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Am I just lazy?

Am I just lazy or is this all I have in my life?  I was diagnosed Dec. 2010 I was just trying to get used to another nasty thing that life had thrown at me when things changed again.  It was only a few months that I couldn't make myself a hot drink or a sandwich no chance of housework or nipping to the shop I couldn't even walk up the drive to the car.  Seemed like only a few weeks later that I couldn't even walk to the kitchen and get myself a glass of water and a sandwich from fridge that hubby had left me before he went to work.  Now he leaves  a sandwich and a bottle of water in a bag with an ice block for me.  I am so unsteady I've been given a few meds to try and see how I cope.  I hate my life like this, I should be doing more and not leaving it all to hubby.  My MS nurse says everyone if different, my Dr. says I'm like a galloping horse and my Neuro says nothing, just writes notes and  cancels most of my appointents, only seen him twice.  Told I have RRMS which I thought moved slower than this any advice would be very welcome.  I hope this reads okay thank you.

Lost Angel  

Hi Lost Angel,

                     I am so sorry that you feel that you are between a rock and a hard place. I am sure that you are not "lazy" at all, as if anything we people with MS do far more than we need. But don't despair quite yet with your condition, as you are still pretty new to the MS lark and I am sure that your condition will be settling down quite a lot after this initial relapse. Your neurologist sounds about as 'mute' as mine does. MS nurses seem to be far more forthcoming than the neurologists somehow. You shall have to write a list all of the questions you have, and ask her/him these. Stress is never good for MS and you must be under a lot of this while you have so many left unanswered. 

                   Best of luck to you,

                                           Moira

Hi Angel,This sound like an ms attack.I have had ms for 34yrs and mine started as rrms,an attack can vary in the amount of time it takes for the flare upconfusedto die down,try not to worry too much at this point you have to be very patient unfortunatly and rest is the best thing for yousleepingMaybe your OT (if you have one) should be able to get you a walking frame, that will help your balance when you feel strong enough to stand and walk a little.It is important to stand up as often as you can but if you can't then don't get stressed just go with the flow,,,I know this is not easy but rest is your best friend.It's a shame you have a bad neuro but your doc sounds fine.If the flare up goes on too long speak to your doc he may be able to get you an appointment with your neuro or maybe another one who will be more helpful if you can get a good one they are worth their weight in gold.You are fortunate to have a kind hubby that helps you,don't feel guilty askin for help,you are not lazy you did'nt ask for ms! I hope you feel better soonhappy2always here for you like all others on this site you are not alone.take care.helen.x

Lazy just doesn’t come into it.  Lazyness is a choice. You are not CHOOSING to be unable to do things. Nobody would choose to live a restricted life. I think the key is to be kinder to yourself. Set yourself very small goals – or no goals at all if you like. I agree with  tibbey – rest is your best friend.  If you feel that you are not doing anything – you are, you’re resting.  
Resting is my hobby – in fact I could represent GB in 2012 if resting were an Olympic event. I sometimes look back over my day and think that I’ve done nothing but then I remember all the resting I’ve squeezed in.

BTW your husband sounds great – I wish someone would make me a sandwich.

 

Hope you feel better soon.

 

Jane

1 Like

Hi, This is a really hard place to be in and I remember undergoing a similar time and having to have people help me (which is always difficult for and independently minded person).  But with RRMS once it calms down things should improve for you.  I'm now SPMS and a wheelchair user and believe it or not haviving the wheelchair means I can now get around my house and out and about outside.  Before I was falling up to 20 times a day and constantly worried about breaking my hip so those worries have gone (although I've fallen a couple of times when transferring I'm in a much safer place).  Have you got any adaptations in place?  Have you got any help from a carer? 

It is such a difficult disease and I really feel for what you are going through and hope it settles down soon.  You are not lazy so please don't think that way its the disease not you thats causing your problems.  Steroids can help if you can get them or you could ask for DMDs but again these are hard to get.  Unfortunately there is no cure for MS but these things can slow down the progression, but you've got to be able to get them prescribed (I didn't manage this). 

The other things you could consider trying is taking Vit D and ask your doctor for Vit B12 injections as these boost your energy levels. Also consider HBOT (oxygen therapy and LDN) I've tried all these and get some benefit from some of them.  Anything is worth a try.

