Depression and faith

I can honestly say knowing God has saved me - in more ways than one 
He has got me through this far and he still keeps me going. He is getting me through this depression. 
Getting through it is not dignified, by no means graceful, smooth, and having faith does not make you immune to illnesses, mistakes and sin. But every time I get to the end of my tether, when I hit the bottom, I hit the rock. He is the reason I'm alive. I love the song 'majesty' - 'I'm empty handed but alive in your hands'. Getting through depression, is more like stumbling around in the dark, even with the light of the world inside me, there's the depression battling against it, like CO2 gas - starving the light of oxygen. It's all-consuming, suffocating, and by myself I can't overcome it. 'Let go and let God' is hard, but sometimes is the only thing I can do. I need to do that a lot more, cos when I do, I feel so much more peaceful, and sometimes even positive. Just lying in my father's arms.
Fed up with being in here. VERY. They put an ng tube in me this morning - I agreed cos I wasn't really awake, nd thought it might be easier to have food in there, than eating it... but even when it was properly in place, guidewire out etc, it was still making me gag and feel sick, cos it was pressing against the back of my throat. Wondering if it was so uncomfortable cos of the corkscrew oesophagus, the would've been moving it all over the place whenever I swallowed. (the smooth muscles in my oesophagus don't contract evenly, makes it virtually impossible to swallow bread and stodgy stuff.) 
But going downstairs with Mum in a bit to try n drink a hot chocolate. Matter over mind. Just drink it! :/ 
Wish me luck x

Here I am.. Again.

So I was in big trouble, came into hosp sat eve after feeling even worse. They started a glucose drip (with much protest from my stupid, useless pathetic tint brain of mine). But managed to passively let it drip through. Dunno what the docs are on about here, linking this admission w my other past crohns admissions ? Anyways. Getting finger pricked every few hours plus obs.. Went a bit hypothermic today too, low bp, tachy, guess that come from the lack of fuel.
It's very frustrating. My brain just wont. let. me. eat. anything. Not even a glucose tablet. ;£/@(/£;! Brain!!! Shut the heck up!! For once... Can't it just leave me to live my life. That's all I want. The freedom to live my life.
Everything seems to've lost its point. If I really have a pd and really am never going to get better... Then frankly I don't think I really want to live the rest of my sentence on earth being held in chains by my mind. It's constant, unrelenting torture.
They're currently threatening to give me an IM glucose injection. Ow! I'm already bruised all over, and has an IM injection this morning for the adrenal function test they wanted to do. Then the consultant was going on about not making me into a patient and not doing any endoscopies etc.. Well duh... I'm not in with crohns!!! It's my £@)! Mind this time! No idea what he was on about. Hopefully my consultant will come up n put the record straight.
Anyways getting fed up n downright grumpy now so will shut up.
Night all.

Stigma

At one of those points again - my dreams feel utterly unachievable. 
I put on my profile page what I feel to be the most accurate part of my diagnosis. However they (psychiatrists etc) see my main diagnosis as Borderline Personality Disorder (note - I do not! I don't meet the criteria, they just don't know what's wrong and that's the closest fitting label they can slap on me, and one that also means they have to do sod all!). Here are a few quotes from a recent article on Personality disorders written by a UK psychiatrist: 'the personality disorder itself will always be there'... 'absolutely not a mental illness.. it's in the very fibre of their being' but this is the one that really made me angry: 'A person with a personality disorder is in full control of their actions and behaviours, just like the rest of us. Of course they are - their personality disorder is them.'
So they see this disorder as me... woah woah woah, hold on a sec - Let's just be clear here - THIS IS NOT WHO I AM. Telling someone they are their disorder surely cannot help anyone. Basically, you're not ill, it's just you. How does that help anyone apart from the mh services - letting them 'off the hook' - you shouldn't force someone to change who they are, so they don't have to do anything. 
I don't feel I meet the criteria for BPD; I have been diagnosed with co-existing depression, but no appropriately aggressive treatment or therapy has been offered for it. A referral for an assessment for aspergers syndrome was mentioned, and I was under the impression I was just waiting for a date for the appointment, (4 months ago) but unknown to me, my doctor had decided that even if I did have aspergers, they wouldn't change my treatment so having a diagnosis wouldn't help me. Wouldn't just knowing I do or don't have it help me to understand myself better? Going to make an appointment with her to discuss it...
The attitudes towards Personality Disorders really anger me. I think right now, it's about as understood as autism was 25 years ago. Lets hope the same amount of research and awareness goes on to bust the stigma and incorrect assumptions a lot of people make. 

