asthma woes

I’ve had the cold! My asthma takes this as an excuse to wake me during the night every night for extra nebulisers. I’m not a happy bunny. I wish I had normal lungs like everyone else. Even with my subcut Bricanyl running 24/7 my lungs can’t make it through a simple cold. I’m at home for New Year too so trying to do this as silently as possible to avoid waking the whole house. I just hope after this nebuliser I fall back asleep. I’m due back at the hospital today (leaving here 11.30am) and a wait from 4am is more than my anxiety can take. My pass has been ok but I’m actually secretly relieved to go back as I’m just not ready for food in the real world. Well nebuliser done, night night readers xx

home for New Year

I’ve been pumped full of fortijuce and fortisip and let loose for 2 nights to spend New Year at home. Hospital hasn’t been a nice place the last couple of days. With so few adult patients and the adolescents pissing about and landing on obs the staff have barely seen my fellow patient and I. Feels very unfair as though we may be older adults still need the support too. We are meant to be getting another adult patient next week, I hope she feels she can fit in with out little duo! I’m anxious about being home. Feel vile from all the extra feedings to allow me this time at home and generally just feel scared. Also full of the cold and asthma is playing up something awful. I was weighed this morning as is standard for going on pass but opted for being blind weighed. I will find out my weight at Tuesday mornings return weigh in. Hoping I’ve not gone up. Dietician leaves to a new hospital this coming week so hoping I can stay at a lower weight. I’m complying, just don’t want any increases!!!

Happy New Year when it comes everyone xx

an update

Sorry for my very lengthy silence everyone but life chez EDU has been eventful and internet signal variable so I’ve not been able to blog. Today in sheer boredom I downloaded wordpress for my Blackberry which has better 3G than my ipad so here I am! This post may take a while as I try to fit everything in.

As you can guess I’m still in the EDU, it’ll be 10weeks on Thursday (yikes that’s tomorrow) since I was brought here. 4 weeks or so ago they got a Compulsory Treatment Order meaning they can keep me in hospital for up to 6months pending my progress. They say I’m doing well in that I’m doing a lot of psychological work but physically well… I gained a small amount of weight then yesterday dropped to within 0.4kg of my original weight and therefore stand to lose my privileges of walks and time out even though the weight loss was totally not deliberate. Stupid body doing stupid things! Managed to negotiate a lower target BMI of 15 and now I’m failing to even maintain that.

I am still solely tube fed. We did try solid food on Christmas Day which sent my digestive system into some sort of paralysis causing agonising pain and vomiting so back to the tube again. I’m on an NG feed now having removed my PEG with a pair of scissors around 6 weeks ago. Not the cleverest move I’ve ever made but the nurses fought my corner in not having it put back in. My consultant wanted it to remain in place for a year after I left here and I didn’t want that at all so I took things into my own hands and that was that. They could have forced the issue and made me have it back in but they could see I’d just keep on removing it. The NG will be removed as soon as I’m on a totally oral diet. God knows when that will be!!!

The good thing is even under section they allow some degree of freedom so I got home for 2 nights over Christmas. I hope to go home again over New Year. I also get two walks in the grounds a day, time out with my friend C when she visits several times a week and time with my parents at a weekend. This may change now with my weight loss The staff also make the effort to take us out whenever they can. Us being the 3 adult patients as the unit is going through a very quiet spell at the moment.

So there we have life as it stands at the moment. I look forward to catching up with my regular blogs now I’m back online xx

Where I’ve vanished to!

For those who follow me and wonder where I’ve gone I’m currently detained under the Mental Health Act in a specialist ED hospital which is in the middle of nowhere and has variable to crap 3G signal for my iPad. Gorgeous setting if I was allowed out to enjoy it! Yesterday they got permission to force feed me if necessary so not a happy bunny but agreeing taking the PEG feed and having some freedom is better than being pinned down by nurses and made to take it anyway. I am not fighting them on this one as they will win! I’m trying hard but the anorexia hates this. I spent my birthday in here on Tuesday and the afternoon getting a new PEG as mine blocked the week before irreparably and I was back to being NG fed which I kept removing. They are making me go to a BMI of 16 which again the anorexia hates but is preferable to the BMI of 20 they suggested on admission which made me freak and try to run away.

