Tag: fibromyalgia

Going away for a break

Going away for a break

Wow. This week has been really emotional, with so many really sad tragic things happening – the Grenfell Tower disaster, two terrorist attacks in London, another attempt in Paris, another major attack in Mosul – so much pain. I desperately want to be able to “do something”. Help. Bring some hope. Bring the merciful love of our Heavenly Father into this pain.

My partner and I have taken some action to do this and I’ll post more on that separately.

Meanwhile I’ve been feeling overwhelmed. I’ve had a couple of appointments with the pain clinic which have been very draining and in some ways upsetting. I’m sure I’m going to learn things that really help there and I have to try to keep going, keep trying, keep open to what they’re saying and offering even through the parts of it that hurt.

Today my partner and I are going away for a few days. We are staying in a besutiful hotel. We’re going to meet up with some of his family and my goddaughters’ family too. This is the first time in I don’t know how many years that I’ve been away on holiday. It’s not to a totally unknown area but I’m anxious. It’s a huge thing for me to go away and stay somewhere I don’t know and to stay a few days. I am excited too and know I really need a break. Most importantly I’m looking forward to some time to spend with my partner, talk and pray together, and share home calmly rather than constantly running around at the point of exhaustion and it seeming that time in which we can be there for each other and be thankful for each other sometimes comes last. I’m thankful for these coming days and pray for God’s blessing on our time together.

There’s a pool at the hotel and I have made up my mind that for the first time in about 7 years I’m going to get in the pool. I’m going to try to do some of the exercises my pain physiotherapist gave me and try to swim a little. It should be fun but also a great challenge to overcome as I haven’t been in a pool since I used to swim obsessively to try to lose weight when I was in the grip of bulimia.

So it will be a weekend of firsts and implementing some beautiful changes, please God.

Wishing you all good things this weekend.

Ginny xxx

 

Exhausted unrest

I am very frustrated that basic activities are taking so much of my strength and taking a massive amount of planning.

Just going out is exhausting. I’m desperately needing more time to rest physically. Also, desperately wanting more time to properly order my home and take care of it. I have had a constant stream of appointments and commitments that I’m struggling through, feeling more and more frustrated by exhaustion, mobility problems, pain I can’t cope with, and anger with myself and unrest about my home being disordered and messy.

There are a couple of friends I really want to spend time with or do things for. I’m scared of taking from others and not giving back. Yet meeting someone, or going to their house, or cooking a meal for them, totally wipe me put afterwards for days after. I think that’s through a mixture of my pain and pushing myself too far physically, and my anxiety and the voices and feeling overwhelmed in a sensory way. Talking, others’ emotions, noise, new places, everything happening around me, can be just too much coming in to cope. Sometimes I think I have sensory processing disorder or at least sensory processing difficulties!

All this leads to despair, being cut off, and being unable to give thanks or try to open my heart to learn gratitude. I need to make a change. I don’t know what.

Ginny xxx

Unenchanted April

I have wanted to post but not been able to find what to write. I’m sorry it has been nearly a month. Even this post I started nearly a week ago. I don’t know quite what’s making it so hard to express how I really am.

My friend’s health continued to deteriorate. I was fighting desperately to get him help as the danger he was in increased. Everyone in a position to keep him safe seemed oblivious to tune dangers and I could see how close he was to the edge but with no professional’s help I could not do anything more than what I can as a friend and that is not enough. It’s terrifying to be the only one knowing and believing the risk and I know that sounds like I am very arrogant thinking I know better than the doctors, but time and time again now I’ve known what’s happening or going to happen, the doctors have done nothing, refused even to listen to my concerns, and the thing I’ve known will happen, happens. The toll is greater each time. He has liver damage, blood clots, he’s starving himself, he is barely even drinking anything, there’s much more I wish I could write but it’s too personal to him for me to feel I can share here.

I don’t know how to carry this knowing.

I cannot save him alone. What someone else can give you, or trying to carry on for someone else, will not ultimately be enough to keep you safe or even alive. (I know this from my own darkest times, when I’ve been irretrievably low, hurting myself and planning to end my life, and someone close to me – who didn’t know the half of it – screamed at me, look what everyone is doing for you – why isn’t this enough for you? The answer is a post for another time but I know if he continues it must not be for me, not just for me in any case, so I alone cannot save him.

