changes

I feel like I have finally switched. From annoying trying to deal with it phase, to coping or at least getting on with things. I hope this switch lasts because I truly hate being in the angry bitter phase.

So we are still working on trying to get admissions and stuff sorted. I am meant to be going to London for a laser again on Monday, but they were meant to ring and confirm it last week. I am starting to get desperate now and even moving from one room to the next, leaves me making this gasping whistling noise. The other problem is, I still think I have my chest infection, however, when my airway is narrow, I cant get the speed or amount of air to get a decent cough to clear my lungs. Means I have to run plenty of extra nebs but more so than that, it actually got kinda dangerous the other day while out shopping. I was leaning on the trolly, and something in my lungs dislodged, however, because I couldnt cough right, it kinda stuck in my throat, meaning I was literally gasping and chocking. I could see the colour draining out of mums face. I felt like I was about to pass out and the room began to swirl. My niece who was with me, was able to grab a drink from the next isle, which I managed to get a bit down and loosen my throat. After a few minutes I was eventually breathing easier and I was able to clear myself enough to carry on.

Its pretty scary when stuff like that happens. I actually got a pulse oximeter over the weekend however, I dont think (or hope) its accurate. It shows that my sats when sitting still are about 97-97% which is normal, however on exertion they drop to 76%. This cant be right as below 85% is when you start talking about organ failure. I know my resting heart rate is about 100 to 110 and again on exertion it jumps to 140. The machine seems to be reading that right.

Mum wants me to go ahead with my big surgery. He surgeon is arranging it so that he operation will be before my big one. After that, she will have a few weeks where she is to recover before starting therapy, thats when I will have my big op, as sitting about is good for her as long as we can find some place to stay that isnt to far away. Plus, if she runs into trouble, the same hospital that I am in has a brilliant unit apparently that her doctor has worked in.

So the plan then is that I will be out of hospital and recovered when she starts her therapy, meaning that I should be in the best condition possible and able to look after her and take her back and forth to therapy, as it is about a 40min drive from ours to the place where she will have it.

I wish she had more support and contact in place, in fact I should fine out when her next GP appointment is. She has been reading up on the net, the net can be wonderful or a bain sometimes. And has been telling me that having this surgery and therapy will give her another 5 years at most. I tried to explain t better to her, but couldnt put it into words. How do you tell someone that it dosnt give you another 5 years, that it means that there is a 50% chance you will still be here in 5 years. Good for the optimist, bad for the pessimist.

Though, conversation has been very hush hush so far.

There is a lot of drama going on in my family at present, mainly with my sisters family. As a result, my youngest niece is staying in ours at present. I love having her around and spoiling her and generally just hugging lots. But she also needs to be protected and isnt a very happy person at best at the moment. She has been through so much already for a kid of her age, yet continually amazes me.

Mum has told her that she is sick, but needs to get a bit sicker before she gets well again. We know mum will lose her hair, so we need to prepare my niece. It also means, that if my breathing dosnt improve and I get stuck over the summer, my niece can help. She loves staying with me anyway, so depending, she would be helpful for things like changing beds and such that I really struggle with and carrying washing. My dad would do it gladly, but it just seems unfair. He is the only one working and supporting my mum and I, I would rather his time be spent with the supportive and social role with my mum than chores.

It seems odd planning all this, but it needs to be planned else appointments and admissions with clash.

The bit that makes me saddest, is what my niece said to my mum. She said, but you will get better? My mum said yes. I do hope its true. It would break my nieces heart to lose her. She is closest to her out of all the grandkids. She spends more time in ours than any of the others have

Please dont let it have spread.