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How can I go on?

Only been diagnosed five years and in that time I’ve lost part of my eyesight, I’m now using a rollator and can walk nearly 30 metres (go me). I do ISC and use a bowel irrigation system. I have a myriad of other symptoms. I had my second round of Lemtrada in June 17 and as such am meant to be seen every four months. By the time of my next appointment, in March, it will have been ten months. I have not had an MRI for over four years. As far as I’m concerned the hospital have totally washed their hands of me. My last bloods and urine test pulled up an infection, and it took them ten days to tell me that. I don’t feel as if I can ask them for help now, they clearly don’t want to. My partner has told me he doesn’t find me attractive any more. Nappies and leg braces on adults don’t look great. I’m not surprised. Every single one of my ‘friends’ has disappeared. As soon as I got sick they drifted away. Guess they were never my friends at all. My mother is incapable of talking about MS, and just pretends it’s not happening. My partner is uncommunicative. I am completely alone. I’m off work on gardening leave - I work for the DWP and had an occupational health assessment in August. They haven’t actioned any of the recommendations and I started to get chronic backache from having the wrong set up of my desk. I hate my job but it was the only human contact I had. Basically, I just want to die. My partner’s only with me because he doesn’t want me to be on my own but I wish he would leave me so I could end it. I’m sick of the difficulty, I’m sick of the loneliness. I’m just tired of it all. I’m 34 and I can’t handle another 40 years of this life. I bottle it all up and then take a load of sleeping tablets to block it out. It wouldn’t be too hard to take more. I sleep most of the time now, it saves having to struggle round the house. I don’t go out anymore; it’s like a military operation and it’s not like I have a reason to go out anyway. I’ve got nobody to visit. Sorry for going on. I feel as if I don’t tell someone I’m going to explode with everything that’s in me. I hate my life. I always thought I’d get used to it but after five years I hate is more and more as my condition gets worse. I have no hope for the future. I want my partner to be free. He won’t leave so I’ll have to leave him, and then I’ll have literally nothing and nobody so I might as well be dead. Happy New Year. Let’s celebrate another year of this rubbish life.

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Hi Tingly B, i have only just joined this Forum, i had to. In the past week i have gone from on top of the world to rock bottom. I had some evil and distressing thoughts. Not good!. I can under no circumstances understand your level of pain with this horrid condition. I have had RRMS for 9+ years now and given that i have the best of a cruel condition, i feel guilt beyond belief to the point that ending it all was my only way forward. Thankfully i joined this forum and have dragged myself back from the edge. I am by no means fixed or even back on stable ground but after all the support ive had from this group i feel that there may be no true answers here but sound advice that provokes positivity and enable me to look deeper within myself for a way forward. The form response page is even better because it puts a wiggly red line under all the words my fat fingers mispell!! I can honestly say that the support you deserve within the system sounds completely short in delivery! Perhaps someone on this forum can provide advice on how you could perhaps improve that, theres a sound mixed bunch here and i’m sure someone else will have experienced similar issues. The forum is reasonably instant in support and just chatting may be enough to help you get through this 1 day at a time. I have posted recently and you should check out some of the responses i’ve had that may help you! I know its hard and pray you can find some peace in this forum like i have over the past few days, chat antime, Jim

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Hi tingly_badger,

Perhaps it is time to give up work, most people leave work 5 years after diagnosis. You have done well,

and now need to re- focus life, with a different lifestyle, which will bring back a good quality of life.

Do you have any hobbies or interests you could spend more time on?

Is there an MS Centre near where you could do some physio classes?

Are there any adult classes in arts or crafts you could join one day a week?

This might be a place to make new friends with a shared interest etc.,. many folk with disabilities join them.

A scooter or powerchair might help you get around more easily.

We have all been at this point you are at now - it’s time for a few adaptations.

I don’t need to tell you about access to ESA Support Group and PIP.

Hi Tingly Badger (great name!)

I’m so, so sorry life is so painful for you. Not long after diagnosis, I went through such a dark time, and came so close to ending it. I had no hope. But somehow God got me through it, got me on an even keel and helped me to process what I was feeling. I do have a life now, even if it often hurts, and I thank God (literally) for saving me.