I can pray. I can try to give comfort. I can try to give compassion. I can try to show I love him and that he’s a good person not as he sees a problem, a burden, someone who frightens people, is bad, is not wanted, is no good. I can try to help him find some ways to build a safe, stable home and life. We can find short times of hope, happiness and laughter together. He has an immense capacity to love others, care for them and about them, to rejoice when they are happy, to fight to help them when they are hurting and share their pain. But none of that can he do towards himself.

He may die. He may end his life. I don’t know how to hold this knowledge and all the feelings that come with it.

****

I have been in crisis myself in the last few weeks and was in hospital for a couple of days. Then I had help from the crisis team at home for a week. When crises come I still flip out and instinctive reactions and thoughts take over along with the hallucinations just as much as they ever did before I had therapy. My “little child” gets out and she really isn’t very nice sometimes. It’s scary. I feel like a failure.

***

I’m realising that my mobility has got a lot worse in the last year. I’m particularly weak physically at the moment. I was diagnosed with POTS a little while ago (a heart, blood pressure and autonomic nervous system disorder). I’ve a lot to learn on how to manage the symptoms. Being very faint, muscle spasms, digestive problems and poor circulation have been hard to deal with this month. I’m now very fortunate to be in touch with a pain clinic at the hospital and there are some good possibilities from what they can offer, so I must be hopeful.

I really will try to post more regularly again and share happier news next time.

God bless you.

Ginny xxx

 

How prevalent is the assumption that disabled people don’t work or don’t have responsibilities?

As a disabled person, I’m pretty used to being seen as a problem, especially in the workplace, and sometimes all the more even when “reasonable adjustments” are supposedly being implemented. For example, in my last secretarial post, discussions about supposedly agreed alterations to my working hours would begin with explicit statements about how I “had to realise how terribly difficult it is”. I was pressurised not to attend medical appointments or follow medical advice. If I was in any way assertive about my needs (not disability related ones) once “reasonable adjustments” had supposedly been put in place, I was reminded of the “great leniency” being shown towards me and how my boss was allowing things most firms never would. It got to the point that I explored this with a manager. Was there something wrong about my performance that they considered they were being lenient about – if there was I would much rather they openly told me what it was, so that I could try to correct it. Oh no, said the manager, and she went on to tell me pretty much in so many words that it was the fact that I’d been allowed to return to work after a period of sickness absence and that [what had been agreed amounted to reasonable adjustments] had been put in place! Once I dared to be assertive that whilst it was agreed that I was working reduced hours, there needed to be a plan for how urgent tasks that arose in my absence would be dealt with (it was not okay for me or for anyone else for them all to be left for my return on top of my usual full workload), I was told by my manager that everyone knew I could not cope with the job. From then on, bullying and harassment continued, along with continually calling on the fact that everyone knew I couldn’t cope with the role. This was despite the fact that, until the point that I had asserted my needs, all my reviews and appraisal had been excellent and I had taken on many responsibilities beyond my job description.

I left soon after, feeling I had no other choice as my mental health was deteriorating so rapidly. I made a formal complaint, but the lies in the company’s response and the regulatory body’s disinterest meant I gave up. 2 years since this started, the impacts on me are still considerable, especially intense self doubt about whether I can take on the responsibilities of a skilled job and the intense emotions I feel when I try to take on more responsibilities now. I’m a good way off returning to paid work but I know these memories will be something I battle with when I do.

