Tag Archives: mental health

Unification

This is just a quick note, for anybody who might be reading/ interested, to let you know that I have decided to amalgamate all my various blogs – The Bajoran Exile, Chakotay Homestead, Seaside Therapy, Shepherdess, Messianic Woman etc. back into one right here (hopefully that should be achievable, as they’re all on WordPress). 

When it’s all done, you can expect more of the same, but with a much heavier dose of Star Trek analogies.

I don’t know exactly why I have this continual impulse to start new projects that I can’t possibly keep up with, but it is certainly a recurring theme. I shall attempt to stop it immediately. 

I haven’t written anything anywhere recently (unless you count twitter and facebook), due to mental, emotional and physical exhaustion. That has made me realise how ridiculous it is to have so many blog projects on the go at once, and so hopefully I will start writing again soon because at least I won’t have the excuse of not writing due to being overwhelmed by too many choices.

I think as well that all the splintering into so many different voices has been indicative of my state of mind over the last few years and so I’m feeling that the time is right to finally sort my head out and pull myself together. Metaphorically.

Wish me luck or something! 👍

Fractured

I would be a long way away from this episode if I was going to blog the episodes chronologically in order. But I feel as though this is an important part of who I am and what I’ve been going through, and how I got to where I am. So I will dispense with order and chronology and just go ahead and skip to the end.

My lovely new friend, Christian Janeway and I have had to clarify on twitter that we are not the same person, just two ex-fundies who had a similar idea.

It’s true.

But Christian Janeway went on to say that whereas she chose her Janeway character and blog to catalogue her exit from complementarian theology around marriage, and I had embraced mine and later decided to become egalitarian.

That’s not quite the case, and I’ll attempt to explain why. Firstly, the dichotomy between completarian and egalitarian marriage is not quite as polarised in the UK as it is in the US. Certainly, conservative churches would lean towards complementarianism where more liberal churches would lean towards egalitarianism, it is not such a big issue over here as it is over there.

My Chakotay is not a religious man, and as far as he would be concerned, we have an egalitarian marriage. I happen to have stayed at home and adopted a more traditional role but not because he asked me to or because he forced me to (far from it). It was more a case of falling into it when children came along, but also additionally – because I had put myself under such very conservative teaching again as a young wife and mother – I forced myself into this role. I actually gave up my degree to follow him in his job. He would never have asked it of me, but I unselfishly submitted! (And I’m sure he never knew anything about it, just assumed it was what I wanted).

Even the homeschooling, when it came along was not for any conservative or religious reasons – my eldest child seemed to have mental and emotional issues (which we thought at the outset might be ADHD and have turned out to be Asperger’s), which made learning at home seem to be the best option. But of course that was the route back into fundamentalism for me.

Fifteen-twenty years later, I can see that forcing myself into a role for which I did not have adequate emotional resources or any outside support has done damage both to me and possibly to my children on many levels, including mental and emotional and academic. But whether going to school would have helped is debatable – my eldest child’s worst trauma actually happened at school when he went in aged 16 to complete his exam year, and I know that a lot of his Aspie friends who did go to school are now in the same position as he is – out of work and isolated.

Looking at my facebook memories around this time, I see that 7 years ago I was planning to leave Chakotay for various reasons, which perhaps I will look at another day, but one of the biggest reasons was his Vulcan inability to communicate and show affection. All these years later, I realise that I probably chose him precisely because he was undemonstrative and not somebody who either felt intensely or would be threatening to me. He does have a temper actually which has exploded on occasion, but really he is very much the gentle man. I may talk about my ex another time, as that was quite a different relationship.

I mention the episode ‘Fractured’ because, not long after our difficulties, I got pregnant with twins (which I was overjoyed about), but later miscarried them at 14 weeks in October 2010, and straight afterwards I was verbally attacked by a couple I knew who had just had a baby. Needless to say, being kicked so cruelly when I was at my lowest ebb was traumatic and impactful to my self-confidence etc. Chakotay’s response was to move us hundreds of miles away out of the city to the most remote place he could find. (Our New Earth)

My response, odd though it may be, was to write but I did it by multiplying my accounts on Twitter and Facebook and WordPress. I ended up with 4 separate facebook accounts, 10 Twitter accounts and 15 sites on WordPress. Yep. Each account had a different name and a different theme. I felt as though it was indicative of my state of mind, as though I myself had fractured into a million pieces.