The hospital is nice though and the staff are the most amazingly supportive I’ve come across in any treatment facility.

So alas that is where I have gone…

Back when I can, weather permitting as wind makes my 3G vanish altogether

Spectacular fail!

I’m back in the psych ward…my usual one this time not the one I was in a month ago. I came in last night after accidentally drinking a can of non-diet drink nearly pushed me over the edge. I read 34g of sugar and that was it. I walked miles, I jumped on a bus and I ended up on a bridge in town contemplating the quickest route down. I had plans that would actually work and I was all alone so eventually after staring at the Samaritans poster for what felt like forever I took myself off to A&E not really expecting much and they had such serious concern they called the duty psych team who came up assessed me and had the little green men transfer me down here ASAP. So here I am sitting on my bed contemplating my crap hospital blankets and feeling a good deal safer than I did this time last night.

I can’t carry on like this. When does it reach the point that an accidental extra 143 calories or 34g of sugar seems worth taking my life over?! I want this to stop. I was going to refuse the EDU assessment but now I feel I need to go and hear what they have to say and to see what we can do to get me out of this god awful situation.

I went for a walk in the grounds today in the leggings and top that were all I had with me and the EDU patients were staring and whispering when I walked past their group walk. Did it make me feel good? Well actually no. It made me realise how lucky they were. They looked healthier than me.

Would things have been different for me if the EDU here wasn’t permanently over stretched? Maybe if I hadn’t had to wait to the point where they need to fund a private sector ED bed because they can’t provide the NHS one I need maybe things wouldn’t be this bad. I know I’ve been thinner. I know I’ve had deathly low BMIs but I have never felt this mentally awful. I have never really really reached a point where I actually wanted to die. I may have felt like it but I’ve never actually stood on the bridge ready to jump or run away from home on a bus in the winter darkness set on ending it all. I can’t do this anymore

EDU assessment

The doctor phoned from the private EDU on Wednesday, it has taken me til today to get over the horror and anxiety enough to write about it. She wanted to see me next week the realised she was double booked so asked me to come yesterday which thankfully I could honestly say I couldn’t. So now I have to go on the 20th. I have a plan and it doesn’t involve weight gain, hope they accept it. I want to get onto a proper meal plan and feed regime combination and stop the utter chaos that is my pattern just now, I want to come off the meds that aren’t working ie the Quetiapine and start something that does and I want to stabilise my phosphate levels (get through the initial refeeding) and get off Sandoz Phos which I have been on for 2 1/2 years!!! I also want to do some cognitive work and look at my fears, rituals and obsessions and start to break some mainly the obsessive excessive walking and the obsessive weighing. I hope they accept those goals as good enough not to force weight gain. I’m not at the lows I have been at before, I was 9kg lighter at my lowest weight. I feel guilty for having an assessment for the EDU when I am so feckin’ huge. I feel disgusting and it is fueling s fire to get my weight down as much as I can in the next two weeks. In hate EDUs and their competition. The watching to see who is thinnest. The sigh of relief when someone comes in the door when they don’t take the title of “sickest”. I’ve been in them often enough to know how people think and react. I don’t want this. At least my feeding tube cannot be a status symbol and no-one except the staff will know it is there I hope, gone are the days of the tube hanging out my nose for all to see. I’m glad of that!

The words don’t seem to come

I have been home with the asthma infusion for nearly two weeks now. It runs well, my symptoms far more under control than they have been in a long time. I have evn got used to the syringe driver now it is encased in my pretty custom made bag. I almost forget it is there and I love the feeling of getting through the day without a nebuliser mask clamped over my face.

