Forum

Time for a Progressive MS moan!!!

We need to remember to moan out loud, not to let it get pent up. We need to moan more… Other forums have it right
What would we do without a good moan? A bit flippant, why not?
I’m also prone to ramble and waffle BUT they all feel great. I may not be able to move around much without a huge effort but strangely I can moan. I also did not sleep last night for pain and spasms but I’m up and the sun is shinning.
Have a good weekend people and don’t let this hellish disease get you down, we are always here.
Take care, M

I agree it is good to moan. It has taken me an age to get into this new site but here I am. When I was first dx I found coming on here and reading everyones moans helped me understand I was not alone. My moan today is about my local Continence Service, It took me nearly a year of phoning to get them to give me an appointment, I’ve had a visitor for the last two years and she has been a gem.
I asked her on her last visit if I could have the smallest continence pads as my bladder will not behave. She said she could only supply the large pad. Why? The new budget would not allow her to supply them. I feel like swearing but I may get banned,
She also told me she would be retiring and that her replacment has not been advertised for. That does not sound good news either.
As I get older and more disabled I fear for my future, the health service is being squeazed, the result no help for us, after we have paid all that money in. They should repatriate all the ‘free loaders’
Thank you for reading - Wendie x

can i have a moan too then
went from just outside glasgow to edinburgh and stood , glared at everyone but nobody moved, so i went into first class and sat, waiting for conductor but didn’t come, but I was tired and as Clint would say, make my day and make me move, but how selfish people are. I was going for training to the CAB central office, wonder if anyof those sitting on their bums will need out help in the future,

http://www.mssociety.org.uk/forum/posting.php?mode=reply&f=48&t=1569#

Everyone is welcome for a moan, you had plenty to moan about! Ignorance and bad manners are inexcusable.
How did the CAB training go?
Take care, M

the cab training was good the lady that took it was really good at presenting the stuff, When i went back yesterday told them training was good but folk are ignorant, one of my collgues told me that it had happened to her heavily pregnant daughter-in-law, oh well calmed down nowhttp://www.mssociety.org.uk/forum/posting.php?mode=reply&f=48&t=1569#

wendie wrote:
I agree it is good to moan. It has taken me an age to get into this new site but here I am. When I was first dx I found coming on here and reading everyones moans helped me understand I was not alone. My moan today is about my local Continence Service, It took me nearly a year of phoning to get them to give me an appointment, I've had a visitor for the last two years and she has been a gem. I asked her on her last visit if I could have the smallest continence pads as my bladder will not behave. She said she could only supply the large pad. Why? The new budget would not allow her to supply them. I feel like swearing but I may get banned, She also told me she would be retiring and that her replacment has not been advertised for. That does not sound good news either. As I get older and more disabled I fear for my future, the health service is being squeazed, the result no help for us, after we have paid all that money in. They should repatriate all the 'free loaders' Thank you for reading - Wendie x
This sounds awful, where do you live? I was assessed for my inco pads by the district nurse and there was a choice of 3 sizes. It shows that its a postcode lottery for the level of care we receive. I know with the governrnent cuts many health authorities are cutting services but the incontinence nurse is very important. I suppose if you don't have problems you don't think this. take Care.

Lynne xx

Its good to moan! I get the impression that us PPMS’ers are the forgotten few so we might as well moan amongst ourselves at least it might keep us entertained.
The medical establishment’s attitude to us is almost laughable. (If it wasnt so serious)
Cause - “Dont know”
Effects - “Not known vary so much”
Treatment - Blank look.
Is there anything I can do myself, diet, exercise etc. - “Suit yourself”.
I once dared to mention to GP I was feeling a bit fatigued , “Can I stop you there that is an MS issue you need to contact your MS Nurse about that”
Ring MS Nurse, answerphone as usual, Leave your number we will get back to you, anything urgent contact your GP. (what!) I refer you to paragraph above. About a year later I am still waiting for the call.
Luckily the fatigue doesnt seem too bad.
My advice do as much research yourself as you can, Do things that may help and cant do any harm ,good diet as much exercise as possible and avoid stress. Read these forums for other peoples advice and experience of vitamins etc.
Have a nice weekend…

Today I woke up with inside of mouth and lips buzzing and, well not really numb, just not feeling right. Without thinking about it all day but seemed lunch breakfast didn’t taste of much… then lunch the same … then just ate dinner and realised why. Can’t taste a damn thing.