As some of you will know, I was assaulted by a group of young men in a pub last weekend. It was not a very serious assault, thankfully. Having spoken to the police, it transpires that there was no CCTV and so I shudder to think what could have happened.

But it does reinforce for me the idea that once you have a trauma – especially if it is a childhood trauma – it becomes compounded and almost invites new trauma. I have, over the years, attracted a string of abusive friends (and abusive churches), and I have often joked that I must have a target invisibly tattooed on my forehead that tells potentional abusers “Look, I’m vulnerable! Give me a good old kicking!”

I was actually privileged on Sunday to preach and lead my first service at my current church (which happens to be a Salvation Army). I preached on the goodness and faithfulness of God. I feel as though I have so, so much to say, but this was the topic that impressed itself on my heart.

Is it a coincidence that I was sexually assaulted the very next day? I don’t know. I don’t really know what to think about spiritual warfare, the devil, hell and spiritual things like that generally. The Pentecostal in me is yelling! Are you kidding?! Of course there’s no co-incidence! This was a spiritual attack, to remind me in no uncertain terms that I’m ‘just’ a woman, and probably shouldn’t be preaching. And that message is coming straight from the pit of hell!

The Anglican in me however, a rather more rational, composed creature, can see that it really is probably more a case of having that deep seated vulnerability and unconsciously communicating it (body language? hormones/ pheromones?) as I go through life. The abusers are probably no more consciously aware of it than I am. I just need to learn, somehow, how to protect myself and communicate confidence.

Is it healthy to continue in this fractured state or is there some way to re-integrate and become a whole person again? I don’t know. (I am probably going to delete at least 2 of the facebook accounts, if that helps!) Who do I want to be? Can I be homemaker and writer and preacher?

Chakotay has told me on many occasions that I have freedom, I just don’t take advantage of it. My prison is of my own making. Part of me, certainly, really wants to be a ‘homemaker’ – The Waltons and Little House on the Prairie still look like the ideal life to me. But I’m not very good at it, and actually I think that my trauma comes into play there too. I’m just a little bit dysfunctional.

I’m part of a group on Facebook called ‘Radical Homemakers‘ – a group of (mostly UK) women who have purposely chosen the domesticated life for various reasons, but who are also committed feminists, determined to smash the Patriarchy from home. I do wonder how I got to 40 without realising or understanding what Patriarchy is or how damaging it can be. But I suspect that it probably has something to do with the nature of the debate in the UK. Whether we realise it or not, the churches here are deeply influenced by American theology, but when it is communicated over here, it tends to be more subtle. We don’t even notice it.

What is the way forward? In the episode, they have to inject the bio-neural gel packs with a chroniton-infused serum to take every part of the ship back to the point of the original trauma.

In real life? I think that means going back and facing all those demons, bringing them out into the light to see what they’re made of, and finally defeating them. Obviously it’s a little bit more complex than that, but I think that is the gist of it. I suspect that, if childhood sexual abuse had been involved – which thankfully it wasn’t, it would be a different matter and I don’t know enough about that to know how that can be overcome. But for me, untangling my background of spiritual and church abuse and dysfunctional family is the only way I can be made whole. Will it make me a better homemaker? I don’t know.

I’d like to thank you now, for putting your doubts aside and helping me to put mine aside as well. Good luck to each of you.

LLAP

Kathryn

Dark Frontier

We took mum home about six weeks ago now. Since she has been gone I have tried really, really hard to relax and largely failed for some reason. I don’t ever seem to be able to properly relax.

