No wonder we get fatigued

Like most of us I get the usual question "so what are you doing with yourself these days ?" and usual respond not much just potter around. However, this time I replied "the last two weeks I have been filling in forms" it was met with a rather quizzical look and I explained that that I had to complete Child Tax credits, family allowance, Income support, Income support spot check, child tax credit spot check, forms to get back dated child benefit and the dreaded PIP application form. There were well over 150 pages of forms to fill in. The pip response went to over 4,000 words and 17 additional pages! And I know that even with all this effort they will come back for more information!

With all the other struggles we have its no wonder we get fatigued

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  • You need a secretary Sos. It sounds horrendous......

    ............. keep the cuppas going. :O xx

  • I had to write it down and then daughter / wife had to correct what I had written and more than once we had "this does not make sense!" or "where is the rest of the sentence?" :-(

    It is a full time job not working trying to cope with the paperwork, budgeting money in / money out. Those of us whom aren't in the best of health for one reason or another really need someone to sort out the paperwork - i know in some areas CAB is really good but where I am the wait for an appointment is 5 weeks and they only work a few days a week.

    Still never mind it was a good cognitive workout.

  • Gosh, no wonder you would be feeling fatigued after all that.

    Yep, time for a cuppa and just breath.... Claire xx

  • Thanks After filling in those forms could really have done with a cold beer :-(

  • Quite !!

    When I was first out of hospital late 14/early 15 the paperwork and appointments etc were just the worst thing ever ..... how the heck is one supposed to deal with those important / time consuming things when one has just had a BI ?? And beyond .........

    FortunatelyUnfortunately I wasn't entitled to any bit of help - so they never got filled in - but my savings dwindling now so might have to relook at them.

    " Sigh" ....

    good luck !

  • I know, I had to complete a Disability Living Allowance shortly after my injury, boy was it difficult to fill in those 78 pages.

    At the start of my injury, I had quite a bit in my account, then with all the direct debits, standing orders and subscriptions it soon runs down. I was really surprised how uncooperative and unsympathetic some companies were about changing contracts. Some were adamant that because I had taken out an 18 month contract, I had to see it to the end at the same rate even though at the time I couldn't afford it. When I asked what happened if I didn't pay - they would cancel my contract!!

  • So true........it's a shame that you can't get a secretary on prescription :) x

  • Horrific state of affairs- I am in process of trying to contact official things due to current situation but such an energy drain. Step change debt charity staff were excellent though and could do it all by phone. Very patient with me. Government I know from previous experience failing dla application and appeal is an entirely different kettle of fish☹️

  • My haemorrhage was almost certainly triggered by the stress of finding my bank account had been compromised and significant sums taken, The previous week I'd asked for my account to be closed when the first 'hit' happened but was told it was unnecessary so long as I cancelled my debit card.

    When I discovered another withdrawal the following week I collapsed with the bleed. Whilst I was incapacitated for 2 months it was left to a friend to insist on the closure of my account, which naturally meant that none of my service providers or other payees received payment.

    So my first job on discharge from hospital was reinstating all the standing orders & direct debits which had lapsed, and convincing the companies it hadn't been a simple case of default, not to mention sorting out my account. Pretty horrible week all in all !

    Halifax were great when I returned though ; I got a 'celebrity' welcome back and a complete refund of all the money lost.

    But it's a shame we have to struggle with these mind-bending issues when our only tool for these jobs doesn't work properly any more. xx

  • What a welcome home - lots of red, sadly more letters than roses !

    At least you got the bank money back

  • Yes, all good in the end. I'll be thinking of you ploughing through your paperwork Sos !..........Maybe stop for a nice slice of cake now & then ?? xx

  • C.A.B. Helped me, it wasn't easy to constantly go over my memory problems. They were very helpful, it all seemed to make sense. Take care pal xxx

  • I had CAB do my DLA and other ckaims when first ill (as I had to appeal everything) but did it myself when converted to PIP, although I have to admit I copied a lot from the last form.

    And yes, even copying it took hours. It looked a mess too, loads of things crossed out (after a certain length of time my brain forgets what order letters go in, even if the word is in front of me!)

    At first I thought 'They won't be able to read this...' but then I decided if that meant they had to meet me and interview me that would be no bad thing. It might help them make the right decision. I can come over as relatively capable on paper. Certainly more so than if you meet me in person....

    It is a right horror though and I can understand why people steer clear if they can - I was quite relieved when my pension kicked in and my ESA entitlemènt ceased. One less process to go through.

    Keep on plodding on, Sos. You have our sympathy 😮

  • I did a cognitive course last year with my Headway. The manager was running the course, as there is not a lot of staff at our Headway due to the ever so greedy government 'stealing' money that they do not earn or need.

    Anyhow, she explained how fatigue worked in a very good way.

    Imagine ten people are sat at a table. At one corner, person A delivers a message. The message gets passed around from person to person until it makes a full circle and ends up at person B.

    That is similar to how farigue can work.

    It is easier to follow if you could visualise the scenario.

    In other words, it can take longer to process things meaning our brains work even harder.

    Unfortunately, most people on the outside do not get this though :(.

  • No Matty they do not understand. I give up explaining, when people say, 'oh we all get tired', etc etc. How are you? Have not seen any of your drawings for a while ?

    Semolina 😊

  • Hi Semmy,

    My family don't understand my BI. My mum probably has more of an understanding but my dad is terrible. He is one of those that you mentioned "We all get tired".

    I was out at a pub with my family and some friends a few weeks ago. Some of my friends were BI survivors who I had met through my nearest Headway. My dad was talking to one of my BI friends and I overheard him saying "We all get like that".

    I couldn't believe I heard him say that. I thought he only said things like that to me cos my dad is a difficult person, an alpha male type, bitter and so on and the way he talks to me makes it sound like I haven;t got any problems.

    Anyway, I spoke to this friend on Facebook and I told him to ignore my dad, he is a.... buffoon :) and he doesn't know what he is talking about. My friend said he is at the stage where he ignores it. He used to explain himself but now thinks, why bother?

    I posted an image on here a while ago, don't know if you saw it of a boy with his hand on his head and the caption said "After I explain my complex brain injury you still feel the need to say "Yeah, I get tired too"... something along those lines anyhow :). I thought it was very apt though.

    I am good though thank you, hope you are well too :).

    I've actually just finished a picture that I drew for a lady on this forum CindyBurton10

    There was another picture I drew for a lady on here randomphantoms and I have already posted that to her and she loves it :)... I think.

    My name is starting to get more known now :).

    I've drawn some pictures for people from my Headway and printed some copies as well. Actually on Friday I will be selling one of my prints to a lady there.

    Take care,

    Matty :).

  • I do love it Matt. It has pride of place on the wall reminding me of my strength when I am feeling weak.

    Love n hugs

    Xoxo

  • Gosh, a mammoth task!

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