Tuesday, 18 January 2011

Can I Help Me?

I'm a bit weary of the process of getting help at the moment as well...smiles

I was looking at the videos I did on November 23rd, which was when i cut the carpet up. It was the day after the visit from a new befriender from WRVS, which had been pretty traumatic and completely exhausting. She'd pointed out that being in the house was making her mild asthma start to flair up and that the wall was indeed damp in the corner. I was also noticing how much mess was in exactly the same place now as it was then. This befriender was offering to help me with shopping and when i was able to clear bits of the house and clean up. I felt it may be quite challenging working with her but I was quite looking forward to it. *Working = sitting while she does things if I am not up to doing much, which can be as distressing and exhausting as not having help. She never came again. In the new year I was dealing with having the tribunal postponed to give me a better chance with CAB representation and support. The visit from the lady from CAB was both traumatic and very comforting, she treats me as a human being and is a beautiful soul. I feel more confident I stand a chance at tribunal with her by my side. It is not easy living with that hanging over me for the past 7 months. It is making me more determined to not let this kill me. I could have let other things defeat me, I made peace with them. It is hard to make peace with such an uncertain future.

If I could and I sold the house that would cause me huge difficulty and stress, living in it the way it is isn't easy but I appreciate I have my haven and that I haven't lost it, which could happen. I have 5 years before I am 'safe' there! When I focus on the problems I could get very upset and start worrying again, what do i do, what do i do? But at the moment i am trying to work up the right feeling I need to go to the doctors again. I need to pick up the letter from my doctor, which lists my symptoms and will cost me £37.50 or something like that. I am not sure if he really wrote something that anywhere describes how I am not just being lazy! After all everyone knows chronic fatigue is a really lazy persons excuse ;o)

Actually virtually all people i have met with it were driven people who pushed themselves very hard and were ambitious and have had to learn great patience to limit themselves from doing too much and totally wiping themselves out for days which may then drag as feeding self in that time is incredibly problematic and then if an infection comes oh dear you are not very prepared and will be going hungry a while. Then the often painfully slow rebuild to try and bring the weakness back to able to sit about rather than lie about.

I still can't bring myself to talk to befriender number 3 having met befriender 2 who was an elderly lady and maybe I was being ageist or maybe it was a certain way of her that prevented me asking for the same kind of help that befriender no 1 was offering and simply saying shopping. She said that just shopping was not really enough to drive 45 miles for, although I thought 45 miles was a bit of a long way to send someone. No 1 would have been her first time befriending experience, I think I overwhelmed her. They decided someone more experienced may be the ticket so No 2. I didn't think to mention that prescription getting and maybe doctor taking may be very welcome too, help with sorting out the nebuliser which needs servicing could also be in the spectrum of shopping.

I also don't get to see anybody every week, so it would be nice to have that but it needs to be someone I look forward to seeing or I would prefer to see no one at all. No 3 is an elderly gent and sounds lovely but they didn't tell him I am not good in the morning and he started ringing at 10am, I ignored the phone, I can't always cope with talking on the phone. Lovely lady in Mind on Friday at the befriending group rang him and told him I would call back when i am feeling a little better as i have been overwhelmed. It was hard for me to ask her to do that for me but glad I did. I didn't want to appear rude but I couldn't deal with it.

I like to think of myself as fine and on top of things! I am on top of a pile of paperwork and rubble with leaks and badly managed house maintenance. I am teetering and it often feels like I am falling. I know I can do better but a bit of appropriate, informed support would go down so well and help me do better. Neither No 1 or 2 were told I have a dog, neither of them were good with dogs.

I love what I said in the video Nov about how I felt triumphant and defeated at the same time. I am managing damn well for the difficulties i have, if I was just lazy it would be 'a bad show all round old chap.' I am quite capable of a lot of things, given half a chance.

Yeah petition for DIY SOS to come and sort me out and tell them they would need to help me pack to move my stuff into storage while it was being done, cos although it is very scattered i still know where most things are....there needs to be things thrown out during packing and ONLY I know what needs to be kept! Although as long as they were not going to throw anything out and stuff was somehow going to end up in the art room and in proper places maybe I could let go of the fear of not being able to find what I want when i want it! I've already lost some things so discovering new places that things are tidy would be marvellous....lol...I think they would shirk at the challenge! I'm too hard to help...bugger!