As anon has suggested, finding activities to do (especially ones that involve connection with others) should help draw you out of yourself. See if there’s a local group of the MS Society or MS Trust you go to, or exercise classes for people with disabilities. Learning things is known to help improve well-being, so have a look at something like futurelearn.com. It has hundreds of courses on all sorts of subjects, delivered by universities all over the world for free. One of the things I like about it is that you get to interact with other learners online, discussing things you’ve learnt (I’ve done courses on things like forensics in crime scene investigation, propaganda & ideology, understanding the weather, creative problem solving…).

Call your GP to ask for anti-depressants, and ask for a referral for mental health support. Also, call the MS helpline on 0808 800 8000. And come on here as much as you need to, and let out what you’re feeling (bottling things up forever is not good in the long run). You don’t need to go through this alone.

Dan

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hello tingly badger

don’t you dare to go and die on us!

it’s a proper bum deal you’ve been dealt.

you can be stronger than you think you can.

Dan’s advice on joining a class is excellent.

i had art classes when first diagnosed and it was just what i needed.

as for your ms hospital. write or email them with how you feel a little abandoned.

you could contact PALS - Patient Advice and Liaison Service to see what help they can offer.

as mentioned by anonymous, get onto occupational health at work and point out that none of the recommendations have been actioned and that your work station has caused back problems.

see your doctor about anti depressants, it is nothing to feel ashamed of, blimey who could cope with what you’ve tried to cope with?

honestly this shitty illness has changed your life but change is not always bad.

you really need support in moving forward.

a starting point could be your local ms group.

being around other people who have similar problems is a big relief because you don’t need to pretend.

it’s perfectly normal to feel sad and angry, we have all had some of that but it does fade over time.

scream into a pillow if you need to.

your partner and mum are finding it difficult to accept (even though it is happening to you not them).

hope you find support and peace of mind.

sending you a tsunami of love xxx

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Morning tingly badger ( ok come on out with it i get the tingly bit lol but badger?) i need to know lol. Its a fab name. mine is crazy chick, because i used to breed rare chickens, and people would say your not a crazy cat person but a crazy chicken person. I loved them all they were such fun. On tope of all that I was teaching I.T. in adult further education. I had such a fab job and yes i was good at it.

then came the dreaded MS. Mind you though it was a toss up I think to be honest between MS or a stroke. I used to work over 60 hours a week i never stopped. My college HE did a routine blood pressure test on their teachers and mine was a shocking 210/115 lol…boom…

anyway i digress. It took 10 long years to finally get told i had PPMS. I went from no MS to the best there is.

Its really hard when you have always been active to suddenly face disability. MS comes with emotional changes and yes DEPRESSION. You are very badly depressed, you haven’t accepted your illness and in heavy grieving mode. You need counselling to cope with the grief of loosing YOU. We do loose ourselves when we get long term sick and disabled. Not just with MS but anyone in similar circumstances. Its normal but can really take over our lives.

You need help urgently, lots of good advice above. I think you have to sit your hubby down and talk to him. you must have had a reason to marry him and perhaps he is just not coping with it right. My hubby would get sad and say i hate it, i cant fix you i can fix any engine made, but i cant fix you, and this actually made him depressed, so perhaps your hubby is depressed too.

You mum well bless her, she just doesn’t know how to cope seeing her daughter so ill, so its head in sand syndrome. TALK TO HER. Tell her mum i need your help. Can you take me out. there is no reason why you cant go out is there? your hubby can take you out buy a wheelchair, go shopping/ Also explain to them you are not getting anywhere with the health service, and ask for their help, and make sure your hubby comes with you to your appointments.

Do you feel you are locking yourself into a cell of self pity? Yes i am being totally honestly here self pity which i have done myself, probably if we are all honest we all have to a certain extent and i realised at one point I was doing just that in my mind the words why me? whats the point? who cares? so on and so forth would bounce back and forth i knew then i needed help**.**

WE CARE. Thats a start. isnt it? I am sure your hubby and your mum cares too. Maybe your friends have distance themselves as they dont know how to deal with you anymore, or are afraid they may catch it. i had the same issues when i left work, so i made NEW FRIENDS. Yes you can. You have to become more active again, there is a life even if its with pampers and leg braces. The less stress and upset you are the less you will need these aids.

Stress makes us feel worse.