Looking back, I feel that although the company I was working for made “reasonable adjustments”, they did so out of a sense of obligation. They made them on paper but were not really willing to discuss the practicalities. I did not hide my disabilities from my employer at any point but when I had a period of particularly bad health they became more visible. I feel that the firm continued to employ me out of obligation but from this point I was seen as a problem, an inconvenience, “terribly difficult”, someone who cannot cope. As soon as I asserted my needs (both relating to my disability and not), this was unacceptable to them. I was no longer wanted. Looking back I feel as though I was acceptable so long as I never spoke out, so long as I never dared assert myself because I was so grateful for everyone allowing me to stay despite all the problems I caused. Whatever happened they needed me to fit their impression of me as someone who can’t cope. If I didn’t assert my needs, eventually the ever mounting pressure would have got too much and I would not have been able to cope. When I did assert my needs, they took this as grounds to announce that everyone knew I couldn’t cope. Whatever I did, it came back to this. If I stuck to my contracted hours and a task went undone, I would be told off for not completing it. If I worked late to complete a task (sometimes specifically with a manager’s agreement or even at their request) I was told this showed I couldn’t cope with my job because no other secretaries worked late (untrue incidentally).

So, I wonder, how much of this was done malevolently and how much came from my employers’ assumption that disabled people can’t cope with responsibility or can’t do the job? Yes, in the later stages I believe their lies were malicious or at least covering their own backs so that should I take my complaint further I would have no case. However I am coming to think that their underlying beliefs about me as a disabled person played a large part. (It could have been that I was actually rubbish at my job from the outset but then why was this never reflected in my performance reviews?)

It seems a very backward assumption that disabled people can’t work. Then, the other day I encountered the assumptions of a total stranger who had met me for a few seconds at most, that I’m irresponsible and don’t work.

I was about to get off the bus when the driver sailed on past the stop despite 3 of us ringing the bell in plenty of time. By the time we got to the next stop this had trebled the length of my walk home and this over-exertion has now worsened my symptoms such that for the next 3 or 4 of days I’d be almost unable to walk at all and wouldn’t be able to leave the house even to get to my medical appointments. Someone who has no way to appreciate what life with a disability entails might not realise the extent of impact of having to walk a bit further. The driver was very rude and dismissive when I asked why he didn’t stop and so I thought it worth pointing out the impact it had on me. He would not apologise and lied saying that the bell hadn’t been rung and what was it to do with him. This being the last in a considerable number of recent bad experiences with the bus company that have left me dreading bus travel (recently I was shouted at and ordered off the bus because I asked the driver where the bus was stopping during a temporary diversion and wasn’t willing to accept his answer of “I don’t know I’m not a taxi driver”!), I decided to complain and asked for the company’s telephone number. The driver flatly refused to give any details. At this point another passenger came up, pushing into me, telling me “Just get off the bus, you [expletives deleted] idiot! It’s alright for you, all the rest of us have responsibilities and work to get to! Take the bus number you idiot, he’s told you [more expletives deleted].” On top of which the bus driver nodded and smiled, said she was absolutely right, actually thanking her. Pretty much encouraging her.

I was furious with the passenger as well as the driver and it took me some time to work out why I felt so strongly. Part of it was the driver’s refusal to apologise, refusal to admit he’d missed the stop and pretending the fault was mine and generally very poor customer service, which really gets to me as I’ve worked in customer service for years and feel strongly about how I’d treat other people. I also ascertained he missed the stop deliberately to save time, though that is something of an assumption. But I figured out that what really upset me was the implication in the passenger’s tirade and the driver’s support of her.

“It’s alright for you” whilst the “rest of” the passengers have “responsibilities and work to get to.” She made the assumption that I did not have work or responsibilities, that I was different from everyone else on the bus – why, because she could see I’m disabled? “Take the bus number you idiot, he’s told you”. She assumed the bus driver had given me the information I needed and I was too stupid to understand (he hadn’t). Again because I’m disabled? And I should “just get off the bus” – why did she find that it was wrong for me to stand up for myself? Are disabled people too much of an inconvenience to the “rest of us” when we do? Should I keep quiet because everyone else has responsibilities and jobs that count more than mine? The driver supported her being verbally abusive. Perhaps he was just hoping she’d intimidate me into giving up so there would be no possible repercussions for him if I made a complaint, but in the context it felt like him agreeing I was stupid, an inconvenience and so unworthy I don’t even merit decent customer service.

Am I being paranoid? Was it not actually to do with my disability? Was the other passenger setting me apart from her and the rest of the passengers for another reason? I don’t know. Instinctively I feel it was very much to do with my disability and perhaps the fact I wasn’t behaving in the typically meek, apologetic, unobtrusive way it seems acceptable for disabled people to behave.

