We all need to be heard for a little while.

System

dragonette wrote: »

Thank you! I hadn't thought of a detailed diary, i will try and see if it helps. I know I very quickly normalise my symptoms - doesn't everyone need to balance a hyper sensitive digestive system with needing high energy food but not having the energy to ready much or I'll collapse? Hmm. Yeah.

Time to start a diary.

Good luck Melly, glad you got some more sleep xx

Keep a diary can be quite eye opening. I did it back when i applied for DLA (CAB's advice) and it did highlight things which i'd normalized. This is going to sound really bad, and its embarrassing to admit but it made me realise things like peeing in bottles because i was too depressed to even leave my room to go to the bathroom (seriously, i can't believe it was that bad, but thats how it was) wasn't something most people do. Or the fact i couldn't keep track of how longs things had been cooking, and actually set the oven on fire multiple times, or being too drowsy to realize that picking up a tray out of the oven without oven gloves was a bad idea. I detailed the times i needed someone to actually encourage me to take care of myself. I wouldt shower for a week or two at a time unless someone actually led me to the shower and waited till i'd done. Obv these are all MH ones, but yeah, try and think of the little things extra that you have to do to stay safe and detail them all

Waves_and_Smiles

Exactly dragonette, it is so easy to normalise your everyday life when you have lived it for years. In my case I don't particularly find many aspects of the way I live odd, but to other people it can seem totally weird, complicated and restrictive. Because I feel mostly stable I see it as if I am doing fine and don't think about the fact that it is because I have adapted to my illnesses and severely limited my activities. The reality is I am fine as long as a large amount of restrictions and adaptations are in place, remove those and I fall apart. These are the things that need to go on the forms, the small things during your day that stop you living as others would. Imagine yourself in different scenario's, for example working. What is it about travelling to a job and working all day that your illnesses would prevent? Why wouldn't working close to home or from home work out either? How do they restrict you socially if say you were out for an evening with friends? These are the things the assessor is looking at.

Also, I have a huge problem that the forms make me feel like a failure and I don't want to be one. So I am inclined to list the things I can do and try to be optimistic for my own self-confidence and so I don't sound like I feel sorry for myself (Yes, I worry about what the assessor may think of me). This doesn't help because the assessments are based on what you can't do so it doesn't give a true picture. So do try to avoid that but don't make it sound worse than it is either, be as accurate as you can be and make sure that your doctors know exactly how your conditions effect you in case they are asked.

Do be warned though that if you keep a diary it can feel very upsetting. I don't think about what I can and cannot do until I write it down and then compare it with what an assessor would see as an ordinary life. I was thoroughly miserable for a while after I did mine, I prefer not to think about how differently I live to most people and I found it very sad to consider.

Aw, MU. You can pee in bottles and I can pee in my jeans. As far as showering goes I went for 6 months without showering or washing my hair once. I didn't realise anything was wrong with that either, it just seemed like too much hassle and I didn't leave the house for that time so it didn't matter to me. My days would be spent making word graphics on the computer where I would write every word I could think of about how much I hated myself and cover the words with violent images of self-harm, and holding long conversations with the voices. I began sleeping on the sofa and would wake up and stay under a duvet all day until bed time when I would simply lie down again. I was actually very ill, but too ill to realise it. I stopped my medication because I was convinced that I didn't need it and if a benefit form had arrived at that time I likely wouldn't have even filled it in because I thought I was perfectly well.

mellymoo74

Still fighting WaS
Mental health services are pants.

mellymoo74

Awake

Again
Grrrr

elsien

Radio 4 tonight at 8, if anyone's interested is a programme called Minding the Gap, about the shortfall in community MH services.

WAS, I'm curious, who was supporting you when you were that ill? Just wondering about the practicalities such as food and money?

Stoodles

Oh this is all very close to home. It's such a shock to realise how abnormal my life is, because as you say , we become accustomed to the way we live. I said recently, provided I don't do anything I'm stable. It was pointed out very gently to me that the objective is for me to be able to do things and remain stable.

I had the same experience with completing the ESA forms - being used to doing this sort of thing for work, I got hold of a copy of the criteria, and wrote as accurately/honestly as I could to them. It was devastating to see how far from normal my day to day life is. I had to spend days filling in a bit at a time, and then going off to soothe myself. Being put in the Support Group, without having to appeal, felt more like a defeat than a victory.

