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I m really struggling

Diagnosed 10 years ago.I am now 56 but think I have had it since my teens. Try to keep fit and excercises as much as I can but it’s getting so hard. My walking and balance is getting worse and I constantly have pain in my hips and legs from poor gait.

I work full time which is ok unless I have to go ok on site visits which is getting harder. I have told my boss but I don’t think he really understands.

I feel embarrassed about my walking and very frightened about the future trapped in a body that doesn’t work properly.

Got no support from anyone. My partners thinks he’s supportive but gets fed up with me talking about it. My doctor is useless the MS nurse impossible to contact.given up leaving messages as nobody ever calls back. Can’t see the consultant unless the doctor refers me. Last time I saw him was a complete waste of time anyway. Never been offered any treatment.

So as you can see Iife is so bad for me right now. I don’t want to do anything or see anyone. Feel trapped in a useless body and there is nothing I can do.

Does anyone else feel like this and how do you get through it?

Go back to the GP and tell him all this and refuse to leave till he/she gets you a counselling referral. You sound as if you need emotional support. Keep banging on at the MS nurse till you do get a reply.

Your OH, well you need to tell him exactly how you feel, what worries you, your fears. But also he needs to express his worries. Often partners secretly worry but don’t want to say anything.

As for your job, well again, a sit down with the boss and explain that you cannot do part of the job. MAKE him understand!

Browse publications on this website - there are downloadable leaflets on fatigue, to help families and various other subjects.

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All of the above, especially the MS nurse taking for ever to reply to my messages.

I sometimes feel IF I get the chance to talk to the MS team in person that they are bored of listening to the same thing day in day out from people with MS.

Even the consultant just seems to sit there smiling and agreeing with me without actually offering anything positive.

My wife has been a tower of strength and will help in every way, but I can see lately as things have progressed and I’m constantly talking about the MS that she is getting fed up of hearing me talk about it, well moan about things is a more appropriate word.

The problem we all have is that MS is with us every day from the time we wake up, every step we take it is all consuming, we cant just switch off from it, at least I cant anyway.

In the 4 years since being diagnosed it has completely and utterly changed not only my life but also my wifes and son’s.

In the early years I could almost get on with everything that I had always done, and I never really let it bother me, in fact after being diagnosed the MS settled down to almost non existent, and it didn’t really have any real impact on my life but over the last 18 months things have gone a little worse, and the last 6 months worse still, so now I’m constantly trying to deal with it physically and mentally.

It’s on my mind every minute of the day, even whilst I’m sitting down trying to relax thoughts are niggling away in my mind.

Unfortunately MS seems to be one of the illness’s that makes you feel your on your own out in the cold with no answers…

I guess there’s plenty of places to go for advice and talk about your problems, but personally, for me anyway, talking and getting stuff off your chest might help in the very very very short term, but as the physical problems of MS are always there these days, I don’t think a “chat” is going to make me feel any better.

You might be different, so councilling may help, I guess it’s down to the individual how they feel about that sort of stuff ?

The only bit of advice I can offer is, your not on your own, what your going through is pretty much “normal” for anyone with MS.

One other thing, if your not happy with your MS team look for a 2nd opinion, you will be surprised how much treatment and support differs here in the UK.

I’m seriously thinking of taking other advice, as my local MS clinic here in Swansea are not what I would expect and are a little too laid back in their support and offer of treatment, especially medication.

I’m always the one chasing them for advice or help but their response is just so slow it takes for ever to get a reply and when it does come it never really offers anything positive to grab on to.

At the moment it’s now taken them over 3 weeks for them to contact my GP to alter a prescription, 3 bloody weeks and still waiting !

It’s things like this that makes having MS worse, if your having a bad time you need a response NOW, not have to wait weeks struggling and getting even more stressed, which is something we really do not need on top of the MS.

Anyway oddly enough I feel a lot better now after getting that off my chest !!!

Hope all goes well for yourself.

PS.

Your employer has a duty of care to accommodate you in your work place or role, it’s the law.

I’ve very recently approached my employer and explained that I’m struggling with my duties due to the MS, within a week they had taken me off shifts, had completely altered my role, and are still altering things to find a suitable role/hours ect.

You can take “disability” leave, which is NOT sick leave, so wont go against your sick record if you need time off.

Theres loads of things your employer can and must do to help.

Work with them, be open and honest, dont struggle it’s not worth it when you dont have to.

I held back telling my employer for over 3 years because I was worried about losing my job, the truth is the opposite, they have been very very good, in fact it was them that told me how they have to act within in the Law.

Try looking at the ACAS web site, or search disability and working rights.

Hi,

I tend to be pragmatic, and avoid the emotional support stuff. I don’t need it. You have a physical challenge to face everyday,

and there are physical solutions out there.

A referral to NHS Wheelchair Services, and the Community Rehab Team (with physio, OT help) might be a way forward.

The OT will discuss other work options, or suggest giving up work and taking up a hobby etc.,. Or it might just be time for a

powerchair if getting from A to B is exhausting.

We all go through stages as the disease progresses - perhaps you have just reached the point where work is hazardous to

your overall well being.

I hope life improves soon.

Fay

Hey Caroline,

Sorry to hear that you are feeling so naff.

