Tag: disability

A question for bloggers, and the outline of my blog

A question for bloggers, and the outline of my blog

A special thank you to those of you who have commented on what posting schedule you’d like to see and those who have shown their support. Today I’m writing to update you on the new outline and posting schedule I’ve decided on; also to ask a question to other bloggers.

From your responses so far to my recent posts, it seems that topics you would particularly like me to write on are eating disorders and life with / after trauma and abuse. I will make these topics main categories on this blog. The main categories will be: PTSD (including life with and after abuse and other trauma); eating disorders and body image; borderline personality disorder and dissociative disorders; mental health and finances; mental health and work; living with physical health disabilities as well as mental health conditions; question time (writing in response to questions you and others have asked me – this will of course encompass a wide range of aspects of mental health conditions and cross over with other categories on this blog); in the future I want to add a “help” section where I will outline coping strategies that help me, mainly regarding PTSD for instance things you can do that may help during a flashback.

The posting schedule I’m going to start off with is one weekly journal-style post and one weekly post on one of the above topics. I may be able to increase this but I think this is a reasonable aim to begin with. As mentioned before I will post outside this schedule at times. I think I need to choose what days of the week I will make my two regular posts. I’m thinking Wednesdays and Saturdays but I may change this – I’ll let you know when I next write.

You will have noticed the change of name to Dignity Beyond Trauma and at the end of the week I will write a post explaining the new name.

I have upgraded my site plan so will be giving this site a new and hopefully more accessible look over the next few days.

Finally, I have a question for other bloggers. Do you use another form of social media as well as your blog, for example Instagram or Twitter? If so what benefits do you feel this brings to you and to your readers? What should one consider before linking your blog to another kind of social media? It’s something I’ve been considering doing; I am not going to attempt it right now as I need to focus on sorting this blog but I am interested in the future. I’d be very grateful to know how it worked out for you. Thank you in advance.

Ginny xxx

Changes ahead

Changes ahead

I’m going to make some big changes to this blog over the next week.

It has been many weeks since I’ve posted regularly. My husband has been coming through major surgery for cancer. Another family member has been through severe trauma. We have been struggling through a heavy load of financial issues since last autumn. My PTSD symptoms are worse. I’m not coping with day to day basics as I want and expect myself to. I could go on.

However a big reason I want to make changes in this blog is that my posts have been too sporadic and too distressed and distressing. I don’t want this site to be just me venting and screaming about how hurt I am. That doesn’t help anyone.

Yes, I want to be totally honest in what I post. Totally real. I don’t want to turn the blog into a falsely cheerful, superficially positive story. After all I’m talking about very present and painful trauma, illnesses and struggles. I am not going to pretend that I have all the answers or that I’m “over it” and nothing can touch me.

Yet I am more than the damage done to me and the hurt of every day. I want to try to find that. I want to write about that. I want to be thankful for all of me and all of every day. Also, I want to incorporate more focus on what helps me cope and even heal.

I want to have a regular posting schedule and more defined sections on this site so I can share what’s happening in my life week to week, but also share information about what helps me and may help readers, answer readers’ questions, post in response to reflection about what’s happened to me in the past, how I tried to cope and why. I want this blog to be helpful to readers, partly through reflecting what living with PTSD and borderline personality disorder is like, partly through sharing resources and information.

Big changes are coming up. Please watch this space! Thank you!

Ginny xxx

Waiting and feeling like a fraud

I had to come to hospital this afternoon for an urgent MRI scan. I’m in a room off A&E waiting for the results. The GP told me I had to come in because my back pain, numbness in my legs and incontinence have got rapidly worse than usual and he was concerned I may have nerve compression. I feel sure the scan will show nothing or at least nothing new. Waiting and waiting it’s getting worse. I feel a total fraud. I feel sure they will tell me nothing is wrong. That I’m crazy. That I’m stupid. That nothing is wrong and there’s no reason for the pain. I feel panic and sick and dizzy thinking of it. I want to go home. My mind is spiralling thinking how angry my GP will be an how my relative who has found out I’m here, who doesn’t believe I’m ill in the first place, will use this to show how “it’s all in my head”.

