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Were to get help from without a full diagnosis.

Goodmorning everyone.

After being stuck in the bath yesterday yet again,my legs went numb and refused to work for about half an hour,the bath water had gone cold.I did manage to get out of the bath but my legs didnt feel my own.

Later in the evening I went to bed and my legs went numb again.I was stuck in bed for an hour and a half,the numbness did ease but not completely.I got up this morning and I still have a slight strange numb feeling.

My arms are weak and my body paining me as usal.

My question is,although the neuro belives I have MS and my doctor and nurse I have not been fully diagnosed.Yet I have all the signs of MS.And bad ones.

I need HELP now,I am struggling to stay on my feet or care for myself,I have a 10 yearold at home who also needs care.

What help can I get now,what aides can I get to help me,Im being trapped in my own home,sleeping some nights on the sofa as I am unable to climb the stairs.I had to send my child to school again on her own this morning.Am I entitled to any help?

Were do I go or who do I ring to get help.

I need my mobility back.

I have to ring my doctor after 9-30 am.

Do I ring Social Services for help?

Im lost of were to get the mobility aides I need to move around both indoors and out.

Any advice would be a great help to me.

Charlie.x

I don;t think you need a diagnosis of MS to get mobility aids. You could try ringing Social Services or see your GP and see if they could set you up with a visit from an occupational thereapist. They will do a survey of your house and get you the indoor and outdoor aids you need.

Thankyou Dave,I did just rang Social Services as today I am frightened and desprate.They have offered me to put a “Life Line” in my home.They have just put me on HIGH priority for an assesment however this could take weeks.I need help now.

I feel so guilty about even admitting I need help or asking for help.

Even though my symptoms fluctuate and I usaly have no warning of when these things are going to happen I still need help.This is the longest period of my numbness and legs not functioning.Scairy.

Im going to ring my doctors after 9-30 and see if they can help.

Charlie.x

The Doctor has just left,she has trippled the Amitripline and given me painkillers.

She is also getting intouch with the MS nurse and the Occupational Therapist for me…

It still dont get me up and walking again but its a start.And the break down in tears is realy not me but today I couldnt help it.

Any help is greatly recived and very much appreciated were ever the help is forth coming from…

Charlie,x.

I cant really say anything to help you, but hope that just knowing there is a community of people thinking off you and many shoulders and ears to lean on /rant at/cry with is of some help to you.

You mention a child who also needs help,have you contacted the necessary people to help on that front.As a mom myself I know that if your kids are ok you generally feel better and less stressed

Thinking of you

Pip

Hey Pip.

Ive contacted Social Services,this morning.

As she is a young carer she will need support to.

I love to read peoples posts as I have found out a few things that were happening to me happened to others.Its just nice to know someone is listening Pip.

Its just one of my bad days today,tomorrow will be better I am sure,just something are pritty frightening at times and they happen without warning.Im a fighter,I will fight back.

Its just nice to know there is someone out there and that now I am going to get the help I need.MS is not an illness that I would wish on anyone.

Well no cleaning will be done today and I think maybe a takeaway meal will be on the menu for dinner tonight.

Thankyou all for taking the time to read.

Charlie,x

When OT come to do an assessment remember to work on your worst day and all the things you need help with.

Each thing that you can do for yourself with/out an aid is one less thing you will feel guilty over needing your daughters help with, and each little thing adds up without you realising and then you feel there is a huge mountain infront of you.

For safety reasons it sounds like you need something in place for bathing/showering and getting in/out of bed for when your symptoms are playing up…when your ok you dont need to use them but on bad days like today feeling safer and maintaining energy levels for more important things you want to do will be a godsend.

No cleaning and takeaway sounds just the ticket,especially with home delivery.

Pip

Ahhh thankyou Pip.

On good days I feel like ME again,the usal ticks,twitches n spasms,pain wich I can cope with.

A bad day is today.I will take your advice and use it.On a bad day I cannot walk,I have not even been able to brush my hair today,my arms are to weak.

I do push myself to do chores,but have come to realise I cannot do it all,I know my limit and I know not to put myself in danger or at risk,if I cannot get out of bed then I will stay in bed until I can.Mobile phone at my bedside just incase I need it.

Im certainly starting to realise the changes I have to make.

And I know it is now time to ask for help for physical needs.I am going to stop being stubbon and think I can do it all.

Charlie,x

Well done you. See today is becoming a better day infront of your eyes.

Housework will still be there tomorrow even if you did some today so that can go straight to the bottom of the priority list.

If your hairstyle becomes an issue and you end up frustrated because you cant do it as you want then you can always treat yourself to a new hairdo in an easy to keep style.

Rest up today and think how nice the quality time with your littleun and a takeaway will be.

Onwards and upwards

Pip

Ive shed my tears for today Pip,I am not going to shed anymore.The home is basicaly clean,there is nothing that needs doing today.

I have considered a new short hairstyle,but my hair is long and straight and I love it.I love cold weather I can wear a hat to cover the tatty bits.

I am sitting on my bottom with remote in one hand and mobile phone in the other…

I hope you have a great day Pip and thankyou for listening.

