load of questions to Judith and Emy, which really helped. As you know, I like to gather information as it helps me get my head around a situation.

So it's been about a month now since tx was first mentioned to me. I am in a much better place than I was mentally and can see more clearly. I am able to talk about tx without bursting into uncontrollable tears and have put my big girl pants on now and I'm just getting on with it. It's the next step in my life and there isn't much I can do about it. The deterioration of my CF is out of my control and I have accepted that. I will not give up the fight for life and I have so much to live for. On Friday I am seeing my psychologist and it will be the first time I will speak to her about my tx situation. This will be an important step for me.

I finally want to briefly write about why I am needing a tx, why now and my hopes and fears surrounding it. There are different factors that determine whether a patient qualifies for a double lung transplant: lung function below 30%, life expectancy of 2 years or less, quality of life lessened and there may be other things but I don't want to google it too much as it will probably scare me. Dr Higton said mine was mainly due to the quality of life part.

There is a small window in which a patient can have a transplant. They need to be ill enough to need one but not too ill to survive the operation. That is one reason we are starting the assessment now. It will still take around 6 months until I might be accepted onto the list. Who knows what my health will be like in 6 months time. I may be a lot more ill, I may be the same as now or I may have improved and be too well for transplant. Best to have everything in place just in case though.

The assessment process, and even the operation, doesn't scare me too much. It's just one darn thing that is freaking me out. The ABG I referenced earlier. It stands for Arterial Blood Gas. It is a special blood test in which a needle goes into the soft, delicate part of your wrist where you can feel your pulse. It goes deeper than a normal blood test and measures accurately the amount of oxygen and carbon dioxide in your blood. It is a well known and accepted fact that this blood test hurts a lot and I am not good with pain. I have managed to avoid it all my life, but unfortunately this test is essential and unavoidable if I want to get on the tx list. I haven't asked my CF friends too much about it or googled it as, again, I don't want to freak myself out even more. I have enlisted the help of a hypnotherapist and had my first session yesterday to try and overcome my needle phobia and be a peace with this test. I NEED to conquer this. I want to live.

So that's that for now. Thank you for reading and I hope you haven't felt you have wasted too much of your time on this lengthy post! My "secret" is out and now it's time to tackle it. This is the scariest time of my life and I apologise in advance to my friends and family for having to put you through any hardships in the days, weeks, months, years to come. I love you all and appreciate your love and support in my life. I am truly lucky to have such wonderful people in my life.

Until next time, Jo xo

Monday, 5 September 2016

I'm back in

Just a quick post about what happened over the weekend that has led me to be admitted to Frimley again. Mainly for my family and friends as I'm finding it hard to talk at the moment due to breathlessness, so by writing this I can just send you guys the link and you'll know what's going on :)

From Thursday I started to feel a little worse each morning. On Friday Judith, Emy and Charissa from my CF team came to do a home visit to see how I was getting on. My lung function was good at 39%, weight a little down but overall I was good and they were happy. I had my bloods done and they could see how I was coping at home. My parents and Al were around and all my animals were there to say "hi!" haha. Judith, Emy and Charissa were pleased with the amount of support I have from my family and the organisation, cleanliness and efficiency of the home, which was lovely to hear. It was so nice to have them over, like friends coming over for a cuppa! It really meant a lot and they are such wonderfully kind people who go above and beyond in their work for their patients. I am truly lucky to go to Frimley and receive such brilliant care!

Saturday was a bad day health wise and I needed a lot of support from my parents and my lovely aunty Zena came over with a big bowl of delicious soup for me and Al, who was also ill with sinus problems and a migraine. Regrettably, I had to miss one of my bestie's birthday :( I have a few extra special friends who are literally one in a million and Ash is one of them! So understanding of my circumstances and always there for me when I need her. This was no exception and I am so grateful that she has the patience of a saint and understood that I wasn't well enough to attend. I WILL make it up to you babe!! <3

In hindsight, it was a very wise decision not to drag myself up to London for Ash's birthday. That night I was very unwell with breathlessness, coughing, being sick, and just generally very uncomfortable and unable to sleep. By morning I was even more exhausted than I was before bed and called my parent's at 7.30 to ask them to come over. Al and I were meant to be visiting London Zoo with Al's family, but again, unfortunately we had to cancel. I wanted Al to go anyway but he is too loyal for his own good and wouldn't leave me. Once my mum arrived I ask her to call the CF Unit to see if there were any beds. You know I'm bad when I actually WANT to go to hospital! Sweetie, one of my favourite nurses, was on duty and said she could get a room for me on the unit. I just needed to go through Frimley A&E as it was a weekend and there are no doctors on the unit on the weekend.

By 8.45am we were in Frimley A&E majors. I can honestly say Frimley hospital has the best A&E department I have ever been in, whether as a patient or a visitor. Other than loosing Alex for an hour, everything was brilliant: the docs were great at getting my veins; the nurses were so attentive; I must have seen about 7 doctors, all of which were lovely and reassuring and when I was having an allergic reaction to one of the meds they wouldn't leave my side and kept me calm. I can't thank them all enough. By 1.45pm I was less breathless and on my way to the CF unit. Sweetie accessed my port and Al and my mum got me all settled in. Bless them, they were exhausted from the day! They went home to get some much needed rest at about 3.30 and my daddy was up with me from about 6.30. He was his usual self, creating lists of things we could do to pass the time in here (this is where I get my list making obsession from!) and helped me get ready for bed before leaving around 9pm.

