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

    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 5:04 am on December 27, 2015 Permalink | Reply
    Tags: adrenal fatigue, , , depression, , , , , pwME,   

    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 2:05 am on December 16, 2015 Permalink | Reply
    Tags: depression, , , , ,   

    Annus Horribilis 

    Previously on the Prairie…

    2014 was not awful, it wasn’t the happiest year – I didn’t have the life I wanted, and I was very lonely and pissed off with our bad landlord (the last in a long line of bad landlords who nrefused to fix broken plumbing).

    At the end of 2013 we had moved house, out of a fire into a frying pan it seemed. It wasn’t the best move, but previous to that we had lived three years in a rental that had *so much* wrong with it, that it shouldn’t have been legal, BUT it was a bungalow (which, being on one level, was perfect), it was in THE most beautiful location, with views of fields in every direction, a village pond opposite, and a regular procession of visiting ducks, sheep and turkeys. So when we moved, it wasn’t a clear 100% improvement – it was a compromise. I miss the ducks and the beautiful views, but I don’t miss the disgusting brown water etc. The new house was pretty good, apart from the not hot water (honestly, not sure which was worse.)

    2015

    I made the stupid mistake of reading a horoscope (or was it a ‘prophecy’?) in January which said I would soon have access to a completely new social support network. Well, it hasn’t happened yet.

    But then, I could not have *imagined* the idea that we would be evicted in 2015 from that same house after barely one year as good, regular rent-paying tenants. And again, although every idiot thinks that if I’m not happy I must be a ‘glass half empty’ kind of girl, because, d’oh, you live near the sea, within walking distance of the supermarket, what more could you freakin want?

    We have been housed in a totally unsuitable three-storey house, with a moronic design – kitchen and single bedroom on the ground floor, living room and single room on the middle floor, and double bedroom and bathroom on the top floor. There is no question whatsoever in my mind that this is one of the reasons why I have become so ill since we moved. I am now largely confined to one floor, largely unable to leave the house, effectively housebound/ bedbound where a year ago I was able to be fairly active.

    Add to that the fact that there is no garden for the children, just a completely unsuitable yard not big enough for any practical purpose, horrible neighbours, my marriage sucks, an ongoing dusty, dirty, dangerous building site which makes cleaning nigh on impossible, and still, 9 months later – because we are poorer almost than we have ever been, living so ‘hand to mouth’ at the moment that we can’t do Christmas *at all* (if money doesn’t come in soon, we may need to go to the Food Bank for our Christmas groceries) – we have no floor coverings, and I can’t tell you just how depressing that is.

    It hasn’t been my Annus most Horribilis actually. 2010 or 2011 would probably be very strong contenders. But I am not sure I have ever been more miserable.

    Quite apart from my ill health which is severely limiting me right now, choices become few and far between when you have no money. I have cancelled every single outgoing that I could think of. So although I have been mulling around in my mind what ‘resolutions’ I can make for 2016, I don’t know how much is within my control to change. That is by far the worst thing – the fact that I feel completely powerless.

    I’ll try and think of something positive to say next time.

    What are the chances that 2016 will be our Annus Mirabilis, do you suppose? I think we deserve one.

     
    • MjBee 9:15 am on December 16, 2015 Permalink | Reply

      Gosh i really hope things start looking up for you soon, sounds rough..xoxoox

      Like

    • Emma 8:42 am on January 10, 2016 Permalink | Reply

      So, I’m going to go out on a limb here…

      I think I live just round the corner from you. If you ever want to come round for a cup of tea, glass of wine etc just shout. Feels a bit weird to say this to someone I don’t know but I guess that’s how social support networks start? We’re moving to flexbury next month so don’t know how practical that will be, but just wanted to try and help if I could. I like science fiction as well 🖖 (I think we’ve spoken on Twitter, I’m @em_bean)

      Like

      • lillbjorne 5:40 pm on January 15, 2016 Permalink | Reply

        Just spotted this! Yes! Would love to meet up at some point! I will send you a pm on twitter 🙂 x

        Like

  • Mrs Chakotay 9:38 am on May 30, 2015 Permalink | Reply
    Tags: , depression, ,   

    Quiet Down, Cobwebs 

    For two weeks, we had the non-stop noise of hammering every day as next door had their carpets fitted. The noise stressed me out but I couldn’t help feeling angry and jealous that whoever the people were had the ready cash to afford carpets and curtains before they moved in.