My weight has been unstable, large drops and fluctuations. I am now the proud owner of a lovely medical blue pressure sushi on to stop my skin breaking down into sores. My respiratory consultant makes concerned noises when he sees me. People make concerned noises when they see me. I hate my razor sharp cheekbones that make me look so gaunt and useless consultant has not followed me up since I left the psych ward *sigh*. I have heard through my GP that the health board have granted funding for me to be assessed by a private hospital a few hours from here and they will fund treatment there if they will accept me until a bed comes available on the local EDU. I don’t want to go, I don’t want to gain weight and eat and be full of loathing for myself. As useless consultant hasn’t said anything about it to me himself I just pretend it isn’t happening.

I’ve been busy working on a large jewellery order for the shop and some private orders I’ve got too. It helps keep my mind busy and I like being busy. When ai’m not busy I want to eat. I think about food all the time and I hate it. I wsn’t to stay in control, banish food thoughts and continue to drop. I don’t want to be taken into hospital. Oh I am so confused. I dread each mornings weigh in for the horrible fluctuations, am I going to have plummeted down or the needle shoot up. I hate the unpredictable nature of it all. I want my weight to be an exact science!

A non poetic update

I haven’t updated in a wee while. I didn’t have the words, the cognition or the motivation while in then psych ward. I spent 10 hard days in the psych ward. I fought, I battled and I faced demons and after a “rest” ie some respite from the outside world, I came home on Monday. I do feel better, my thoughts are less dark, the suicidal intentions less strong. In a mental sense the admission was helpful. It helped it was not my usual ward, a new start with new nurses and a new surrounding really helped.

Physically I came out lighter, off my feed and eating and drinking poorly. After being told I look hellish and the shock of my razor sharp cheekbones and shoulder blades in the mirror when tying up my hair I am now trying to go back on my PEG feed and at least get my nutrition somewhat stable. I do not wish to gain back the weight though. Why can’t I have the number without the awful look. I don’t remember this bony look from any of the times before when I’ve dropped much much lower. I don’t even know if I like the bony look when I want to go unnoticed and unbothered by anyone.

I am writing this from my iPad on the respiratory ward at my local hospital. Yesterday my subcutaneous terbutaline infusion was finally started after 11 long months of getting through the system. Nothing had prepared me however for the mental shock of having this bag with the syringe driver attached to me all the time. It was bigger than I imagined and scary and medical looking. I almost bolted and ran for the door but stayed, bit back my tears and got on with it. After a full nights sleep without waking for asthma meds maybe it doesn’t all seem so bad but it will take a long time to adjust to what is going to mean changes to me lifestyle. As soon as I get my own custom made bag I can sling round my waist the better as I think I will adjust more than with this cumbersome medical looking bag I have to remember to pick up. Note to self: do not step off bed, chair or any other object while forgetting I have the syringe driver attached. I need to get over my needle phobia though the district nurses will do the needle bit for a start. If I don’t accidentally haul it out then it can stay in place for a week. I want each needle change to be no more frequent than that. How am I going to do it myself when I cringed, shut my eyes and looked away yesterday even with the intentions of being strong and brave. I had good intentions but I couldn’t even look.

I need time to get used to all these changes!

Who listens?

Did you listen?
Did you hear me say no?
Have my thoughts ceased to matter?
Do my feelings no longer show?

Did you listen?
Did you hear me say yes?
If I asked you nicely
Would you still make a mess?

If I go unnoticed
Is it a wonder you see
The illness and symptoms
You think that make me

The Ghost

Did you see the ghost, the ghost of the girl?
Did you see her slip by you in torment
Her mind all a whirl
Did you hear her frustrations?
Did you hear her heartfelt sigh?
As life quietly disappeared
And her spirit it did die

Did you see her now as she pounds on the door?
A nurse comes and grabs her
And then there were four
Did you feel her bones as she kept up the fight?
Did you think you would break her?
When you held her down tight

Did you hear her screams as the needle was brought?
Did you see them turn her?
Did you see how she fought?
A pin prick and it’s over she used all her might
But the doctors won’t let her continue to fight.