Today is Friday the 15th of January. On Tuesday I finally had my urodynamics study – unfortunately it only left us with more questions and means more tests on the horizon.. I have to say it was the most undignified test I’ve had to go through yet! It involves sensors being placed in the bladder and *ah hem* back passage. They are testing which muscles are working as they fill your bladder with saline and then ask you to pass what you can. After the sensors/tubes had been placed, the nurse (who was so lovely btw) brought out the bag of saline. I think my face must have given away my terror despite the mask because she instantly reassured me she wouldn’t use it all – spoiler alert, she did!
As they fill your bladder they ask you to say how you feel – when you feel you need to go to when you’re bursting etc. She explained that when I said I was bursting they would stop the test. It took me a long time to feel anything and even when the entire bag had been pumped into my bladder I definitely didn’t feel desperate. I was then asked to try and empty my bladder (tubes still in place) and I was able to empty less than half of the volume that had been put in. The test did show that the correct muscles were working, but they were not working effectively or were possibly out of sink with the other muscles necessary to wee. This is very good in a way because it means my bladder hasn’t become paralysed which was what the doctor was worried about, but there’s definitely something else going on so I have to see a specialist consultant and have more tests (involving cameras..). I’m not sure when this will happen though since the covid restrictions have become a lot tighter this month.
I have been given an appointment with cardiology on Monday to test for PoTs. I’m feeling happy but also a bit worried about this. PoTs is something very common in people who have EDS like myself but it isn’t very common in the general public. I have all of the symptoms of PoTs (I’ve also learned that it can cause all of my GI symptoms – this would also explain why none of the medications my GP has given me to try and help with my GI symptoms have not helped at all). So, I’m feeling positive that I might get the diagnosis and get some real help to feel better, but I’m also a bit worried about how bad I will feel during and after the test since it’s designed to set off PoTs symptoms. But on the flip side I’m also terrified that my body will behave itself during the test and the Dr will think I’m faking. I think it’s awful that so many people with chronic illnesses or invisible disabilities are made to feel that it’s all in our heads or worse, that we’re making it up on purpose to get pain medication. Like most chronic illnesses, my symptoms tend to fluctuate. This can be due to the temperature, how active I’ve been, how much I’ve eaten and it can also be totally random. I’m praying that my symptoms will be visible during the testing so I can get the right help.
I’m also really excited because I’ve booked an appointment (virtual) with a private physiotherapist who also has EDS! She was recommended to me by a friend in our support group because she was actually able to stop her shoulders subluxing (partially dislocating) when she raised them above her head. Im’ very hopeful she will be able to help me with my dislocated shoulder and some of my other particularly loose joints.
Apart from feeling rubbish physically, I’m actually feeling a lot better mentally about this latest lockdown. I’m actually getting used to being in the house all the time and am getting a lot better at staying in touch with family and friends virtually. I think it’s helped that my dad has been working from home again so the house hasn’t been empty in weeks. And, even though it’s hard, I’m grateful that the lockdown has become a lot stricter. I was really stressed about people flaunting the rules and I didn’t feel safe. But now that everything not considered essential is closed and there is a travel ban in place (it has also been made law that you cannot leave your home except for essential purposes and that employers have to facilitate home working if at all possible) I feel that going for the food shop or going outside for a walk is a lot safer now that it’s much more difficult for people to meet up and break the rules. I’m still finding it scary to leave the house because I haven’t been out in so long – the hospital was extremely anxiety inducing, especially since my partner wasn’t even allowed in the building – but the more the COVID numbers drop the better I think I’ll feel about it. The vaccine has also been being distributed which is so exciting! I’m desperate to get back to normal life but, overall, I feel that I am in a much better place.
I hope anyone reading this is doing well and staying safe x
Zebra Strong 