    The new neighbours moved in last weekend, and I hadn’t seen them, but I had heard their little children laughing and screaming (which was endearing and irritating by turns) and their mother constantly shouting at them (which was upsetting).

    I spent the week thinking how youth is wasted on the young and how so many young mothers wish the time away, not realising how short a season it is. I also found an old diary from 2004 (something my hoarding tendencies won’t allow me to part with) and thinking about what we were doing when our children were young.

    We have also had visitors every day this week – a dear friend whom I love, but who has had a very different experience to mine. We are the same age, but she married late and her children are all little. She spent the whole time telling me how lucky I am to live by the sea. True. But depression can’t appreciate that, and I wasn’t able to communicate that to her. If you’ve never been there yourself, it’s hard to comprehend how depression draws a veil of grey over the sunniest day.

    Last night as we arrived home, the next door neighbour was knocking on the door. I expected she was coming to introduce herself, but instead, she said:

    “Your kids keep waking my kids up!”

    “Oh, ok” said I.

    “I wasn’t going to say anything but it keeps happening. Your kids keep running up and down the stairs” she said, angrily (presumably it had just happened)

    “Oh, ok. Nice to meet you” I replied.

    I went in and told my sleepy children to try to be more careful on our un-carpeted stairs. I’m pretty sure nobody has been running up and down, but they do get a bit stompy when they’re tired.

    That was the last straw really.

    Instead of crying, I went in and stuffed my face with (vegan) comfort food (banana, non-dairy chocolate spread & peanut butter in tortilla breads). Several of them.

    I went up and checked my blood pressure, which is horrendously high (tablets notwithstanding). I’m a little bit frightened I will just drop dead, and I’m really not ready to do that. Not THAT depressed.

    I will leave you with a poem that has been going around in my head this week.

    “Mother, oh Mother, come shake out your cloth,
    Empty the dustpan, poison the moth,
    Hang out the washing and butter the bread,
    Sew on a button and make up a bed.
    Where is the mother whose house is so shocking?
    She’s up in the nursery, blissfully rocking.
    Oh, I’ve grown shiftless as Little Boy Blue
    (Lullaby, rockaby, lullaby loo).
    Dishes are waiting and bills are past due
    (Pat-a-cake, darling, and peek, peekaboo).
    The shopping’s not done and there’s nothing for stew
    And out in the yard there’s a hullabaloo
    But I’m playing Kanga and this is my Roo.
    Look! Aren’t her eyes the most wonderful hue?
    (Lullaby, rockaby, lullaby loo).

    The cleaning and scrubbing will wait till tomorrow,
    For children grow up, as I’ve learned to my sorrow.
    So quiet down, cobwebs. Dust go to sleep.
    I’m rocking my baby and babies don’t keep.”

    Song for a Fifth Child
    by Ruth Hulburt Hamilton

     
  • Mrs Chakotay 12:38 pm on February 20, 2015 Permalink | Reply
    Tags: , , , depression, evicted, homeless, inequality, landlords, , property, , tenants   

    Twisty-turny Lifey-wifey 

    2015 is not shaping up to be all I hoped it would be so far.

    2015

    Firstly, I was not able to go ahead with the next OU module due to a funding error. The same funding error that Student Finance England promised me was sorted out in September. So now I have lost a whole year’s worth of study. I’m beginning to feel that perhaps I’m not destined to study with the OU.

    Then the Ministry course that was being run in North Cornwall, for 28 churches, was cancelled because only 3 people (myself and my eldest son included) had signed up for it. Out of 28 churches. Yes, you read that right. Spirit of Apathy, anyone?

    And then, this week, just in time for Lent, we have been served with an eviction notice. Our Landlord – the one who has delayed and prevaricated and refused to pay for repairs for the entire time we have lived here – has decided to sell the house, and that it will sell more quickly empty. Charming. (Now that he’s evicted us, he’s decided to actually replace the boiler.)

    I wonder whether there are any nice, kind, honourable landlords. And then I remember being a landlord. We thought we were nice, kind and honourable. But we were also appallingly naive.

    Because we knew the tenants, and they were down on their luck, we didn’t take a deposit. We set our rent at a level just enough to pay our mortgage so that we could rent elsewhere, not a penny of profit. We left the house in an outstanding condition – better than we had ever had it while we lived there.

    But our tenants, when he lost his job, rather than contacting us to let us know they were having trouble, just stopped paying rent. From October to May, we had no rental income. Our actual income was so low that we didn’t have money for food. we literally didn’t know where the next meal was coming from. We were forced to evict our tenants. It felt awful.