I thought that reducing stress would help my physical health but instead, somehow, it has just got worse and worse; despite which, all the results of all the testing I was sent for, and all the various referrals to different consultants have come back negative. My MRI showed no obvious evidence of damage from my bike accident. Endocrinology didn’t find significant evidence of Cushing’s. There would appear to be an intermittent excess of cortisol, but there doesn’t appear to be a tumor either on my pituitary or my adrenals. The non-significant levels don’t justify more testing.

It would appear to suggest that my cortisol levels are likely related to anxiety. Anxiety that I wasn’t consciously aware I had.

I have reverted to my previous agoraphobia. Agoraphobia of course is a sign of anxiety, but somehow I didn’t connect it. Now that I don’t have a group to go to, I pretty much don’t go out unless I have to. I go to church on a Sunday (and once I went twice!) and I go out if husband drives me somewhere. But largely, I am hibernating and hiding.

I hadn’t realised until recently what the source of all my issues were, but a chance conversation on twitter, together with a conversation with my eldest child has forced me to confront some very dark and disturbing issues from my past going back to my childhood.

I’m not sure whether I want to dwell on that here. I have other places to talk about mental health and spiritual abuse (for that is what it was, if anybody is interested to look at that).

The question is, how to move forward. I know that I have to confront my past if I’m to get through it and get well and recover mentally and physically. Talk about it, write about it, meet with other survivors, they say. But just thinking about it has made me more physically ill than ever.

I prayed at the end of last year that God would reveal the true source of my illness so that I could get well. I really thought I was on to something when I the doctor suggested Cushing’s. I think she was right that cortisol is a big issue. But the cortisol is actually (probably) in response to trauma. I wasn’t ready to consider that, but now that I do it all makes sense, and I just want to cry. I have to open up a whole Pandora’s Box I thought I had long buried. It makes me feel vulnerable, like a little girl again.

If I still have any Star Trek fans following me, you will recognise the name of the Voyager episode in which Seven is confronted by her past – in which her parents took the risk of studying the Borg, thinking they wouldn’t be harmed, but not only are they harmed but they allow their daughter to be harmed, taken by the Borg and raised by them, and in turn Seven goes on to commit atrocities on others as a Borg herself. It’s a very good metaphor, for me, effectively being raised in a cult-like church, and later going on to do harm to others in the same vein (in particular, I regret, my eldest child).

It’s not easy to face.

Wounds to Dress

This blog was originally going to be talking about handicrafts and gardening and cooking and learning to ‘homestead’ through the lens of Janeway and Chakotay finding themselves marooned on New Earth in the Delta Quadrant. I thought it was a good metaphor for my isolated life in rural Cornwall. I still hope to include those aspects – part of me longs for that ‘Good Life’.

But there are other issues which have come to the fore recently – related to my self-named status as a “progressive fundamentalist” which are forcing me to look long and hard at who I am and how I got here.

I have been speaking recently with another Star Trek RP account – Christian Janeway – and I have been amazed at how much we have in common. Conversations on Twitter, and with my children over the last week, have prompted me to recognise just how damaged and damaging I became as a member of a fundamentalist church in my youth and again as a young mother, and so I thought that, in the first instance, I would write a brief summary of what that has entailed. I wasn’t expecting to bare my soul or look deeply into difficult and painful corners, but I think it needs to be done; and as I have said elsewhere many times, my two favourite forms of therapy are Star Trek and writing. Even if nobody reads this and it helps nobody else, I hope it will help me to move on.

Beginnings

When I was very young (this was in the mid 70s through the mid 80s), my parents were happily attending a lively Pentecostal church in a small town north-west of London which happened to have a US ex-pat community. Somehow my parents came in to contact with American fundamentalist Baptist missionaries to England who dazzled them with personality, charisma and authoratative confidence and persuaded them to leave the Pentecostal church – which they convinced them was at best fake and at worst, probably of the devil – and start a new fundamentalist Baptist church with them. Before long there were a number of families and additional children associated with the new church.

