One of those days

Today was D Day.  I was supposed to be on my way to London to receive my mast cell test results from Dr Seneviratne.  Only my period is due and at 8pm last night I started with a migraine and I just knew that today was never going to happen.  After being awake literally all night in excruciating pain, with my skull feeling like it was being eating by rats from the inside out, the room spinning, the sunlight piercing my eyes like a thousand stabbing needles and barely able to keep down my breakfast, I cancelled my train ticket at 7am and left a message for Dr S’s secretary explaining I was too ill to spend 7 hours on a train today but asking if I could have a telephone or Skype appointment instead.  I didn’t think it would be a problem, as I wasn’t going to have any kind of examination or anything, and I offered to pay exactly the same fee as I would if I were seeing him face to face.

She rang me back to say that “no, Dr S couldn’t do a telephone appointment” and I was left in no doubt that cancelling my appointment was in very bad form.  Did I know how busy they were and he now had an empty slot and was out of pocket as he still had to pay the room charge.  I felt like saying that as he makes £810 per night, on top of his minimum of £100,000 per annum as an NHS consultant, I’m fairly sure me cancelling wasn’t going to leave him destitute, even with paying the room fee, but I think if I’d started to get arsey with her I wouldn’t have been able to stop.

I was told the next early appointment (I have to have an appointment before 6pm as the last train taking me the 300 miles home is at 7.30pm from Euston) was in January.  I wanted to bawl.  I begged for an earlier one, so she said she would try and shuffle some patients about and get me in for mid December.  But I was told in no uncertain terms that I was not allowed to cancel if she did.  The trouble is, I have no control over my health.  If I wake up as ill as I have today I’m simply not capable of driving to town to catch the train, then spending 7 hours on the tilting pendolino without puking my guts up.  It’s not like I’ve cancelled to go on a day out to the beach.

Today I’m wondering if it’s all worth it.  The constant fighting to get diagnosed with first ME, then EDS and now MCAD.  When I react to all the drugs they offer I’m just left on the scrap heap anyway, never seeing a doctor from one year to the next as they don’t know what else to do with me.  None of them are interested.  None of them see me as a puzzle or a challenge.  Or even see me with compassion for my struggle and a willingness to help.  I’m just a ‘heart sink’ patient.  A problem.  Or it seems to me in this case, a cash cow.

I was so traumatized at the way I was treated by medical staff early on in my illness history that I didn’t see a soul from 1998-2010.  I occasionally called my GP when I thought I was actually dying, or if I had a raging chest infection which required antibiotics, but other than that I simply couldn’t face the disinterest and sighs of annoyance when I explained I can’t take x, y, or z drug because it sends me into shock (they never believe this, which is why the MCAD diagnosis has become so all important).  It’s the lack of care and compassion that gets me the most.  It’s the heartless secretaries who forget they’re dealing with ill, frightened, often desperate human beings.  It’s soul destroying and the emotional trauma is worse than the physical illness symptoms.  I’m just not sure I can do it anymore.  I just want to curl up in a ball, die, and get it over with.  It’s not like anyone would really notice, invisible as I am.  I’m not sure how many times I can keep picking myself up and putting one foot past the other.  Fighting,  Challenging.  Researching.  And doing it all while feeling this ill.  It’s exhausting and after 20 years I’m really really tired.

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14 thoughts on “One of those days

  1. Judie

    Sorry for your troubles and lack of compassion. You are doing your best to keep yourself safe! Are you a member of inspire? If not it is a free site inspire.com which I have gotten a lot of support from fellow masties. I understand and have the same issue with getting a diagnosis for the protection that can give with dealing with healthcare systems.
    JADY

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    1. bertieandme Post author

      Thanks for taking the time to comment Jady. Yes, I am an Inspire member, just don’t have enough energy to take part most of the time sadly. It’s so important to get a proper diagnosis, especially if you have anaphylactic reactions to common drugs, but it just shouldn’t be this difficult :-/

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  2. Sherry

    I am compelled to reply. I am about to be tested for Mast Cell (have the reqs for blood and 24 urine testing) and am trying to determine when it might be best to go have them completed – you know, gotta do it when symptoms are at their worst, so damn confident building that is, so ridiculously subjective. Your words are my words…exactly. I tell you this simply to begin with the hope that you believe that I do know how you are feeling, I really, really do. For almost fifteen years I have experienced the same disinterest, disbelief, and lack of compassion from traditional western medical staff and docs. For years and years, I have been my own researcher and the catalyst behind much of my specialist appointments and medications. The way you were treated by this doctor and his staff is inexcusable and disgusting. I have been there – close to word for word and action to action. I have shed many tears, sometimes seemingly endless in their guttural pain…and have wished for death – not that I do not love life – I LOVE LIFE – but, like you, am exhausted and have little energy left for prodding on, am primarily home bound, have lost my career, must frequently prove I am sick enough to maintain disability (that I paid into privately for ten years before claiming), and have little, very little social life. I know what it is like to spend an entire night (sometimes many in a row) in excruciating pain, watching the clock, my mind angry then made dumb…and then in the wee hours of the morning – knowing that I cannot make the medical appointment that means more too me than words can express – if it can diagnose me – if it can help me…making that phone call – the one that causes me significant stress before I even dial – what reception will I receive? Its a 50/50 chance, no 70/30, that it will be negative. Are these people tainted? Bored? Heartless? Troubled? Thoughtless? And…no matter what you say, who you say it to, what they say or do etc., etc., – it is a solo flight this journey of ours for validation, diagnosis, and symptom management. We are ultimately on our own when it comes to lifting ourselves up out of the muck. There have been many times that I just wanted to sink into it – float away – be done with it – go on to whatever lies beyond this life…but, quite frankly, I’ll not likely ever take my life – I love too much of this planet and Universe to miss any of it before it is my true time to move on. It is often the people on this planet that are the most…challenging…to put it mildly. So, my goal? Well, I go one bloody minute by minute (sometimes the minutes are broken down into seconds) and raise myself up, out of the freaking muck, all the while knowing it will likely suck me in again – but – for now…I wipe it off and believe and trust in myself. I’m not writing this to convince you of anything – you clearly have a strong handle on who you are and what you want…I’m just validating you by letting you know I get it. I hope I am letting you know that some of us out here REALLY understand. And we care about you…very much. Your posts do the same for me. Thank you. Love and light to you.
    Your friend from Canada,
    Sherry

