Cast off the mooring,
The rope in the boat,
And watched it floating away.
Hi people 🙂 A happy post for a change. I’m feeling good!
I have been so down for so long. All the heaviness of the past few years just heaped up on me and I was so weighed down I couldn’t get up. There is obviously a situational basis for my misery – I had the most miserable year of my life living by the beach (ironically) because I was ill in an unsuitable house, with financial troubles (not to mention marital, car, family troubles!) and no friends! But it was more than that. The stress had worn me down until I had no mental or emotional strength to fight it.
But then, there’s no rhyme or reason to depression.
I feel better now, but there’s no particular or obvious reason why I should feel better. I just do. I’m sleeping better too, and hopefully that means that the vicious circle is straightening itself out. I hope I’ll be able to shrug it all off now and things will start to look better on a permanent basis.
I know I keep saying this, but I don’t have the life I wanted, or hoped for, or thought was right around the corner. But we hopefully have some good things on the horizon, and I truly am grateful for all the good things I have.
(But, do you know what? the glad game doesn’t work when you’re deep in the pit.)
I started a dose of amitriptyline about 3 weeks ago, and honestly I usually forget to take it, so I’m not sure whether or not it’s having any effect. But at this point, knowing what the deep pit looks like, I thoroughly recommend taking whatever hand is held out to you, just to get your head above the parapet where you can see the sun again.
Funnily, you know – I have been down in the pit deep enough to ask my GP before to give me anti-depressants, but that GP refused (bizarrely, a few years before, when I was desperately trying to get a proper diagnosis of ME, I was offered anti-depressants when I didn’t need them). This time, I just casually mentioned to my new GP that battling ME makes me feel a bit depressed every now and then, could I try anti-depressants?
It totally depends on the doctor you get. If you need it, don’t take no for an answer, or by all means find a better doctor. They are so variable, and some of them are complete buggers.
So now, despite contemplating moving house again for the 7th time in just over 5 years, I am actually looking forward to moving. I think. I mean, I’m not looking forward to the actual moving of course, that would be crazy. But I am looking forward to being settled.
I’m looking forward to living right in the centre of town where everything I need will be within walking distance. I’m looking forward to living in a place where I already have a bunch of good friends who can’t wait to visit us.
Incidentally, I keep wondering why I found this place so unfriendly? I can’t work it out. I don’t think it has anything to do with Cornish culture, because we’re not even that far down into Cornwall, and it isn’t that Cornish here. (And before I am accused of being racist, I never thought it was that, but the suggestion keeps getting thrown into the mix, so I thought I’d mention it. Whether there is a truly Cornish culture, or whether what we’re experiencing up here is just countryside culture is another topic.)
I think the problem here has been a mixture of being here at the wrong time, with the wrong aged children (home educating never isolated us until we moved here, but the HE group in this place was just filled to the brim with under 8s. The only families with teens we knew passed through and moved away long ago) and apparently having nothing in common with any of the people we met. It can’t be helped. I think we weren’t meant to stay here, it was just for a season. I do just wish that season had been a little easier. But anyway. It’s nearly over.
And here’s another irony for you. After all this time – five years with virtually no friends despite huge effort on my part to be social and gregarious (without appearing desparate! lol) to no avail – I just discovered a local vegan group that didn’t seem to exist when I searched for it a year ago, or five years ago, and I’ve MADE FRIENDS.
So here’s what I am expecting to happen: when we move away, we will be coming back here to visit and go to the beach more than we ever did when we lived here.
Isn’t life just gloriously ridiculous?!
p.s. I just passed my one month as a vegan mark. It’s about as long as I’ve managed to stay vegan before, but this time I have plugged into social networking for accountability, and I’m thinking about getting a vegan tattoo. That would probably keep me vegan. Oy vey.
We’ve been in the housing association accommodation now for just over a year, and I think that, on reflection, it wouldn’t be an exaggeration to say that – even allowing for some of the awful things that happened in the past – this past year has been the worst year of my life.
I used to really believe that gratitude and positive thinking could make a difference but now I am pretty sure that nothing can make up for not having your basic needs met.
I am not going to bore you with the details, I have already gone on and on ad nauseum.
Good times always seem to be around the corner, but somehow (it seems to me) hope, if it’s false hope, is the real killer.
“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”
Purim Sameach or Happy Easter to you, whichever you prefer.
Don’t forget to move the clocks forward tonight if you’re in the UK.
Another lick of paint, to cheer things up. What do you think?
The sun is shining, but I cannot tell you how deeply low and bad and desperate I feel. I didn’t go under when I lost my babies, when my Dad died, when uncle then aunt died in quick succession, when we endured floods, when we lost our house, when husband lost his job, when we had to move 6 times in under 5 years*. I just worked through every new grief like a Trojan. See these big muscles? I’m invincible.
But right now, I am seriously considering admitting defeat. I feel as though cruelty upon cruelty has been heaped upon us, and I have had enough. I won’t bore you with all the horrible things I’m having to deal with right now, but Whistler’s passing might just possibly have been the straw that broke the camel’s back.
And the next person to suggest that I’m ‘attracting’ all this bad luck can expect to be beaten to a pulp before I get dragged off to the funny farm.
* The abridged version.
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):
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’.
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.
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.
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.)
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.