Hmmmm. To be continued at some point, I think….

Ginny xxx

 

Ten dishes challenge #6: chicken stew and exploring wheat-free

Since the new year, actually I’ve been much better than usual at cooking meals, though usually I haven’t managed to remember to take a picture to add to this series, hence the lack of updates. A significant reason I’ve done better at cooking is that I was preparing food to share with a couple in my block who were in serious financial difficulty, and also cooking for another friend who is very unwell and struggles to eat at all let alone cook.

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I’m motivated to cook when I feel it’s to help or care for or simply for the enjoyment of someone else. This can help me overcome feeling too exhausted to do it. When I’m cooking for others, there is actually some joy in it even if I’m battling the chronic physical pain. The thoughts and voices that taunt me that I don’t deserve good food, must not eat, fill my head with repulsion at myself and greed and failure, do not come so loud when I’m cooking for others and sharing the meal. When I’m with others, I don’t binge eat and I cannot purge food. Perhaps it isn’t the ideal way out of these eating disorder symptoms – I have to be able to feed myself for myself in the end – but the more times I do cook, do share food, do manage not to binge eat and purge or restrict for long periods, the quieter the voices become even when I’m alone. It’s a very slow process and can still be awful but I think it’s a strength that will slowly grow.

The other major change in the last month is that since I was in hospital with stomach problems, I’m on a wheat-free diet because I was advised to try this. So I’m finding out new recipes or adaptations to recipes. As much as possible, I’m finding foods and ingredients that are naturally wheat free, because a lot of replacement products are very expensive, especially the processed ones. A very small loaf of gluten free bread will be £2.50 rather than 80p for a similar sized normal loaf; a packet of wheat free biscuits may be up to £3.00 rather than 75p or less for regular supermarket biscuits. I can’t have these things regularly on wheat free, at least not when I’m relying on Benefits whilst I’m signed off work. The plus side of this is that it leads me to cook more and eat more fruit, veg, beans, meat and dairy. My food bill will increase a bit nevertheless but I don’t think it will be unmanageable if I’m very careful to go for cost effective recipes. In fact, I’m often enjoying finding a new variety of foods and the altered diet. For example, I’m going to try making my own bread using wheat free flour. I discovered these funky coloured carrots that were tasty roasted:

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It’s not all saintly. Chocolate definitely still features in my diet! 🙂

For the first couple of weeks I was out of hospital, my stomach was very unsettled and I was mainly eating rice, rice crackers, cooked vegetables and fruit, peanut butter then gradually some egg and cheese as well. Most meals were looking something like this:

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Slowly, as my stomach is a bit better, I’ve wided my diet again with meats, yoghurt, various treats or desserts like chocolate, or fruit bars, and I’ve tried some wheat free cereal a couple of times. It’s a gradual process and I’m still feeling unsettling effects from the stomach problems I had.

I’ve also returned to using my Nutribullet, which I find most helpful for upping my vegetable and fruit intake with juices, ensuring I have high fibre intake and consuming things that can be harder to get into my diet. In the winter, I don’t enjoy eating a salad as I might in the summer, but I can make a yummy smoothie with some raw spinach and mixed leaves, avocado, banana, apple and a little lemon juice.

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The result does slightly resemble the bathroom suite my parents had in the 1990s, but I promise it tastes good. (Warning – in my experience, home made juices, whatever the ingredients even if you use brightly coloured fruits, tend to turn out green or brown. This may not look appetising however if you can overcome the colour they usually taste good.)

Yesterday I made a chicken stew with lots of veg and mashed potato, which I was very pleased with as I used not to be so confident cooking meat. I had the day at home so was able to pace the preparation better than usual. There was plenty left over that went in my freezer.

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Thanks be to God for helping me to rediscover some joy in food, some opportunities to share and eat with others and enjoy it, and gradually continue on the path to a more healthful diet and feelings around food and my body.

Ginny xxx

Two hospital visits and “The Gas Man Cometh”!

The past week has been a mix of unexpected, scary, painful, exciting, relief and changes.