Silversmithing and a bit of a moan

Feeling actually very low this evening. Not entirely sure why. 
I guess this morning wasn't pleasant but nothing I'm not used to. Had my social worker come over to help me fill out these forms to do with all the welfare changes. They're changing me over from Incapacity benefit and income support to Employment support allowance. Which basically means the government are trying to save money by getting ill people to attempt to work, as they've changed the 'rules' as to who qualifies as 'fit to work' (or not). So had to fill in a form about things like can I put my arms above my head, and can I walk up 2 steps with a rail... with these kind of stupid questions even my brother might be declared fit to work - which is utterly ridiculous. Just stupidly worded questions... Physically am I capable of doing a weeks shopping at the supermarket? well just about, most weeks, except when the neuropathic pain and/or Crohn's is really bad. Mentally capable though? Not a chance!! Even with someone with me I can't do it (well) at the moment. Bought a lettuce, some baby corn, half a cucumber and some vegetarian 8Kcal pots of Jelly last week. (which, by the way are now on my list of worst tasting things that people think are consumable). It Also brought up a lot of stuff about my 'diagnosis' ... yeah. Lonnng story... I'll write about that another time.
My innards beneath my right rib cage are feeling squished everyday now, it's really uncomfortable! I know I'm moaning (again) but I need a good moan today. I just can't get comfortable, sitting, standing, lying all are equally uncomfortable, even trying to stretch out doesn't work. And that's not even the painful bit, that's just the annoying bit!
Spent the day piercing, filing and brushing a design for a pendant I did the other day: 

It's still work in progress, might solder on some antennae, and def got to work on the brushed finish more, create a matching brushed jump ring of some sort - but that's the basic design shape, got smaller ones lined up to be earrings. 
Working out the price is a nightmare, that used about 20g sterling silver, which cost around £17 alone, that's without costing in time (8 hours so far for design and piercing.. say min wage... that's £40), tools(a lot!!), a chain, (£15) ... and it's nowhere near finished yet, I have to be looking at selling it at £75 ish, but all the local shops take 50% of sale price, I can't sell THAT for £150!! (that's $230 for US friends)... But anyway, it kept my mind busy for most of the day. I'll figure out how to sell it another time! Got a whole cabinet full of beaded silver stuff that I need to shift. Was going to do some stalls at Christmas but I was in hospital. :/
-sigh- Recently, it's just been like everyday I'm so exhausted by the end of it I don't want to have to wake up just to do it all over again. It's not necessarily doing anything particular that is stressful. It's stressful just being awake, and very scary being out. Becoming a bit of a hermit. So trying to get out more so it doesn't get into too much of a habit.  I need a life! But don't seem to be capable of obtaining one. At the moment, even dreaming about one is not really happening.
So ... I'm going to shut up and go to bed I think! Managed to get to sleep before 1am last night!! Hopefully I'll get to sleep even earlier tonight. :) Night X

Illness, faith, healing (or lack of!) .... and still loved

Feeling calmer now. 
I haven't done a lot today, had a lie in, did some exercise, got up and stuff, then played some piano and guitar, then went to church. (Note: there is a lot of content in here about my faith. This is a blog about me and my life, and my faith is a huge part of that, I make no apologies for the content) Was looking forward to church, knew I needed to be filled with God again. 
Got there, and just.... bleh. Felt flat. Tired. Sat down through the worship only thinking about how cold I was and whether I could just go home! But Listened to the talk, (which I didn't think was going to be relevant to me at all)... Yet God spoke. 
I have struggled so much with the fact that I've been ill for so long, God has the power to heal me, I've asked him to do so, and been prayed for many many times, but it hasn't happened. I'm STILL ill. Don't I have enough faith? I asked. Well, I may not have a great deal, but I do really believe God can heal me. So I had unconsciously concluded that God couldn't love me cos he hadn't healed me. He is just watching me suffer. 
In this advanced society we need answers for everything, I am the worst for it. I need to understand everything. Jesus calls us to be humble like a child, (Matthew 18:4) e.g. trusting in the Father even when we do not understand. God also says in Isaiah 55:9 That "just as the heavens are high above the earth, so my ways and thoughts are above yours." We don't like being told we're below someone, but this is the God of the universe, I think it's fair to say he has more insight and thoughts and ways we cannot understand, and may never understand in this lifetime.
Basically God said, "I still love you" even though you're broken and have not been healed. I don't understand why I'm like this, I'm just clinging to the truth that God loves me. I feel more peaceful this evening. My mind is still in turmoil (planning how many calories I'm going to be allowed next week and how much of each sort of exercise I have to do, what weight I need to be by the end of the week) but my spirit feels peaceful. 