This was my reply to someone asking what support they could maybe give me...on my Fit For Work video. Oh good grief I wonder if anyone locally who knows me will see it...someone I am not connected to here... and by heare I meant facebook! I am not used to the fact i am writing somewhere new for me, yet. I could get carried away, I always was wordy unless I was hiding in my shell.


  1. I think you are a beautiful person, and prefer you out of your shell :) I am still praying for you dear one

  2. I have just seen your One Month Before Heartbreak video. I think you're doing brilliantly, but I'm so sorry about your situation. I completely understand the bind you're in. I would be in a similar place if I hadn't been lucky with my husband and family. I would really like to see if it's possible for us to help you out with one or two basic household maintenance type things, if you happen to be not too far from where we live. I don't know how to contact you, so I'm posting my email address, which is pinnockh at googlemail dot com . I don't know if we can work anything out, but I'd be really glad if you contacted me to see what's possible.

  3. Thank you Friar :O) x

    And thank you Helen, I have just sent you an email to say hello, I am still a bit shaken and tearful, reading other peoples accounts and the responses are beautiful in most part if tragic in many. I am more than likely quite far away I live at the bottom of Wales in Pembrokeshire, beautiful area for a holiday, you could stay in the chez palace I call my home if things turned out that way! I'm a terrible host, not always able to be attentive to providing refreshments and prone to exhaustion, not always good humoured but mostly, even though that seems to prove I am fit for work! Thank you so much for your kind offer even if it isn't possible it is heart warming...

  4. Hi there, it's OyaD again. I guess no one told you about DFG? I wouldn't be surprised to be honest but I've applied for this myself and it's supposed to either help you repair your house or help you move if your house is unsuitable. There's a limit on how much the repairs can be but I imagine it would help do a fair bit. Maybe you can get CAB to help you? I know it's not a fun option but I can't imagine conditions are making your asthma any better.


    I'm currently going through the process myself; as I rent any major changes done to the house would then fall to me to "change back" and therefore they feel I should move. I don't really like the idea as I have a lovely garden here but as this sort of stuff moves like treacle in January I imagine it will take an age before they find a place suitable for both me and son. They're trying to get me into council housing but they can get stuffed!

    Do take care.

  5. Bless you OyaD :o)

    I'd love a bungalow really, upstairs isn't always safe or possible to go up to. I ended up in hospital from the effort of going to bed back in October and was on oxygen all day then sent home.

    I was recommended for a support worker and help from care and repair back in December 2010 by the psychiatric nurse who I had an assessment with after finding a whole days lectures too much and becoming rather too fond of the idea of suicide. She said she wouldn't like to see me in the mental health system as we had chatted about the psychological effects my experiences had on me and my conditions held me in due to my physical health and the effects that has on my psychological health. She could see my living conditions were putting both in jeopardy and the the correct support would help me immensely. Sadly care and repair are for adapting homes not fixing them they told me. Wouldn't even fix a dripping tap and my hot water tank overflowing outside the back door. Environmental health told me it was my responsibility.

    At the moment my first priority is to get the tribunal out of the way, then maybe I can deal with workmen/women in my home. I need to sort my heating out. I can only deal with a few things at a time...

    Hugs and I wish you ease to sort your living conditions out too xxxxx

  6. This comment has been removed by the author.

  7. Totally get what you're saying; between child, me, house, work, DLA stuff...sometimes one only has so many spoons. I've put child stuff on hold at the moment because I need to save myself, like why they tell you to put an oxygen mask on first before your child on a airplane in distress. So the DFG thing/DLA appeal/DLA application and working is all top on the list right now. Not actually dressing, doing my hair or going to dentist or having fun, but just those four right now.

    I shall shake the mojo stick for the tribunal but the DFG can and should be helping; if they deem your house unsuitable for habitation due to health then they have an obligation to move you so it's complete bollocks if they tell you different.

    Do take care.