I had been feeling worse than usual physically but had put it down to all the flu bugs around, cold weather and the fact I had been very stressed in the preceding month. However, it wasn’t flu. Just over a week ago I had some horrible symptoms I won’t detail here. On calling 111 for advice they sent an ambulance straight away. At the hospital I was found to have [ahem alert don’t read whilst eating your dinner!] bowel obstruction. Thankfully they had caught it in time before things became more serious (if left, it can cause a rupture in the intestines). I had IVs and they erm, did what they had to to clear it, X-rays, then I had to have more IVs for fluids. I ended up being readmitted the next day because I was having symptoms again so it was a scary couple of days. They would have kept me in but there was a bed shortage. I’m home now with several medications and guidelines to follow about diet and drinking enough.

I am so thankful this was spotted in time and treated. The doctors, nurses and HCAs were all kind and caring and made some scary, nasty things as okay as possible, and reassured me. They were busy but still took time.

I have some changes to make now. I have had to stop several of my medications because their side effects could now cause problems with my bowels. I need to discuss this with the GP to find alternative medicines and ways to manage because I needed their beneficial effects (eg for pain relief). Fortunately I’m due to see a specialist pain clinic in a month’s time. Also, I’ve been told to cut out wheat from my diet to see if this makes a difference. Even though I don’t have celiacs, some people can have other problems with wheat. Bowel problems do occur as a complication in other conditions I have (fibromyalgia, POTS and hypermobility syndrome) and people can find going wheat free to be helpful. I’ve started this and so far thankfully I am not missing wheat too much at all, though I’m still only able to eat a little so that may be why.

I’m hopeful that with these changes I can keep things better, though we don’t really know exactly why the obstruction happened. In the meantime I’m fighting not to get too down through some of the difficult effects I’m still going through. I am very achy, pain is worse as I’ve had to stop some of the medications, and I’m still stupidly weak physically (the fibromyalgia is badly exacerbated which again is to be expected as after any illness). I have had bladder incontinence for years because of the fibromyalgia and nervous system problems; since the bowel obstruction this is much worse and now distressing bowel urgency and leaking if I can’t go right away, are added to that. I’m praying this is temporary or at least that the GP can refer me back for some help when I see her next wek. I used to be too disgusted and ashamed to admit to that side of things but now after everything that’s happened in the last few years it doesn’t seem such a horrendous thing to admit it, though I still get upset and feel horrible when I have worse incidents.

The other problem that has loomed large is I had no heating or hot water for 23 days! The most incredible saga unfolded between my landlord, the boiler maintenance people and the boiler manufacturer and fault after fault was found with my boiler and the flue.

This song seemed apt!*

Thanks be to God, as of this evening everything is fixed! I had a most enjoyable and appreciated shower. Boiling kettles to wash up, clean and have a wash was not the most fun, though it’s what my grandparents did daily as a matter of course. It has been very cold some of the days I was without heating and a friend very kindly lent me a portable electric radiator. On the plus side, I’m likely to be entitled to compensation for the multiple mistakes made and inconvenience caused. I have to apply for that from my housing association.

In more exciting news, today I attended the first session at the Recovery College, which I’ll post more on shortly. It was an introduction to how one can become involved in mental health research, bringing a service user or “lived experience” perspective. It was more inspiring than I’d expected and left me feeling I have something of value I could bring to shape research materials, methods and how research findings are communicated.

Another brilliant event this week is that my friend who has been homeless for a long time, has at long last got a place in a hostel. It’s a good hostel in a safe area. By no means is this an end to his difficulties but it is a blessed answer to prayers and struggles to navigate the way through the council, the housing list, support agencies, forms, waiting lists, assessments, phonecalls….it goes on. What he’s going through is terrible and scary however I pray this is the beginning of safety and a little stability. Thanks be to God, from the depths of my heart, thanks be to God.

Ginny xxx

*”The Gas Man Cometh” by Flanders & Swann. Thanks to Hawkmoon for the video.

Update long overdue!

It is a really hectic, up and down time at the moment and I’m much overdue posting. It has been hard to gather my words. I don’t make a habit of 2am posts – certainly not the best time of day for coherent writing – but I did not get to finish this earlier and it felt important to write before a big change coming up for me in the morning.