Today, this week and why depressed people HATE talking about themselves.

Not a good day today. 
Feeling physically and mentally exhausted, in pain and just... exhausted again. Everything is irritating me, every song, tv program, situation, person... even the sun! I'm just too tired to deal with anything or anybody! (and no it's not pms!!)
Took Andrew bowling with Mum (and apparently even bowling is too much 'exercise' for my stupid body to cope with! now my intestines are hurting and bleeding and my scoliosis is making my ribs squish my innards too) Together with the combination of Andrew's incessant wittering about random nothings, {his clocks, the weather, or how that 'idiot' doesn't know how to drive - note any person: on a motorbike, push bike, with a loudish exhaust, who over takes us (even on dual carriageways), who brakes moderately sharply (even when they need to) who stops for whatever reason (traffic lights, roundabout, junction, turning off, pedestrian crossing) - all count as idiots.} not getting much sleep, and not having eaten much recently all have made me very very tired. Have eaten now, but have no more energy and it's just made my intestines hurt more.
Been thinking a lot about Grandpa the past few days, and yesterday found my journal from around the time he died, and my life started unravelling at the seams. Guess it surfaced a lot of forgotten about stuff about the start of my illness that's very painful to go back over. Little nieve (sorry can't find accents) comments like '..... when I'm at uni, if I ever get there! :P.' Was thinking that sarcastically, as if it were a dead cert that I'd go to uni, even if delayed by a year. A year! pah! a bit later on as depression got a lot worse, I couldn't imagine myself doing anything in the 'real world'. Let alone anything like I had previously imagined. One thing is for sure though, I definitely did not ever, in a million years, imagine I would end up here. 21, Living alone in Chalford, having no formal qualification past GCSE's, no job and not enrolled on any current educational course. (This is why I find small talk difficult - this is generally how it goes:
Person: Hi, How are you?
Me:  I'm ok thanks, you? (not OK by a long way, but anything else is too difficult to explain!)
Person: So what are you up to now?
Me: Oh not much (now looking for an escape route)
Person: Are you working, or at college/uni? (As if those are the only possible options!!)
Me: No, not at the moment, I've been off ill. ('off' what I'm not too sure! Life I think!)
Person: Oh I'm sorry to hear that.....
------awkward silence------
Person: Well it was nice catching up with/meeting you, hope you feel better soon!
Me: yeh, you too, bye! (runs out of situation before being interrogated again - I know people don't mean to 'interrogate' you, but that's what it feels like!!)
Some of the places I have been both physically and mentally, no-one can begin to understand without having been in a similar situation themselves first. I have now learned to avoid many situations which often lead to 'interrogation' or if I must enter one of these situations, always with Mum, who can talk about her life instead of my... non-life. Also Andrew is a remarkably good distraction too, cos he doesn't stop talking, ensuring he always in is control of the conversation and everyone's attention! 
It's much easier if people talk about other stuff like the news, the weather, themselves, anything BUT me!! 


And that is the end of my waffly-rant for tonight! x

Nan, winter and battles

Went and saw Nan this afternoon... def not a good day for her :( Think she was getting confused with Mum not coming up til later instead of in the morning and her lunch coming late. She said her carer didn't turn up... the one from the place she lives... (there isn't one at the place she lives, it sheltered housing, not supported or a care home)  On the phone a few weeks ago she said to my uncle that her 'carer' had been coming in, when asked her name, she said Helen! (that's my mum) ummm.... it seems like she's dissociating between Mum when she comes to look after her, and Mum when she comes in the afternoon or with me... very odd... and worrying :/ -sigh- I love her... it's difficult, wondering whether next week she will still be alive... or know who I am.
Been doing some more illustrator tonight, as Mum is at hers cooking dinner for Paul and his... Aunt? Cousin? and husband. Managing (with much resistance from my head) to eat a little more the last few days.  Really hating it though. 
Hating my flat too, it's TOO COLD! My electric bill was wayyyy too high, and it's the night usage, i.e the night storage heaters, I've got the little one in the hall on 3/6 but it doesn't seem to really do anything at all. I can't sit in the living room without coat, scarf gloves etc on, which doesn't exactly lend itself to making jewellery. So when I'm at home, to keep warm I'm generally in bed, on my laptop or watching TV. At least I (sometimes) do something useful on my laptop like this evening. 
Battling your mind every minute of every day gets tiring... (to put it mildly) People act like you can just 'decide' to do or not do something. It's just not that simple. If only it was!! Do you think I'd choose to live like this?! All we can do is fight, every minute of every day until things (hopefully) start to become a little easier. 