So yes, I’m having a PPMS moan… :cry:

Pat x

Dear Sarah
I think that is the hardest thing to come to terms with, seeing your MS nurse one and see you whenever from your neuro. We are here for you keep as positive as you can, I was told ‘to grin and bear it’. I have a sinus infection at the moment and didn’t sleep much last night (hence my silence for a while) and I’ll be glad when I only have the Progressive MS to deal with!!
We are resilient/brave and special you have to be when you have MS, I must be getting sentimental in my old age.
Take care

wendie wrote:
I agree it is good to moan. It has taken me an age to get into this new site but here I am. When I was first dx I found coming on here and reading everyones moans helped me understand I was not alone. My moan today is about my local Continence Service, It took me nearly a year of phoning to get them to give me an appointment, I've had a visitor for the last two years and she has been a gem. I asked her on her last visit if I could have the smallest continence pads as my bladder will not behave. She said she could only supply the large pad. Why? The new budget would not allow her to supply them. I feel like swearing but I may get banned, She also told me she would be retiring and that her replacment has not been advertised for. That does not sound good news either. As I get older and more disabled I fear for my future, the health service is being squeazed, the result no help for us, after we have paid all that money in. They should repatriate all the 'free loaders' Thank you for reading - Wendie x
I agree with you all the way, Wendie especially the " It has taken me an age to get into this new site". I've'just had a good moan to the MS Soc about this new site. I have enough problems using my computor via an electronic "headmouse" without having to crack the codes of our new enemy! Mike

I have had the same problems on the train.

I used to travel all around the country by train with work and have had a few experiences of the great unwashed and their selfish atittude towards giving up their “disabled seat”.

I once stumbled getting onto a busy tube and not one person offered to help me get up. I was obviously an inconvenience in a rather busy day for them.

I asked an elderly gent if I could sit on the inside disabled seat and after huffing and muttering under his breath he got up and left the carriage. Obviously stumbling around with a walking stick was not a good enough excuse. He was able to leave the carriage unaided unlike myself! (I am only 48)

Hi folks
We have broken the 1000 views barrier, what does this mean? There are a lot of people out there that need to moan about MS - damn right!!!
Take care everyone, M

Well thought I’d come back and have a look around now that everything seem’s sorted.

Just had a look at a few of the posts in EL, and I’m gonna have a moan, it’s not about MS as I moan too much about that to my better half already, so would just like to ask…

Is it only me that gets fed up with seeing all the ‘quote’s’ when replying to someone’s post, I get really confused with them all.

I much preferred it when you could answer the poster directly by clicking on his/her post. Maybe it’s just me and I should try to get use to this new format.

Anyway just uploaded my avatar so lets see if it’s worked

Jacky x

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hellohow is ever one get on  just come out of a bad relapse was on steroids 500g for 5 days. still wait to see if ever thing will get back to what it was fingers cross.oh well not that bad been in bed. its rain all night and the who day.  Thad's all its dune through the hole b summer. so that's my moan by with. jxx

Sorry to quote you Jackie but I’m glad that something fairly minor like that irritates you as I have an irrational gripe. The one thing I haven’t missed while this site was down is the inane “the bar is now open…” I have read the comments once or twice and thought “pointless or what?”

“Oh, make mine a …”

Maybe it’s just me being a party pooper. I see it’s back…

Likewise trying the avatar and also seeing if new engine works with speech recognition. (Not too bad incidentally)

Hi Oscar,

I used to take the bus to get to work last year once I had realized that with car sickness and dizziness it was dangerous to continue driving. The bus was often full although most of the time people gave up their seat for me. I tried to get off the bus at my stop one day ,which is just outside my house, and the bus driver impatiently close the door on me and drove off pushing me out of the bus on my head. I suffered cuts and bruises and three slipped discs. I stopped taking public transport after that and so had to give up my job. All people need is tiny bit more patience. Now I don’t work and when out and about am in a wheelchair with my husband. If only people would realise what a big effect their selfishness can have on us.