Belatedly, wishing you good things this New Year. I think I can just about say this since it’s still January! I’m praying that positive times and opportunities come for you and God’s blessings are shown to you to encourage you each day.

January is always a strange time, cold and empty in a way, after Christmas. Right now, so much seems unsettled, in the world, for my loved ones and in my personal life. I’ve written that before not long ago and of course it has not magically changed with the new year; if anything it seems all the more apparent. I’m trying to give generously of time and resources and friendship, for example to friends in need, and that’s how we encounter Christ in every day. But I’m feeling twisted apart inside because I come up against my limitations, what I cannot give and cannot resolve.  The family in my block, both of the partners seriously ill, whose Benefits have been suspended unresolved for weeks so they have no food, heating or electricity. My friend who has already suffered terribly and now faces more surgical procedures, my friend who has been homeless for almost a year and whose life may be in danger… to the thousands on thousands of people seeking asylum, the fear taking hold giving weight to insular policies that seem to offer protection but perhaps already spiral out of control. (The Mexico border “wall” seems to me to teetering somewhere between bizarre Divergent- trilogy-esque images and more than echoes of the Cold War era eastern block policies.)

I steer away from political issues in this blog but I think this turmoil hits ever closer to home. We hope that in times of hardship we come together and hold onto what matters most but I’m starting to think a certain level of hardship and fear brings only divisions. Then again, in my faith I believe somehow this must not be true because Jesus became Man to suffer and experience everything we suffer and go through. And He is all Love. Love came here, into the darkness and despair. Nothing changes Jesus. The despair and dark and hurt didn’t change Him, didn’t change love. So Love is here, Love suffers and struggles, but isn’t extinguished, so even in the hardest times, it’s love that remains – not division and conflict . I mustn’t lose sight of that.

This post has diverged somewhat from the update I originally planned. Probably to do with the fact that it’s 2am. I’m going to try to get back on track.

Since Christmas, I feel I have not been able to catch up at all. Usually, I have a big clear out, going through cupboards and drawers and so on and decluttering. I haven’t managed this at all. I’m frustrated with myself that I can’t keep on top of the housework at all. My emotions are bubbling over and have been for some time and I feel I have no resilience to cope with straightforward things. Saying that, maybe a lot is happening at the moment. I’m about to be discharged from the personality disorders community service I’ve had therapy in for the past 2 years. I’ve been trying to find support and things I can get in place for after my discharge. This has not been easy and actually it has been quite distressing because I have been promised a lot of treatment I haven’t had and I’m left with major mental health issues unadressed. On the positive side, I have made contact with a peer support worker and Recovery Coach who are going to help me short term and I think this will be really valuable. I have also signed up for some courses at a Recovery College, which I’ll post about (and explain) next week.

My physical health is not going through a great patch just now. The cold always makes the pain worse so that’s part of the reason. I have had to give in to the fact I need a wheelchair sometimes now and I’m looking at getting a mobility scooter. At least this will help me be less isolated and take a little stress away perhaps, because I’ll be more able to take part in things outside my home, like my volunteer work.

Practically at home, I am going rapidly up the wall at the company who should be repairing my boiler. I have had problem upon problem since November and now have no heating or hot water. I feel they have handled the whole thing terribly (7 canceled appointments for a start, having to phone 6 times to arrange a very simple thing, and so on, then them accusing me falsely of missing appointments). Ggrrr!! I know this is just part of life but in the state I’m in at the moment, I can’t cope with this, and feel very frustrated with myself for that. My emotions explode out of all control. Then I get angry with myself because so many people are going through so much worse.

A close friend has serious housing issues as well as a huge number of health problems. I’m trying to be there and do what I can. Cook hot food and support him with form filling and trying to get him a support worker who could help. It is a little way I can try to help and use the knowledge I’ve gathered from my own housing issues in the past.

I’m going to stop here. Later this morning is my last group therapy session and this will be a really really hard lot of goodbyes. I’ve been writing thank-yous and goodbyes, some of the hardest cards I’ve ever had to write. I’m sure I’ll write more about this last session and ending therapy, in the coming days. At the moment I’m struggling to find the words. I’ve cried so much today.

