It's not all death and despair

For the last few days, I have felt pretty darn good as things go. I've been feeling quite sprightly and managed to go out and about quite a bit. Tonight I'm hoping to go to the cinema with mum for a girlie night to see Prometheus. And a kind friend gave me some Cafe Rouge vouchers that she claimed when she cashed in her Tesco points, so I'm going to treat my lovely mum :)

I wanted to also take a moment to thank all the friends I have made through twitter and online forums who for the most part also live with chronic lung conditions. You have all been such a great support to me. More than you'll ever know. Just a year ago I felt so alone with all of it but you have given me reason to believe there is hope and your input has given me just the boost I need to start looking to the future again. I shouldn't name names as I'm scared I'll leave someone off the list but to name a few, Tor Tremlett - ever my inspiration, and fast becoming a cake decorating genius, Richard - who has helped me more than he'll ever know and offered me a friendship for which I am truly grateful  (even if we did fall out over something silly), Gemma - for being an upbeat and ever optimistic friend, plus the Northern Ireland contingent - namely Lauren who incidentally has the coolest baby dogs in the world. And 'Sheffield Claire', always a shoulder to lean on - metaphorically of course as we actually haven't met yet haha. Plus our very own 'islander', Jack - keeping it real!! Luv you all - 'you da bomb'. Plus loads of others that I can't thank enough :)

Sickly sweet Oscar styly speech over for this year :) < bows>

No Port, more expense and crap art

Crazy week. Long story involved which I'm not in the right mind set to go through start to finish. But main point I should probably mention is that I had my Brompton consultation today. And surprise surprise - no Hickman, no port - no line of any kind will be entering my sub-clavian any time soon. Apparently the risk of sepsis is too high and in emergencies the staff in A and. E wouldn't know how to access it. I disagree. Clearly I don't have 15 years of medical school to back up my opinion but I do have 27 years of living in this body, with these lungs. Not to mention a fractured shin to show for the last effort that was made to gain access when I was on deaths door and there were no veins to be stabbed. perhaps in my own stupid little way I think that it more than qualifies me to disagree?!? So with that little bombshell I am truly vexed. I can't say I didn't expect it. I knew he would say no, was just hoping for a miracle I guess. 

Was also told because I'm not a CF patient I still have to buy my own (£300+) nebuliser machine. That basically says 'If you're not CF then your need isn't as great' - that is despite the fact that I have more admissions than the average CF patient?! I am not saying I am more deserving - quite the contrary. I am saying we all deserve to be treated the same and to have access to the same treatment and funding regardless of the chronic lung disease we have. 

To add to my day of just general pissed-off-ness (<made up word> before you grammar geeks jump on the 'correct term train') I had to stare at that god awful cheap, shitty, donated 'art' they have on display there. In fifteen years that excuse for 'art' has not changed. It doesn't calm me when I've waited over two hours to be seen as intended but makes me even more fractious. One day I am going to lose my nut in there and break it over my knee and then burn it in some kind of pagan ceremony. Brompton really? - come-on!!!

Neuro Physio - Hope for the future?

I went to see the neuro-physio yesterday. I have been before and I really like the lady I had. She was on my wave-length. This time they gave me someone more senior. She seemed quite cold and so I was a bit worried she'd be a bit of a slave-driver. I wasn't wrong. She really was making me work hard. She had no time for friendly conversation. Just got straight to it. She started by looking at my gait (the way I walk). 

(As any of you who know me will know I use crutches to walk these days due to a incident that happened two and a half years ago. I was in an unfamiliar hospital as I wasn't in my area when I got sick. I was therefore taken to the nearest one. I was very sick and spent 3 weeks on life support in Intensive Care there. Unfortunately due to poor care, and downright neglect effectively, I got compression on my spinal cord. As a result my nerves no longer worked as they used to. As an extra stroke of bad luck, this was around the same time as I started to develop Avascular Necrosis in my hip joint. With the both happening in unison I struggled to control my pain and walking was very difficult).

I had only walked a few steps and she asked me to come back to the physio bed. She examined me and to my surprise announced that there was no point in treating my legs, as all the problems I had were now stemming from my spine. At the time of my initial spinal cord compression, I was not given the right care. No trust would accept responsibility for the payment of my treatment and I was therefore left with no neuro-rehab. I waited for over 18 months for someone to agree. As a result, my problems have only worsened. She said eventually they will be able to begin working on retraining my legs to do what they should be, but for months yet, the work she will need to do will be totally focused on my spine. 

So despite her coming across as a bit of 'little Hitler' at first, she seemed to really know her stuff when push came to shove. She seemed so confident about her plan. I found this encouraging, as for so long now I've remained pretty hopeless as far as regaining my ability to walk unaided. I'd even began to rely more heavily on wheelchair as walking was becoming too tiring and painful to bare.

We've scheduled 3 months ahead for appointments, and there will be many more than that I'm told. I'm just excited at the prospect of walking again. I don't care if it takes ages, I just want my mobility back if I can get it. Mobility is also crucial if I want to retain any kind of lung function. Since I haven't been able to do any exercise my lung function has plummeted.

There are no promises of course, and she didn't even speculate as to whether I would ever retain any of it, but for now I feel hopeful at least.