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A relaxing bath was not a good idea :-(

Well. My daughter and husband have gone away for a few days to a festival. I thought I would take this opportunity to indulge myself with a nice hot bubbly bath.

Boy oh boy.....I can now remember why I dont have baths!!! It's just taken me about 30 mins to lift myself out. I feel soooooo heavy. My arms felt too weak to lift me. I'm trembling more visibly in my hands and well.......when I walk I shuffle like a lady of 101. (I'm only 39). I feel like I've run a marathon 

I know they say that a bath can make symptoms feel worse for a short period after a bath but WOW that was horrible. 

I had a horrible feeling that I was going to be there till monday morning when they get back!!! 

So...I'm off to bed....after I've managed to find the energy to walk there...and after I've penned the chickens and dog up. 

So I bid you all a good night.sleeping

Mandy moo

Mandy I get numbness in my lower body and get stuck in the bath,but my OT is getting me a bath lift and a bed riser...

Charlie,x

Hot baths are sadly a no-no for me nowadays Mandy crying2

But the bath lift is fantastic! I had an OT assessment a couple of years ago and along with the bath lift they also raised my sofa by about 6 inches (I have a retro sofa) and organised a blue badge for me too.

Having an assessment is definitely worth considering...

Debbie xx

 

Hi Charlie and Debbie,

I was just wondering, did you have to pay for the bath lift or other things from the OT? I have an OT and was wondering if maybe I should ask for something like this, he knows that I have lots of problems, chopping veg etc, lifting pans, getting in and out of bath (I don't have a shower, yet, but the HA is putting one in soon). It would certainly make life easier for me. I was also thinking of asking him if he could write me a letter so I could get a free bus pass, as I don't drive, ( I wouldn't be able to anyway, as I get so dizzy). I was wondering if maybe I should apply for DLA, does anyone else get this, as I'm not dx yet I thought there may be a problem applying for it.

 

Thanks,

Wendy.

Hi Wendy,

No you don't have to pay and there are loads of ways in which OT can help you.

I keep telling myself that I should apply for DLA - and my nurse keeps telling me too. I must do it. I'm not sure whether you need a dx to apply but it's sure worth finding out about. Have a look at the benefits section of this site - it may give you more info - or ask on Everday Living....

The same for a free bus pass too.

Debbie xx 

Oh I forgot to mention, I don't drive either but I still got a blue badge. It's assigned to the person not a particular car, if you see what I mean!

Debbie xx 

 

Wendy NO it is all free,but the goverment cuts are hitting the disabled and funding hard.

Ring your OT and get them to asses you ASAP.

These items we are entitled to even if you are wealthy,even if you win millions on the Lottery you can still claim DLA and get these freebies.

Wendy yes you need to apply for DLA and ESA.You do NOT need a DX to claim these benefits nore be in reciept of other benefits,rules state you do NOT need a DX you only need to show you are in need of help.

Ring them up or pop into your local job centre and get a DLA form for adults.

I have a tip,rather than appeal because you belive you get a lower rate of DLA than you think you are entitled to,get a review form after a month,gather all letters from your service providors like doctor,OT etc then fill in and send in the review form.If you appeal you get no help untill the appeal has gone through,a review form takes upto 15 weeks to be looked at but worth it.

Charlie,x

Thanks Charlie and Debbie,

I'll look into DLA, will try and get the forms this week, I may have to ring my OT up as I don't know when I've got my next appointment.

 

Thanks for all your help.

Wendy.x

Hi Wendy

As Charlie & Debbie have informed you about DLA, I found that if you ring for a form, the number is in www.direct.gov.uk you will not have to mess around with the job centre. There are 2 dates stamped on the form, the date of issue/claim, date it could be backdated too, and the date the form needs to be returned by, approx 6 weeks later. In the interim
1- download the form drop the GP to complete section off with GP and ask them too complete and sign
2- if you are seen by a specialist or have reports, copy them as they are good evidence
3- if you assessed for your needs by SS get a copy of their report
4- contact the disability rights team at the local authority, they will fill forms in better then you (no disrespect meant, but they know the lingo, and if you suffer from brain fog, as I do, it helps)
5- your blue badge is granted by the loal authority but is pan-European- if you fancy a hol with car.
6- your local authority building control dept may help you with grant based modifications with OT/SS report.
7- cannot claim carers allowance unless middle DLA care is granted- worth £55 a week approx
8- if you are on ESA you can claim travel exp for hospital visits (form HCA1)
9- keep copies of all reports/forms if ATOS invite you for assessment, you can use as evidence of MS. If they do ask you to attend give them a ring and if you have been diagnosed, tell them and if you will struggle getting there ask to speak to senior person.

I hope that this helps and I am more then happy to assist with info from my experience.
but if my spelling is cr** or if my grammar is the same I apologise
Mike

Oh dear.  Yes, I've been there.  Apart from the weakness and wobbliness, a hot bath also makes me not be able to see properly with my right eye (residual damage from a previous relapse) and, even though I know it will ease when I cool down, this just freaks me out totally.  So no more hot baths for me. :-(

Alison

x

Hi everyone, 

I've too thought about applying for the DLA but I feel a bit of a fraud.

There are so many jobs that I struggle with and I need to lean on my family to help, my husband and 16 year old daughter especially. And I guess because the jobs get done.....cooking, cleaning, occassional driving me araound, washing, personal washing etc etc then it feels as though I should just get on with it.....but I hate the pressure that this puts on my dearest loved ones. 

Alison..... I can completely empathise with feeling freaked out. Even today i keep thinking back to how I was last night after it and it sends shivers down my spine. My vision and cognitions were definately slower after the bath....I kept telling myself off and saying " for goodness sake...it's not that bad....walk properly...." but nothing would change. 