Ginny xxx

 

 

Furthest away from those closest

[Begun writing yesterday 30th December]

I’m really sad, angry, lonely and hurting. I feel excluded, blamed, not believed, not wanted, a disappointment, right when I am trying the hardest, giving the most I can, in the most pain and most need to find some understanding; not necessarily help but simply acknowledgement and belief of what I’m experience and some love nevertheless from those closest to me whom I might hope to trust.

I’m on the journey home now after staying 3 days with my dad and step mum and I am ashamed but I could not have coped with one day more. Again and again in my flashbacks I was back to being the child with my mother and my father and the constant terror and trepidation and dread. I live the same situations over and over. I’m terrified of the next time she’ll think I’ve done, said or thought something wrong and get angry. I am exhausted from any time with my step mother and her utter insistence on her right and my wrong. Even simply talking with her and Dad, it’s as if we’re back where whatever happened I was the problem, I was the one behaving oddly, I was the one causing damage – when actually my mother was the abusive one, she could get away with anything, when I was crying for help nobody heard, nobody helped me and my father appeared to agree with her entirely. Similarly now, he can’t believe my step mother and everything she does is anything but fantastic and wonderful. I know I’ve said before, in a family situation he is utterly loyal but to the exclusion of the point of view of anyone but her, just as he was with my mother. I think that’s at least in part how I went unheard for so long when I was clearly massively distressed and when I needed his help, and when I told him what she’d done.

It was a bad enough time through all this but it has also become very clear how little my step mother believes or understands about my physical health and disabilities, how much she blames me, holds me responsible as though being ill is a choice, how annoyed and disappointed she is I don’t live up to her requirements. I’ve known for a long time how she doesn’t understand but it came home this week. It isn’t only me that it’s directed at. She shows the same attitude to my step sister over her mental health and to one of her friends who has a lot of physical health problems. It is beyond me how anyone can show as little belief or understanding of what someone is going through, as little compassion and as much blame, but then I have been ill or physically disabled most of my life so admittedly that gives me a different starting point.

She is not open to hearing what day to day life is actually like for me or even seeing it when it’s right in front of her . I don’t make a big issue about my health. I try to make sure it affects anyone else as little as possible. But when she is lecturing me about why don’t I do this or that, things are only a problem because I imagine they are, and so on and I have to try to explain eventually why I may not be able to do something, she refuses to hear and insists on her solution and gets angry if I can’t do it. When I’m physically unable to do something when I’m right there with her, for her it’s something I’m doing deliberately, it’s a real problem for other people, I “just have to do it”, I am not making enough effort… it’s like when my mother accused me of pretending not to be able to do things if I didn’t succeed academically as she required, and the resultant rejection and punishment of me is similar too.

I wrote a lot about what my step mother said to me and did which I’ve deleted because listing a load of hurts and speaking badly of someone does no good. When I was leaving, she started up again about “New Year, new you”, how everyone needs it needs to be a healthy year, we don’t want any more of this, I’ve got to be completely different  and I’ve “simply got to” make sure of that, and it’s all about positive thinking, it simply has to be mind over matter, as if it’s a choice not a number of lifelong health conditions. She loves telling me what I’ve simply got to do, always things which I literally physically or mentally cannot, so she exerts a great amount of pressure and certainty that I’m a disappointment when I can’t meet her simply-got-tos that she heaps on me even when they’re medically not possible.

In the face of all this, my father blanks me, ignores what I’m experiencing, denies what has happened or ignores what I say if I express as much as the fact that some of what she says is hurtful, to the point of refusing to answer and acting as though he has not heard or changing the subject. He literally will not hear a single thing against her, or even not 100% agreeing with her. It’s just like how he withdrew and ceased responding and cut off and rejected me and to say the least did nothing whilst my mother continued all kinds of emotional physical and sexual abuse. Then he is able to say he doesn’t know what’s happening.

