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  • Mrs Chakotay 4:07 pm on January 12, 2016 Permalink | Reply
    Tags: , , , , , head inury, heart disease, hit and run, , Lupus, , , , Multiple Sclerosis, , , physiotherapy, pituitary, Rheumatoid Arthritis, , stroke, thyroid,   

    Budget Healthcare 

    I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

    I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

    • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
    • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
    • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
    • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

    Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

    CFS and ME Comparison Chart

    CFS is Always a Misdiagnosis

    ME v CFS – They’re Not the Same!

    Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

    But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

    To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

    ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

    When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

    But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

    When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

    I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.

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  • Mrs Chakotay 4:23 pm on January 3, 2016 Permalink | Reply
    Tags: , , New Year Resolutions, OneWord365, , thyroid,   

    Whatever is good 

    I decided not to make any New Year’s Resolutions. Inevitably, I do them from a place of being dissatisfied with life and with myself, as though it was all my fault or responsibility, and as though a simple decision to ‘be better’ could make it all come right, but if there is one thing I have learned in the last year it is that most of the things I would like to change are outside of my control.

    perfect

    One of the things I really thought I could control was my weight, but even there it appears I was mistaken. Despite my best efforts, on every type of diet I tried, I have been unable to lose weight and I am convinced now that it is due to Thyroid and general endocrine dysfunction. My metabolism is just shot.

    So it’s not my fault.

    I feel pretty crap about it but I am done with all the self-loathing. I am not in this position because I am greedy or lazy, or stupid, but because I’m ill and that’s not my fault either. I didn’t choose this. Ditto all the rest of the crappy circumstances.

    its-not-my-fault.0

    I will do what I can to make things better as and when I can, but I can’t do better than my best and I need to stop thinking that I should.

    I do know myself though. I know that, no matter what I tell myself, I will feel disappointed when Monday rolls around I will wonder why it’s not better than it is.

    I think what I really need to do is to emphasise the positive things that I am already doing – looking for the good, the beautiful, the worthy in all the dark and hard and miserable, those “treasures in the darkness” I keep hearing about. If I can’t find anything else to be grateful for, I can always list the 5 favourite people in my life. But there is usually a ray of stray sunshine even on the darkest day.

    I have seen the suggestion to pick a word for the year as an alternative to New Year’s Resolutions a few times over the last couple of years or so, and I hadn’t done it before because I didn’t feel very inspired, but this year somehow I do. And so this is my one word for 2016: Treasure.

    Hidden-Treasure

    Treasure seemed appropriate because it’s both a noun and a verb. While I am searching for treasure, good, beauty in everything, I am also learning to treasure the good things I have in my life already. My husband, my children, living in Cornwall, the ocean. There’s lots to be grateful for.

    treasureheart

    I have made lists – things I would like to write about, places I would like to go, things I would like to do, books I would like to read, ad nauseum. But they’re just wish lists, not ‘to do’ lists. If I manage to do any of the things on my lists, it will be a bonus.

    This isn’t me being depressed or pessimistic. This is about me being realistic rather than setting myself up for disappointment. Based on experience, grandiose New Year Resolutions (get healthy/ get thin/ exercise/ whatever) just don’t work.

    gratitude-quotes-finding-the-good-quotes

    But regardless, I love planning. If I could afford to be, I would be a total stationery addict, and even as it is I have a bunch of diaries, notebooks, filofaxes and planners on the go. I can always find a use for another one.

    And so, despite everything I have said so far, I have ordered another new planner for 2016 – the Jump! Parent Planner from Jump! Mag, which is designed to help you plan specific, reachable goals. I won’t know what it’s like until it arrives (next week now) but I won’t be bothered if it’s not helpful. I’ll just enjoy doodling and colouring in it. I’ll let you know.

    It probably won’t be the last planner/ notebook/ diary/ stationery I get either, since if there’s one thing I know makes me happy, it’s pretty paper! Shallow, perhaps, but there it is. I know what I like!

    What about you? New year resolutions? A One Word? What makes you happy? where/ what is your treasure?

    LLAP

     
  • Mrs Chakotay 5:04 am on December 27, 2015 Permalink | Reply
    Tags: adrenal fatigue, , , , , , , , pwME, thyroid   

    Felix qui potuit rerum cognoscere causas 

    The fact that I am up (still up) at 4:25 am, playing with my blog and updating my Goodreads/ Shelfari/ LibraryThing accounts worries me somewhat. Yes, I’m tired, but I’m also so horribly buzzy that I know there is very little point in me going to lie down, because I would not be likely to sleep. In fact, sleep has been elusive for some time.

    Adrenal rushes have always been part of my illness. During my succession of dreadful GPs I have been told that a) I was imagining them, b) that my adrenaline and cortisol appears normal and c) I must have an anxiety disorder. Well pah. I lost faith in the NHS a long time ago. I know that I have anxiety issues, but to be fair they didn’t start until after I became ill.

