I wanted to let you know how things are going with my health right now, as there's quite a lot of things happening!!
I've been having increasingly worse issues with my blood pressure and tachycardias/palpitations recently and it had started to get me worried, plus it's limiting my mobility even more, and making me more tired ... so I started looking into it online when I was able to do some reading. My symptoms point to my probably having Postural Orthostatic Tachycardia Syndrome (POTS). Since I wasn't sure if I was just overreacting, I decided to do some tests on myself before talking to my doctor (it's not easy to get hold of her even on the phone). My dad has a small blood pressure machine, so I was able to do a 'Poor Man's Tilt Table Test' on myself.
Often a proper tilt table test will be done on someone where POTS is suspected. The test is generally done in hospitals and involves being strapped into a table and gradually raised, whilst monitoring your blood pressure to see if it changes dramatically when your posture changes. For most people, the body naturally copes with posture changes without it affecting blood pressure. For those with POTS, it doesn't, and the blood pressure rises, along with the heart rate. For people with ME, tilt table tests can be quite dangerous, hence why it's a better idea to do the 'poor man's version', which is basically taking your blood pressure after time spent in different positions (lying, sitting and standing) - There is information on this on Jodi Bassets Hummingbird site. If you go to the Testing for ME page, and click ctrl F to use your browsers search function and search for 'Tilt Table Examination', it describes the poor mans test in detail.
I really wouldn't advise doing this test without a doctor present - it was pretty gruelling to be honest ... but for me it was easier because my access to doctors is so difficult. I think over the last few months I've gotten more and more frustrated with the meagre level of care I've been getting for so many years, and becoming more and more desperately in need of help. It's got to the point where I know if I don't push to get what I need, in whatever way I'm able to, things won't ever change and I have no chance of things ever getting better, and a very high probability that they'll get worse! So I had to ... have to (!) ... do something!
Anyway, the poor mans test showed that something is most certainly not right, and although I'm not a doctor, (I was a nurse before my ME became severe) I am fairly certain that POTS is an issue for me, though whether anything else is going on I have no idea.
So, last week, I finally managed to get a phonecall from my doctor, ironically for something small I needed a consult for. She 'can't' do home visits, and I can't get to the surgery unless it's so urgent there's no other choice, so for me a phonecall is about as good as it gets. (And yes, I've tried other doctors - she's the best of the ones I've tried. She does at least seem to accept I am genuinely ill ... but there are constraints on her from the surgery to not do home visits unless the patient is terminally ill with cancer, basically.)
I didnt really tell her anything new as such, other than the tilt table results, since i gave her an up to date written list of my symptoms very recently - but she must not have read it well enough, because she seemed totally surprised when I told her about the cardiac symptoms I've been having, and the fact that I have now been having severe gynae issues (bleeding almost constantly) for around 3 years now. I guess she just presumed that had cleared up since I haven't talked to her about it in like 2 years. (Funny that, how when you don't see a patient, you don't know what's going on in their lives. )
Last time we talked about it I had a gynae scan & because of the risk of endometriosis etc (I have Poly Cystic Ovarian Syndrome - PCOS), these are meant to be done at regular intervals, so she insisted on a scan as soon as it could be ordered, & a specialist consult to see if we can get things under control. So, that's appointment number one that I will have to go to in the near future.
She seemed very worried indeed about the blood pressure/tachycardia issues, and the results of the tilt table test. (I'm still seeing irony here, since I've told her about tachycardias/palpitations on at least 2 occasions before, sigh. It's frustrating to feel like I have to figure out my own health problems because no-one is doing it for me ... but I guess that's life for so many ... too many ... people with Myalgic Encephalomyelitis in the UK right now.)
