Am I Invisible???

What are you meant to do when you're bedbound and your doctor is ignoring your attempts to contact her?

6 weeks ago, my doctor called me with the results of some blood tests, and about some serious cardiac & gynaecology symptoms I've been having. It had been pretty hard to get in touch with her at the time. My surgery refuses to do home visits for anyone unless they're cancer patients, because they don't have the resources. It's a common phenomenon in some poor inner city areas in the UK especially for people with illnesses like myalgic encephalomyelitis ... but it makes life pretty difficult when you can't leave your house to go to the surgery, and even phonecalls with the doctor are difficult to get about M.E. related issues. Eventually I managed to get a phone consultation with her about a minor infection, (how ironic is that when I have so many more serious things happening??!!??) and I took the opportunity to bring her up to date with more of what was happening with my health, which had led to the blood tests, and her phonecall with the results.

She was apparently very concerned at my vitamin d levels. I'm severely deficient (< 5!) - which is bad as it's probably been going on for years (I've been housebound for 8 years now) and my bones are likely in a serious mess as long term vitamin d deficiency causes Osteomalacia, which is essentially adult rickets. It's also likely that the deficiency is adding to my levels of illness in other ways, such as increased fatigue, pain, and muscle weakness.

We also talked over some serious cardiac & gynae symptoms (See my last post about these issues for more details) I've been having for some time now. She said she was referring me to see the cardiologist & gynaecologist specialists. She said that she would get the paperwork out to me, which I need in order to actually book the appointments - you don't even go on the waiting list until you phone the appointments office with the referral details. She said she was also going to try to get me booked in for 24hour cardiac monitoring before my cardiology appointment so that I'd have that information to take with me.

Additionally, she said she wants to refer me to specialists for bone scans etc because of the vitamin d issue, but would wait on it till I've seen the cardiologist & gynaecologist, because they are 'urgent' referrals (her words!) and I will only be able to cope with so much at once, physically speaking - any appointments outside the house are really major for me. She said that she was going to work out the dosage of vit d i would need (Possibly will need injections) and would call me the next day.

Now, here's the rub. That was 6 weeks ago, as I said, and I've heard nothing from her since, (despite phonecalls from me and my carer to the surgery, and an email from me to her work email address) apart from an acknowledgement that she had received the email, and a promise to reply within 2 days. That was a week and a half ago now!!!

She didn't even send me out the paperwork for the referrals, (though she did put the referrals through) despite phonecalls asking the receptionists to look into it for me, meaning that that's 6 weeks these so called urgent referrals have been put off. I finally received the cardiac appointments paperwork this week - we think the practice nurse may have posted them out - so have been able to go onto waiting list for that apppintment. However, there's still no sign of the gynae paperwork so I can't even get onto the waiting list. As for vitamin d, absolutely nothing is happening, which, considering how freaking worried she was, seems pretty outrageous to me!!!


I really, really don't know what to do now! I feel like I should be very angry ... and I think I am, in some part of my mind ... but mostly I feel really really upset and am losing hope that anything can ever get better with this kind of situation. Hope that I had only just begun to gain back after so many years of being chucked around by the NHS, and losing trust in them to the point that I have rarely seen a doctor over the years I've been severely ill. I really thought that perhaps this doctor would be the one to care enough to give me the treatment any other person with any other illness would automatically get. I guess I was wrong.

Every time I think about all this, I'm tearing up (unusual for me!) and honestly, feeling quite scared to be so alone with such scary symptoms. The cardiac problem especially seems to be getting steadily worse. When I'm upright for a while, like when I have a shower (sitting in my shower chair) my feet are now going so grey/mottled/blue that it's kind of freaking me out - watching that getting worse week by week is the kind of visual aid I can really do without!!! It feels sort of claustrophobic - like I'm trapped in this crappy situation, because there's nothing I can do to make her do the things she promised to do. Nothing I can do to improve this situation. I don't have the energy to fight any harder. :(

I honestly feel that there is no way that this doctor (who's very nice, by the way) would ever treat someone with a different, more accepted illness this way, and it feels so completely unjust and unfair. But there are few options for someone like me in the area I live. It's really hard work to stop myself from falling into hopelessness! I want to be happy and I work to be happy - but this issue makes that fight much, much harder! I feel utterly invisible ... and I'm just so, so tired of having to fight for the simple right to be treated like everyone else.

photo by slurpiesandstraws ☮	via PhotoRee

..... Read the continuing story in this related post : Letter to my GP | The Thing With Feathers

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Am I Invisible???

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Cardiologists, PCOS and Vitamin D Deficiency

Hey everyone,

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, she's referred me to a cardiologist - massive surprise as that means she's actually taking me seriously - a novelty in my experience!! She's going to try to get me set up for a constant cardiac monitoring (I presume for 24 hours) at home, too, so that I'll have the information already available when i see said cardiologist, which will mean less possibility of any hospital stay, even as a day patient. I really hope she does get that set up as it'll take a bit of the stress out of this for me.

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.

The doctor wants to refer me to a specialist about the vitamin d deficiency, too, and get a scan done to check my bones ... but she's willing to wait on that until the other 2 more urgent things are done, so I don't have to take on any more all at the same time, thank god!! In the meantime, she's going to prescribe vitamin D - she's trying to figure out how much I'll need. (I was already on basic grocery store supplements so she needs to work out how that changes the amount I will need, shown by my blood results) I might well need it in injection form, but she might also start me on oral treatment to see how I go on that, and if it doesn't work well enough, bump me up onto the injections. I should find out over the next few days how she's gonna go with that.

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!

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Cardiologists, PCOS and Vitamin D Deficiency

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