(((((((BIG HUGS))))) Mary

Hi there,

You are not lazy it is just because of this horrible disease that you can't manage things at the moment. I was diagnosed 15 years ago with RRMS and in the last year or so I have not been able to do as much as I want to. I have a very understanding hubby like you who does loads around the house for me. I often feel guilty watching him but then he knows that If I could do stuff then I would. I agree with the other messages you must rest. I am lucky that I also have a very understanding boss. I work part time and it is a flexible job so I can take time off(without pay) if I need to. Try and keep as stress free as possible, which I know is very difficult  as the symptons can be so stressfull and the unreliability of it all but I know stress for me brings on my symptons more.

Take care

Cathy x

Thank you Moira, Tibbey, Jane, Helen, Sarah, Mary and Cathy for your support it does mean a lot.  Well this week I spent time in A & E as Dr. thought I could have DVT, luckily they said no but I have to see Dr. about the swelling.  I have bought a rollater  after physio told me the ones she had wouldn't help as I was unsteadyconfused I have used it but the odd day I couldn't I sit on it and poor hubby pushes me or pulls.  The MS nurse rang on Friday and we talked again and I asked her how many people she knows after being diagnosed for 2 yrs. is like me, I've been like this about a month after being diagnosed.  She came up with the usual everyone is different.  Well I can agree with that as no-one able bodied or disabled is alike.  I got a phone call from  Drs. and she told me MS nurse had rung and said she was worried about my mood, I'm depressed. Dr. and me thought it odd that she rung someone who I'd never seen but I did get an appointment with a different Dr. any appointments with them are so hard to get.  Neuro shows no interest as this was my first relapse that we know of and everyone seems the same.  How embarrasing does MS nurse think it is when hubby has to take you from room to room, even toilet.  She said tell him to take you out in wheelchair but there is steps up to house.  She said I could use it inside and get hubby to push me around, I can't see much difference, next she told me get a mobility scooter which I have but still got steps.

I'll shut up now sorry this is a real moan, thanks to anyone that gets through it.

Yvonne

 

Can I just throw in a few questions please? (BTW, you are NOT lazy!!!)

  • Have your symptoms gotten worse since the relapse that got you diagnosed?

  • Have you developed any new symptoms in 2011?

  • Can your neuro prescribe DMDs? (Please check if you don’t know!)

  • What help are you getting for your symptoms, e.g. physio, meds?

  • Have you had a new MRI since you were diagnosed?

OK, more than a few, but it strikes me that a certain neuro needs a rocket up his ****! No one who is having as many problems as you should be dismissed by her specialist so easily! First step, get the facts straight and find out if there is anything that you can use to go and bang on some desks.

Karen x

Hi Catriona

I did do pilates years ago and I loved it.  It was doing a one on one but she was looking for a room to take a class, found one at my osteopaths clinic.  She didn't think a class would suit me with my other problems and didn't have time for anymore one on one so we finished our lessons.  Would love to try again.

 

Karen as always great advice which  I will follow,  I have been slowly getting more unsteady since diagnosis in 2010.  MS nurse just says not a relapse just what happens and I have to live with it, don't see neuro until March 2012, he changed my appointment by 8 months.  I will try and get referred to another team, I was diagnosed on basis of MRI scan but as they are all we have at our hospital this may not be easy.  I have only had the first MRI scan and meds are Pregabalin.  Feel like I'm running round in circles and moaning non stop,

Yvonne 

Sounds to me like you need a proper review of your diagnosis and your meds. Being effectively dismissed and abandoned by your MS team is inexcusable.

 

You need to see a neurophysio to help with your walking and balance - they can also report back to your GP or MS nurse about any spasms or spasticity you have so you can get meds for that too if appropriate. If pain is a problem, then you can ask for a referral to a pain clinic. Same goes for incontinence if that is an issue. Counselling can be really brilliant too, so ask for that too if you think it would be beneficial (it was a huge help to me in the early days).

 

The key thing here is asking. These days it seems the only people who get help are the interesting cases and the loud cases!

 

What's your GP like? If he/she is supportive, then go and pour it all out to him/her (make a double appointment if you can 'cos it might take a while!). Tell the GP exactly what you want and ask them to make all the necessary referrals asap. Also ask them to put in the referral letter that they would appreciate the therapist/specialist advising on appropriate medication. That way you can get everything from your GP rather than going through the MS nurse/neuro which tends to take longer. (If your GP cops out, then at least get him/her to write to the MS nurse stating that you would benefit from urgent physio, etc. Then it's on record, and the nurse will be obliged to DO something!)