So yeah I agree....I'm gonna stay away from baths in the future too.

 

Thanks everyone for your input :-)

 

Mandymoo x

Hi Mike,

Thanks for all the info. very handy to know!

The thing is I do struggle with lots of day to day things, there's only me and my 14 daughter here, and although I manage to do most stuff albeit much slower, it is VERY painful for me. I sometimes find it hard to walk, especially upstairs. I can't chop veg and stuff up, it really hurts my fingers, wrists and also my shoulders. This is all very strange to me, as I'm such an independant person!

The other thing is I'm not sure that my GP is fully aware of all of this, I've not been dx yet, and although I do tell him and also the OT of my symptoms,  I'm sure they don't realise just how bad it is. I'm afraid that this may stop me from getting DLA, as they might put wrong things on the report.

 

Thanks again,

Wendy.

Wendy you do not need a DX to get DLA or ESA...

If your worried make and appointment to see your GP and your OT as soon as possible,if your not having meds then ask for some.

Just be truthfull on the form and dont worry if you dont want to ad you need help with toilet needs etc,please ad it.

Many say think of your worst day then work from this.

Mandy you need to apply,you are in need of help.Get a form ASAP....

To get a higher rate you need to have to need help during the night and the day.Getting ready for bed and getting into bed and out of bed counts as you need help.If you struggle like me to get out of bed then you need help.OMG I had to do blouse buttons up on Wednsday,eesshhh I have not done buttons in a long time,took me forever to do them up.I wear T-shirts n hoodies now,so if you have gone from button up cloths to pull on cloths then describe how you struggle with buttons and zips.

Have you ever had night time spasms or ridgidness or full ridgidness during the night?

Then state you get these and need help at night time.Just because you think you do not get them every night,that can be wrong as often you may have spasms during the night and not know you had them until you get up in pain and all stiff in the morning.

Also start to write a letter of all your symptoms and struggles then write on the form see letter enclosed.Add this written or typed letter in with the form ready for posting.

If you struggle to brush your hair then state this or struggle with washing then say this to.

Im just trying to give a few pointers,do not be afraid of the form or take it to CAB and get them to help you.

Charlie,x

 

Hi Charlie,

Yes, I do struggle, even when putting clothes over my head, as my shoulders REALLY hurt. When I squeeze toothpaste it hurts my fingers, when I brush my hair or use hairdryer it hurts, basically  it hurts when I do most things...I'm beginning to think 'Is this normal' does everyone of my age (52) hurt? I do suffer from toilet needs as I have Ulcerative Colitis. The thing is I did apply approx 6 or 7 years ago, and I was refused....mind you I did not have all these other problems then...just my UC.

The thing is, I'm a bit concerned that if I go to my GP (he's not very sympathetic) he will think that maybe I don't need DLA, he's my new GP, I had one before that I had to get rid of because he was useless. I just feel that there are people worse than me who should get it....as I don't 'look' disabled.

 

Wendy.

Wendy if you feel your doctor is being unfare to you,do you have an OT or MS nurse who would sign the form for you?

And or someone who help care for you?

Always put the most caring at the top of your list.

Wendy you are in need,even if you do not get the higher rate its something for you now,then as I said a month later ask for a review form.

I understand the hairdryer and brushing of hair,it does hurt I also get that heavy weight feeling and my arms get tired easily.My excuses to friends is I am having a PJ day in my head I know its because I am unable to get dressed that day.

Ring your OT tomorrow and tell her you are struggling,you can then get a bath riser,bed riser,rails fitted free through the home like the bathroom and toilet.If you need a walker with a seat,adjustable stool etc.It sounds like you realy need them,then if she or he recommends these aides just because you have not got them yet still put them on the form that they are to be delivered and fitted.I am lucky I have a downstairs loo,you may wish her to bring you a comode,you only use it a few times but its there just incase.

Do not feel like your being a fraud that you may only use these items a few days a week or dont need them throught the day.They are there for when you DO need the help and with MS we do not know when we are going to be ill or when we need to use these aides.

Simple tools for doing up buttons are available,why should we have to rely on others,if we are given the right tools we then get some independance back into our lives.

If your OT is a helpfull one then get them to sign the DLA form.

Please DO NOT suffer in silence,pick up the phone and get the help you deserve.

Charlie,x

Thanks Charlie,

You've been very helpful, I think I'll give the OT a ring tommorow and see what he can do for me.

 

Wendy.x

You are very welcome Wendy.

Another tip on the DLA form it asks what would you do if you had the help.I said I would take my child to the park or go shopping and actualy buy a pair of jeans that I had actualy tried on and not online shopped for.Simple things.

It asks how many minutes it takes to do certain tasks.For getting up in the mornings it can take me 20 - 90 minutes to get up and out of bed for a wee.There for I wrote 20-90 minutes.

Wendy your entitled to this help so why not get it.Tell the OT you need help quickly I am sure they will try to call as soon as they can.

Good Luck and if you need any further help or advise please ask.

And another one,if you find it difficult to carry things your OT can get you trollies etc.

Charlie,x

Wendy if you want to go through the form and see what ist like click this link:

http://www.direct.gov.uk/en/diol1/doitonline/dg_10017715

Thanks Charlie,

You've been very helpful, I think the first step will be to ring my OT tomorrow and see if he can give me some bits and bobs to help me with stuff.

Then I will maybe try DLA. I know that it is becoming much harder to get DLA now, but if I don't try then I never will.

Thanks again,

Wendy.x

Your very welcome Wendy,you never know until you try.

Charlie,x