Skip to main content

A Never Ending List..

Last week I had a follow up appointment with my Cardiologist, he told me that the results of my Tilt Table Test showed that I do, in fact have P.O.T.S. Which stands for Postural Orthostatic Tachycardia Syndrome. It means that there is a drop in the supply of blood returning to the heart & brain after a small amount of activity, such as being on your feet for a few minutes. The symptoms for me consist of dizziness, sweating, & palpitations, which I have been experiencing for a while now and it was that which led the Doctor to test for P.O.T.S. He told me before the results came back that it was likely I did have the condition, based on my symptoms & the fact that I also have Marfan Syndrome, which is something that often goes alongside other health problems, such as P.O.T.S, so it wasn't a complete shock to recieve the diagnosis as I was sort of expecting it, but I hadn't prepared myself for how I would feel once I'd been given it. I felt overwhelmed as I left the clinic that day.

It was a scary prospect to now have another illness added to the list, an illness that wasn't going to go away & a list that was never ending. Having Marfan Syndrome puts me in a comprimised position because it means I am at risk of developing a number of secondary conditions, some of which I have already been affected by. As you can probably imagine, I felt like this was another set back, it was another issues that I was having to contend with & the thought of it dampened my spirits. I was lost in thought for a while as my mind wandered. I wondered how long it would take for the next issue to arise and I worried about how I will cope in the future. The "good" thing about P.O.T.S. for me though is that it can be treated. 

Postural Orthostatic Tachycardia Syndrome isn't as serious as it sounds but I do need to take medication for it. The Cardiologist explained to me that nothing dangerous would happen if it wasn't treated but the problem & the symptoms won't go away without medication, which has now been prescribed. I'm grateful that it can be treated but I'm annoyed that I now have to find time in my day to squeeze in another tablet. Unless you take numerous medications then you won't understand how much of an annoyance it really is! But I suppose I should appreciate the fact that my problems can be treated with medication, others may not be so lucky and I will think of that next time I am angry about it. 

Now that a bit of time has passed since I was told of my new diagnosis, I think I can now say that I feel less dispirited than I did last week. In comparison to actually living with Marfan Syndrome, having P.O.T.S. isn't really a big deal. Yes, it does cause some unpleasant symptoms but so do the rest of my problems, so what I'm trying to say is, one more small issue doesn't really change things a whole lot, because even without P.O.T.S, I still have numerous health conditions to deal with. And to be honest, I don't think I'm badly affected by P.O.T.S, (Your going to get sick of reading that word) I would say it does make things difficult for me, but I've spoken to people on support groups who have it so bad that they are in a constant state of dizziness & are fainting daily, so I guess in some ways I am more fortunate than others. It's not always easy to remember that when you have a "Health Problem List" as long as mine though... x

Popular posts from this blog

I'm just gonna start by being really honest with you all. This year has been rough for me. Really rough. My Marfan related health problems have taken their toll on me and I feel physically exhausted. I feel emotionally exhausted too, but I don't like openly admitting that. I don't know why, I guess it makes me feel ashamed as I sound weak. I don't want sympathy, I just want to express myself. If you've followed me for a while, then you'll know that I already have various medical ailments mostly as a result of Marfan syndrome. I live with chronic pain, PoTs, a complete bowel prolapse, and numerous other problematic issues. I was just about managing to cope with all that but then Marfan syndrome started affecting my gastrointestinal system, and I've lost too much weight. I've been slim for a few years now, but not this slim. I'm just about sitting at 6st at the moment, which is far too thin for my height. I've been referred to the dieteics team and

The Daily Realities..

Over the last few years, I've been very open on Blogger about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my every day life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many Marfan folk whose slim stature is also the recipient of such unwarranted attention.   Hey guys, here's a blog written by me, published by Marfan Trust. The Critique of my Marfan Physique.