Sunday

So today has been ... another day. Don't really know why I'm updating.. just basically without going into too much detail cos it's late, pain really bad today, but church was good. Even if i sat through most of it with my eyes closed! (v sleepy from pain killers) A lot of questions but a fairly simple answer from God: at the moment, he wants me to rediscover my identity in him, as a daughter, and really concrete that. 
Very difficult relating to God 'the Father' I mean I love my Dad, and I'm very grateful to Paul for all he's given me; but I still don't reallllly know what a Dad is.. or supposed to be. My idea of 'father' is somewhat sketchy. Closest person I've really considered to be a consistent father figure is.. was... Grandpa. I'd even planned that I wanted him to give me away on my wedding day... it never even occurred to me that he might not live to see that day. I named my flute after him as well, (given to me by mum and Paul when I was 12) He always was a very very important person to me, far more than I ever realised. 
I don't think it's any co-incidence that my life fell to pieces after he died. People say it gets easier with time... it doesn't. Or at least hasn't yet for me. (In tears just writing this)
I wish he was still here and I could at least tell him how much he meant to me, what an inspiration he has been to me, what an amazing, kind hearted, loving, giving, caring man he was. I wish I could tell him, even if he couldn't do it.. that I wanted him to give me away when (if ever :/) I get married. 
I will never understand why he was taken then, leaving my nan to struggle on without him. He was everything to her. She still keeps a big framed picture of him on a chair, and has done since he died, she just doesn't seem to want to live without him. She keeps saying things like 'hopefully the Lord will have mercy and take me up to be with Dad (meaning Grandpa) by then' I love her dearly, but with the pain of the arthritis and the horrible confusing mess of Alzheimer's ... she's suffering a lot now. She wants to be at rest and with Grandpa again. 
Walking into that church even just makes me teary, I cannot hear the hymn 'love divine all loves excelling...' Not even the music, the words, just makes me cry and cry .... 
Well that was probably more detail than I intended or was necessary, but I must try and calm my brain now to get ready for sleep. Got 3 hrs of rubbish quality sleep last night. hoping for more today! 

Night all x

Pain, more pain and a self scooping, self flushing cat toilet.

Not so good today - crohn's playing up
(it's an auto-immune disorder, immune system attacks gut, makes it bleed n many other nasty things) at the moment I've been bleeding in my gut for about 4 weeks. Last couple of days it's got worse, got horrible joint pains with it too (my knees are always the worst). Been having some neuropathic pain today as well, it's always worse when I eat, especially after having not eaten for a day or so. (forgot to mention didn't actually eat anything yest) So I'm going to try to make myself eat at least something everyday (at this point my mind is screeching at me!)
Think tomorrow I'm going to try some soup, n hot chocolate. Possibly a slice of bread with the soup but bread is one of the worst things to swallow for me... and it's carbs!!! Maybe a petit flouis.. (can't spell!) got some of the 50kcal kids ones in the fridge.
On a lighter note - found something absolutely hilarious today in a cat magazine!! http://www.catgenie.co.uk - self cleaning, auto flushing... cat toilet thing... flipping expensive but actually made me cry with laughter!! You even have to hook it up to the water mains!! SO SO funny, do check it out if you need a laugh.
Anyways, going to vid chat to a friend now :) After a really emotionally taxing couple of days, after praying about a lot of stuff, actually feeling peaceful now. Brain has stopped whirring for a tiny moment.
Gotta go, night night x

Testing...

Hi, just testing the page and fonts etc, today has been OK (in relative terms) 

Took Andrew out (my bro - who has cerebral palsy and autism - but that's a whole other post.. or book!!) and he seemed pretty happy and non grumpy for him recently, which was a relief after last Sunday when he was leaving church he threw such a strop in the car park... he hit the staff member 'cause he stopped him from running out across (a moderately busy) road, then wouldn't get in the car... he's not been... right recently. 

Trying to figure out what's going on in his mind that might be causing these changes in behaviour... is interesting to me from a neuroscience point of view but very difficult at the same time, having enough trouble figuring out what's going on in my own brain, let alone trying to analyse my brother's ... or nan's.. or mum's.. or dad's... 

Anyways... better take my meds and try and get some sleep! 

Night all x