I feel like I’m such a fake.

I want to go home to bed.

I’m so tired of pain and tired of hospital. Everything I’m trying to do, which the pain clinic tells me is meant to help, is making the pain worse. Or it’s getting worse despite it.

My head aches and my stomach feels like something clawing it and twisting from the inside out.

On the move

Its a few weeks until the wedding but I am getting ready to move house, packing boxes to go over to our new flat. It feels as though I’ve been trying to get to this point for months and not making progress, through a combination of my exhaustion, my physical disabilities and mentally being unable to make decisions or forward plan. At last we are making progress! Thanks be to God!

The approaching deadline of our wedding is certainly a motivating factor. So is the fact that we are putting our home together in the new place (my fiancée has moved there already). We are blessed that our financial situation is better than it was and this means for the first time – first time ever for me and first time for years for my fiancé – we can actually choose some furniture we like and pieces which all match or coordinate, to make a calm and restful environment for us both. It’s somewhere we both want to be and feel thankful to be. For the first time it’s not a move that’s fleeing something, escaping somewhere, or because of a loss (death, broken relationship, having no money to live, for example). We are moving to start our married life together and that’s wonderful. That helps me keep going.

It has been very hard for me to tolerate the mess and chaos of packing. My threshold for feeling overwhelmed and having a meltdown is lower than usual. I’m trying to recognise that and actively spend mental time focusing on the good we have achieved so far and the good to come. Actively thinking about the good is much more effective for me than saying “just don’t think about it [the things panicking me]” “just push it away” “just don’t worry about that” “you just have to keep it simple and be positive”. (What exactly does that last one mean, anyway?). I can’t “just” stop a thought or feeling by choice, and the fact I can’t do that when other people require it is likely to make me feel even worse. But I can dedicate time to thinking of a positive future, however imaginary it may seem, or to counting tasks I’m thankful we have achieved.

Yesterday a friend of mine in the parish took lots of my surplus kitchen things and clothes to give to a poor family and some refugees arrived in the parish. They will be able to use some of my furniture as well, if we can find a way to transport it.

Tomorrow a lovely charity are coming to take away all kinds of other things I can donate or that need to be disposed of, and to help me pack because I can’t physically do it myself. This is amazing.

My cat doesn’t think it’s so amazing and is walking around with a very suspicious look on her face. She doesn’t like a lot of bustle or things being moved round the room. She’s alternately ever so affectionate, then moody and trying to scratch. I think she has lived in so many different homes before I adopted her that she thinks she will be left again – that the signs of moving mean I’m going to go away and abandon her. Poor puddy cat has attachment problems just like me! 🤣

We shall have to see if her mood improves once she realises there will be lots of cardboard boxes to hide in…

Ginny xxx

Picture by memecenter.com

Undermined

I’ve just had a family member to stay who I find it very stressful to be around. She rapidly and repeatedly undermines and dismisses things I’m experiencing and what I achieve. She makes it clear she thinks I’m faking my physical health conditions, that my mental health conditions are my own choice, that I’m lazy, a let down and a failure. She starts gradually drip by drip until nearly every comment makes clear what a waste of space I am, her hatred of me and any sense I have of myself apart from her statements and blame of me is gone.

Right now I wish I’d cut off all contact with her as I almost did 5 years ago then 4 years ago when her behaviour to me, along with the circumstances I was living in, repeatedly put me in situations too closely mirroring those I was in as a child trapped with my mother’s emotional abuse.

But – and I almost didn’t write this – she’s my step mother and my father thinks she’s wonderful, and what do I do if I’m to allow him happiness… and keep some relationship with him… which actually, I think she would rather I did not have. It’s something else she’s gradually tapping away at. Rather as my mother did.

What obligations do I have to him? To her?

I’m seeing far too many circumstances repeating here. It’s very hard to try to go forward building up my recovery with this going on. But this kind of thing always will go on, and I need to make my own choices and change my own behaviour so I don’t act in the same way I did as an abused child.

Xxx

This boat is sinking

This boat is sinking

I feel rubbish that all my posts are negative at the moment. Like I can’t say or do anything good anymore or be thankful when there’s so much I really should be thankful for – am thankful for – but I’ve lost touch with it all.