    Our tenants never contacted us, they just skipped town owing us thousands and thousands of pounds.

    When we went back to our house, we were astounded at what they had done to it. They had utterly ruined our family home, short of setting it on fire, they had done everything they possibly could to make it unliveable, and it was covered in thick, black ooze from chain-smoking. Their poor kids. It didn’t get like that overnight – they must have lived like that for months.

    As we were penniless by that stage, we had no choice but to sell it, at a loss, barely covering our debts and the deposit for this house.

    This time round, we have no savings, no way of raising a deposit for a new house, and strangely we find that landlords and letting agents don’t like people who rely on housing benefit to boost the pay their pitifully low income to pay the rent.

    We are in the unenviable position (as so many thousands in this country are) of being totally at the mercy of merciless landlords, in a merciless society.

    I wonder what happened to our tenants, where they went, who would possibly have taken them on.

    I was angry with our tenants for a long, long time. How could they have been so cruel to us when we were so good to them?

    And then I remember that he was an adult adoptee, abandoned in the ’50s with no knowledge of his parentage, and estranged from his adoptive family. I remember that he was depressed already when they moved in. And I wish I had tried harder to help them. (Even though I still wish they hadn’t taken it out on us.)

    I’ve been surrounded by rich Christians all my life. In fact, I was one of them. I grew up in a reasonably wealthy family. We owned our own home in a nice neighbourhood, we wanted for nothing, really. But my family’s fortunes changed a long time ago, and it has been downhill ever since.

    But not one time in all our crises have we ever been offered financial help, practical assistance, or even emotional reassurance from the Church. If there’s one thing that makes me more angry than anything else it is that. The Church at least should be a haven of mercy.

    timey

    The title of this post refers, of course, to Doctor Who, and wibbly-wobbly timey-wimey things. Life is so twisty-turny and unpredictable. It seems that nothing is guaranteed, nothing in this life can be relied upon.

    If I could go back in time, to a better part of my life – when things were less complicated – when would I go to? If you’ve seen the film ‘About Time’, you’ll know that you can’t go back beyond the birth of your children, so I think I would choose to go back to the day my youngest was born, before everything went wrong.

    And I’d do things differently.

     
  • Mrs Chakotay 2:12 pm on October 17, 2014 Permalink | Reply
    Tags: , , , , , depression, , , , , , , , , ,   

    Autumn Update 

    autumn

    When all my activities finished at the end of term before the summer holidays, I was relieved because I knew I had been overdoing things. But what I hadn’t realised was that when the adrenaline (or whatever) stopped, I would completely crash.

    I spend a lot of time determinedly denying that what I have is M.E. I have eight pages of notes to bash my GP with – there are so many other things that I should be tested for, that should be ruled out before they give up and diagnose M.E., so many things they should try, so many things they could offer before they tell me that “there’s nothing we can do”. But this thing of feeling terrible when you stop, this ‘post-exertional malaise’ is typical of M.E.

    The whole summer was essentially ruined because I was too ill to go out – despite living a few minutes’ drive from the beach, I wasn’t able to get there. I wasn’t even able to sit out in the garden. I haven’t been this ill for a long, long time.

    So I haven’t resumed Scouts or Guides, and I have given up Boys/ Girls Brigade, with no plans to take it up again any time soon. I had another reason for dropping Scouts and Guides – after nearly two years of volunteering, neither of them had bothered to do a CRB check (or DBS as I think they’re called now). Neither had they sent me for any training, despite me repeatedly asking for it and indicating that I was serious and wanted to be a uniformed officer. In fact, at one stage I was asked to take over the section I was working in, and I indicated that I would be interested to do it, with help, but the help wasn’t available.

    It seemed to be the case that it was completely up to the volunteer to ensure that they have the correct training and certification, and nobody seemed bothered. I wasn’t prepared to carry on in the position where, if something when wrong, I could be liable. That really isn’t acceptable.

    There were a lot of things about Scouts in particular that opened my eyes to bad practice and some of the inappropriate people involved in it, and I have to say that I would be very, very reluctant to put any young children of mine in a youth group that I hadn’t investigated thoroughly, or that I could perhaps be personally involved with. The willingness of parents to leave very young children with people who are really not at all suited to be working with children amazed me. The stress of that is something that I am very happy to be leaving behind.