 

Talk to your GP about a second opinion too if you think you would prefer a different neuro. Seems to me that maybe your RRMS isn't behaving very RRMS-like, but it could be that you simply aren't getting the help you need to get over that nasty relapse. An expert needs to be consulted!

 

I really hope your GP steps up to the mark!

 

Karen x

Hello Yvonne,

                     I am sorry to read that you are still being put through the wringer, and your MS team sound pretty hopeless. For a start you could be helped by you having a ramp to get in and out the house. Your MS nurse (between naps!) should be able to help you out with this. But meanwhile your best bet seems to be to rest. This is our most powerful tool for combating MS. And don't worry too much about your own brand of MS jumping up and down, as certainly initially, my own R&R MS used to fluctuate pretty violently.

                   Best wishes,

                                       Moira

Hi Karen,

I would like to send both nurse and neuro up in a rocket.  Neuro can't prescribe anything I would have to travel further but I would.  I don't know what nurse is doing, nothing at all for me, she's nice enough to talk to but just general things.  My Dr. does try to help but doesn't know much about it, I think he's ready to retire.

Moira,

I've just spent a few thousand for steps that I can  get down if I'm not too bad and I love them.  We just moved to a bungalow and it's cost a fortune.  OT came and said I needed  a shower which I did and that cost a fortune but is nice.  They don't seem to realise that money isn't a bottomless pit and I've been paying for 25 years.

Yvonne

 

Just one question ...

Do you get a copy of the report that your neuro sends to your GP?

Why do I ask?  Because the NHS have said that you should! 
If you do, then this is what you should be discussing with your GP.
So if you follow the advice from rizzo, and get a double appointment - then you can discuss what the neuro has written (or not written).

If you do not, then you can ask your GP if he/she has had a report on you from the neuro.

See where I am going?  Is the neuro following the NHS rules, or not?  If not, you have a perfect reason for asking that the GP refer you to a different neuro.  If the neuro is following the rules, then you have the last report to discuss - and question why nothing is being done.

Geoff

Hi Lost Angel,

                     Please don't cause yourself too much stress thinking about our mutual illness, as MS rarely seems to follow a true course. Don't forget that you are only relatively new to MS and your own condition will be finding its own feet, even if it makes it more difficult for you to find yours! I can well remember too that when I was first diagnosed (in the first two years, say) I seemed to be an ever changing person, and if I had had hindsight then, then I would just have calmed myself down to see what fate had actually plonked on my lap. Chances are that hubby will be going through the same. Best of luck,Moira  

Hi Geoff,

I haven't seen any report or my MRI scan.  He did some blood tests earlier this year for Cryofibrinoganaemia or something like that and haven't had a result for that.

I see my Dr. next week which is a rare thing and I will ask him, last time when I asked about other reports he said he hadn't been sent them my consultant said he had sent them.   I do wonder if the staff don't pass everything on, there is so many of them.

Love Yvonne

Hi Yvonne

If your MRI was done in the same hospital where your neuro is, then:

1 - He should be able to pull the whole thing up onto his computer screen and talk to you about it.

2 - Your GP should be able to access the report on your MRI if not the actual images.

Next, do a quick Google search for "NHS Constitution"
You will have to read through it to find the right clause, but you will find that a consultant (like, say, a neuro) is supposed to send a copy of his report to your GP, to you.  Some hospitals are good. I get a copy of my neurologist's report mailed out on the same day as the one to my GP.  I even get a copy of the report from my MS Nurse.  Some places are not so good.

As you read this Constitution, look out for your rights to see the reports that have been written about you, and indeed, the whole of your medical records.  Some places will try to frighten you off with the cost.  "A copy of the records will cost you £65" is a typical one.  If you read the Constitution, you will see that you can see your records for free if you have been seen  (by anyone) within (I think) 45 days.  Then, you do not want a printed copy - "a simple memory dump onto a memory stick will do, thank you very much".

All you really want to know is whether or not your neuro has written a report.  You could also try asking the relevant PALS service for the hospital.
Your position should be that you have not had a copy of the reports that he has said that have been sent - quoting the Constitution.

Either way, I guess that you need to be referred to a different neuro in a different hospital, and you should raise that possibility with your GP.  If you do, a few minutes with your PC should sort out which other hospitals are nearby, and probably the name of their consultants (you do not want to see the same chap in another place, do you?).

But, above all, do read the NHS Constitution.

Geoff