Ciao

Lucy

I quite agree with your comment Lucy about "if only people would realise what a big effect their selfishness can have on us"

I was on a bus with a friend a short time ago & we pushed the bell to get off & my friend stood up by the doors. The driver stopped at the bus stop, but didn't open the doors & then continued to drive on. My friend went down to him, but he just smiled & lightheartedly said 'sorry' & continued on to the next stop.  We therefore had to walk back. It was up an incline too, which didn't help. I found it really hard & halfway had to sit down on someone's wall to rest. By the time I got home I was weepy with fatigue.  If only they would realise ....!

I would have thought 'though Lucy that with injuries as bad as yours you should have complained to the bus company & they should have looked into it.

Do hope you're coping ........

Bren

Thanks everyone for your concern.

I did try and I managed to get an apology from that bus driver but no money. I live in Italy so compensation could take ten years and cost you more than you get not to mention the entire forests you have to kill for the paperwork. When I was diagnosed I had to do more running around, meetings and form filling to get recogmition from commissions for disability parking or anything at all that might help my situation. Here you do anything to avoid more form filling because it will never end. I know that you will get everything you're entitled to if you are persistent enough but I just don't have the energy any more.

I depend on my husband and friends for everything these days so I am more protected and shielded. I saw two torurists one of whom was wheelchair bound yesterday and they had to wait for three buses because the hydraulic lift didn't work on the first two. They were good humoured about it but they're on holidays. You never see Italian disabled people on the streets because they are not wheelchair friendly. The cobblestone streets alone make you want to leave, both for you and the person who has to push you. Steps up to shops everywhere, but the best one was a disabled bathroom down a flight of twenty two steps.(my husband counted them)

You have to depend on the kindness of strangers when you're out and about and although most people are decent and kind, it can often depend on time of day and the mood of the crowd, for e.g. rush hour or rainy days used to cause a severe lack of patience.

Even my physiotherapist used to expect me to come to her office which involved a bus ride and arriving at 8 am, then doing physio for two hours then a bus ride home. (She asked me once why I was tired).

I used to be almost militant about respecting disabled rights because my brother is also disabled (cp) but now that it's me I don't have the strength to fight this kind of thing anymore, I just want to stay at home and be left in peace. I'm content with the little things now and I still think my life is good. I just try to stay away from things outside which will aggravate me because although the occasional moan is good I can get really angry and stressed about this kind of thing and so I try to let it not get to me too much. I will say in favour of Italy that the doctors and hospitals are great!

Anyway thanks for your comments Sarah and Bren

Ciao

Lucy

 

 

Hi Sarah,

I've been living here for 16 years now and so I guess I know it better than the Uk or anywhere else. I've never been to hospital in the Uk but the Nhs and general GP service is something I remember as being very good. When I was first dx I didn't realise that other people had to wait such a long time because it took only 10 days to get a certain dx. I had four attending nerologists which is probably why. I thought things went downhill after that because although I saw my neurologist every three months he never seemed to be able to do anything at all. Of course I now realise that there's no need to see him so often ( although he set the frequency of the appointments) but ppms is a bit unusual here so I'm kind of a learning experience for them so I get more attention.The fact that there's no help and no cure was a blow but I'm used to it now. I would say the hospital is good and the doctors are in general good but after sale service is dreadful. Social assistance, physio, occupational therapist or anything else you can forget it because you're on your own(unless of course you have pots of money) Getting disabled equipment, like wheelchair or disabled shower fitted or handles or domestic help is all paid and I can't afford it although I bought the wheelchair. I hear people complain all the time about nhs and other things there but I'm quite jealous sometimes. I can't even imagine being able to convince anyone to come to my house to help me out or give me physio or anything else. So I have to say that it's a wonderful country to visit and live in for a while if you're healthy but now I'm not so sure it's the best place to be.I suppose it doesn't matter where you live, you will find somewhere else where the grass is greener but I suppose the real problem is that I'd happily move if I could leave the ms here. Everything gets coloured by this disease and maybe I still love it here, I just don't love having ms and I would be the same anywhere. Anyway I only meant to answer your question and off I went waffling again. I really must try and get some control over the length of my posts.

Take it easy,

Lucy

My moan is why is it when I am in the supermarket in my wheelchair people head straight in front of me or they stand so close to the back of the wheelchair I have to wait for them to move before I can manouvre the wheelchair,  I sometimes feel I am invisible.