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Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.
Most Liked Content
Posted Larisa on 15 December 2012 - 09:46 PM
So finally you call an electrician and he discovers that mice have gotten in you your walls and chewed at all the wiring; little bites here and there. Some wires were completely bitten through leading to this or that outlet to be completely useless. Other wires just had little bites leading to intermittent usage, sometimes they work and sometimes they don’t. And other wires were not affected at all.
So you call an exterminator and he gets rid of the mice and then you have the electrician rewire your home and everything is good and working again.
With MS the house is your body and the electrical wires are the nerves that go from your brain to the various parts of your body and the mice are your immune system.
There are drugs that can help stop the immune system from attacking the nerves and causing MORE damage, but whatever damage is done, you have to learn to live with. There is no way to rewire the system.
We have to have patience for people living with MS, because they are never quite sure when the outlets (arms, legs, eyes, ears etc) are going to work properly and when they are not. Imagine for a moment living in a house and never knowing for sure which electrical outlets worked and which did not. Imagine having the television quit or get messed up in the middle of your favorite show, or all the lights flicker or go out for no apparent reason. Imagine the frustration of knowing there is no cure, no rewiring, and no way of knowing when things will work properly and when they will not. Imagine the house looks fine, perfectly normal. Every individual outlet functions perfectly on its own and if there were a way to rewire them they would be perfectly normal. But there is no way to rewire them and they are stuck living in this home, their bodies, with all the broken wires, hoping and praying that no further damage will be done
Posted lala on 04 December 2014 - 04:43 PM
Good news! He said as I sat at his desk,
It's not the tumour we feared, but MS instead.
My mind starts racing, filling with dread,
He carried on talking, barely pausing for breath.
It's a chronic neurological condition, and as yet there is no cure,
All I could think of was to run for the door.
Student doctors sat across the room,
nodding and smiling as my world went ka-boom.
This can't be right, it's not happening to me,
I'm in a bad dream - it cannot be.
Thoughts turn to my children so little and new,
What will happen if I don't pull through?
It's not going to kill you he says with a smile,
But coming to terms with it may take you a while.
There are plenty of treatments that you can try,
I turn to my husband - he has tears in his eyes.
He keeps saying words, words I can't hear,
There's too much to take in and I'm so full of fear.
We give him our thanks and head for home,
but feel I'm stepping off the edge into the unknown.
The journey takes a lifetime and words come slow,
How can you process what you don't want to know?
We arrive home to a houseful of people,
'How did it go, what did he say, has the tumour gone away?'
It's not a tumour I say with a cheer....
And I watch their relief turn to fear.
The questions come with quick succession,
Each answer I give seems to feed the depression.
It takes a long time to get my head straight,
I'm angry and scared and in a bit of a state.
Slowly slowly life gets back on track,
Just in time for another attack.
It's a fairground ride of ups and downs,
Hospital visits and stumbling around.
A couple of years in and things aren't great,
But I'm learning to live with what's on my plate.
It's uncomfortable living with multiple sclerosis,
No one can give you a proper prognosis.
I try to take each day as it comes, and as far as possible, to try and have fun.
There will be plenty of hardships to come, but I'm concentrating on being a mum.
So now I make a vow to carry on as long as I'm able,
It is after all just another label.
Posted kizzy on 18 June 2014 - 10:19 AM
Posted Stumbler on 31 January 2013 - 01:44 PM
And, here's my follow up question :-
I read with interest your response to the constituent, who was concerned about the PIP/DLA re-assessment for people with MS.
Primarily, I agree that all disability benefits need to be reassessed, as there does seem to be some questionable situations. An across-the-board reassessment is the only equitable way forward.
But, as an MS sufferer myself, I have heard horror stories of ESA re-assessments, where a 12 month decision on MS sufferers has been made. Now, MS is incurable and, with the present budgetary deficit, will stay that way for some considerable time.
So, if ATOS believe MS will improve, or be cured in 12 months, what hope do we have for a reasonable re-assessment for PIP awards?
It's good to hear that assessors "will be required to have a broad training in disability analysis as well as access to information on specific impairments and conditions". I would suggest that this an absolute minimum requirement and appears to have been lacking in some ESA re-assessments. Having the right people in the right places in private contracts is always a challenge. Look at G4S and the Olympics!
You should be aware that stress is a major contributory factor in the progression of MS. This impending DLA/PIP situation, following on from the ESA re-assessments, is already negatively affecting MS sufferers, making their lives even more challenging.
