Warning : this may contain (a lot) of rambling.
I am fighting to keep my life as normal as possible but the decline, I feel the decline.
But is it all the AVM? I have nowhere to turn, no real information and I am left in the dark. No wonder I am turning into this hypochondriac that I don’t like.
Doctors will either look at me with pity (I think they intend empathy but pity is what comes across: poor you, so sorry blah blah) or they are like so what? nothing wrong here. Admittedly, the so what? are usually paramedics, nurses and general practitioners not the specialists but still, when I have new symptoms they are my entry point, got to deal with them all the flipping time.
I have had 7 courses of antibiotics for UTI with haematuria from October to January. I have made an appointment twice to discuss taking prophylactic antibiotics as suggested by one of the doctors. No joy : first time they didn’t call me for the appointment, second time they sent me a text to say that apparently my number was not recognised (but the text was ok?). When I go to reception with my bloody urine sample, they tell me that I should wait for the doctor to ask for it because UTI are considered minor. Every time, I have to explain that I am different, that I ended up a week in hospital with urine retention last time it was not treated quickly enough. I don’t want to be the drama queen at the counter.
I have reduced mobility due to blood supply to my legs being “diverted” in my abdomen. I am walking less and less, I am limping more and more. I am putting weight on due to the lack of exercise and losing muscle tone. Nobody can tell me if exercise is good or not. Should I push through? Would it actually make it worse because my heart has to pump more and exercise won’t change the fact that I am not getting the flipping blood to those muscles. Plus I feel dizzy when I do too much and get weird sharp tingling in my face and limbs. Not mentioning that to anybody either. They are going to tell me it is stress again.
My vascular surgeon is guessing half of the time. He said that he doesn’t know, not enough cases like me. The only thing I can do for you, he said last time with a sorry smile, is giving you compressions stockings. Oh by the way I have been waiting for my first embo (not the last) for over a year. They want to reduce the strain on my heart before it can’t cope anymore. Lots of “we will try” and “we’re hoping” and “risks” in that last letter but what are my choices?
Plus, I am exhausted. I still work full time, no choice, kids at school/uni. I do very little apart from work but I feel lazy. Am I lazy? Cardiologist said my heart has to work more than the average for everything I do and my reserves get depleted. My brain is so foggy half of the time. 2 masters, 1 postgraduate degree, 3 languages and I can’t retain even the simplest information anymore. Is it my age (49) and the pre menopause? Is it the flipping AVM?
In addition to my regular pain, my lower back has been hurting since the end of last year. Is it the AVM pressing on it? Is it the lack of activity/muscle tone and weight? I injured it two weeks ago and I am signed off work for another week. What can I do to help manage it all? Is it something else all together because I have pain around where my right kidney is too? I am also being sick in the morning on a regular basis ( I have always been but it is much worse) and I am nauseated during the day. I have now stopped eating in the evening from 8pm to 10 am in the morning, that way I am not sick and can have a more or less normal morning. Managed to see the GP for that and waiting for a scan (3 months waiting list maybe?)
Don’t get me started on pain management. Tramadol and codeine make me sick. Naproxen and 16mg codeine is literally all I can stomach. No alternative given. I am lucky that my pain is sporadic rather than continuous and only bad 1-2 days a month during my cycle. But sometimes it’s very bad, oh my god, it’s so bad the maximum dose of Tramadol or codeine won’t touch it. I have been so close to calling an ambulance for morphine so many times. The only thing that stops me is that I know it will not last more than 4-6 hours at a time. I can’t face being like that in the corridors and waiting room of an hospital. So I hold on and sometimes I cry.
The latest thing is , I have had vaginal bleeding for the last two weeks, admittedly in various form and degrees and I don’t know if I should call who to call. I don’t want to bother people for no reason and make a fuss when I am clearly not haemorrhaging. I am fed up of being treated like a nuisance. However, I worry.
I don’t know anymore. I have been declared fit for work and I don’t feel fit for it. I feel like I should have time to look after myself properly and that I shouldn’t feel like a burden to all including the National Health Service. Some days I say come on Nathalie, don’t be a wimp, they are people far worse than you. Some days I am exhausted with the questions and lack of answers. I have to make one appointment for each thing with my GP and it is a nightmare. It is also a nightmare because of these things by themselves are minor and can be explained away. Story of my life, why I was not diagnosed until I was incapable of peeing , bleeding in hospital. They are only looking at one thing at a time, not the big picture. It makes me want to give up.
Sorry for rambling. Just needed to get it out.