The (not so old) Crocks Cafe -Part 2

mary-op

Hello all :j

sunnyone

You can continue to recieve low rate mobility for your epilepcy post 65 because it was awarder before you were 65 but it cant be uprated to high rate mobility because your over 65, you care rate can be uprated if you already get a care rate of DLA but if you dont it will be AA for care and low rate mobility for epilepcy.

Thanks for the info. I find it all so confusing. I'd applied for higher rate due to change in my situation -i.e. now due to back problems have severe mobility issues and thought they'd leave the epilepsy rate as it was then assess me with the current probllems I have but the forms read as if they're taking the whole picture .......epilepsy and back problems all as one. These things are never made straight forward and simple are they.

blackpaw - I sit on the sofa with as much padding around me as I can..........big pet cushions are ideal. And I've put a single duvet folded in half on top of the mattress so at least I'm more comfy when I go to bed and more likely to sleep.

Saw on tele last night a feather mattress topper...........lovely and soft looking and the woman selling it said it would be ideal for back problems..........sorely tempted but not sure it would be right for me or not. Am I better off sleeping on something really soft or should it be reasonably firm ? I keep reading mixed views on that.

Have been waiting for lady to call from Age Concern......I rang them for help with dla forms and then they said they could send someone out to assess any other needs I had..............still occupational therapy are coming in the morning
I'll feel better when I know whats available, what's free and what I have to pay for

Hope you all ok:).

SingleSue

Having great fun with youngest son's asthma at the present time...he was in a bad patch around the New year but has been progressing for the last two weeks.

Went up to see the asthma nurse a fortnight ago as his peak flows had taken a while to get back to normal and she told us to continue with his flixotide (an extra steroid inhaler we add in when he has colds) until we see her again today. This was working well and we hit some great peak flows last week.....until yesterday when all of a sudden, there is a huge decline again.

Turns out he appears to be coming down with the same flu type cold that middle son had last week and although it hasn't yet developed into the cold and is only at the first signs, it is enough to send his asthma plummeting. So he has to continue for another fortnight on the high dose steroids, now has to carry a steroid card as it is such a high dose and we have been given a line where, if he crosses it (and it is higher than his normal trigger line), we have to contact the doctors immediately...he is only just above that line.

They are keeping an eye on him because he does go down so quickly...a mild cold has almost ended his life twice in the last two years but his dosage is already that of an adult and it is getting to the stage of eekk, what can we do now to avoid these plummets with only a mild illness.

In between times, his control is excellent, he never misses his inhalers, keeps intricate (well he is complex autistic) graphs of his peak flows and followes every instruction to the letter...it is just when he gets the normal childhood stuff that it becomes dangerous.

So he is up again in two weeks....well if we don't have to call before then that is!

Indie_Kid

Sorry to hear that, Sue. I hope that youngest feels better soon.

Elle7

Thanks for all the responses about lyrica. I tried to get an appointment this morning but there were none left, so I'll try again in the morning.

I'll definately ask about why I'm on such a high dose, and why I'm taking it so many times a day...I thought I'd started on a low dose, he kept telling me how important it was I had the dose raised at the right time.

I hope everyone feels better soon, including your son Sue, and I'll be lurking x

Trialia

Grr @ evil-headache-that-won't-go-away. Don't you just hate those? Going to go to sleep and hope it doesn't turn into a migraine.

My occupational therapist says I need to meditate more (it's what I do to relax) - but with HouseGuest still living in my living room, my meditation space is completely disrupted and I feel terribly crowded and claustrophobic - not conducive to useful meditation. Sigh.

Night, folks.

black_paw

mary-op remember no matter how soft they look when you lay on them it go down to hardly any thing left,when laying on ..my memory foam pad is about 6" deep yes lovely but when you sit on it it go down to 1/2 " you can feel the floor after bit ,so i really need two of them or go on diet ! LOL

trialia hope you feeling better , i some feel the head is going to go like bomb and blow off ..terrible feeling . i go to bed and lay quiet if i can ..but you feel panic like ,,

sue sorry to hear news and hope he is picking up and feeling better poor boy..

elle7 yes ask the doctor why !

mcculloch29 one more day then the bed

mary-op

blackpaw - think I'll stick to my folded over duvet on top of the mattress -seems to work ok for me at the minute anyway. Might as well save my money.

