Tag: physical health

Clearing out my flat and trying not to go out of my mind

I didn’t know it had been so long since my last post. Life is chaotic. Either I’ve been too low to write, dealing with flashbacks and triggers or scrambling madly to keep on top of more and more pressing demands.

Perhaps I’ve actually achieved quite a lot, with the unending support of my fiancé. We had to put in a “mandatory reconsideration request” with the DWP for his Personal Independence Payment (PIP), including a lot of extra information and details of everything they had got wrong in their report about him. This meant a huge amount of research and writing. In itself it was a daunting task. There were others we tackled this past fortnight too. Perhaps I should feel pleased we did it. Instead I just feel exhaustion, anxiety and upset (at the lies in the DWP’s report and the ramifications for us of his PIP being cut). If I could feel some sense of achievement I’d feel more thankful and encouraged; I’d see how God is leading us step by step. When despite hard work there is still a maze of uncertainty and upset and no conclusion to the situation – in this instance, we have to wait indefinitely to hear back from the DWP as there is no timeframe within which they have to respond – I find I can’t see what we have achieved. Even when others can and are optimistic.

This month several notably positive moments got lost in the anxiety and depression and desperate hamster-wheeling to meet deadlines. For instance I had a couple of great psychology sessions at the hospital. I need to take the time to build up from that.

Meanwhile as a way to try not to lose it completely I’ve been clearing through my flat – again – putting everything I can for sale this time. I haven’t sold as much as fast as I’d hoped but it’s better than nothing. At least it feels like I’m adding a little more to our savings for our future. Listing items for sale online takes more time than I’d expected, accounting for photographing, pricing, listing, checking postage and keeping on top of enquiries.

I signed up to eBay which I haven’t used for some years. It’s been helpful and I’ve sold a couple of things, as well as buying a couple of cheap smaller size clothes I needed as I’ve lost weight. However straight away I am faced by constant temptation to buy things I don’t need, or binge spend when I’m low. I’m worried what I might do if I shop on there when I’m “gone” (when I’m dissociating) and I spend impulsively, taking me back to the state I was in when I shopped and shopped and accumulated bags of things I didn’t recognise or recall buying. It would be worse to fall into this now when it’s not just me but my fiancé’s life that would be affected. I need to put some safety measures in place.

Ginny xxx

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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

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

Q – “Have you got your hearing aids in?” A – “Pardon?”

I thought I was losing my hearing. Over the past 2 years or so, I’ve found myself asking people to repeat themselves more and more often. I noticed it particularly when I was working in the department store. What customers said came over as a jumble of sound to me, often as though far away, or sometimes I’d miss it entirely. At the day centre where I volunteer, a couple of the elderly clients remarked that my hearing was terrible an I needed a test. Discussing this with a friend, she commented that she’d long thought that my hearing was worse on the right side.

So I booked a check up and hearing test.

I had my ears checked and syringed. Nothing remarkable was found. No mountainous heap of gunk blocking my ears 🤪.

I had the hearing test.

Everything came back normal.

What is happening?

I’m left thinking that my hearing “disturbances” are to do with attention, dissociation absences, or the effects of overwhelming anxiety. Certainly, high anxiety affects my attention span and my memory. I can talk to someone but not take it in, or not remember what someone has said. Dissociation definitely affects my memory and I lose big chunks of time, not knowing what I’ve done whilst I’ve been gone. If I’m very emotional, I may be unable to remember events before and after the time of heightened emotion.

Is my weird hearing loss / confusion also because of anxiety, distress or dissociated absences? So not only is my memory affected, but also the information does not come into my brain normally in the first place?

Does anyone else have this problem?

Whatever it is, it’s scary. It disconnects me from the people around me, as if I’m floating in a vacuum or surrounded in bubble wrap. Sound doesn’t pass through the bubble wrap wall at all, or if it does, it’s chaotic noise that’s very unsettling deep into my mind and body. It makes me scared and I just want to get away.

Maybe it gives me some insight into what it’s like for people who live with deafness.

Ginny xxx

Voids between my mind and others’ minds

I feel so sad and I’m doubting my mind. I clashed with someone I care about. It doesn’t feel right to put the details here much as I want to. Basically I felt we need to make a fact very clear to someone we are working with, a fact that ought to have been made clear from the start. In itself the fact isn’t right or wrong but it does totally change what we are offering the person and what they will expect and it’s absolutely necessary to say it. The person I clashed with thinks there’s no need to say it, it doesn’t change anything, nothing was ever promised. I tried to explain what I believe and he said he would write off working with the person completely.

There’s more to it but that’s all I can say here.

It sounds like a tiny thing but it’s shaken me and got me lost about how I see things and how others see them and the gulf between that. What I see as a clear duty when others don’t. What I expect. How I deal with uncertainty (rather, don’t deal with it). The gap there is between my mind and the people I care about. It’s brought back the ever-near memories of people telling me I expect other people to look after me, or that I didn’t keep my word, my responsibilities, when I was doing all I could to get it right for everyone and hurting myself to punish myself for my failings and still wasn’t good enough.

I’m sad. It probably doesn’t help I’ve been ill physically this weekend.

I know this blog has been too down and negative lately and I need to change that. I’m sorry.

Ginny xxx

Facing how much I need to lose

Warning: this post contains discussion of weight, weight loss, body image and eating disorders.

