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 have a confession to make. I try not to let this blog get too personal – I prefer to keep it ‘on topic’, just talking mainly about cooking and housework and crafts.
But here is the thing. I am really, really struggling.
I know that we are blessed in many ways. After our landlord evicted us, we were re-housed against all the odds, in the town where we wanted to be. That was pretty miraculous, but it is far from ideal.
The house that we were put in has turned out to be totally unsuitable – there is no garden for the children (they were pretty heartbroken when we had to sell their trampoline), and since it is designed over three floors (meaning that I have to be more active than I can cope with), I have got much sicker since we moved here. In fact, I seem to be in relapse. I’m arguably sicker now than I was when I first got ill. It’s too small, so most of our books and possessions and furniture is still in storage, and our finances are a nightmare. My kids are ill, there just seems no end of massive, insurmountable problems.
I feel as though I am in the ‘pit’.
The result of this is that I am finding the upkeep of the housework impossible, and I’m not well enough to do the cooking. Added to the physical issues, or perhaps as a result of them, I think I can safely say that I have descended into a deep depression.
And I am feeling a failure.
We have had a run of more than five really rough years now, and I feel as though I have been brought into a long-term, painful wilderness experience, or a ‘Job’ experience, and I don’t really understand why.
So many scripture passages talk about blessing following the keeping of Torah, and for those who bless Israel. So I just keep wondering, what have I done wrong, and why am I missing the blessing? And when is it going to end?
I pray, I read the Word, I try to remain faithful. But it feels as though my prayers fall on deaf ears, and I have never felt more distant from Abba.
I never expected the ‘narrow way’ to be quite this rocky.
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.
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
2015 is not shaping up to be all I hoped it would be so far.
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.
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.