Now for me you need to see your GP and talk, where is your MS NURSE? Have you had an OT assessment, talk to adult social services maybe yu can get direct payments and have a care worker why not? someone who can take you out. thats what you need. I have a personal assistant through direct payments. Yes i have to pay a little towards it but without her i would be lost.

You have to remember your hubby is affected by all this and i think he just doesn’t know how to deal with you, maybe you have inadvertently pushed him away. you don’t like who you are so assume he doesn’t. You can still go out and have a meal together, have some life. organise a holiday and go away even if its just for a weekend. Have you spoke to an incontinence nurse or urologist. is there a real need for pampers or could you have a bag?

you need the tools to assist your life, i have an electric wheelchair, a manual one and a scooter. I have a dog who i take out everyday when its dry to the park and she walks by the side of me, and i meet others with dogs and we always end up chatting.

stop with the pills. You really are in dangering yourself. If you harmed yourself, do you not think it will affect your husband and mother? Believe me i have seen the devastation it leaves behind itself. Your gone, but the pain for those who love you never goes ever, they take it with them for the rest of their lives and its usually in the guise of guilt.

do you want that to be a legacy? tingly badger gave up … not tingly badger fought hard, and fought long…

you can do this, but you need urgent help.

I paid for counselling as i was referred to this stupid system where you talked to someone on the phone i needed a real face to face. I met a lovely counsellor it cost me 30.00 an hour. I needed it to cope with the loss of my mum, and my beloved husband and dealing with MS. she was great and pulled me back from the brink.

Below is the last part for now of my blog. it actually deals with depression as my husband was very depressed. He was a proud man and good and kind man, and he had COPD and it got worse and worse, when he retired at 70, he declined. He hated his life because he felt useless he couldn’t do what he loved doing, mending and fixing things. He did give up he never fought for us, and i have to live without him now. I just wished i had done more for him, but i was way too involved with my own pain.

You can change it, its not unfixable. you are on DMD they will work, but they wont if you dont want them too.

You have reached out which is the first step to recovery, now its up to you. BIG HUGE HUGS. You can do this. Anyone who works for the DWP must be a strong warrior lol. xxxxxxxxxxxxxxx

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I am sorry that life is so difficult for you just now.

Someone suggested that you review your working life: I agree. If your financial circumstances permit of it, I would seriously consider whether the energy you are expending on doing a job you don’t even like is worth the effort. No one can afford to give up work any more than they can afford to have MS - I know that! But if IHR is a possibility, then please do think about it - a bit of time and breathing space can be such a blessing and open up new ways of making a good life. My apologies if you do not have the good fortune of the IHR option.

Alison

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Hello my Tingly friend

Oh poor you, this shitty disease is enough to cause anyone to want life over and done with. But think of all the pain and sorrow you’d leave behind you. Your mother would be devastated. It is often hard to talk about how badly one’s child has been disabled but I’m sure she loves you and would be heartbroken to know just how bad you feel. Maybe as CC said, try talking to her. Tell her how you feel. Ask for her help.

It does seem that you’ve had a terrible time of it, and really so young. Your partner needs a good slap if you ask me. No, we don’t look the same as we did, we do have undignified and unattractive parts of us, but we are still the same people underneath the disability. You deserve someone who treasures you for who you are, not for how sexy you look. And waiting for him to leave you isn’t perhaps the most empowering feeling. Neither is feeling that he’s only with you out of pity. Why wait for him to leave you? Ask him to leave, if he doesn’t love you as you deserve to be loved, then as some irritating people from the US might say, ‘kick him to the curb girlfriend!’

The suggestions that have been given to you above are all good ones. Perhaps you need to concentrate on getting your life back, and some happiness into that life. Believe me, it is possible. Making new friends is possible even after MS has taken so much away from you.

Struggling to continue working isn’t easy, and if your employer isn’t supporting you (why is that no surprise?) then perhaps you need to get some help from your union to work out how you can improve things. Equally, contacting PALS is a good idea, you do seem to have been poorly served by the NHS. Waiting 10 months for an appointment that should have been 4 months is crap. And having no MRI for 4 years isn’t on either. As someone said, where is your MS nurse? S/he should be on your side and fighting for you. Equally, OT and physio might help.

If you’re doing ISC and using Peristeen, but still having continence problems, then maybe you need a referral to a urologist, perhaps Botox for the bladder would help? Diving headfirst into a bottle of pills isn’t really a solution. What if you get it wrong and end up in a worse state than you are now? Or banged up in a psychiatric hospital? Talking to your GP might not be the easiest thing to do, but it’s a start to perhaps get some counselling, maybe antidepressants, maybe more concrete help.

