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Advice please tearing us apart

things are getting worse !!! I have now got to the stage I can’t think “normally” , just the idea of carrying out a phone call or task is overwhelming , we are now in dire straits financially and are searching our home (which we will lose) for things to sell , I get mobility low level and I am currently off sick on half pay . We can’t manage , my mobility and cognitive ability has declined significantly to the point I’m frightened to go out or drive my company car which I’m going to lose soon , I have depression and anxiety too and over the last few months have noticed a massive decline in my mental ability , it’s like a dense fog I can’t shift , knowing what to do is scary because I don’t know who to turn to or how and my mind just says you can’t do that , and I can’t remember how , my wife is blaming me for not trying to work ! I wouldn’t know how at the moment , it’s so upsetting , her wedding rings are off for sale and she is considering selling her car to pay the bills . This is going to finish us … Me … She says I probably need 24hr care which she can’t give , my daughter is 16 and finding this so hard , mornings are the worst as I struggle far more and just walking to the toilet is hard … Can anybody advise me ?? Us?? Please ?? Desperate !!

I have not registered for a Disabled badge , as I believe that I would not qualify, I have problems with my walking occasionally and my wife has to lift my right leg out of the bath, I also get very Lethargic during the day. My doctor has just changed my medication from Rebiff to Tachefedera Tablets twice a day, is there anything else that I should be doing, I am working full time and try to remain positive but do on occasion find myself feeling depressed.

Hellfire…this situation needs help…now!

Okay, I think you should apply for a re-assessment of your needs…as regard PIP…but of course, that`s gonna take time…but do get the ball rolling…someone will help you fill the forms in, from CAB or suchlike, if you ask.

It sounds lie your wife hasn`t the faintest about how badly affected you are by illness…both physically and mentally.

Your poor daughter is gonna suffer too.

Have you got a close friend or family member to talk to…and could they speak to your wife on your behalf, to help her understand you better?

Eee lad, I feel for you.

luv Pollxx

I’ve got nobody to talk to her , I’m at my witts end , my family can’t even talk to her , she says they are interfering and that I need 24hr care which she can’t give x

Hi

Would professional carers help? Your local council may be able to provide help that wouldn’t solve all your problems but may take enough of a load off to make a difference. Also the council may provide practical help around the house, ramps, handles etc, which may make things easier.

At work maybe Access to Work may be able to pay for practical things which might make your life easier so you can go back.

I don’t know if this helps but I hope things get better. I’ve found that even the act of trying to make things better has made me and those I care about feel a bit happier.

Sam

Sorry you are feeling so rough. Please ring your MS nurse or GP on Tuesday and demand an urgent appointment. They will be able alert or advise you on the relevant people to contact to help you to get some assistance in the home or help with financial difficulties. The GP can also prescribe you something to help lift your mood or change any anti depressants you may be on already. They can maybe put you in touch with a counsellor who you could see with your wife who could help explain to her the affects of MS.

Hope things can get sorted for you soon

We can all listen to you - and of course we do understand your problems. But we can’t do anything to help in a practical way.

You need urgent medical help - MS Nurse GP - get them out to see you at home - if possible. You must get in touch with the DWP - and you need to get high rate mobility and personal care. Do consider joining benefitsandwork - or turn2us is another.

Do you tell your wife and daughter - at 16 she is old enough to understand - all that you tell us on here. lf not then get them to read it.

MSS helpline is there to help - but only if you contact them.

Selling bit and pieces off is not going to help in the long term.

lf the DWP ask you to go to see them - say you are too disabled to get there and need a home visit. lf you make the effort to go to them - they will think you are more able then you are.

It’s my cog fog and inability to think straight or remember stopping me working , it will not shift ! Aaaah help ! Nobody understands !

I’m a field based engineer so not based in one place so won’t help sadly .

We do! We can only offer suggestions and support.

You HAVE to call for help yourself.

Sorry I am lost for further ideas.

pollx

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I know how you feel, as far as the brain fog is concerned. I was getting so depressed, I couldn’t see any point to life. what ever anyone said didn’t make any difference . I couldn’t do anything that needed me to focus on it. The people on here gave all sorts of advice but I felt that they didn’t understand! The one bit of advice I took was to speak to my MS nurse and GP. I was prescribed Amantidine but i put taking it as I was worried about the side affects. When I finally did start taking I was surprised that I have virtually no side effects and it has made quite a difference. I can now do so much more and my mood is so much better. At the same time I started to take large doses of vitamin D so that may have helped as well.

Speak to your GP/MS nurse AS SOO AS POSSIBLE, they will be able to help you.

As far as your debts are concerned talk to the CAB they are very helpful and will point in the right direction. There is help for people how are in debt.

You will only get the help you need if you ask the right people.

You feel we don’t understand but most of us, even though all our circumstances are different, have felt as hopeless as you are feeling and most of us have worked though it. With the right help you will to.

Teddie x

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Ive been on citalopram for 5 weeks , hoping it gets better , will need to sort something out bit my brain isnt letting me even go out and drive !