There is lots of good info above, I totally understand the “I don’t want to keep banging on about it , but…” We are aware all the time how we feel, we also remember not feeling this way, our friends/family/partners/colleagues are blissfully unaware, the new minefield we have to navigate is trying to be honest without going on and on about it. Personally I never really wanted to talk about it or to be part of a “club” . However when I was in an environment with other people receiving drug treatments we got bored and started to chat. I found it really useful speaking with people who shared some of my experiences, it was also good to hear how others had different issues and how they addressed them. I have learned loads, laughed a lot , and cried a bit too but found it massively useful. That is also how I found this website where there is a wealth of experience and empathy and humour.

I really hope that you feel a lot better soon.

On a more practical level, keeping hammering the door of your MS nurse, become a nuisance to your GP until you get a useful response, and if your neurologist is not providing adequate support, find another, either privately or another NHS practise.

Good luck

Mick

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good advice from the others.

i’d like to add Access to Work who can make a massive difference and provide taxis to and from your workplace.

also find your nearest ms therapy centre as you found talking to others going through the same thing helpful.

it is a cheerful place and the others understand without being depressing.

carole x

I know this might not be the best advice, but the CAB advised me when they saw how bad I was and still working four days a week, to go home, get a sick note. They were quite adamant. They said this is the only way to show an employer how ill you are. My GP took one look at my deteriotation and said you are not going back there for two weeks, then you are not going back again till you have seen me. At some point, an employer should talk to you about sickness and assess your and their needs, but they won’t do this if you just keep going and going. Trouble is, if you are like me and tend to ‘look ok’ everyone thinks you are ok. They don’t see what is happening underneath. When I went to him feeling so ill, I took a full updated list of the symptoms I was having every day, what bad effects they had, how they had changed in six months and the brand new symptoms that had appeared on a 1 - 5 scale. I still write mine down occasionally otherwise again, you just keep going and don’t recognise the changes. So I think you need to be specific and give the GP the whole saga of how blasted dreadful each day is, pain, disability etc. Extend the time of your appointment by keeping talking. Do not leave until you have looked them in the eye and said clearly ‘I really need your help, I need to be able to put some responsibility with the people who have knowledge, so please can you help me?’

So that’s the advice I took, by this time I was hardly able to stand and dragging myself through every day. Don’t know if it helps as we are all individual and at different stages. I am a bit different as I don’t talk about it to anyone. I can’t be arsed, I just wake up every day and tell it to ‘bog off’ (polite). I only ever state my case to the Doctors, specialists and nurses and I present it in a clear manner with evidence and tell them not to give me any b.s. This has worked well so far. Just one nurse at the beginning dismissed me, I walked straight down to PALS and made a personal complaint mentioning discrimination. Now she is the height of politeness and professionalism.

What’s the daftest thing I have seen which makes us all wonder what the hell they are doing? The M.S. clinic some years ago was held near Christmas in the neuro/epilepsy ward. What did they have by the registration desk? A blasted flashing Christmas tree! The mind boggles.

I guess that sometimes it’s easier to write down how you feel rather than actually say it .

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Thank you so much for all of your responses. It does help to have a rant now and again and I will certainly start chasing my GP for a consultant referral for an assessment. Probably won’t see the same one as last time though as he was as someone else said on here, seemed bored with what I had to say and had nothing to offer me.

What is refreshing is that every one of you understand how I am feeling, it definitely helps to know that others understand. Just sorry that there are others going through the same as me!

I guess that the MS nurse is over stretched as most people are in the NHS but you would think that they might pick up messages on the answer phone. I have no confidence at all in the service. I have seen the nurse a couple of times a few years ago and came out wondering why I had gone as we had a nice chat but she didn’t come up with any real solutions.

Has anyone else had physio on the NHS and what was the experience? I am currently paying a lot of money for a private physio which I can’t afford. The pain seems to be caused by tight muscles not sure if its due to the way I walk, spasticity or both.

I really relate to those of you that have said that they are thinking about MS all of the time. It’s hard not to when you are worrying about how you are presented with mobility challenges every time you stand up. Almost forgotten what it feels like to not think about it all of the time. It is hard not to moan to my partner but I try not to as he has other worries to deal with.

Thanks again for your kind words of wisdom.

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Hi Caroline

Physically my situation sounds very similar to yours (I’m 55)

When I can’t sleep, pain/mind wandering over all the “What ifs”

I come downstairs, put something that makes me laugh on the TV

( I’m watching ‘curb your enthusiasm’ box set at the moment)

Fix myself a nice little snack and a cup of tea

I Mentally say F— You MS (and all that goes with with you)

Then I just wait until I am so tired I can no longer hold my head up

I don’t worry about how tired or crap I’m going to feel the next day

Classic example It’s 12.45 and I’ve got to get up at 6

When I’m looking for answers ( what can I do about this/ what can I do about that?) I feel like I’m chasing my tail

Because often, for me at least there aren’t any answers

When it’s the early hours and It’s raining, I especially like it

Because I think ‘well at least I’m not sleeping out in a box tonight’

and that makes me feel all snug and safe and cosy on the couch

MS is horrible isn’t it?

If I could reach over and give you a big hug , I would

Jane

hi - just a reminder that, under the Equality Act 2010, having MS means you are considered to be disabled and so your employer is required to make ‘reasonable adjustments’ - such as not sending you on site visits. Good luck xx