So - that's appointment number two that I have no choice but to attend in the near future. Honestly, I'm so stressed about having to go out ... and the possibility of not being able to do everything in just one visit, too! I know how much my recent dental visit took out of me ... I'm still not back to where I was before it, now, months later!! I'm so scared of what result these visits could have on my overall health and disability - but they're unavoidable because logically thinking, the results of ignoring these problems could be just the same, or worse, for my health. These new appointments will inevitably not be as well-organised as my dentist appointment was, either, probably meaning much waiting in hospital waiting rooms, sitting up (horrible in and of itself), and of course there'll be all the stress of trying to introduce a new doctor to the medical mammoth that is ME. And even more worrying is the inevitable crash afterwards, and even the possibility of a full on relapse from so much activity and stress at a time when I can already barely even make it to the bathroom 2-3 times a day!
Of course there are also worries about the results of the tests, but I've been living with bad health for so long, that somehow doesn't seem quite so scary. Funny, I'm more worried about my ME getting worse than I am of a potentially serious cardiac disorder, for instance. Says a lot about what ME has been like for me, really, doesn't it!
As the first step in seeing what's going on in my body right now, my Dr sent one of the practice nurses here to take copious amounts of blood from me this week, to send off for various tests. The main thing she was testing for was vitamin D deficiency. (again this was something which I was concerned about, researched, and then talked to her about last week) I've been concerned for a while that I might have a severe vit D deficiency due to being housebound for 8 years, & rarely even seeing the sun. I have a lot of symptoms of it, and it can lead to some quite serious issues, particularly with your bones (Osteomalacia) which could explain some odd symptoms I'm having, and some of my pain and muscle fatigue in general. It seems insane to me that doctors would not routinely think to check for this deficiency in patients they know are bedbound, considering the serious affects of long term deficiency - but there we are!! I would never have thought to look for it unless I'd researched the symptoms I was having and tracked it back to it possibly being osteomalacia. Or then, perhaps it's only ME patients with whom they are so lax? Who knows?!?
The tests came back a few days later, and yup, I'm quite severely vitamin D deficient. (It's worrying but it also gives me some hope for the future (though hope is kind of scary in this instance - there's so much at stake if these things don't make any real difference), that actually this is something treatable which we can hopefully reverse to some extent and so reduce my overall symptoms & severity!! I haven't had something like that to really hope for in a long time.
So, that's where I'm up to right now. Waiting for a stack load of appointments and wondering how the heck I'm going to deal with it all ... not to mention trying to get together a good lot of information for the cardiologist since he may never have dealt with someone with severe ME before! (Or worse, may not 'believe' in ME as a physical illness!!) I want to be prepared but I'm half killing myself trying to read and decide what they need to see, etc. Fun.
Honestly, I feel like over the last year or so of getting more involved in the ME 'world', all I've been learning is how little I really know about ME, (even though I'm aware I know more than a lot of people who have only been given the CFS diagnosis when they really have ME, and have learnt so much just through living it for 15 years!) and how much more the UK health system COULD have been helping me, in very real ways, were they not so focused on treating it as all in my mind, and instead were using international research which proves otherwise. I feel so angry ... and so scared. I feel that had I known what I am starting to know now, 15 years ago, it would never have come to this ... completely bedbound and needing to see a cardiologist! What would have happened if I hadn't done the research and discovered that my symptoms fit with Osteomalacia and asked the dr to test for vitamin d deficiency? (Lynn Gilderdale, for example, suffered many broken bones because of this very issue, including a broken back!!) If I hadn't got so desperate and started reading more, and fighting harder, what would be happening to me now things have got so bad? What has already happened that should not have had to?? How dangerous could that be for me?!!? I feel so alone with it all. I wish I had a doctor to do the research FOR me, because I'm really struggling to find out everything I need to know - because I don't have anyone I can trust to do that for me. I understand now why some people end up suing - something I would never have even considered before, for many different reasons.
A friend, Dominique, is really inspiring me to learn to live better within my 'energy envelope' and not to push myself so hard. She's doing it tough learning to do that, and I find it really inspiring. (I doubt she realises that!) I hope I have the guts to do the same, but I'm finding it honestly a rather terrifying prospect. Kudos to her!