Every single time there’s going to be a short moment or peace or rest the next disaster happens. That’s been life pretty much since I remember and I don’t even have things that bad. It’s stupid. Stupid because it’s insignificant in the scheme of things; when there’s so much deeper suffering everywhere around; stupid because I’ve got this far so why can’t I carry on.

But I’m running out of energy and mind and hope and everything else.

My fiancé’s been rushed back into hospital again today after months of fight with the doctors and being dismissed and going round in circles. We don’t know what’s going on or what they suspect or why they are doing the tests they are now. I’m useless for him because physically I’m so ill at the moment I have been in bed, unable to get up for more than a few minutes at a time.

All I can see right now is confusion, being overwhelmed, people I love hurting, me letting people down, mentally breaking apart.

We are going under Lord, is it nothing to you, the apostles cried out to Jesus as the boat was overwhelmed with the waves. I don’t know how much more storm we can stand right now. Where are you, Lord Jesus?

Xxx

Sleepless at the latest precipice on our path – PIP, and hospital

I so want to be asleep right now but my brain’s awake with useless whirring energy. This week has seemed so long already. My partner was admitted into hospital on Monday night after a fall and worrying symptoms. He was “only” in til Tuesday evening and thankfully is now safe at home but more question marks are hanging over his complex health difficulties right now. We feel so lost navigating the way through to get him the treatment he needs and cope with the process.

On top of this we found out today – through a text message he received whilst he was in hospital – that a big chunk of his PIP (a Benefit paid to people with disabilities) has been taken away following a review he had a few weeks ago. No warning, just stopped; just a text message with no details and no support. We are waiting for the letter detailing the decision. It seems crazy as his condition has worsened so much since his last assessment but it was what I feared would happen, because of my own prior experiences with PIP assessments. This is what seems to happen to so many claimants. With this cut, he will lose his car, because he has it through a mobility scheme tied to the component of PIP they’ve taken away from him. We are both dependent on the car to get anywhere. I will now be housebound except for when I can afford door to door taxis as I am too physically disabled to reach the bus stop and can’t manage on and off a bus without help. He will be in a similar situation. I don’t know how we will get to his almost daily hospital appointments. £25 – £30 per day on taxis there and back is impossible on our budget. I don’t know if we will qualify for hospital transport. Thankfully there are a few weeks before the car is taken away. We can appeal the decision on his PIP but I doubt a new decision will be made before we lose the car. His other Benefits may well also be affected because the rates paid are linked to receiving a certain rate of PIP or not.

So at a time when my partner is already under utmost pressure and stress with his physical and mental health, a legal case relating to one of his injuries, anniversaries of painful bereavements and traumas, finances, and multiple problems involving lies and deceit from people we placed trust in (leading to the collapse of several projects that we so hoped would bring stability and security to us and another family member and the apparent loss to waste of hundreds of hours of work) – now this. Now that one bit of security is gone.

It is hard to know how to carry on. It is hard to know where to get the emotional and physical energy to do what we have to do. I don’t know how to act or respond seeing the person I love suffering, hurting, being treated terribly, being let down and abandoned. My brain kicks into gear with the adrenaline in some way and buzzes with lists of what we have to do now, different outcomes and scenarios. But my emotions can’t keep up. Nor does my physical body. Right when my partner most needs me and I most want to be there.

It feels as though we are trying to find our way on a path through a jungle. Each side of us is dense vegetation and tall trees we cannot see through. We work our hardest at following the path, staying on the path, walking onward. We cannot see far ahead as there are always blind bends. Beyond each blind corner we don’t know how the track may twist or split. Even trying to be prepared for each possible eventuality isn’t enough. There’s always a stone, a thick fog, a sudden precipice you couldn’t see. Worse still, sometimes there are gaps in the foliage and you see through to sunlight and in the distance, a view stretching ahead of a safe and beautiful place. You work out the route you need to take on the rocky path you’re on right now, to reach that place, and your steps are a little lighter. Then without warning, a branch bends down from the trees surrounding you, coils round your middle, it drags you high in the air, spinning, crushing you, and then flings you as hard as it can and you fall back into the jungle again. Any sign of the safe place is gone. You find yourself beside another path but you have no idea what path it is; certainly it’s no longer the one you had worked so hard to follow.

