The (not so old) Crocks Cafe

mouseymousey99

Torbruk - Could someone perhaps help you with it? Its a lot to take on at one time, the house move/sale and the DWP? Maybe just have a rest up a bit today? Lots of bought to lets near me, they do try to get them at less than the market value so be careful. Also, could the estate agent do the showing arounds?

Invasion - Enjoy your lunch.I just read LW's mine is just the same! My roots need doing too - but I just cant muster up the vimto to get myself in there and do it! 11.30 & still in my jammies - oh bad bad....oft to the shower then cauli cheese for lunch..

TOBRUK

Hi Invasion, thank you for your *hugs*. Well it's 12 weeks tomorrow since the operation, but as I've been recovering from a major op I really couldn't tell over this time how much was due to recovery from the op and the deterioration of my existing condition. The DLA decision letter is dated 4.12.09. As for relapse - I am in permanent relapse if you understand what I mean - it's always bad. My last award I was receiving MCR.

My GP has increased my pregabalin to the maximum (it can't be increased any more) 600mg a day. She has also started me on D.H.C. continus - slow release pain killer to see if the pain eases which I have been on for almost a month and I'm not finding/feeling benefit.

My GP has told me since my decision to sell the house that she would write a letter in support - that it would benefit me moving to a bungalow and that I would be near family who could give me help and support I need.

On this basis do you still think I should write to them?

Oh dear I feel pathetic .. I've started crying ... I can't remember the last time I cried!!

TOBRUK

LameWolf wrote: »

Tobruk gentle ((((HUG))). Your pain is almost tangible in your post.:(
I can understand you being wary of writing to the DLA people, but my gut feeling is that in this case, you need to. Yes, feeling weak and tired will definitely make you feel low. I'm sorry the house viewing didn't have a more positive outcome, but try not to lose heart - that was just one couple; hopefully you'll get more viewers quickly. All I can suggest is that having got the house "up to scratch", try to keep it that way - use my motto of "don't put it down, put it away" for instance, then you'll not have a big clear-up to do before the next viewing. Take care, and chin up.;)

Thanks LameWolf, with regard writing to DLA, I'm just so worried that they may decide to take it away from me completely as you hear so many stories! Should I just write a letter asking if they would reconsider the care component, explaining why I didn't question/disagree with their decision (within the time frame)because of my condition around the time of receiving the award letter?

As for keeping the house "up to scratch", I always do - I didn't have any clearing up to do, I always put things away like your motto and I live alone so no mess by others! I just wanted to dust, extra clean the bathroom, clean surfaces, wash floors etc

mouseymousey99 wrote: »

Torbruk - Could someone perhaps help you with it? Its a lot to take on at one time, the house move/sale and the DWP? Maybe just have a rest up a bit today? Lots of bought to lets near me, they do try to get them at less than the market value so be careful. Also, could the estate agent do the showing arounds?

My sisters are helping me with house sale - any mortgage things etc The estate agent does the showing arounds - anyone interested in viewing has to go through the estate agent so I don't have that to do. If I eventually move my family will help ... packing, cleaning ... with anything that's required, and my brother has a lorry, I won't need to do anything.

Trialia

*hugs Tobruk*

Invasion

TOBRUK- I so have to find something snazzier to call you, unless that's your real name.. in which case I apologise for insinuating your name is... unsnazzy.
I get what you mean by permanent relapse, I do think it's worth you getting someone to help you to get your care award looked at again, as much as anything it's moral support for you and having DIAL/CAB/whoever's name involved seems to make things carry a bit more weight. Are you a member of benefits and work? They have some really useful guides, you do have to pay £19 subscription but I'd say it's well worth it, they have a very helpful forum too.

More *hugs* coming your way, sometimes a good cry is just what you need to get it all out and make you feel a little bit better. Got anything recorded that you'd like to watch? Or maybe a DVD? Hope you're feeling a little cheerier soon.

LW thankyou, was lovely to be out, even managed a sneaky trip to Boots too- have to go through it to get to car park... what a shame! :P

Meant to say, went to see neuromuscular dr the other day, she was totally different this time, now that she's confirmed it's "just CFS" that makes my legs so crappy. She also had the cheek to ask me whether I was sure I was pacing right? As relapses shouldn't happen if I am... GAAHHHH. Then went on to say how bad it was to be spending so much time in bed... I said no choice!.. She said, I know.. (she doesn't ) but try and get back to where you were before very soon. Thanks! then went on to say "I've seen people much MUCH worse than you (did you have a go at them about being in bed too? ) who got better with the lightning process... Oh noooooo. paha!