I was mostly too young (approximately ages 6-13) to fully comprehend the depth of what was going on, what was being preached, and how my parents were more and more controlled in every area of their lives – to  my conscious mind, all was good, these were the best days of my life – because we saw so much of them, because they often stayed at our house, we were practically living in community with them. Our whole week was in some way or another controlled by the church. It wasn’t just Sunday morning and evening, it was Sunday lunchtime, midweek dinners, Bible study evenings, prayer meetings, members’ meetings, social calls. It was completely engulfing.

What I didn’t realise at the time was that my parents’ mental health was suffering in different ways (my mother later had a mental breakdown, my father expressed it as physical ill health).

We eventually escaped the church in two stages – firstly, the American Missionaries went home on furlough for a year, fully expecting my father (who had been partially trained, for about three years for the pastorate with their organisation) to keep the church going in their absence. What actually happened instead was that my father rebelled and pretty much immediately after the Missionaries left, allowed the families to go to another church during that time.

I don’t know what ire this behaviour invoked when the absent Pastor found out – I’m sure my father would have been on strict instructions to contact somebody else here in the UK from the organisation for assistance rather than allowing the church to close; my father kept everything close to his chest so I don’t know his thought process or decision process. I probably don’t know the half of it. I do know that my father never really ever recovered from the damage they did to him.

When the missionaries returned, they were obviously furious about what had happened and again although I don’t know the details, I can only infer that they made my parents’ lives a little bit hellish and so stage two was to move away from the area altogether. The missionaries were never able to re-establish the church in that area, and were eventually re-located by their organisation.

Initial Results

Right before we moved, I had a serious bicycle accident which was probably a hit and run (my memory of it is very hazy but my bike was definitely run over), in which I sustained a head injury which has affected my health ever since. This led to my mother becoming mentally ill. Around the same time I became mentally ill myself with Anorexia. I always thought that it was linked to my head injury, which it might be, but I am beginning to suspect that it might be an after-effect of the church. I will explore that at a later date.

My parents, prior to my mother’s breakdown, embarked on a search for the perfect church. Still affected by the fundamentalist teaching they had, and despite all the damage it had done to them, the new church had to measure up in some way to the church they had left, so after rejecting several perfectly nice churches, we ended up in another strict Baptist church with its own issues. (No doubt the most serious being that the Sunday School Superintendant was ‘having an affair’ with a 13 year old child. Note it was the 80s, so that was how it was phrased at the time).

When my mum got ill, the church were pretty incredibly useless and unhelpful, not being able to deal with mental illness, so that turned out to be a blessing in disguise and we were able to leave there.

Teenage

I spent some time at a very good church during my teenage years which was gently charismatic. A nice balance, not over-the-top crazy Pentecostal. (It was a Salvation Army by the way – they’re variable, and have their own issues, but I have to say that this was my happiest time and probably the healthiest church I ever attended.) The fact that it was charismatic would have bothered my parents considerably a few years earlier but by that stage they were beginning to realise that some of the fundamentalist teachings had been wrong and harmful, so they let it go. My mother even attended there for a while.

Marriage

To cut a very long story short, I hastily married the first boy I slept with and promptly regretted it, and hastily got into another relationship (with Chakotay). I was pretty consumed by guilt and shame which I had learned under the teachings I had learned early on, and so when I started home educating my children (for totally non-religious reasons!) I soon *put myself* under the teachings of extremely conservative fundamentalist teaching again. Everything was so familiar that I lapped it all up – quiverfull teaching, headcovering, submission for godly wives, corporal punishment for children (which I totally disagree with and regret btw) etc. I literally could not find a physical church conservative enough for me!

Messianic

Probably as a result of that irrational drive to find the most conservative form of Christianity, I started looking at the Messianic movement. I actually spent ten years in Messianic Judaism (one year of which actually involved rejecting the whole thing and seriously trying to convert to mainstream Judaism – another story, for another time), and I hope that I have taken and absorbed the best and most positive aspects. The actual physical fellowship I was involved with were absolutely lovely and kind and generous and unfundamentalist! But there is in Messianic Judaism – principally online, for me, as I’m in the UK – a very fundamentalist thread which is every bit as damaging as mainstream fundamentalism (if that’s a thing).