Trialia - how did you learn to meditate ? It's something I could do with trying I think but wouldn't know where to start

Lady from age concern came today to see what help they could offer (stupid me thought she was due yesterday-got days all muddled........lol) I've got endless leafllets for handymen, cleaners, alarms -dont need them at the minute but worth knowing about. There may come a time when I do.
Occupational Therapist called this morning and measured all up for extra stair rails, rails on the landing, bed support and bed rail, walking sticks and raised toilet seat.
She also mentioned stairlift and fitting shower above the bath (Our bath is old fashioned sort and can't fit a bath seat in it. I'd prefer shower and loo downstairs) These things are dependant on getting council grant..........if our savings are too high we might end up paying for it all ourselves. Well if we have to do that I'll opt for the shower and downstairs loo. We've got the room for it.
I did ask about recliner chair but they don't do them so its a case of shopping round a bit more.
Forgot to ask her about a sort of stair gate to go across the top of the stairs -I'm always afraid I'll fall on my way to the loo on walking sticks -and forgot to ask about wheelchair. I know red cross loan them out for period of 2 weeks but I really would like one of my own so that someone could wheel me into town on a fine day. Expect I'll have to pay for that though but its knowing the best place to go for them.
Same with computer chair.............blessed thing I've got at the minute isn't too comfy.

Had appt through for dexra scan...next Tuesday and should get results within 7-11 days...........in time for seeing consultant so quite pleased about that.

Least it seems things are moving now..........just need DLA forms completed and that won't be till age concern come out to help me with them on Feb 7th.

So, thats my lot today...........quite wore me out showing occ.therapist what I could and couldn't do, up and down stairs I was, -so now, legs and back are aching.

Sorry for long post but feels like such a lots gone on.

Hope you're all ok and hugs ((((((:o))))))))) if you need them

Indie_Kid

I have doctors on Thursday. Maybe they'll take me seriously this time. (I supposedly have a virus - that was three weeks ago. It has now become worse)

formaldehyde_perfume

sh1305 wrote: »

I have doctors on Thursday. Maybe they'll take me seriously this time. (I supposedly have a virus - that was three weeks ago. It has now become worse)

You could have a virus, some do last that long, but if it doesn't go away with complete rest after a week then they need to do some investigation, and if you are feeling that bad then there are antiviral drugs they could try. I don't think these people understand that when you feel awful anyway (usually the entire reason for seeing them) fobbing you off is only going to make your situation worse.

sunnyone

mary-op wrote: »

blackpaw - think I'll stick to my folded over duvet on top of the mattress -seems to work ok for me at the minute anyway. Might as well save my money.

Trialia - how did you learn to meditate ? It's something I could do with trying I think but wouldn't know where to start

Lady from age concern came today to see what help they could offer (stupid me thought she was due yesterday-got days all muddled........lol) I've got endless leafllets for handymen, cleaners, alarms -dont need them at the minute but worth knowing about. There may come a time when I do.
Occupational Therapist called this morning and measured all up for extra stair rails, rails on the landing, bed support and bed rail, walking sticks and raised toilet seat.
She also mentioned stairlift and fitting shower above the bath (Our bath is old fashioned sort and can't fit a bath seat in it. I'd prefer shower and loo downstairs) These things are dependant on getting council grant..........if our savings are too high we might end up paying for it all ourselves. Well if we have to do that I'll opt for the shower and downstairs loo. We've got the room for it.
I did ask about recliner chair but they don't do them so its a case of shopping round a bit more.
Forgot to ask her about a sort of stair gate to go across the top of the stairs -I'm always afraid I'll fall on my way to the loo on walking sticks -and forgot to ask about wheelchair. I know red cross loan them out for period of 2 weeks but I really would like one of my own so that someone could wheel me into town on a fine day. Expect I'll have to pay for that though but its knowing the best place to go for them.
Same with computer chair.............blessed thing I've got at the minute isn't too comfy.

Had appt through for dexra scan...next Tuesday and should get results within 7-11 days...........in time for seeing consultant so quite pleased about that.

Least it seems things are moving now..........just need DLA forms completed and that won't be till age concern come out to help me with them on Feb 7th.

So, thats my lot today...........quite wore me out showing occ.therapist what I could and couldn't do, up and down stairs I was, -so now, legs and back are aching.

Sorry for long post but feels like such a lots gone on.

Hope you're all ok and hugs ((((((:o))))))))) if you need them

I learnt to meditate via the pain clinic and physio, it took forever but its worth it, Im currently learning the the mindful way to beat depression forever with a pyscologist, it a mixture of many therapies including traditional hindu relaxation tecniques alongside the self hypnosis that I currenly use to relax my body and help with the spasms.

your gp can refer you to wheelchair services and they should provide you with a wheelchair on long term loaned free of charge, make sure that you get a cushion assessment so that you get a decent cushion (which can easily cost more than the wheelchair!)

You might not be able to get a stair gate provided, I had to buy my own and it cost £20 from argos.

I have a recliner that I use in the conservatory when it cold, what kind of recliner do you want?

Manuals are really difficult if you dont have powerful legs so mine is electric and the best bit of advice I got was keep away from disability shops because the are sold everywhere much cheaper.