GP's being rubbish about headpain, won't prescribe me anything stronger as he doesn't think painkillers will work- in all fairness they don't really- and is at a loss really...

TOBRUK

Invasion wrote: »

TOBRUK- I so have to find something snazzier to call you, unless that's your real name.. in which case I apologise for insinuating your name is... unsnazzy.
I get what you mean by permanent relapse, I do think it's worth you getting someone to help you to get your care award looked at again, as much as anything it's moral support for you and having DIAL/CAB/whoever's name involved seems to make things carry a bit more weight. Are you a member of benefits and work? They have some really useful guides, you do have to pay £19 subscription but I'd say it's well worth it, they have a very helpful forum too.

More *hugs* coming your way, sometimes a good cry is just what you need to get it all out and make you feel a little bit better. Got anything recorded that you'd like to watch? Or maybe a DVD? Hope you're feeling a little cheerier soon.

TOBRUK isn't my real name Invasion, my real name is Llinos (Welsh for Linnet the little bird) so not sure if that is snazzier or not!;)

I am really considering in trying to get my care rate looked at again but nearest CAB is too far for me to go especially if it's more than once as I did see someone there recently for advice about changing my mortgage and problems I may encounter with DWP because of moving - the person I saw there was pretty useless.

Not a member of benefits and work either.

I have drafted a letter to DLA but I'll have to wait until tomorrow to read it back properly - explaining the reasons why I didn't respond to the award letter dated 4th Dec where I disagreed with care component, as I went into hospital for major op and the allocated time to respond passed by. I point out that the award letter also states if circumstances change:

... if your circumstances change and you have less walking difficulties or you need more or less help with personal care you must tell us

and I give information of the changes and based on the information would appreciate any advice they can give me regarding my DLA. I tell them of the increased difficulties with care, washing, dressing, using the stairs, pain etc I mention the change of medication. I also say of decision of moving from house to bungalow and to be near family for help and support because of my needs. I state that my GP supports this decision and believes it is the right thing to do.

I really don't know if I will be brave enough to send them this letter - whether it might do more damage?!

jennihen

Hi Invasion - I read your bit about pacing and it reminded me of my physio harping on about. Yes I'd love to divide my day into 3 and have a rest in each part but real life gets in the way. I work and have 3 kids (who are brilliant but lets face it they need a mum). I find the pain and swelling really bad in the evenings and end up getting up earlier to do all the stuff I couldn't do the night before which inevitably means I fade earlier in the day!!!
I'm just about ready to call it a day now - obviously didn't pace myself today!!
'Just CFS' - LOL x

Invasion

I am in fact the pacing queen being 18 with no responsibilities it's pretty easy as long as I can be disciplined enough, currently resting every half hour for 10 minutes as can't do much if I don't! I've been really lucky that I've had an OT for the past 2 years, who's guided me with the pacing and kept me on track, noted slight improvements and pointed them out for me. I still have "nevermind!" days where I blow it, if I decide something's worth it, then I'm happy enough to pay for it for a few days.../weeks I just hate those days where it hits you cos you had a bath/hairwash or sat up for half an hour! and yes "Just" if only...!

jennihen

My niece has gone into labour - its going to be a long day for her - first baby!
Can't wait . .

TOBRUK

Hi everyone, jennihen that's exciting news, hope your niece doesn't have a long day and you have news soon - Aunty jennihen!

Well, I'm not feeling as teary today but still feeling very low. I have written a letter to DLA explaining my increasing difficulties with my care needs and asking if they would look at the care component again - although the time allocated for responding to their decision (if you disagree) has lapsed. I have also given details of change of circumstances including the decision of moving to a bungalow because of increasing difficulties with stairs etc and the need to move near family so that I can get support for my care needs and therefore put my house up for sale. I have said that my GP supports this move.

I am feeling rather sick because I can't decide whether to send them this letter, whether it does more harm than good in case they decide to remove my award completely. They may decide I have to make a new claim which would also be horrendous!

I am in a quadry!!

Hope everone is having an ok day.