Unfortunately, I was under those two strains of teaching for long enough (20 years in total plus the original 6 or so) for me to perpetuate some of the abuse that was visited on me onto my children. It was totally unconscious and unintended, and I am utterly mortified at the damage I have done. Icheb, my eldest, seems to have borne the brunt of it all, while the others seem largely unaffected, thankfully.

I don’t quite remember how it happened, but something snapped at some point and I realised that I was part of something really very nasty and unhealthy that was replicating some of the exact same abuses that I had been part of as a child (being told that you must separate from every other sort of Christian, that the rest of the Church is wicked and evil and not of God etc for example).

Exile

Chakotay, who is not a religious man at all (alas, my Chakotay doesn’t even go in for spirituality) tolerated all of the above, mostly blissly ignorant of what was going on in my head, but he could see that I was getting physically and mentally ill and that was affecting the children. So he unilaterally decided to move us – hundreds of miles away from where we were, to a place so rural and isolated that there was no internet. I’m still a little bit angry with him for doing that (and I have mentioned my inability to speak up for myself earlier today). But in actual fact, it was a good call. The last six years have been long and hard and lonely and painful, but removing me from that whole social circle has enabled me to re-evaluate everything and begin to heal.

In many ways, he is my hero, and I am so grateful that he is such a gentle, kind, slow-to-wrath kind of man. He is certainly not without fault, but he has been so much more gracious and godly than so many Christians I have known.

Anyway. That is enough for now. These are some of the issues I want to work through here on this blog. I hope you will stick around and I hope it will help some people to heal too.

LLAP

Kathryn

If She Tries to Resist, Assimilate Her!

Just a very brief outline of what was upsetting me yesterday, and will no doubt continue to unsettle for a while.

Last year when Mum moved in with us, I took her along to a Women’s mental health support group which was run by a national charity known as Rethink Mental Illness. I was surprised to recognise many of the members from the Fibromyalgia group I had previously been a member of, but had been uncomfortable with it being run by a mental health charity. (ME and Fibromyalgia have been dogged by inappropriate association with psychiatry for decades)

To cut a long story short, the group decided to break free of Rethink and set up on their own (there was actually a very acrimonious split but I won’t go into details).

It was decided that the group would amalgamate to be both a Fibro group and a mental health group and since we were all friends, we could divide the time informally and equally between the two. I thought it suited everyone.

But then, just after Christmas, there was a big, bad falling out and one of the members left/ was pushed out of the group, and one or two members made a complete turnaround and decided to ask Rethink to step back in, as though everything that had happened before and all the reasons we ejected Rethink were irrelevant.

I was given leaflets to re-apply to Rethink to be ‘assessed’ by them, and I filled them in but carried them around in my bag for weeks, really not quite comfortable about being involved with them again (not to mention the fact that I was unhappy about various aspects of the way the group was going, not least of which was the decision to offically call the group a Mental Health group and ignore the ME & Fibromyalgia).

On Friday, we weren’t able to get to the group and apparently they met with Rethink  without us. Rethink determined that nobody could be a member of the group anymore unless they were assessed and approved by Rethink and so we could no longer attend meetings until we got that sorted out. Not only that, but they stipulated that we were not even allowed to meet members of the group for coffee until Rethink had approved us.

Well, no.

Apparently the other members of the group all sat there meekly and said “Yes Rethink, whatever you say, Rethink, three bags full, Rethink.”

They seem to be honestly surprised and confused that I would disobey. They had not anticipated it and apparently everybody is reeling because I have broken the group up!

Of course I am very sorry and upset to have hurt or upset my friends. But by all accounts, I think these friendships must have been very weak and superficial if not entirely fake if they would submit to tyranny for the dubious promise of safety that Rethink offers.