    Adrenal fatigue/ dysfunction is a known symptom of ME as part of the overall autonomic nervous system dysfunction, but since the NHS are ill-equipped to correctly test for or treat such things, their default position is to insult us. Enough of that. When I can afford to, I will be getting some properly reliable tests done privately. What I will do after that is anyone’s guess. I’m not likely to ever be able to afford private care beyond the testing, so once I actually know what I am really dealing with, I will investigate affordable alternatives.

    Anyway. What I wanted to mention is that this period of insomnia and frenetic activity is somewhat reminiscent of a Bi-polar high, or the ‘manic’ part of what used to be called Manic Depression. I do have Bi-polar tendencies, I am aware of this. My mother has Bi-polar Disorder, and although I don’t believe for a moment that I have Bi-polar myself, I do think I am slightly genetically vulnerable to changes in brain chemistry. I have had these occasional, mild highs before. Primarily, I have had them when taking a new medication – when I was on Amlopodine for high blood pressure, I experienced horrible racing thoughts and really unpleasant ‘mixed states’ – a feeling of intense depression and mania at the same time. The other thing that threw me for a total loop was St. John’s Wort, which I took for post-natal depression many years ago.

    Thankfully I am not experiencing any of that this time. But I do feel very, very slightly ‘high’. And although there is a very crucial campaign by people with ME to ensure that the illness is not confused with mental illness (which I totally support, as I am quite, quite sure that the depression that comes with ME is not a cause or an explanation but rather a co-morbid result of suffering chronically and being treated so appallingly badly by the NHS, the media and society in general), this ‘high’ does strengthen my conviction that my particular illness has dysfunctional thyroid as an integral component, since hypo- and hyper- thyroid states can affect the brain, and in fact it is not unknown for people with dysfunctional thyroid (especially Hashimoto’s Thyroditis, which can swing from high to low) to be mis-diagnosed with Bipolar.

    Yes, you have probably guessed it, I have been taking a supplement designed to help the Thyroid for the last week or so. I strongly suspect a causal link. Again, when I can afford to, I will be getting a complete thyroid panel done privately. But I’m feeling good (even allowing for the possible ‘mania’) about the feeling that I might be on the right track.

    As you may have seen me mention, I posted in a very dark moment that if I didn’t get well in 2016, I would throw in the towel. I’m sure I wouldn’t. But I have a good feeling that 2016 might be the year for me. If I can get well – even by a small margin – my quality of life would improve beyond all recognition; I would be able to get out, clean my house, oh I don’t know – perhaps begin to make friends and build that ‘social network’ that 2015’s horoscope promised so faithlessly.

    This is what I would like for 2016: glowing health, all our financial difficulties are over, find a better house, success in every area, and everything I touch turns to gold. Blessed beyond all imagining. “A good measure, pressed down, shaken together and running over, will be poured into your lap.” Yep. That’s what I’m looking for ideally.

    And if it doesn’t happen quite like I want it to, I will try to find joy in all things, beauty and treasure in the darkness.

    See? This is my happy place now.

     
  • Mrs Chakotay 3:34 pm on October 13, 2015 Permalink | Reply
    Tags: B12, , , , , , , , Pernicious Anaemia, rheumatoid, , thyroid   

    Fob-off Diagnosis (again) 

    About a month ago I decided to move GP surgeries to the other one in town, because after three years of being told – without any adequate process of exclusion – that I have ME/cfs with Fibromyalgia (although I have never seen a rheumatologist to confirm that diagnosis) and that nothing could be done for me, I had decided that enough was enough.

    The first GP I saw at the new surgery seemed very young and inexperienced, and in fact he had never heard of one of my diagnoses – PCOS – (Poly-cystic Ovary Sydrome), although it is a very common condition, and he actually had to look it up on his little screen!

    I discussed with him that ME is an illness that should only ever be diagnosed through a process of exclusion and I believed that had not taken place. I suggested a number of things I wanted testing, including pernicious anaemia and hashimoto’s thyroiditis, both of which run in the family. He stated that “everybody thinks it’s thyroid, and it never is”, which did not inspire me with confidence at all.

    The next GP I saw was a very popular lady, and for good reason. I have never encountered such a friendly, compassionate doctor who was so willing to co-operate. She immediately referred me to Neurology to rule out MS and to check for possible pituitary damage after a head injury some years ago, and to Rheumatology to rule out Rheumatoid Arthritis and Sjogren’s, and with the promise of more referrals to come. Sadly, this wonderful doctor went on maternity leave the next week, so I will not see her again for a year or more.

    Today I saw a third GP, who I assume was a locum filling in for the maternity leave. I had prepared a very thorough and detailed letter explaining my case and some of the things I wanted testing and why. This GP read the letter and immediately picked it apart dismissively, becoming increasingly rude and patronising, telling me that I shouldn’t be resistant to the ME & Fibro diagnosis, and that I appeared to be “angry for some reason”. It felt as though I had gone back ten years. I left her office in tears.

