A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Saturday, 13 August 2011


This time last week I was still finding it difficult to process the trauma of the last attack.  I wasn't sleeping even though I was utterly exhausted, and every time I lay down to sleep I had all the events of the last attack whizzing through my head at a hundred miles an hour.  I was stressed and tearful through the day and generally wasn't coping very well, so I decided to see my GP to off-load.  I know all the GPs at my practice very well, and they're all great, but there's one in particular I go to when I need to verbally vomit, and she's fine about me verbally vomiting all over her.

I made a double appointment to see Dr P and still managed to run overtime by 10 minutes (oops), but it was good to off-load.  However, it wasn't an easy appointment.  We didn't just talk about the asthma attack-related stress, but also my mobility.  In fact, this is what took up most of the time in the end and it was instigated by Dr P.  In light of the recent attack with how suddenly it came on, how severe it became and so quickly, and what little activity set it off, she said that, in her opinion, it's now too dangerous for me to walk.  I already use my electric wheelchair (Taz) a lot of the time - partly because of the POTS as well as the asthma - but she said I should use it as much as possible, and I should consider myself to have virtually no mobility.

It's a shock.  It's upsetting.  I know it's the reality, and I know that I was using my electric wheelchair more and more, but to have my doctor say this feels very different.  I keep thinking about the implications - all the things I hoped to do again, but will probably never be able to.  I don't feel ready to give up my mobility entirely, but then I wonder if I ever will do.  I doubt it.  A part of me knows that she's right, but another part of me wants to rebel.  Then I ask myself if the consequences are worth the rebellion and they're obviously not...

I had wanted to try to get some level of fitness back.  How am I supposed to do that now?  I asked the doctor about getting back to supervised exercise at the gym and she told me no way.  She said that in her opinion the only place that it's now safe for me to do any kind of exercise is in hospital where there are resuscitation facilities and medics on hand, not just physios.  I can't see that happening.  Yes, I went to pulmonary rehab at the hospital, which was good, but there's a waiting list and I can't see that I'd be able to take a place permanently.  I've emailed the Charge Nurse on Ward 29 to ask his opinion, but I think he's away at the moment, and I'm probably going to have to talk about it with my consultant anyway.

It's a lot to take in.  It feels like the boundaries of my illness have changed again ... more obviously dramatically than anytime before, or anytime I remember.


georgina said...

Oh becky,
how totally awful for you. I cannot even begin to imagine how you start to process that information let alone then work out what to listen to and follow as sensible and what to ignore so you have so quality of life.
My heart goes out to you,
I just cannot imagine how you are feeling at the moment xxx

BeckyG said...

Thank you, Georgina. My head's all over the place with this so your support means a lot. I think I need to talk it all through with my consultant and see what his opinion is too, but somehow I still need to process it in the meantime.

Thanks again.

B said...

That sounds awful Becky. And without any exercise surely everything is just going to get worse, making this a self-fulfilling prophecy?

I'm really, really sorry to hear things have got this bad :(

Tequila Sepulveda said...

Losing mobility sounds unproblematic to those that still have 100% ability to get around. But once you have to start using adaptive devices, things change quite a bit.

I started with a cane. My refractory asthma had limited my lung function to 38% of normal, and though I could move, it wasn't very fast, and it wasn't something I could sustain. Using the cane actually made ME slow down a bit to better handle the stress of movement.

Eventually, as the lung disease's degeneration progressed, I started using a walker, mostly because I could not CARRY anything, like my laptop that went back and forth to work with me.

Once I got the cancer, the treatments sometimes made even the use of the walker tough to handle, and at my PC suggestion, I got a scooter, so that I could do things like go to the zoo, go shopping (think IKEA) and not have to have anyone push me about in a wheelchair.

I'm still fighting the fight, Becky, trying for all I am worth not to have to rely SOLELY on that scooter, but it does become harder. Yes, you have to take into consideration the consequences of NOT using it.

But, you know, Becky, you strike me as someone who will hash it all out and come up with a solution that works for you. As Georgina said, quality of life is a HUGE consideration.

Good luck, my friend. {{{hugs}}}

bex matthew said...

hi becky, my name is becky too lol, i have brittle asthma, osteoporosis and benign intercranial hypertension, and have just been diagnosed with esophagitus coz of the steriods i have been taking for nearly 18 yrs, i know losing independance and mobility is hard all to well, and i sturggle a lot, but about 8 yrs ago i couldnt walk without my asthma going into an attack or the osteoporosis making my knees and ankles lock, i had resign myself to the fact that to get my independance back a tiny bit i had to get a mobility scooter which has been a huge help, i have a wheel chair as well if i go out in a car and my mum has a stair lift we had put yrs ago b4 i moved out, i have my sister living with me in my ground floor flat as my full time live in carer coz my attacks r so sudden sometimes and i have collapsed b4 now and stopped breathing, i used to live in leicestershire and if i had stayed there would have been ded yrs ago, in fact 12 yrs ago i was given 2 yrs to live coz off how my lung capacity was going, within 6 months we moved to lincolnshire to a seaside place where although i am still very very ill i am still here, i know its upsetting but i laugh or make a joke of things a lot coz if u dont u end up crying, 1st time coming out of intensive care back onto the respiratory ward at lincoln hospital i just laughed and said c i told u i would b back, cant get rid of me that easy, they thought i wouldnt make it

BeckyG said...

Hi Bex, Thanks for your comment and welcome to my blog. Sorry to hear that you've had such a rough time, but I can relate to what you have told me. Severe and brittle asthma is so little understood either by medics or the wider world that it can sometimes be quite a lonely experience, so it's good that we have the internet, and blogs, to reach out to one an other.

Take care,