I am a lot weaker than I have ever been and need support for almost everything from going to the toilet to setting up my nebs. During the night, after one of my many toilet trips and coughing fits, I felt a lot of pain in my right lung. I have been extremely lucky in my life not to have really ever felt much pain from my CF. Recently though I have been suffering from a lot of back pain and this added lung pain last night made getting comfortable very challenging.

This morning I was back to square one with breathlessness, coughing loads, in lots of pain, feeling sick etc etc. Just overall feeling rubbish. As ever, the team around me have been exceptional and my consultant prescribed me co-codamol for the pain. Ahhhhhh I feel sooooo much better now; I can relax! My heart rate has come down due to not having to be so tense from the pain all the time too, which is great. I've just had an x-ray done of my abdomen to see what's going on in there as I get very bloated and uncomfortable after eating, so once all that is sorted hopefully no more pain and discomfort for me. Then just need to tackle this bloody infection again. My CRP had shot up to 166, so it's no wonder I'm feeling the way I do. I'm in the right place though and just have to fight through it again.

My birthday is in 11 days, but to be honest it's the last thing on my mind; I just want to get better. The only thing I want to be out for is my birthday treat from my aunty, uncle and cousins on 24th Sept, which is a visit to Buckingham Palace and a trip to Phantom of the Opera, complete with a backstage tour as my aunty has contacts ;)

Oooh and tomorrow I start my hypnotherapy! The hypnotherapist has VERY kindly offered to come up to the hospital to start my sessions; I'm so grateful to her as I really need to get on top of this needle phobia once and for all.

In the next few days I am planning another post. It's something I need to write about. I'm only just feeling ready to write/talk about it properly, but I know it will do me good to be open about it.

So until then! xo

Thursday, 1 September 2016

September is here!

September is here! My birthday month, although I'm not really that excited this year. I usually have a big house party with my friends to celebrate but this year I just don't have the energy, which saddens me. I'm going to be 24 not 94!

Almost 2 weeks since we came back from our lovely holiday and I am pleased with how we have managed back at home. I have had one hospital appointment, which went smoothly and have another one next week. I'm visiting a lot more regularly now, every 2 weeks. It's mainly to have blood tests to check my liver levels due to the anti-fungal medication I'm on; but it is also reassuring for me to know that if I start to decline, I won't have to wait long until an appointment with them.

Since being back at home we have managed to organise ourselves a lot better. We are still sleeping downstairs for now so it means we have less space in the living room, so we needed to make sure we had no extra clutter and everything had a place that was easily accessible to me. My daddy loves that sort of organising and he was a great help at getting the job done while I told him where to put things. That's another big step we have taken: my dad, now that he has retired, is going to become my carer as from Monday and Alex is going to put all his time into looking for work. He has been looking for a while but with my health getting worse, he has had less and less time to focus on it. It will be great for Al to have a career; he is young, enthusiastic and such a hard worker. He needs to be out there living his life to the full and not having to worry about me. It will do worlds of good for his mental health, routine, self confidence, socially and hopefully he will have more money than he does on Carers Allowance, which is only £60 a week- less than £10 a day! Shocking!!

Me and Al are so lucky to have such lovely friends and family who are so understanding and go out of their way to help us when we need it. One of my besties Emily came over to cook us a delicious spag bol- with left overs for another eve! And my neighbour Christine baked us some lovely Bake Off Style jaffa cakes. Due to being on O2 all the time, I'm not allowed near flames so Alex is having to do all the cooking, with his specialty (and only dish) being bacon sarnies haha so we welcomed the change! :D

We try to get out everyday (God, we sound like old fogies!), usually to the shops, seeing friends and family, running errands, hospital, chemist etc as it's easy for me to just sit in my pit (huge nest of pillows and duvet I have made on the sofa bed) all day and get lazy. That will do me no good! Need to keep exercising these lungs and keep the strength in my legs, arms etc.

My aunty and I are starting yoga as from next week too. On holiday we did it and I found it so helpful so we have found a local one. I am also starting hypnotherapy next week. I have had quite a lot of psychology help for my needle phobia in the past, but as much as I have improved, I'm still not 100% comfortable with the idea of needles jabbing me left right and centre. I've never had hypno done before but I am so willing to try anything to get over this fear as it's something I need to deal with for my whole life and the needles are only going to get more and more intrusive as I get older and more unwell. The ideal would be that I can be put in a trance and have absolutely no idea what's going on and feel NO pain! :D

Finally, another shout out to my uncle Mark who is running the Great North Run for Cystic Fibrosis Trust in just 11 days time! If you'd like to sponsor him, here is the link:

And another wonderful friend of mine Katie is Skydiving for Cystic Fibrosis Trust in October! Her link is:

Until next time! xo