    I have had approximately ten weeks rest now, and although I’m not really feeling better, I am hopeful that my GP is now willing to offer me something since he has discovered that my blood pressure has shot up suddenly (although he doesn’t know why – he likes to blame it on my weight, but I haven’t put any on in the last year, and this time last year it was basically perfect). I have no idea why, but hopefully some medication might start to make me feel more human again.

    Unfortunately, I am cross that in all that time, being unable to go to church, I haven’t had a single visit or even a phone call. I have been getting more and more cross about that as the weeks have gone on. I assumed that they knew how ill I was because my eldest son is a bell-ringer and sees them every week. But he told me last week that my husband told them I was “fine”. Because apparently, from experience, this is how he deals with things. They have to be private, nobody else is to know, in case we worry people. Please.

    Really, am I an awful person for wanting to tell people I am ill and need help? Should I be worrying, like he does, more about everybody else not worrying?!

    Needless to say, I have become progressively more depressed and distressed over the last ten weeks. But part of that is to do with having too much time on my own to dwell on all the trauma and distress from the events of the last few years. While I was busy, I thought I was moving on to a new normal. But now I am right back in that dark place of grief.

    I have continued to wonder about adoption. One of my online contacts had got to the point of being approved by panel, but then decided that she couldn’t go ahead. It’s huge. Taking on a traumatised child – even a baby – is so much more fraught with difficulty than having a baby yourself. If I manage to get my health to a point where I could consider going ahead, do I have the emotional strength to cope?

    Additionally I have had the stress of having to make a formal complaint about my boy’s paediatric diabetes team. I won’t bore you with the details right now, but suffice to say that we have elected to transfer hospitals in an effort to secure a better service. But this has been stressful and upsetting to say the least. But I have done it.

    I discovered today that my old friend’s wife, the one who made a fuss a few months ago that I hadn’t enthused about her pregnancy, has blocked me on both my accounts. I don’t care much about her to be quite brutally honest. She is a shallow, selfish character who would never even want to bother trying to see somebody else’s pain or point of view. I felt like sending him an angry, ranting message or unfriending / blocking him in retaliation. Instead, I just sent him a message telling him that I am sad.

    When you have lost babies, or have a sick child, or you have to deal with ill health, you are going to have some level of underlying sadness. I would love to just get happy. I want to live, I want a full life. I just wish I knew how.

    My next post will be happy, I promise.

     
    • orthodoxmom3 2:00 am on October 21, 2014 Permalink | Reply

      No you are not an awful person for wanting to tell people. That’s healthy. Your husband’s response is pretty normal to for men, in my experience. I pray you find answers to your health and other considerations in life very soon!

      Like

      • lillbjorne 8:08 pm on October 24, 2014 Permalink | Reply

        Thank-you! I think you are right about it being a difference in the way men and women relate – we need to talk! 🙂

        Liked by 1 person

  • Mrs Chakotay 2:40 pm on June 16, 2014 Permalink | Reply
    Tags: , , depression, , , Journey   

    Journey continued 

    I wrote my ‘Journey of Faith’ in 5 parts, and then almost immediately decided to remove them (I may post them back up – I do like to retain my ‘woman’s right to change her mind’).

    But I realised that, in a sense, I was only sharing half the story, essentially the physical – which churches I was part of and how I had moved and how my basic beliefs changed over time. But really I think it was the height of arrogance to claim that my faith has ‘survived’ while another’s has not.

    The other half, the underlying spirituality, has been and is an ongoing struggle.

    Here’s the whole truth of it.

    I have moved from fundamentalism to a grace-based understanding, but I am aware that my basic frame of reference is essentially quite Puritanical and it is something I constantly have to battle against. I can’t really have fun without feeling guilty.

    I feel as though all my life I have been doing a dance, playing a game, with God as my distant partner, in which God hides just out of reach and out of sight for as long as I seek Him, and when I turn around and decide I have had enough and don’t have the will or energy to pursue Him anymore, He pursues me.

    So even if I wanted not to be a believer anymore, God just won’t leave me alone! I can’t not believe. No amount of reason or logic would allow me to be an atheist.

    I am a little bit fed up with it all to be quite honest. What exactly does God want of me?

    I have been praying for life to get better, for my health to get better, for over ten years, but the answer always seems to be, “Here’s something to make it just a little bit worse.”

    I want to help people, I want to do good, I’d like to be in a position where I can do those things. But in the condition I’m in, I’m no good to anyone.

    I feel as though I have a permanently melancholy cloud over me. Maybe I’m just feeling particularly melancholy at the moment.

     
c
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