You know you are one of the MS family on here, and if your ‘real life’ friends have vanished, then you have a whole lot of ‘virtual’ friends here. We will always be here to talk to, listen to you, support and comfort you when life is treating you abysmally. We’ll be here to sometimes make you smile or even laugh at times.

Keep talking to us. We’ll always listen.

Sue

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From your post I get the sense that you feel very much alone. What you need is someone to support you at this time.

Is there anyone - friend, relative, colleague, neighbour who you could ask directly for support because you are going through a rough patch? Go through these people in your mind and there will be someone who will help - may well be someone who themselves have had has a rough time in the past.

Just ask them to come round for a coffee.

And I may have got this wrong but if you give people the impression you are strong and coping you’ll put them off.

Afternoon Tingly, theres so much good advice here! These guys are now part of my family and really helping me to get through my low time! I hope you can take a small piece from everyone ‘s posts and get yourself back on track. My thoughts and best wishes are with you

jim

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Hi Tingly, how are you doing? (Be honest!)

Dan

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hi tingly badger as Dan said, please let us know if you are ok. some people’s posts really get to you and leaves us concerned. we are all concerned about your well being because we care about you. carole x

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I get PIP. I’m sorry to break it to you but everyone is getting kicked off ESA now and being forced to claim Universal Credit. There are no extra premiums like you get for Support Group. I know all there is to know about benefits, I’ve worked for the DWP for nearly a decade. This government are bastards and they will ruin us all. I had to fight for months to get PIP. I can’t afford to live on benefits. I won’t get ESA - those benefits are gone. If you’re getting ESA cling onto it as long as possible as they want you off and they want to cut your money.

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I’m doing a degree with open university right now but am finding it very difficult. I started before diagnosis and have had a five-year break but really need to crack on now. I originally started to get a better job but now I need to prove to myself that I can do something. I took anti depressants for four years. I stopped in September. I wanted to deal with this without them, and I wanted some sex drive back. It’s nice to have it back but clearly I can’t cope.

He’s not my husband. We’ve been together nearly six years and he never wanted to get married. He never wanted kids either thank god, I just couldn’t cope. My mother lives an hour and a half away. She has two dogs and despite at least 4 people offering to look after them, she refuses to leave them. The driving distance is another excuse. Even though I suffer from oscillopsia occasionally and fatigue, I’m expected to do the drive. We have a very superficial relationship - we talk about crap like the weather. Never MS. I begged her to come to appointments with me and she refused repeatedly. After about the fifth time I stopped asking - it hurt too much to be let down. I’ve never needed her more and she’s never been more distant. I was on anti depressants for four years. I stopped in September as I thought I could deal with it. I also wanted my sex drive back; I wanted to be a better girlfriend. Do you think a catheter bag looks sexier than a nappy? I pay to see a counsellor and have been since September. Is it helping? I don’t think so.If it did I wouldn’t feel like this.

What’s IHR? I don’t think I can afford to give up work. Our rent is quite high - we moved to a lovely bungalow a couple of years ago. Love it being flat! Stuck in the rental trap forever now. We’re both in our thirties but have never been able to save for a deposit because of our rent.

You made me smile :slight_smile: I don’t want to leave my partner, I love him dearly, and we have a lovely home and our pet rats are great. I think he struggles with my illness and has never been good at communicating. It’s not like he’s just shut down since I got ill - he’s always been this way. He hellos me enormously. He’s a man of action not words. But I need reassurance! I’m going beck on anti depressants I think. Can’t live like this. I want to finish my degree and feel like I can do something. I think I’m stronger than I feel. It’s so hard doing it alone though.

I kind of think fake it till you make it on being strong?

Hi everyone Thank you so so much. I feel more supported than I have in a very long time. I’m ok, made a doctor’s appointment and will talk about going back on anti depressants. It’s New Year’s Eve. 2019 will be a good year. Loss of love. Jen xx

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Jen - whilst Tingly Badger is indeed a great name, Jen is pretty cool too.

I can offer no advice or pearls of wisdom that have not been shared already . I just wish you all the best and hope that things get better for you quickly.You are not alone.

Mick