Sunday, August 28, 2011

Floppy Clocks

A week ago I went and had an ultrasound done on my stomach. As most of you will know I have had ongoing stomach issues that contribute largely to my illness. The scan was to check that I don’t have an aortic aneurysm or tumor etc. The trip out to go and get the scan was more terrifying to me than the possibility of them actually finding something scary. In the end a 15 minutes scan took 5 hours because in order to leave the house I needed assistance from an ambulance (they physically had to carry me back up the stairs to my apartment, four of them, one on each limb). Because I wasn’t an emergency I basically had to take the ambulance whenever they had one free … so they picked me up 2 hours before my appointment initially and then came to get me 3 hours after my scan was done. It was a very very long and exhausting day, but I am proud of myself for getting through it. My Dad came along and acted as my voice which was a huge help. Anyway … the only thing the scan showed was some cysts and vascular calcification on both kidneys. I have a phone appointment with my Dr next week to find out if there are any implications of this. From what I have read online it’s no big deal really. So the mystery of what is causing all the stomach pain continues unfortunately, but at least I don’t have something that is going to kill me!

The week following my appointment I have been pretty badly crashed although not as badly as I had expected. I hate times like this when all you can do is nothing at all … rest rest and more rest. Five days without a shower (again), no reading, very little watching TV or being on the computer.
The last 2 days I have finally bounced back so have been trying to play catch up on everything ….
I realized this morning that even on my better days it’s still all about playing catch up because if I shower today then I will need total rest for a few hours afterwards and then will only be able to do small essential things like eat and probably watch TV … so the other stuff I’d like to do today such as put my clean laundry away will have to wait till tomorrow … and then it’s the same scenario all over again … so everyday is catch up!! It’s like we have to operate on a Dali floppy clock … we should start a ME/CFS time system, one hour for us equals 24 hours for ‘normals’. Hahahaha

On a parting note I just want to say that I am excited because I have now receieved all my supplements to start on the Simplified Methylation Protocol. I will most likely post about this next time and explain what it is and how I am going. It’s good to have something to feel excited about !!

Thursday, August 11, 2011

Busy busy busy

It’s been an outrageously busy time for me. Some good and some not so good. A good bit was my birthday! I had been dreading the day as it approached because it felt like it marked a year wasted, a year of being totally housebound and lonely etc, but when the day finally arrived I was pleasantly surprised by long missed feelings of genuine joy and contentment. I received numerous cards, gifts and well wishes and it made the day feel like a birthday should. It inspired me to stop moping around and get on with whatever I could. So … busy busy busy.

I have been planning on moving house since last year because my current home is up 3 flights of stairs and it’s impossible for me to navigate them, so I am trapped. Before I can even start to plan for this I have some things to take care of … and now they are all nearly done!! I had to do my tax so I know exactly how much money I have to play with, I had to do a few minor fix it jobs such as touch up paint and replace a skirting board and a light fixture and I had to get some wooden shelves ripped out of my garage because they had been attacked by white ants. The jobs are now 95% done. Yah for me!!! My Dad helped with most of work and getting it all sorted was a far bigger task in my mind than it reality. It was a good lesson.

During all this I finally had a visit from a podiatrist to look at my poor feet. The good news is that I am not in any immediate danger of losing toes. She said that the lack or circulation is temporary and intermittent so as along as I make an effort to keep the blood flowing then everything will be ok. She suggested some simple exercises I can do whilst sitting and the added benefit is that by doing these my balance should also improve. The not so good part was that she said the burning pain is neuro and not foot related as such so there was nothing she could do.

The bad stuff is made up mostly of frustrating situations. Since getting the test results for Solvents toxicity I have been trying to find a Doctor who has some experience in this area who will consult with me. It has proven to be an impossible task because I am housebound. Legally a Doctor can only do phone consultations if the patient has first been into the Doctors office for an initial evaluation. The only other option is a Doctor who does housecalls and it seems no one with any experience in anything of value will do this. So I am stuck … The toxic exposure occurred in my old work place so I need to lodge a Workcover claim but I cannot do this without a Doctor providing an official diagnosis and I also wont be guided/treated by someone with adequate knowledge in this field. Really frustrating.
The other bad thing looming is that I need to go and have a scan done. My stomach issues still have not resolved and I am now concerned that perhaps I have an aortic aneurysm. Leaving the house pretty much guarantees me a major crash but I simply have no choice. I will be speaking to my regular Doctor this afternoon about this so I will post more when I know more …

Busy busy busy!