I think I probably need to learn to say “no” louder and more determinedly at an earlier stage if I’m to avoid repeats. But in this instance, I think it’s all over and we need to stand our ground and be prepared to lose the group to Rethink. I’m not willing to submit to the malevolence or incompetence of a group that has already shown themselves to be untrustworthy and more trouble than it’s worth, and I doubt the others are strong enough to resist.

I hope I’m wrong and the friendships will survive despite the disagreement (and Rethink’s ridiculous rules). But somehow, I very much doubt it.

They’re Civilians! Civilians with Partical Weapons!

Apologies for the rather long hiatus in posting. Life as a full time (mental health) carer has been very taxing indeed, and I have found that my life and ‘free’ time has no longer been my own and, when I have had free time, I have been too exhausted to use it productively.

There have been lots of things going on, and there are lots of things I could post about but I will have to think about what and how much to share, why I’m writing in the first place and who my audience might be.

Since the Autumn I have also been battling with the NHS system to get to the bottom of my health issues. I now have an official Consultant-led confirmation of the diagnosis of ME, although disappointingly that doesn’t seem to help much – the general gist of things is that they can’t really do anything very much to help me. But I have seen a neurologist and will be referred back to the Pain Clinic apart from other things.

Additionally, my GP has been looking for evidence of Cushing’s Disease. It is considered a ‘rare’ disease, but it is on the list of endocrine disorders that should be ruled out before diagnosing either Fibromyalgia or ME as well as Adrenal Fatigue/ Exhaustion. It’s actually in a way rather the opposite of Adrenal Exhaustion since AE is a lack of adrenal hormones (the adrenals are exhausted) whereas Cushing’s is an excess of adrenal hormones – in particular, cortisol, which may be caused either by overuse of steroid medicines or the presence of a pituitary or adrenal tumour.

After various stages of testing, I have an appointment for a kidney scan (primarily to find out why my blood pressure is so enormously high and resistant to meds), and I’m waiting for the results of a new MRI. My GP said that, even though my cortisol levels appear normal so far, if there is no mass on my kidneys she will order an adrenal scan as there is obviously something not quite right. So no results yet but I feel as though I’m making (slow) progress at last thanks to my lovely GP who is the first to take me seriously and keep on testing until we find the truth.

That’s all for now. I do plan to come back to blogging. If you’re reading, please let me know. If it’s only for me I may still post as I find it therapeutic. Talking of therapy, my therapy of choice is still Star Trek. Top marks to any Trekkie who is able to identify the episode – I’ll give you a clue, it’s from Star Trek Voyager – from which the title of this post is named. (I used it as I’m in the middle of an upsetting episode in real life, that has me confused and questioning everything I thought I knew, but that is for another day.)

LLAP

The Last Straw

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.

 

Roundup of the Summer

I just thought, as the sun is streaming in where I am sitting and brightening my spirits, that I would do a quick (ha! Sorry it got long!) roundup of what’s been happening to me over the summer.

I’ve been very quiet, I’m sorry. I have noticed a pattern of becoming ill just as the summer is starting and getting a bit better as the weather and the seasons turn to autumn, but this year I have got progressively more ill as the summer has gone on – perhaps it’s due to the ‘Indian’ summer we’re having down here in Cornwall? (Which is lovely by the way!) I actually love the heat and the sunshine, but for some reason it doesn’t agree with my body.

Somebody suggested I might have reverse SAD, and I have struggled with depression and mental health issue this summer, so I don’t know if that is the cause of my summer lows, but it definitely wasn’t helped by some blood pressure tablets (Amlopidine) I was given. They did nothing to help my hypertension, but they totally flipped me out mentally. I stopped them and tried again three times so I know they were definitely the cause – I was experiencing racing thoughts, ultra-rapid changes of mood, agoraphobia and suicidal thoughts. I even contacted Outlook South-west for help, but they were only interested in the agoraphobia. I have had a series of telephone therapy sessions but it hasn’t really been very helpful. The racing thoughts and mood changes stopped as soon as I stopped taking Amlopidine, but the rest has stuck around. I think that all the stress and upset of eviction and the last few years made me vulnerable and susceptible to mental illness and Amlopidine pushed me over the edge.

