The Here And The Now!!

Recently things have been a little scatty and Im not all that sure what to make of it. I keep going through phases where I am really down but trying really hard not to tell the other half as I dont want to worry her, but sadly instead I seem to be snapping at here and getting frustrated at the little things that I used to fine with. I tried telling her that these little things have started to annoy me but she seemed to have laughed it off as if I was joking so now im not all that sure about what to do. Im hoping that its just because Ive had a pretty rough few weeks with my lungs and its just washing me out. Who knows!! With regards to my lungs, I went to the doctors last week because I have started really struggling asthma and infection wise. I have been put onto some basic antibiotics for now to see if it would help but sadly it hasnt done a huge amount. My peak flow is still super lower and my oxygen levels keep dipping to around 92%. Sophie wants me to go to hospital but I really dont think I need to go yet. I am off to the doctors again later today but I dont actually think there is a lot more they can do, but I guess ive ssen someone and thats all I can do. Financially things have been a little tough for both sophie and I which has really got us worried. we have had our money drop by just under £200 a month which has meant that we have a very small amount of money each month to help us get by. Were really not sure what we are going to do. We have now applied for careers for sophie as we have calculated that she spends around 40 hours or more a week looking after me, and she does a brilliant job at it and I wouldnt be able to survive without her help. I am also having appointments with the doctors because it has come to the stage were I feel I need a little more support mobility wise. I am falling over a lot more, my legs are giving way on me and I cant physically keep hold of my crutches because my muscles keep giving way. Ive not had a verdict as of yet but im sure I will let you know. On a positive note, I have lost 2 stone in weight since I have had my surgery so I am super happy, ok yes it has been because I cant physically eat all that much, but Im still surviving, so Im clearly getting enough food going into my body. Im also moving onto more solid foods which im also super happy with as I have missed eating "normal" food. Sophie and I are also still wedding planning, it was come up to around £3009 altogether to pay for the whole wedding so we now need to start saving and buying things slowly to achieve the best day of our lives. We have also attended our first wedding fair, sadly it was rather erm CRAP so we wont be attending one there again, but it gave us a good insight into what we could do and what is on the market at the moment. Well I think I have rambled enough now so I will leave you to it!! TTFN XXXX

Life Recent Events

Thankfully life is doing fantastically at my other halfs in Cornwall and her family are fantastic, they are so supportive and just want to help me with everything. Im not used to all this care and help.

Ive had an appointment at my old local hospital and shes pleased with how things are going, and she said she will contact Plymouth hospital to see if they will take on my care as she knows the consultant there and aparently he manages difficult asthma also. Though this doesnt mean that Im going to stop going to Birmingham as they have been amazing.

Talking of Birmingham, I have also been to see them. Physio saw me first and done a few tests on me and confirmed that I dont have dyafunctional breathing nor do I have hyperventilation syndrome so I am absolutly over the moon with that. She also taught me a few more gunk moving chest physio moves which is super helpful. She also said that if this doesnt work by the time she rings me in a few weeks, she will see about getting me a device to help increase my lung function and shift a bit more gunk!!

Dr M is please that I have managed to stay on 10mg of pred, though when I asked if I could reduce it more or come off it altogether he said no, so thats a bit of a downer. He also says that im not allowed to reduce any of my other maintenance meds either. I guess the only good way of looking at this positivly is that I dont need any more meds currently. He wants to see me again in 3 months time to keep a close eye on me.

So life has been full of hospital appointments and driving up and down the country.

Im still waiting for an "urgent" mri scan at the request of my hip consultant to see how advanced my avascular necrosis is...who knows how long thatll be!!

Im travelling back to Cornwall tomorrow as I have an appointment at my new GP surgery to fill them in about me.

I am so shatterdd though, I tried driving today after going to Birmingham today and my legs just didnt want to work, theu were shaking all over the place, I really do hate the way things have ended up!!

Well thats my bit of excitement for the last week!!

TTFN

XXXX