***

My step mother’s growing obsession with weight and Slimming World is hard for me too. The fridge looks like a diet advert, even though it’s Christmas, brimming with vegetables and low fat yoghurt and very little else. Food is such an issue and has to be done her way. She will not stop telling me how I’ve “simply got to get healthy… simply got to prepare proper meals”. I don’t want anything to do with her diet. She has no concept of eating disorders and how hard a combination of the voices, my physical disabilities making cooking and the resulting cleaning ever so painful, and my eating disorder make it to cook. Yet she can’t see past her own obsession with vegetables, fat free, going to the gym…

***

I’m at the point of ceasing to expect anything but rejection, judgment and accusations from my step mother and from my dad, withdrawal from me and utter support of her views. At best. The glimmers of understanding I thought I had from my dad just seem like a trick now that opened me to trusting, making the inevitable return to rejection and accusations all the more painful. I will not go to stay with them again any time soon.

It would be easier for me to cease all contact with them. My step mother does not often behave as if she likes me. I often think they might well prefer me to have only infrequent contact. After all, I’m seen mainly as a problem. Morally, I don’t feel I can cease contact. I have a duty to them. I want to forgive. I can’t expect total understanding. If I ask forgiveness from God when I’ve judged other people I need to forgive them. I try not to act angrily but the hurt is much harder to control. If I did not have a dependence or need for their understanding, it would not matter to me so much. Though my father’s withdrawal and denial of my experience hurts as much as what my step mother does.

It hurts so much in my head right now.

Ginny xxx

Total emotion

I want to write but I can’t. Everything I feel is so much right now. I’m very lonely and I really wish someone would be here and keep me safe. I’m lonely despite all the good I have and I feel so stupid for it. I’m hurting a lot for someone else. My emotions are still hitting me out of nowhere. They well up inside and I keep crying. Sadness. Fear. It feels like I can’t breathe and a weight is pressing me down. In prayer I scream silently and God is good and for a few moments some kind of peace warms me. That grounds me and I cling to it.

I’m trying to sit with the emotions. acknowledge them and feel them and let them be. Somehow, I’m not cutting or overdosing. Somehow, I’m not thinking of ending my life at the moment.

I am doing things. It’s not that I sit paralysed by the emotions all the day. I have done quite a lot in terms of cleaning and clearing my flat, shocked at the state I’d left it to and how I’d been living, making changes that I wonder why I did not do months ago. I do things, push myself to physical pain and exhaustion til I’m shaking and can’t stand anymore (I’m quickly exhausted with the fibromyalgia). Sometimes I’m driven to get things done; sometimes I’m trying to deal with the emotion; sometimes trying not to shut down totally.

The emotion is total. I feel it everywhere in my body. I feel so guilty for feeling this and thinking so much of myself, all the more when the emotions are to do with anger towards my family.

Ginny xxx

More cards – trying out some new materials

Feeling fairly useless as I do this week, I’ve tried very hard to do a little bit each day towards creating something good. I’ve been trying out some new materials for my greetings cards – different card backs and adhesive, for example. I focused on making photo cards as a friend had particularly requested some. She likes simple, un-frilly, photographic designs. It’s only recently I’ve started using my photos in my cards (usually I use decoupage, collage and similar) so I need to perfect my technique – a lot!

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It took me ages because of the pain but I’m so happy I persevered. There’s still a lot I need to streamline but I was pleased with some of the results; even more so when I showed them to my friend today and she was delighted. She’d even like some more. It really encouraged me and made me thankful to be able to do something nice for a friend.

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It’s helpful for me as well to make them for friends and get honest feedback so that I can improve and see what kind of designs are popular.

It’s a long range goal at present but one day I’d like to take part in a craft fair selling some of my creations. I think it would be hard for it to be truly profitable financially once my time is taken into account – doing it with the precision and finish I want to is labour-intensive – but I’d get a lot of enjoyment from it. Letter-writing is another favorite of mine though I don’t do as much as I used to as writing can be painful at present. Knowing that sending and receiving cards and letters can bring people lots of pleasure, I’d enjoy selling affordable cards. Many of those available in shops locally are incredibly expensive, maybe over £3 or even over £4 each, and that’s just too much for most people, especially once postage is factored in, and puts people off writing to friends and family.

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This year I hope to have time to make Christmas cards too.

Ginny xxx