At the same time, I was feeling very extremely ill physically, with increasing numbness, tingling, balance issues and migraines in addition to all my other symptoms. After being told for the umpteenth time by my GP that “there is nothing we can do for you”, I made the decision to change surgeries and get myself a new GP.

It was SO totally the right decision. Already I have been offered referrals to a Neurologist to rule out MS and a Rheumatologist to investigate the possibility of RA or Sjogrens with the promise of further referrals to come. Finally I am hopeful that it will be possible to get to the bottom of what my health issues really are and then move towards healing and health after so many years. (12 and counting)

On medical advice, I agreed that the vegan diet was doing me no good, and I have moved back to a paleo / primal style low carb diet. At first I only added fish but now I am back to eating meat as well. I began to feel better for the first three weeks and then crashed very badly. Having started to read Dr Sarah Myhill’s excellent book “Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria not Hypochondria”, I have realised I was probably going too low carb (under 20g per day) and on her advice I am starting to take a supplement of a specific sugar called D-Ribose which she says is needed for certain hormonal conversions in the cells. It is a sugar which the body can normally synthesise itself, but people with ME can’t make it so it becomes an essential supplement. I will let you know when I have read more of the book and if I see any improvement. I’m also looking again at the Trim Healthy Mama diet (you know, the one that I slated not so long ago), realising I may need to incorporate some E meals (with light carbs) due to my health issues.

Incidentally, since going back to wheat-free, low carb / paleo / primal my blood pressure and cholesterol have almost normalised. Sadly, the weight is not shifting at all. (But at least it’s not going up any more as it did on vegan and vegetarian diets)

I haven’t been able to go to church since about May and that has definitely contributed to my feeling of malaise mentally. Even though we are living in town, I have been very isolated indeed. On the few occasions I have driven out to meet people I have been very ill afterwards so I am having to take it very easy and pace my energy out carefully.

On the housing front, I am not happy at all. Yesterday we went to see a house. It was big, but dark inside and it’s far away from husband’s work, so he didn’t like it and I can’t seem to persuade him to move. But it was beside a beautiful babbling brook that you could hear from inside or sit outside and watch it. When I got home I cried and shook with rage and grief. I feel so angry that husband moved us away from our home 5 years ago to seemingly never-ending stress, and doesn’t seem to care that it has made me so much sicker, that I haven’t been able to make friends, that I’m miserable and ill and that a three storey house is so totally inappropriate for somebody with ME.

I sat beside my bedroom window this morning and tried to imagine that the rumbling noise and clatter of building trucks and machinery was a babbling brook instead.

So my situation now is mixed. I am very happy and hopeful about my change of GP, but desperately unhappy about my living situation (and none too happy about my marriage).

I’m not sure whether I’m hopeful that things will improve as the autumn rolls in. I feel that I can’t be happy in this house, it’s just so stupidly arranged. Kitchen on the ground floor, living room on the first floor and bedrooms on the second floor. I just can’t cope. If I moved down to the tiny single bedroom on the ground floor, I’d need to go to the second floor to wash. I could go on and on but I won’t. Suffice to say, this house is making my life and health much worse, and I can’t wait to get out of here. The prospect of staying makes me desperate.

To finish on a light and happy note…. I try to come up with a list of 5 things to be grateful for every day (I sometimes post them on my @health_Shmi twitter account). Sometimes I struggle to come up with anything, in which case I am grateful for the 5 other people in my family. But here is today’s list: sunshine, hifi playing random CDs (Youngest son is my DJ), happy fat cat laying in the sun, daughter made me a coffee, and finally it is Friday and the weekend is coming 🙂

Enjoy!

Parenting Choices

Over Christmas, I had what almost amounted to an argument with a very old friend, on facebook (of course). I could rant and rave how facebook is the spawn of the devil and brings out the worst in everybody – which it does, but that isn’t the point I’m wanting to make this time.

Our almost argument was essentially over parenting styles.