Charlie,x

Hope it all works out well for you Charlie. Good luck and take care. xx Maria

Aids fixed to, or to do with, the house are for the Occ Therapist

Mobility aids are for the Physiotherapist.

Your GP can refer you to either, and a Physio can refer you to the Occ Therapist. But you did the right thing calling Social Services.

Think about asking any of these people about Attendance Allowance. It is the one benefit which is not means tested, and if you can get it (and help bathing or getting to bed/out of bed would be good reasons) then you can afford to pay for someone to come in and help you once or twice a week. You will probably need some sort of diagnosis though.

Geoff

So how is life today?

Well after I had to lay on the kitchen floor for around an hour,then later slipped in the bathroom,My legs have regained some of there feeling now but Im still shakey on my feet.

I have rung social services who cannot help.I even rung the MS society in Swansea who advised me to ring social services wich I have already done and got no were.

It appears I will just have to sit on the floor,get stuck in bed,hurt myself badly after a fall and get no help at all.Have my child taken into care as her mother is unfit to look after herself never mind her child.I am utterly disgusted that no one will help at least get me mobile…

Social services have a duty to assess anyone who asks for one.What have they said as the reason for no help?

I guess you are feeling very- whats the point- at the moment, but doing nothing is not an option. I would ring social services again and say you are at crisis point and need urgent help.

Feel free not to answer any questions but do you have a partner/family/friends who could help in a practical way or at least beat at the authorities door? If not could you talk to your doctor about referring you to the community teams for OT/physio assessment?

You are not an unfit mother just one who needs some help.If you cant get adult services to help you quickly could you go via childrens services,explain your daughter is a young carer and you are worried about falls while she is at school etc and her coming home to find you on the floor???

Or if non of that is an option could you contact your neuro and explain how bad your symptoms have become ?

My heart goes out to you,please dont let the MonSter or the system beat you down.Those that shout loudest with social services tend to get the most.

Take care

Pip

Pip I think the system has beaten me,I am a fighter but my fight has completely gone.I realy just had enough and just want to give up…

Ive told Social Services I am desprate,I know I need more help than just being able to stay on my own two feet,but to be able to move about safetly would be a good start.

I very rare leave the house now,I cannot even walk my child to school.Ive rang the hospital,the doctors surgery was closed,I spoke to a physio who said crutches or a zimmer frame,I cannot support myself on crutches or a zimmer frame,my arms are weak and pain me.But physio cannot help it has to go through my doctor…

OT are going to ring my doctors however they are closed.But again they have not received a referal and they also said crutches or a zimmer frame.Am I talking a diffrent language do they not hear me saying when I fall I cannot get back up due to weakness and pain?I cannot support my own body weight.Asking me how they can help,I was like I need help to walk and stay on my own two feet,mobility is the priority,well how can we help you do that?I said your the specialist you tell me how you can help me…

Again the system reduces me a very strong woman normaly to floods of tears,I have had enough of begging and pleading for help today.Time to take to the sofa and hope the rest of the day goes ok.

Gosh is this what we have to go through when we need help?

Is it just me that appears to be getting the short end of the stick?

Have others experienced this waiting game?

You beg for help and none is forthcoming.How do I get help?

Enough for today Pip,I have certainly had enough…

Charlie,x

Hi, you really do not need a diagnosis in order to get help.

Thats me........still not fully dxd after 14 yrs, but have been getting help since 2000!

The things I`ve had from OTs are;

grab rails, wheeled walker

grabber

raised loo

wheelchairs

door widened

electric bed/mattress

transfer board

patient turner

There is more than that, but you need an assessment from Social Services and then an OT will come to see you at home. They are al for keeping you safe and making life easier in the home.

Make that call noow, eh?

luv Pollx

ps I have just read through your replies andsee that you have sought help, but it isn`t coming quickly enough. That is wrong.

I can understand why you worry they will take your daughter into care. I doubt that would happen. Just tel tehm you could manage if you had some help.

Someone mentioned Attendance Allowance…that is for the 65+ folk. It is DLA for younger ones.

Have you ever thought about Direct Payments? I began using it last year. I now have oodles of help…all paid for by social services, as i was means tested and had nothing to pay.

luv Pollx

Hi Jellybean

Just wanted to reassure u re child going into care. That was a main concern of mine as I couldnt look after myself-never mind my 4 kids. The last thing that SS want to do is seperate kid/s from family. I dont understand why they told you that they cant help.

Take care Ellie x

Ive just had a call from Social Services,there main concern is I cannot look after my child and are willing to offer her services to help her.They offer me nothing but wait to be assesed.

The conversation basicly was along the lines of questioning me how I am coping then the conversation turned to my child is a priority bla blah blah…Your child is need of help when its clear she is not.They getting intouch with child services as there section only deals with adults and they are going to see if my child is safe with me at home…

My child cannot be at home or arrive home to find me on the floor is a concern of theres.

Then give me the help I am asking,begging,pleading for…

Well trying to do the right thing and ask for help has turned the tables on me…

Jellybean

I am gobsmacked at what you have been told! Sounds to me like they are creating a problem that doesnt exist instead of sorting out the obvious one.

Have u tried GP again? Local MP? Local CAB?

Am sorry-but its ludicrous what you are describing. I dunno what else to suggest.

Take care, Ellie x