    I am actually too exhausted from crying to go into detail about what she said and how upset and angry I am. But I can tell you that I feel more desperate than I have ever felt.

    The previous blood tests for TSH (computer) says “no” so without an intelligent operator, I am faced with a brick wall. She actually said to me “some conditions can’t be helped“.

    How is that possibly acceptable?

    And I really just don’t know where to turn.

     
    • Barbara CT 11:21 pm on October 13, 2015 Permalink | Reply

      I empathize with your situation, as I have been there with bad doctors who think the patient doesn’t know anything and don’t listen. Since you reference seeing GPs I’m assuming you live in the UK. PLEASE follow through with a reheumatologist and ask about treatment with low dose naltrexone (aka LDN). It is better know in the UK than in the US, but I have been researching it and my rheumatologist thinks it is a good treatment for me so I’m seeing my pain management doctor tomorrow and keeping my fingers crossed. Ask your doctor(s) about LDN; if they are unfamiliar with it, give them information on it. In addition to videos on YouTube that explain how it works, and groups on Facebook, there are two primary sites for information: http://www.lowdosenaltrexone.org and http://www.ldnresearchtrust.org.

      Liked by 1 person

    • MjBee 9:17 am on October 14, 2015 Permalink | Reply

      Ah there is nothing worse than doctors like that. My GP since childhood refused to diagnose me with M.E/CFS, kept telling me to exercise more and relax. I ended up moving towns and tried my luck with a new GP and got a good one. She is young and admitted she is certainly no expert but she has been marvellous. Made a lot of referrals, listens to me, makes me laugh, sympathizes with me and most of all, treats me like a human being. Im sorry for your shitty experience, and I hope you can find someone decent soon xo

      Liked by 1 person

    • Jackie 6:05 pm on January 11, 2016 Permalink | Reply

      This sounds very frustrating. I thought you may be interested to learn that while CFS is a diagnosis of exclusions, there are objective, measurable abnormalities in ME. Here is more information (not my own) on that if you are interested.

      A Blog Post
      http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/

      More Info on Differences
      http://www.hfme.org/comparisonchart.htm
      http://www.hfme.org/misdiagnosis.htm

      Like

      • lillbjorne 7:33 pm on January 11, 2016 Permalink | Reply

        Thank-you, that is interesting. Unfortunately, the NHS has chosen to ignore the WHO and instead uses its own ‘NICE’ guidelines which don’t distinguish between ME and CFS. I hope that will change soon for the better.

        Like

      • lillbjorne 7:56 pm on January 11, 2016 Permalink | Reply

        I just read through those articles and it makes me want to cry, because NHS doctors don’t do any of the testing necessary to make a confirmed diagnosis of ME, and I am pretty sure that, if they had bothered to do so when I first got ill, the last ten+ years of my life would have been very different. I am fighting now for exactly the tests that they should have done in the first place.

        Like

  • Mrs Chakotay 10:17 am on May 16, 2014 Permalink | Reply
    Tags: , , , , , , , thyroid   

    ME: An Alternative View 

    The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

    http://aboutmy.me/

    I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

    But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

    But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.

     
    • Emma Louise 7:23 am on May 19, 2014 Permalink | Reply

      Hello,

      I am a student journalist from the UK, currently studying at University of Technology Sydney. I also suffer from CFS.

      I am writing a colour story/feature on recent scientific discoveries linked to CFS such as the study (April 2014) where evidence was found that CFS sufferers have neuroinflamation.

      I have experienced the stigmatism attached to CFS so I am writing this story to discover what it means to people with CFS and the positive affects scientific evidence can have. I am also interested in those involved in the research and raising awareness process to hear their opinion on the fact that there is now scientific evidence linked to CFS.

      I wondered if I would be able to speak to you for my story?

      Kind Regards,

      Emma Louise

      Like

    • Hannah Jade 11:54 am on July 7, 2014 Permalink | Reply

      It Defiantly was an alternative view (Claiming CFS doesn’t exist).

      The process for being diagnosed for CFS is to have countless number of blood tests done and for GP and specialists to check them, before you are even sent to a specialist (Well that is the case in Bristol any way). Whilst it appears your friend had a misdiagnosis it does not mean the condition is not real, and I think calling it a myth is quite offensive and simply incorrect.

      I think one of the most important things is to get a knowledgeable, compassionate and supportive GP (Regardless of what you are suffering from), who will listen to you and preform more tests if you don’t feel a proper diagnosis has been given. My advise to anyone is to find a good GP if you don’t feel like yours is taking you seriously or try a different one in the surgery or even switch surgery all together.

      Whilst I think everyone is entitled to there own opinion, I think it needs to be said that CFS is a real condition (Even if it wasn’t what your friend suffered from) and through effective treatment (Nutrition, CBT, Counselling, GET and general life pacing) people do get better.

      Like

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