Another, even older friend had re-posted a photo of a monkey with words along the lines of “I can’t wait until the monkeys go back to school (and I pity their teachers)”. Personally, I found the whole sentiment sad (what an indictment on society that mothers can’t spend two weeks’ holiday with their children without wishing them away) and bordering on offensive. (Perhaps I’m easily offended – maybe that’s the topic for another post…)

I re-posted it with words to the effect that “I find this really quite sad and offensive, and if you feel like this, I feel sorry for you.”

I had several mothers chime in with comments agreeing with me, and a couple from abroad who mentioned that the UK seems to be a very anti-child culture and the openness with which mothers speak so negatively about their children, even in front of their children, is really quite shocking.

My friend, however, posted a snarky comment to say that she did feel that way, and that it was quite normal for ‘normal’ parents to feel that way, and if I thought she was a bad parent, it was my problem.

Hmm.

I had never to my knowledge suggested that she was a bad parent or had made bad choices, so I suspect that there is a little bit of a conscience-prick (or cognitive dissonance?) happening to make her feel defensive, but here is the thing. We made very different and opposite choices.

We both have children with special needs. We both have a child with ADHD and very difficult behaviour. My friend sent her child to school and encountered enormous difficulties including suspensions and permanent exclusions, psychiatrists, CAMHS and medications, and getting the help she needed involved an enormous amount of fighting against the system to force the system to address the problem so that he could cope with the system. Actually I admire her tenacity and determination. It is not so much my friend’s parenting or parenting choices that I dislike so much as the system itself.

The choices I made involved avoiding the system altogether.

Special needs were not the initial reason that made us choose to home educate (my eldest son’s special needs were of a quite different nature) but by the time our third child came to ‘school age’ it was obvious that there was no way he could be squeezed into the box that the system required.

When his behaviour started to become difficult to manage, we did try to deal with GPs and CAMHS, but without success. But since he was home educated, I concluded, as I had done with my eldest (who has suspected Asperger’s but for whom we also failed to obtain a diagnosis or a Statement), that we would just continue to find solutions at home. For the most part, I believe that was the right decision for the children and learning at home has been a much calmer and better choice.

There is a ‘but’ though.

For me though, for my health and sanity, home education has possibly not been the best choice. It certainly hasn’t been the easiest choice. I have no doubt whatsoever that the stress level has contributed to my overall ill health and in as far as adrenal exhaustion may play a part in ME, I think that stress has broken me. Really. I am certainly not the person I was  – either physically or mentally / emotionally – as I was when I started out on this journey just over 15 years ago.

So my choice has come at a rather high price.

I have wondered seriously whether I am well enough to go forward with our plan to adopt. Right now, I do not feel that I am, and that feeling of failure just adds to my overall state of mind. My Plan A, to have more children, failed spectacularly, but now I wonder if my Plan B will fail. I don’t have a Plan C. Just be sad indefinitely?

However, would I do it again, even knowing what I know about how hard it is? Yes, I would. For my children’s sake, I would. I am glad I did. Would I home educate an adopted child? I have to say, despite everything that I know now, that I absolutely would.

From my observation, school for the most well-adjusted children is tough and often comes at the price of impacting the child’s personality and character negatively. For adopted children, who have already been through trauma, loss and worse, it has the potential to be downright abusive and even in the best cases seems to add another layer of trauma which inevitably adds to their overall difficulties.

Please don’t get me wrong. This is not intended to be a judgement on parents – especially adoptive parents – who choose school. I’m only looking from the outside, and I know that I don’t fully understand the special stresses that come with adopting a traumatised child. Home education is not the norm, and for most people, it can seem like an extreme solution. It involves one partner giving up their job, or a very difficult financial struggle. There is no ‘respite’ from home education, and I wouldn’t even suggest anybody try it unless they have a very supportive husband or extended support network. You will need a break, you will need support, and you will need a very strong sense of humour to be able to laugh when life and the state of the house is just so awful it’s ridiculous.

But for me, from a list of imperfect possible choices, home education seems to be the least bad, least damaging option, especially for children with special needs.

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.