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

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