It’s hard to keep on getting back on the path and you lose hope that any of the paths really lead out of the jungle. You almost know that the moment you think of the beautiful place, a branch will grab you and fling you as far away as possible from everything that have you hope.

That’s what it feels like. It’s self indulgent to express it but that’s what it feels like. Focusing only on our pain does no good, but that’s what it feels like.

We do still have homes. We do have the chance to appeal this decision. We can choose hope. We can do all we can to save money. We have so much more than many people and our lives are so different together. I can at least be here always, for my partner. We can trust that Jesus is with us, beside us, reaching for our hands.

I just needed to get it out tonight. Thank you for listening.

Ginny xxx

Trying not to choose destructive “safety”

I’m buzzing with anxiety and I don’t know what about. There are loads of things I have been really worried and upset about. But I can’t work out what’s bothering me right now. My stomach is knotted around a cold ache. An actual physical pain. My head feels the same as when my thoughts spiral but there aren’t any thoughts I can catch, just dizzy blankness. My legs are shaky and I’ve lost balance several times. It’s different from the dizziness and fainting that comes with the POTS. I wish I could make it stop. My tablets I regularly take in the evening usually sedate me a bit but it isn’t working. If I could walk for ages, or go running, maybe it would channel the feeling out of me (but I can’t since I can only walk a few yards with crutches).

If I knew why it would help. It’s scarier when the feeling is separated from thoughts. The emotional state seems to have a tighter and limitless hold on me even if rationally I ought to know it will pass. An emotion that shouldn’t be unbearable becomes so because of confusion, fear, and I realise now, the dread that is wrapped up in the associations of previous experiences of this emotion (abuse, being trapped, feeling guilty, feeling unable to stop terrible things happening because of me).

I desperately want to numb it and stop it. Drink, or cut, or binge, or take enough tablets to knock me into sleep. That seems to be the default response my mind and body make. I’m asking God to help me stay right here and feel and know I am with Jesus. This week leading up to Easter we are particularly close to Him in the suffering He went through so we could be with Him. In this small struggle that feels big right now, He hasn’t left me. I will keep on reaching out for His hand, praying and reminding myself of His goodness. Every moment is His way of coming to us now and sometimes we are with Him on a steep path, a storm or a lonely place. What matters is we are with Him.

It seems I’m saying what I really want to believe, rather than give in to the false security of numbness through destructive actions.

Jesus, please hold me, Mother Mary, please help me.

To be continued…

Ginny xxx

Looking for an app to track mood and pain

I am seeing a psychologist at the pain clinic for a short number of sessions. When I was first sent an appointment to do therapy I was really worried and almost angry about it, feeling I’d had enough of therapy in other services where I couldn’t trust the therapists or the community team and I couldn’t risk making myself vulnerable again. On top of that I was sure the therapy would be from the point of view that nothing is wrong with me, the pain I have is unnecessary and my fault because I’ve rested too much and not pushed myself enough, which is an attitude I’ve encountered too many times on so-called pain management courses. Amazingly it has turned out to be a very different experience.

I don’t tend to find pain is terribly related to my mood, beyond the fact that I’m more anxious and low when the pain is worse. It’s also connected to flashbacks but I don’t quite know how. We identified in therapy today that I find awareness of my body very difficult. Maybe that is common in personality disorder and certainly in dissociative identity disorder.

I want to try tracking my pain and my mood together to see if this may show up any links I’m not aware of. I’ve done the two separately before as part of learning to pace activity (I did not find the recording gave me any new insights) but I’ve not really done the two together, not over an extended period anyway.

Phone apps exist to track your mood but I’m looking for an app that tracks mood and pain. Ideally I’d like an app where I could record a numerical score for my pain and my mood every couple of hours through the day, with space to make a brief note if something very significant happened (for example if I have flashbacks or an event triggers traumatic memories or dissociation).

Have you used an app like this and did you learn from it? Any recommendations would be very helpful.

Ginny xx

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