I'd really like some categoric assurances that myself and my fellow MS sufferers will be dealt with professionally, courteously and compassionately. We have enough on our plates already!
I can't wait for the reply.
Posted Stumbler on 13 June 2014 - 01:06 PM
A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they'd be asked the "half empty or half full" question. Instead, with a smile on her face, she enquired: "How heavy is this glass of water?"
Answers called out ranged from 8 oz. to 20 oz.
She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, it's not a problem. If I hold it for an hour, I'll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn't change, but the longer I hold it, the heavier it becomes."
She continued, "The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed – incapable of doing anything."
Remember to put the glass down."
Posted Scully on 07 June 2014 - 03:58 PM
For those of you who already know me......I've not changed much, just six months of being ill.....major surgery, broken arm, chest infection, UTI.......on and on it went...
For those of you who are wondering who this mad person is.......I'm a moderator, who watches over everyone, offering advice and keeping everyone in line....sort of.
Anyways, here I am. I probably won't go back and reply to the dozens of posts I've missed bit will reply as and when newish topics arrive..
Love and stuff
Posted cazza on 28 July 2014 - 11:00 AM
Only used it for half an hour and started to feel sick.
It's great though. It does everything-
Kit-Kats, Mars bars, Snickers, Crisps, the lot.
Posted Marina on 16 July 2014 - 12:06 AM
If it weren't for all the many members who've joined over the years, we wouldn't still be here.
Many huge thanks to you all!
Posted Marina on 20 June 2014 - 05:02 PM
WINDOWS: Sorry, the password must be more than 8 characters.
USER: boiled cabbage
WINDOWS: Sorry, the password must contain 1 numerical character.
USER: 1 boiled cabbage
WINDOWS: Sorry, the password cannot have blank spaces.
WINDOWS: Sorry, the password must contain at least one upper case character.
WINDOWS: Sorry, the password cannot use more than one upper case character consecutively.
WINDOWS: Sorry, the password cannot contain punctuation.
WINDOWS: Sorry, that password is already in use.
Posted Marina on 19 March 2014 - 05:57 PM
Open your refrigerator door and insert one breast in door. Shut the door as hard as possible and lean on the door for good measure. Hold that position for five seconds. Repeat again in case the first time wasn't effective enough..
Visit your garage at 3 am when the temperature of the cement floor is just perfect.Take off all your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat with the other breast.
Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Press the bookends against one of your breasts. Smash the bookends together as hard as you can. Set up an appointment with the stranger to meet next year and do it again.
YOU ARE TOTALLY PREPARED!
Posted woblyboy on 02 January 2014 - 01:53 PM
The father, surprised, answers, "Well, son, there are three kinds of boobs. In her 20s, a woman's boobs are like melons, round and firm. In her 30s to 40s they are like pears, still nice but hanging a bit. After 50, they are like onions."
"Yes, you see them and they make you cry."
This infuriated his wife and daughter, so the daughter asked, "Mum, how many kinds of "willies" are there?"
The mother, surprised, smiles and answers, "Well, dear, a man goes through three phases. In his 20s, his willy is like an oak tree, mighty and hard. In his 30s and 40s, it is like a birch, flexible but reliable." After his 50s, it is like a Christmas tree."
"A Christmas tree?"
"Yes. The tree is dead, and the balls are just for decoration."
Posted Mal on 12 September 2013 - 01:24 PM
Posted Marina on 19 October 2007 - 09:44 PM
How We With MS Feel...
When We Say We Can't do Something Because We don't Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below...
- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of Novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.
- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
- Tingling: Stick your finger in an electrical socket - preferably wet.
- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?
- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.
- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one... Bzzzzzzzzzzzzzzzzzz
- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
- Urgently Needing to Pee: We put a .5 litre remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet... Get a very large tattoo in your most sensitive area.
- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the same at all.
- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
- Bowel Problems: Take a 4 day dose of an anti-diarrhoea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appear.
- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead... optional of course.
- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms..... hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.
- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.
- Swallowing: Try swallowing the hottest chilli pepper you can find.
- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counselling is the answer.
This was sent around as "author unknown" but if anybody knows and can prove who the author is, we would welcome giving them credit.
Posted PaulX on 17 August 2014 - 12:29 PM
There seems to be a bit of a thing going on on Facebook regarding open and closed groups. I know the MS Trust group seems to be suffering an exodus due to it being open and comments can be seen by everyone.