But not bit sorry

Gaz, seems to me you need to take some control back. When I said I’ve been there I wasn’t kidding. When I found out the news I had MS I totally lost the plot, decended into madness. I left my husband, son & went numb. I didn’t come home for a year, really. Was in debt up to my neck. Was told by gp I was having a breakdown, didn’t believe him, but really I was. I too had brain fog, serious brain fog. The good thing was my hubby could see it & forgave me, I put myself through hell & everyone else. Trust me when I say, there is a light at the end of that big tunnel, but you need to do something about it, please dont think Im being harsh, Im not. You wouldn’t believe how bad it got. I’m not at the end of the tunnel, but I will get there, whatever this damn illness has to offer. You can do it, but you need to fight & fight damn hard. your only 43, life ahead of you, with MS. Its not over, just a different chapter, fight mate, glad I did. Tracey x

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Maybe the dose or drug isn’t right for you please talk to your GP. I am on Citalopram too just a low dose 20mg only been on it 4 days so too early to comment on effect for me.

Fight back you can do this.

Snowqueen

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it sounds as if your wife is unable to help.

The priority seems to be finding someone who will sort out any financial benefits you can claim. Is there any family member/work colleague who could help. If not, contact your local M S Society and ask them if they have someone who can help.

What you don’t want is someone who will tell you what to do, what you do want is someone who will do the sorting out for you - get the relevant forms, help you to fill them in etc.

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Hi

I haven’t got much to add to what the others have said. You definitely need to appeal/ask for a re-assessment regarding PIP. And get the help of the Citizens Advice Bureau, as they should be able to show you how best to answer questions (I heard a statistic that said something like 60 or 70% of appeals are successful when they’re done with the help of things like the CAB).

Even though your job means moving around, I’d speak to Access to Work anyway as they could still help & give advice. Reducing your hours may be an option. Do you get working tax credits? If you get PIP then you should qualify for the disabled component of it if you work over 16 hours a week.

Ask your neuro if you could get Modafinil. It helps with fatigue & concentration, and is great, but it’s also hard to get it prescribed. But definitely push for it if you can.

Are there any other ways you can get your spending down? It’d be worth having a look at your monthly spend to see if there’s any other things you could cut back on.

And, tell your daughter that you love her & think she’s ace! This is obviously a very unsettling time for her, but all kids need to know they’re special to their parents, so be sure to let her know that.

Sorry I can’t help more, but I hope & pray you get the support you need.

Dan

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Tracey, your advice to Gaz is spot on. You know from personal experience just how bad it can get.

You’ve faced your demons are are getting there…good for you!

Isn’t she a trooper, Gaz?pollx

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Firstly Tracy spot on… Hats off to her… Wot I can add from my experience is1st check any insurance policy s you have… My Ms was covered under critical illness cover on my life insurance this was unknown to me as I did not class myself as critically ill…almost over looked… As for fog I have been to see a psychologist who told me use apps and a diary !! I almost laughed out loud as I forget to write in the diary !! Turns out a few weeks into it I got huge surprise as it kinda started to work!! Wow! Honestly try it… As for u wife well I want a say she must b under huge pressure like urself and maybe spitting a wee bit anger out which sadly arrives at you … Remind her as a team u stronger, if shoe was on other foot how u wld behave,communication is key … Tell her it upsets u hearing about 24 hr care, remind her you are not asking for that nor expecting it…yes there is issues that need attention now but other issues like that are not on the agenda for her to deal with alone make the first move to doc asking for help to show her you aren’t expecting all from her but it it needs to b a team effort…I hope things get better for you and u family … As Tracy says light at end of tunnel is wot to look too … Good luck

So far you have had great advice from your fellow MS buddies.

God - I feel useless, you are really going through it.

Just sit and breathe and try to calm yourself. Firstly make a list of things to do. I call them TODOS. OK so before it would take only an hour or so to get through them, but don’t worry if it takes you a week. Tick them off when they are done, then go on to the next one.

  1. Phone MS nurse for urgent appointment and tell her everything

  2. Appointment with G.P.

  3. CAB - think you’ll have to go to their office

  4. Phone MS helpline or your local MS branch and ask for help

  5. D.W.P. If they know you are desparate, they will arrange a home visit.

  6. Sit and talk with your daughter, try to explain how you are feeling, and explain what this nasty MS is doing to you, I bet she could cope with those calls in minutes, (kids do it better and faster anyway) and she can help you look on-line for the freephone numbers, then she could talk to the faceless auto voices until finally a real live person is available to talk with you. It will help her to know that she is helping you to cope with all of this. You cannot believe how many times that I have sworn and screamed to at the auto voices, thrown the phone across the room and cried in frustration, before eventually getting a real person.

  7. Calmly try to talk with your good lady, she is probably as freaked out as you are by all of this. You could ask the Social Services for a short term care plan to help you both until you adjust to your problems

Please stop worrying about the things which you feel you have lost control of, if you do it at a tortoise pace, you will get there, I Promise. All of the stress of this will only make you worse. Try to relax and rest so that you will feel stronger during your active times.

I wish you the very best of luck, try to regain control and you will make it.

Take care - Mary x

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