I have lost control of my eating and my body size completely. I’m the heaviest I’ve ever been. I’m disgusted at myself, expanding and ballooning. The voices love it – greedy, pig, ugly, foul, repulsive… we’ll always know how bad you really are… images of rotten evil and greed bursting out of my skin… cut it all off, cut it out… 50 kilos. Lose 50 kilos then keep going.

It’s so much and so unattainable I let the despair close round me. It’s cold and numb first, then comes the bingeing. I don’t know if it’s a result of the despair. Often it’s a result of hunger that won’t be satisfied and demands more and more, til I get rid of it by purging til it hurts so much.

I am fat and more than fat.

I want to lose 50kg. I have the idea that then I could look at myself without so much hate and disgust and then the voices might be satisfied for a while, if only I could maintain it. Objectively I know losing 50kg would be too much and would put me in the anorexic weight range. I know losing 40kg would put me at the very bottom of the healthy weight range. I desperately want this then desperately want those 10kg more, to get rid of the fat greedy consuming thing inside me. To get rid of the evil inside me. Then I could look at myself. Then I’d have control back. Then maybe it would stop. Please. Please would it stop.

Why can’t I just do it, like I always did before? Why have I lost control?

I’m trying to be objective. Trying to think about losing 20kg first. Trying to focus on goals, not specific weight targets week by week but on good things that are coming and that will be even better if I lose the weight – going abroad in February for my fiancé’s work, being able to do more of my physiotherapy exercises, our upcoming wedding, and so on. Trying to remember that my fiancé does not think I’m disgusting or greedy or bad or anything else the voices tell me, and that he loves me and does not require me to change. Yet I have his support to lose some weight to take care of my health and that’s a wonderful help.

I’m going to try to identify specific actions I can take to stop bingeing and start losing weight.

Looking objectively, why do I think my weight has gone up out of control?

  1. Greatly reduced mobility because of my degenerative health conditions getting worse. I used to walk loads a few years ago but now I need a wheelchair.
  2. My medications – quetiapine and other daily medications I take increase my appetite and affect metabolism and cause a lot of weight gain.
  3. Binge eating repeatedly on sugary foods and other carbohydrates. Insatiable hunger. Yes I frequently purge or restrict after but it can’t get rid of everything and it’s dangerous in itself.
  4. Relying more on convenience foods because I’m not well enough to cook and at times when I’ve been really short of money.

How can I change this?

  1. I can’t exercise in the usual sense of the word but I can prioritise my physio exercises and then when I’ve lost some weight, going swimming. I’m changing my daily routine to make sure I fit these in.
  2. I can’t change my medications, at least not short term.
  3. I will not keep trigger foods in the house. At first I will greatly restrict the food I have in the house so there is literally nothing to binge on. I can’t leave the house unaided because of my health so won’t be able to go and buy more. My fiancé will help me get small quantities of non triggering foods and occasional treats only. I’m amazingly fortunate to have his help. This isn’t a permanent solution but might help for the first couple of weeks.
  4. Though I still need to rely on convenience foods because of my disabilities, I will stay within a daily calorie limit.
  5. I will research any advice I can find for coping with binge eating disorder.

How can I keep the rational part of me in control rather than whatever drives the insatiable hunger? I really don’t know what drives it. When I was anorexic I had found something that shut off the hunger, but I don’t know what it was. The disgust I felt for myself then and the disgust I feel for myself now are pretty similar. In fact I feel more disgust for myself now. If disgust doesn’t shut the hunger off, what does? I think if I knew that, it would stop me bingeing.

Ginny xxx

House clearance

(So I just wrote this, pressed publish, got confirmation it was published but then it vanished. Aargh. Here we go again. Apologies if it has only vanished for me and you can still see it, in which case this is duplication!)

I’ve just had a house clearance firm come to give me a quote. Years of hoarding, clutter, old and broken furniture, cupboards of near useless and unnecessary items, have all got too much. I’ve tried and failed repeatedly to get through it myself and with my partner R’s amazing help. We can’t manage it. As my physical health has got worse, I can’t manage day to day or keep on top of housework and daily living like this. It’s no nice place for R to spend time either (we are not living together but of course he comes here most days). So it’s time to change this. I got the quote (yikes £££) today and next week it’ll be done. I feel intensely guilty and anxious but also desperate for the resolution.

Ginny xxx

So far beyond the limit

I am so stressed and strained beyond the limit. I’m trying to care for my fiancé. I can’t. He’s yet again been discharged from A&E, this time with DVT having been told he could have a pulmonary embolism at any time. No plan in place. Vascular problems, tumour, hernia, unidentified lump in his stomach, knee operations, diabetes, hips going to need replacing… how much more, how much longer Lord? Why? I’m screaming and crying inside. How much worse he must be feeling. Again and again after every emergency and discharge we are no further forward. All the risk and pressure falls right back on us. I can’t do it. I’ve been overloaded for weeks or months. Way beyond the breaking point. I need it to stop. Already I’m drinking with my medication to try to get knocked out. I cannot cope with yet more emotion and pressure. Cutting, bingeing, purging, everything is worse. I have no mental health support now, nor does he, so what can I do? Time has slowed down. I’m hearing things. I need it to stop. Please God, I want to say I know you will answer and not turn away from us forever. But I can’t see You or hear You or feel You. It’s been a long time that way. Xx

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