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ok, 6 flight's of stairs to get in to my flat - with a toddler and a baby!he

Hello I’m a newbie and after some really urgent advice, if you could help I would be very, very grateful as I am getting very worried now about mine and my childrens safety…

To cut a very long, long story short…

I am a woman aged 31 years old I was dx with rrms in 2005 after complete paralysis in my right arm was hospitalized and on steroids at that time, this went on for around 3/4 months I was very poorly, I had blurred vision, extreme fatigue and stiffness in both of my legs along with the paralysis I recovered fully from all symptoms and have not had any problems since, until now!

I have 3 children, my eldest is 9 and my youngest two are nearly 2 years old and 4 months old, here is where the problem lies… for the past couple of weeks I have been suffering from what I like to call ‘Jelly Legs’ after walking up the first two flights of stairs (bearing in mind there are 6 in total to actually get to my landing then there is quite a long walk to my flat - its at the opposite end to the stairwell typically). Now I am not stupid I know I could use the handrail to steady myself but I have my son in his car seat who at present weighs 16lbs (1 stone) and my toddler daughter on reins who wont always walk herself so I kind of have to scoop her up in my right arm.

I visited my GP on Friday to discuss another medical issue and mentioned it to her (as to be honest with you i’d actually forgotten about the m.s.) and she told me to contact my m.s. nurse. I contacted her when I got home and she came out to see me that evening, she was here around an hour and was great, we went through all my symptoms and she said it could be that the constant walking up the stairs every day (sometimes two or three times a day) could be having an effect or it could be a relapse. She is arranging urgent physio for me (a home visit) Obviously I am devestated, and would really like your expert advice, I am currently in temporary homeless accomodation with the council and have to wait until late November for our ‘booster’ points to bid on a new property, I have sent in today a medical form to the council explaining my condition, the problem is and what I am really worried about, is them dragging their heels…I am so scared I am going to fall bacwards down the stairs onto concrete with my babies there is nobody ever around in the stairwell so if that happens and i hit my head what happens then? There wont be anybody to help me. I am so, so scared if anyone could offer some words of wisdom I would be very grateful.

Thanks for reading this essay :slight_smile:

Hi

I would ask your gp, neuro, ms nurse and physio all to write to the Council

for you, in order to get you up the list as quickly as possible. Also it may be

worth you getting in touch with your MP to push it for you, as the way I see it,

you definitely need to be on the ground floor.

I wonder if it might help also if you ring the Council regularly, I suppose what I

am saying, is make a nuisance of yourself (in a nice way, of course). It may well

be that those who makes the most noise (in a positive way) get help first.

Hope this helps, best of luck

Pam.

Hi Pam,

Many Thanks for your helpful reply, I have previously contacted the council periodically anyway as we are in quite a small 3 bed maisonette with the 3 children, I handed in the birth certificates of the youngest two in April and they still havent put those on the system! Every time I phone they tell me to call back the following week, I feel like I am banging my head against a brick wall most of the time, they just do not seem to know what they are doing most of the time sadly. The thing i am most scared about is the falling with the babies in my arms and there not being anyone around to help, do you think it would be worth calling in the council neighbourhood wardens to help me every time I need to get in doors, thing is I dont want to make a nuisance of myself either…

Thanks

Hi & welcome to the forum.

I would make the council aware that your condition is unpredictable with RRMS & that the condition is covered under the Equalities act (was Disabaility Discrimination Act). I would ask the question about what would you do to get through your door if you had difficulties with the stars.

You are already doing many things, I would just keep pushing the council.

All the best

Neil

I would get in touch with your local MP,and tell him about how hard it is for you, they should push things along for you,i got in touch with mine, and had an email back the same week,and social services came out straight away to see me, normally i would have been waiting months,they really are the best people to help in situations like yours.

Please don’t worry about ‘making a nuisance’ of yourself. This is important for the safety of you and the kids and sometimes you do just need to phone and hassle people to get anything done. Good luck and take care Karen

Thanks for your replies, I am now getting worse. waiting for gp to turn up atm.

spoke to my homeless housing officer at the council who said the only thing they can do in the mean time is move us into a two bed tower block!!! which is going to be a right pain as will then have to move twice instead of once as get homeless booster in November to make the permanent move, spoke to m.s. society this morning who said that would just be more stress and would probably make me feel worse, have said housing officer paying me a home visit in half an hour 2pm! so see what he says. phoned allocations this morning and they still havent put the birth certificates on the system for the babies and havent put my medical priority on either.

I feel as though I am going around in circles and banging my head against a brick wall. cant stop crying.

Just looked to see if any help has come your way yet.

Where are the social workers - OT’s- Local Councillors -MP- GP - and the MS organisations - you need action NOW -

hate to say it - but if you were an asylum seeker you would soon get help!!

Time somebody in a cosy office - got there finger out!

Next time you can’t get up those steps with the babies call the Police or the paramedics - dont’ put yourself and the babies at risk. l am pretty sure they would soon get the right authorities to get involved.

All the best dear

F.

This is getting ridiculous, housing officer just called and cant make it! how did i know that was going to happen? he’s going to call me back to rearrange at some point. I really dont know what else to do, am still waiting for the lady i spoke to from ms society to email me contact details for my local branch. I really feel forgotten about.

Hi

Stay on this forum, that way you certainly are not alone, most times there

is someone on line.

Just a thought do you have a social worker, if not, ring social services today

and ask for an urgent assessment, they will come to your home, ask loads of

questions etc. Tell them how bad things are, dont hold back, this could lead

to the breakthrough you so desperately need. And NEVER EVER think you

are being a nuisance, you need what is best for your health and the safety of

your little ones.

I wish you all the best, but dont forget, this forum cos it is a lovely friendly bunch

of people, which is good especially when you are feeling so low.

Pam.

as well as all this good advice that has already been given, perhaps you could call on the safeguarding children legislation? everybody (especially councils) has a duty of care.

good luck, i hope that you soon get this issue resolved so that you are able to enjoy your babies

carole x

hotheels,

your local MS Society branch should be able to help you find the practical help you need once you have the details. If this is still true: “am still waiting for the lady i spoke to from ms society to email me contact details for my local branch. I really feel forgotten about.”

then if you send me a private messsage and tell me where you live, I will try to find out the contact details of your branch and how they can help you with moving to more appropriate accommodation. I used to chair our local branch so I might be able to find the information if you still need it.

Your MP would be a very good person to contact as others have suggested. Do you need help to find out his/her contact details? (I mean help with the time to do it, I’m sure you’re quite capable!)

Call the warden if you need their help with doors - it’s their job!

Best wishes, Sue

Hi

I to am in a simliar position to you, I also have 6 flight of stairs to climb but my youngest child is 7 so not as bad. Find it hard with shopping etc though and sometimes just the actual climbing of the stairs is enough.

Unfortunaly we own our apartment & are currently in the process of having to sell it for this reason, but the market is so slow. I have contacted my local social housing and they sent me a medical form, and then immediately put me on Gold banding. Not sure if other council work the same, but apart from being homeless this is the top. So once we have a buyer for our apartment, we can start bidding on houses, otherwise we will private rent,

Dont understand how councils can be so tough on people that need the housing, & very quickly house those that dont respect the houses they have been given to live in rent free. Makes me mad,

I have been told you are entitled to a social review, where they come to your home & assess how your living, maybe that would help.

Good luck, hope things work out for you, pile on the pressure everyday to those involved.

Andrea xx