Tag Archive | Type 1 Diabetes

Dream: Pink Beetle

I dreamt that I was watching a video in my room (I’m not sure where, it reminded me of the room we once had at my mother-in-law’s before we had children. Apparently the video was about fertility, and how to maximise your chances of pregnancy, so you can guess what’s weighing on my mind)

Then I noticed there was a fairly big beetle scurrying towards me on my floor, which looked black on its underside but then it flipped over and was like a ladybird (I know it doesn’t make sense that it was scurrying along on its back, it was a dream!), in fact I thought for a moment that it was a ladybird but instead of red it was pink with black dots, and it increased in size until it was the size of a side plate or a 45 rpm single record!

I ran in to the living room to tell my Dad, and he asked me if, by the way, I would like to take over his bureau (an old fashioned wooden desk with a pull-down leaf). I said I would love to, and he followed me in to my room to look at the beetle, but it had disappeared in amongst my papers and I couldn’t find it.

At the end of the dream, I was sorting out my papers into my Dad’s bureau. The pink beetle never turned up again, but the television suddenly started playing and I was embarrassed that my parents had a look at what I was watching.

Notes: I did once own a baby pink Beetle Volkswagen car, which I never drove for various reasons. But I gave it away because I was told it couldn’t be fixed, and the people that came for it actually fixed it on the drive and drove it away, so I was always very sad about giving it away. Does the pink beetle represent my car that I lost? Does the car that I lost represent my lost babies?

I often dream about my Dad, and I usually wake up sad, realising that he is gone. I feel like there is a lot of unfinished business there. I’m still angry with him for dying on purpose, and I miss him terribly.

I am embarrassed, because I am 47 now, 48 later this year, and yet I still desperately long for a baby. Why? I feel so stupid. Everyone I know my age was happy with the size of their family as far as I know, and accepted that that was that. Why can’t I? I have 3 teenagers and a 23 year old who is still not independent due to Aspergers. My middle child has Type 1 Diabetes. All of this seems like pretty good reasons not to have any more children even if it were possible. My brain knows that. Why can’t my heart get it? 😦

The other question is, why am I suddenly having so many weird and upsetting dreams? Well, I have had a pretty bad to the year health-wise, probably all related to food allergies and intolerances, I’m probably not being as careful as I could be, which could be a form of self-sabotage (although in my defence, it mostly hasn’t been my fault – our finances got so bad that we had to rely on food bank handouts, and honestly although I am super grateful for the kindness of strangers, all the tinned food made me super ill.)

Advertisements

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.

Autumn Plans 2015

Just a quick update and a moan!

Our summer has flown by and been filled with a week at Creation Fest (which involved lots of music, skating, and eating doughnuts!) A week with my mum and brother, showing them round north Cornwall, and finally a week in Watford with a few trips and get togethers with friends and looking after my sister-in-law’s pets while she was away.

This is the last week of our summer holiday, and we’re planning to start back with lessons next week, but I am very frustrated right now! I had planned to start Sonlight levels D and 100 but most of our books are still in storage after moving at this point, and realistically I may not have access to them until later on in the year, so it’s back to the drawing board for now.

I do have Heart of Dakota’s World Geography level for Pony-rider, so we can start that (I had originally intended to intersperse that reading with her other studies rather than as a stand-alone programme), and for the boys? Not sure yet. I don’t think we can do any kind of organised study but we can read the books we do have, and maybe do some projects relating to their interests until the Sonlight books are available.

Pony-rider and Dragon-tamer, additionally, are both planning to do vocational courses this year with the local college, but I don’t know the details of those yet.

My goals for September are these:

• More regular exercise, and get out more – every day, if only for 5 minutes or in the garden if possible.
• Make an effort to get some appropriate social interaction, whether that be with the local group, the new Cornwall Teens group or other activities. (I don’t like driving far, I’m a bit of a homebody, but unfortunately that is just a reality of home ed in a rural area.)
• Earlier to bed, earlier to rise, and
• More regular meal times together, if possible, together with healthier eating choices. I think this will help with monitoring Motor-Biker’s blood sugar levels as well.
• Make more use of our annual season tickets to Eden Project!

Specifically academic goals:

• Concentrate on improving the boys’ handwriting which has degenerated recently
• Explore options for handicrafts and activities which don’t require reading and writing. (A photography club has been mentioned as a possible option.)
• Aim to read 4+ literature books together this month.
• Carry on with current course books for History / Geography and Science. (Science has definitely got neglected this last term, so I need to make sure that doesn’t happen.)
• Start new resources for Maths, with more emphasis on discussion and understanding than written work.
• They’re all wanting to do different languages now, so I’m not sure how that will work as they’re not very independent learners and like a lot of hand-holding. We have plenty of resources, they’d just need to do the work.
• And finally, for me – I need to get more organised with stationery and record-keeping – most of the last couple of years’ work has just got lost in amongst the house-moving chaos.

What are your plans for the new school year?