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    1. bertieandme Post author

      Thanks as ever for a beautiful response Sherry. Being so hormonal yesterday and tearful I really didn’t need that to happen and just didn’t have the resources to cope with it. But I’m sure when my hormones settle down my fighting spirit will return! I wonder sometimes where the compassion has gone from our health-care system, especially here in the UK. It’s just ridiculous that, in this day and age, the consultant couldn’t do a Skype consultation as I am obviously ill and live 300 miles away! There is no need for him to actually see me in person. Like my friend said yesterday too, I’ve paid for those tests so technically they are *my* property and I should be able to ring the lab and just get the results myself!! I can’t wait to get a firm diagnosis, then I hope to just never see a doctor again – they do nothing but cause me stress x

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  3. LilaBiene

    YOU are not invisible to the countless numbers of us that are right there with you, and who are so grateful that you write about your experiences and what you are learning about in this blog. Your sharing of yourself is a huge gift to this world, please know this.
    I wish I could take away your pain. In a very strange way, though, it is what proves exactly what you are made of — steel. Doctors have no clue what it means to be unable to care for yourself in the prime of your life, to lose your career, your house, your loved ones, your life. Similarly, they have absolutely NO CLUE the kind of strength it takes to get by minute by minute, day by day with an elusive series of symptoms that change sometimes hour to hour. I think that if they could comprehend that kind of strength, they could possibly learn to be better doctors. But we can’t change other people, can we?
    I hesitated before deciding to suggest this book to you, perhaps you’ve already read it, but I think it contains a very powerful message about finding the good or meaningful even in the worst imaginable circumstances. It gives me strength on my very worst days. (Viktor Frankl’s “Man’s Search for Meaning”)
    Don’t give up hope. Reset your timetable for your next appointment. Square your shoulders and give the whole heap of it a solid, square kick in the teeth. Get mad. Let it all out, whatever negativity you’re feeling — kick it out of your body like it’s a bad roommate. Then dig in your heels to let whatever it is that it’s not going to win. Not on YOUR watch!

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    1. bertieandme Post author

      Thanks so much for taking the time to comment. Your words mean so much to me. It’s comforting to know that people like you are sharing my struggle through this blog – makes me feel not so alone. I haven’t read the book but will definitely give it a go, thanks for the recommendation 🙂 I’m sure once my hormones settle down (they are all over the place since I entered peri-menopause!) and I feel less weepy my fighting spirit will come back and I’ll give ’em hell! x

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  4. Stevie Godivala

    Jak, what lousy luck, but not unpredictable at all …. If you were well you wouldn’t need to see a specialist. I’m disappointed but I suppose not surprised you were treated so thoughtlessly. That could have and may well still happen to me and I shall be prepared. I know you feel despondent today but tomorrow your fighting spirit will be back. Take care.

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    1. bertieandme Post author

      Thanks for the comment Stevie. I know I owe you an email – am behind as usual! I can’t believe the secretary blamed me for wasting his time and money when I offered to pay full price for a phone consultation! If he won’t do that it’s *his* problem, not mine!! x

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  5. Sonia Johnson

    Hi there. So sorry to hear of your recent treatment. I really wish that these consultants, secretaries etc could just go through a day in our life’s just to know what its like. I very much feel the same as you. I was on the phone yesterday to the consultant that dismissed me at Southampton hospital on the 8th. I was told that the blood test she requested for MCAD could take weeks as the hospital have to wait for a batch of them before running the tests as it costs a lot of money !!!!. As I am now working for the NHS I told her that I will be making a complaint against her for not investigating what my GP had asked for. She was not happy but tough I am feed up with them acting like gods.

    Please try and keep strong honey. I only wish I was nearer to you.
    Love and hugs
    Sonia

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    1. bertieandme Post author

      Thanks Sonia. All we’re trying to do is a get a potentially life threatening disease diagnosed – it shouldn’t be this hard!! Good on you for complaining – I think we all should do that more when we have bad experiences or receive inadequate treatment. I’m still feeling fragile today, but think that’s more hormone related than anything! I’m sure when the Curse is over with I’ll feel stronger again x

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  6. Ella

    Sorry you couldnt make your appointment. Could you go the day before your next appointment ? Then if the night before you got a migrain agaim you wouldnt have to travel as far?

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    1. bertieandme Post author

      Hi Ella

      Thanks for the idea. It’s simply down to money in the end. London is soooo expensive. A decent place to stay near where I need to be would cost another £100-£150 so I’ll just have to take my chances I think!

      Jak x

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  7. Sherry

    I wouldn’t mind pitching in and helping with the hotel bill? It would be a gesture of support; not charity. It is a good suggestion and one I often do for appointments hours from my home. It beats the hellishness of travelling the whole thing in one shot – specially by yourself…when you just cant take another step. Think about it. Let me know. You give so much of yourself for us. I would be honored to assist. Sherry

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