Glimpse into defining ourselves through chronic illness

I read some advice recently about not letting your illness define you. This initially sounded logical, and quite a basic instinct. However upon mulling it over, I started questioning the feasibility of this concept, when you are deep in the throws of a chronic condition.

Glimpse into socialising with chronic illness

I had an invitation to join a not to be missed, important and happy family celebration in the form of a high tea at a hotel on Sunday. This posed many problems for my body...preparation to get ready for a fancy tea, a long train trip to get to the hotel, an unknown in terms of the food, and hours spent away from my rest inducing couch. I was however, determined and optimistic to make it to this special do.

Glimpse into the briefest of updates

The redo of my parathyroid hormone level came back on Friday super low again. However, the other levels that usually are effected with this problem were not as out of whack as you might expect. So today, after advice from my specialist, I had more bloods taken, and will test my parathyroid level again...third time is a charm! I have even stumped the endocrinologist specialist! More waiting...more tests...more unknowns...
On the upside, the test for arthritis of the spine came back negative, so that is a win right there.

Glimpse into the chronic illness rollercoaster

I have had another week riding the rollercoaster that is chronic illness and the hunt for answers and treatment.

Glimpse into smiling from the inside

(Published May 6th)
I have had postural hypotension for so long that for the majority of the time, I can be losing my vision or feeling dizzy and lightheaded, and people around me do not know! In the same sense, I am realising that I can be feeling nauseous, aching, and exhausted inside these days, but people will comment on how well I am managing a task, and that I am having such a good day! I give them a shocked reaction, thinking "what?! But I feel gross!"

Today, I am thinking that this may indicate:
1.) That I am getting a little better, slowly slowly! Yay!
2.) That I am dealing with what I am faced with, and learning how to manage my gentle activities without giving into the discomfort (because I am so lucky and have so much help and support throughout the day).
3.) That I am risking slipping back into my old thinking of pushing myself so that I can do the things I want to do, and so the things that will make others happy are done, and I could overdo it.
4.) That my positivity and attempt to keep my attitude strong and happy is starting to take effect.

Glimpse into dizziness; my hypotension progress

I have been playing the waiting game for the past few weeks, so have not posted about my personal health progress lately. I have been monitoring to see if the new medication would assist me. It has been six weeks since I started it so it is still a little too early to tell, but it is possible that I am having some positive effects from it! I have had some bad side effects from the drug; headaches and nausea most days, and trouble sleeping, but hopefully they will ease.

On Monday, I went for another regular check up with my GP. We decided to start the next planned medication; Fludrocortisone. It has been a big decision, weighing up the pros and cons. This drug is a type of steroid, similar to the type that is naturally produced by the body, and it will hopefully assist in increasing my blood pressure. Obviously, this is not something to go into lightly. However, next to fatigue, the light headiness, dizziness and loss of vision that I get regularly is having such a huge impact on my life. I have suffered from chronic postural/orthostatic hypotension for as long as I can remember, but at the moment it is at the point where it is dangerous for me to work or drive, and I am rarely let out alone because my family worry that I will end up in a heap by myself! I have experienced becoming lightheaded and blacking out 3 times when driving over the past year or so, and let me tell you, it is an extremely scary situation to be in, and has made me very nervous (hence I have not driven in almost 5 months!). I miss my freedom, so it is one reason pushing me to take the medication.
When Mum tried to fill the script she was told by the pharmacist that they only get a couple of requests for this medication a year, so don't stock it! So we have waited for a delivery and I will start today.

I am well and truly down in the blue section of this graph!

If I am starting a steroid, I wonder if it means that I can not compete at an elite athlete level now? Damn, and I was so close! ;-) But if the alternative is a full body inflatable body suit (these are actually available!), I will take the medication!

I really do hope there is some improvement with this next medication. If this doesn't help, there are not that many options left for my hypotension, if any at all. The doctor would like me to put on weight, as I have lost some lately due to my illness, and he thinks that will help, but at the moment, that is not happening, despite eating regularly! A moment on the lips, and rarely on my hips currently!! Teflon genetics a friend calls it!!

Apart from this, I am just keeping on keeping on. I have been able to get out and do a few things lately, though my stamina is still not fantastic. However, after such a long road, I am happy with small steps! I am feeling positive, and keeping my eye on the prize!


Do you have any experience with Fludrocortisone? I would love to hear any advice anyone has!