It has been a while, my apologies. December went passed in a haze. I had a lovely Christmas and New Year but it was very quiet. I have been extremely weary again following this latest bout of croup in November/ December and as a result have only managed to do a small amount of socialising. The rest of the time has been sleep, cheese and plenty of time on Martha the Magic Machine (aka CPAP breathing machine)!
I have been to see my specialist this week and am due another smorgasbord of tests. I have been having problems with my heart rate beating a lot faster since my first bout of croup (the second bout didn’t help matters). My consultant thinks that my heart rate reset itself to a higher rate to account for how poorly I was and has not been able to reset back. At least I know why I am so ridiculously tired my body is working overtime!
Apart from that I feel like I am in a state of hibernation, I feel unable to do very little and at the moment I am just going with it. I have been advised due to how severe the bugs, colds and viruses are at the moment to limit how much I go out to protect myself.
As a result, I have tried to motivate to do some jobs round the house, to do something other than watching TV but it doesn’t seem to be happening. I have tried to be easy on myself and accept that this is the status quo and that my energy will hopefully return and all the nasty bugs about will move on.
Much like everyone else, January has brought with it the thoughts of trips away. We have just booked a little adventure in June to Puerto Pollensa. A place we have visited before and loved. We have gone into a disabled friendly hotel (that also happens to be beautiful, who says accessibility has to be ugly). The area is really good for the wheelchair and getting about. So, we are hoping it will be easy and relaxed. It’s definitely what we need.
I have got my repeat bronchoscopy coming in the next 6 weeks (well the day after my birthday as it turns out). Happy birthday to meeeeee! I haven’t had one done since I was diagnosed and I was so poorly afterwards, spending a week in hospital with pneumonia. To say I am dreading it would be an underestimation but they have to repeat them to assess the deterioration or if Magic Martha CPAP is holding off further collapse. Not that there is much left for me to collapse at 95%.
I have chopped all my hair off (well someone else did!) I had a nice pampering session and got rid of the mane. I was hoping to donate it again to the little princess trust who use donated hair to make wigs for kids going through treatment for cancer and other illnesses. I have done this before and was hoping to do it again. Unfortunately, the massive doses of steroids I have been on for the croup had wrecked my hair and it was very brittle and in bad condition. I hadn’t helped matters by setting it on fire whilst I was lighting a candle either! Burnt hair does not smell good! So, a snap decision was made and the mane was no more.
It feels nice to be in a new year although I miss Christmas, long lie ins and having my husband about every day. Let’s hope that 2020 brings all us TBM warriors a bit of peace and periods of relative wellness. For me, and I know many others, the latter part of 2019 was a struggle, I was relieved it was over.
I had some huge personal achievements for last year; being able to go to my take that concerts, holidays with family, a new treatment called Kore Therapy which is helping my body strengthen and realign (although my lungs are left well alone). I had some short pieces published from an online course I did, and my blog and story featured on the Cure TBM website. There have been some awful moments too but I’m not going to dwell on them. I’m just going to concentrate on what life has let me claw back and the sense of achievement and happiness this has brought.
I desperately want to have some adventures this year, use my brain more and start to enjoy life around all the medical tests, treatments and illnesses so am looking forward to all 2020 has to offer. Until next time… (I promise not to leave it so long).
Life, lungs and a whole lot in between 