Yes, Melly, MH services are complete pants. Keep fighting. I got there in the end. I've been trying to get the treatment I need, that NICE recommends, since November 2010. It finally started this year and I do believe there is hope now. It's still so hard, but it's painful and scary and disturbing with a purpose.

heartbreak_star

Some of the stories you are all telling are such eye-openers. Some very strong people on this thread!

Had a dreadful night last night, my therapist is currently trying to get to the bottom of my self-loathing, and yesterday's session was very hard. This led to a couple of glasses of vino and some incredibly disturbing dreams.

Hopefully work will go quickly today.

HBS x

Waves_and_Smiles

That is exactly as how I look at it Stoodles, as long my life stays as it is I'm fine most days. A therapist looked at me in horror once when I described how I live and told me I was living in a mental illness bubble. Perhaps that is true but it is my ordinary day and as long as I do so I stay relatively stable. It is so depressing though when I realise how differently I live compared to other people, I try not to think about it.

In reply to elsien, I am going to penguin this bit in case it upsets anyone. Talks about living through a psychotic break-

When I was very ill in the past I was on Incapacity Benefit, I didn't go to my psychiatric appointments and the system just forgot about me. WaSp had no idea what to do with me and withdrew a lot, he increased his hours at work and he just felt helpless, he also cried a lot. He would do the shopping and prepare my meals and make attempts to shake me out of it but I would just get annoyed and insist that I was fine. At that point I was experiencing periods of uncontrolled rage. If I was questioned or something went wrong I would suddenly be overcome with tremendous anger which I would then physically take out on myself, often screaming and ripping out handfuls of hair. WaSp learnt not to say a word.

I used to comb talcum powder through my hair and cover myself in perfume before he was due home so he would think that I was washing myself. Because I slept on the sofa he never really got close enough to me to find out otherwise. I would come up with stories for Wasp of how I had been out to the park and watched tv when in reality all I had done was make my word collages, I had over a hundred hidden over 6 months. I wore long sleeves all of the time to cover the self-harm and would flush my medication down the toilet so he thought that I was taking it. I thought he wanted to control me and take me away my freedom so I become very adept at covering things up, I thought everyone I knew at the time was talking about me with him and plotting against me and I cut off all contact with friends and never left the house, I wouldn't even open the curtains In my mind it was me against the world and I thought that everyone was trying to change me and brainwash me, it became a game to outwit everyone else.

I was so ill that I didn't want things to change, it gave me satisfaction to live the way I did and an excitement in covering up what I was doing and 'winning' against those I believed were against me so I hid it as much as possible so that I could continue. At the same time I was absolutely terrified on a daily basis with tremendous psychosis related headaches and voices screaming at me. I became very devious, I learnt to cut my upper thighs because no one could see it there and hide all of my computer graphics that had all the words I used to hate myself with . It finally ended in a suicide attempt, WaSp found me and called an ambulance and that was when doctors realised just how unwell I was.

Similar incidents happened on and off for 10 years for varying lengths of time and after the last one was when I decided to shrink my world in an attempt to keep myself stable. This is why I am taking things so slowly now I am trying to do things again. I simply cannot allow myself another relapse like that.

Big hugs, HBS. I know how hard it is when you start looking at why you don't like yourself. Try to do something you enjoy, a couple of glasses of vino and some chocolate fall into that category. I hope it is an easy day at work.

Waves_and_Smiles

Remember I bought WaSp a couple of plants? The bromelaid has reached the stage of producing offspring. A few days ago I noticed a single baby plant, I have just checked and now there are 6! I quickly looked up what to do and they need to be removed when the babies reach half the size of the adult which takes a few months. Then the mother plant immediately creates more babies and this can go on for 2 years! I hadn't planned for this and of course me being me I can't throw them away! What happens when the babies start producing babies?! Anyone want a plant? Or 4?

calleyw

heartbreak_star wrote: »

Some of the stories you are all telling are such eye-openers. Some very strong people on this thread!

I agree and very heartbreaking to hear.

I must admit that I often don't shower/wash/wash hair put on makeup for a 3-4 days at time if I am not going out any where. I don't have visitors so not even sure why I keep this place tidy. But I have started to do for myself I suppose.

I think I last had shower on friday!!! Was going to have one today as going out but cancelled it as a bad night and now a bad day and having a duvet day the 1st in weeks.

Not good at all. Actually very bad. But its rather too painful and I don't think even a pingu is a good idea to say how I feel today.

Everyone take care and hugs all around for all that need them.

Catch you later.

Yours

Calley