This seems to be upsetting peoples family members who are too sensitive to deal with the reality of MS. Poor lambs.
My initial reaction would be tough t*tt*e, but actually thinking about it, my wife has mentioned that she has seen my comments, so I guess those lucky enough to have been befriended by me will have as well.
It got me thinking, not one of my so call friends have ever mentioned MS to me, so to honest it is s*d all (being polite here) to do with them.
As an aside, these so called friends are being moved towards the door, ready to be pushed out. And unlike Stumbler, there is no parachute to rescue them.
FB is good for getting to more people then a forum ever could, there is potentially a price to pay.
I think it is time to say good bye to the Trusts open group and also the Society's open page.
Luckily the Society has a local group for my area, which is actually very good. The Trust needs to reflect on this as well.
I think the point I am meandering too, is that whereas it would be good for the world to be aware of MS and how rubbish it can be, the fine detail and discussion is best carried out between those that really understand.
Having said that, how closed is a closed group? It is not like you have to show proof of diagnosis to get in.
I think it is time to assess where I have an online presence and perhaps trim a few back.
The fact that this mini rant has been conducted here means this is my home base, everywhere else is just icing on the cake.
I hope you are all well.
I have been very erratic with my presence, but I do have MS don't you know.
Posted Stumbler on 01 August 2014 - 01:17 PM
Two men, both seriously ill, occupied the same hospital room.
One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs.
His bed was next to the room's only window.
The other man had to spend all his time flat on his back.
The men talked for hours on end.
They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation..
Every afternoon, when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.
The man in the other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and colour of the world outside.
The window overlooked a park with a lovely lake.
Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every colour and a fine view of the city skyline could be seen in the distance.
As the man by the window described all this in exquisite details, the man on the other side of the room would close his eyes and imagine this picturesque scene.
One warm afternoon, the man by the window described a parade passing by.
Although the other man could not hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words.
Days, weeks and months passed.
One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep.
She was saddened and called the hospital attendants to take the body away.
As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone.
Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside. He strained to slowly turn to look out the window besides the bed.
It faced a blank wall.
The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window.
The nurse responded that the man was blind and could not even see the wall.
She said, 'Perhaps he just wanted to encourage you.'
There is tremendous happiness in making others happy, despite our own situations.
PS Yes, this had me in tears too. But, I've just returned home from my son's wedding, so I'm all over the place emotionally!
Posted Stumbler on 27 July 2014 - 05:40 PM
But, MS can be seen as the invisible condition too. There are a lot of us that show no visible signs of being "less enabled", yet we have a condition that can render us incapable at any time that fatigue wants to kick in.
What I am saying is that the "guy across the road" may be carrying a condition which is not visible. He may take the dog out for a walk, but he may finish his walk and then be completely disabled for the rest of the day.
Try not to jump to conclusions as there may be a hidden truth which makes the situation understandable. But, and it's a big but, if he is a scumbag scrounger, he wouldn't welcome your sudden interest in him!
The Government need to reassess everybody as it's the only fair way forward. All I ask them to do is to go easy on anyone who has irrefutable medical proof of an incurable degenerative condition.
Posted ChrisG46 on 17 April 2014 - 09:46 AM
Posted Marina on 10 December 2013 - 11:48 AM
Once upon a time, we filtered out "wank", except it would then filter out the following: S****k - when people were trying to talk about the "Swank diet" I could filter it out again, but I can't be arsed...
Posted woblyboy on 10 December 2013 - 05:46 AM
(_!_) regular arse
(__!__) fat arse
(!) tight arse
(_*_) sore arse
(_o_) well used arse
(_e=mc2_) smart arse
And my favourite for those you want to really tell it to:
(_x_) kiss my arse
Posted PuddleDuck on 22 June 2015 - 08:57 PM
Just wanted to thank you all for giving me the courage to see a second neurologist. After putting it off for a while today was the day and I saw a lovely lady who...
1) Didn't dismiss how I felt but explained that the tests they have are quite crude so what they can measure doesn't always correlate with what we experience
2) Explained that my on-going visual problems will be because not all the nerves recovered from the optic neuritis and the issues with my hands are probably due to either fatigue or clenching at night - which was already suggested to me on here :-)
3) Discussed the options available for managing / treatment - in the end we agreed the same as my original neuro but she explained why that seems best and made me a part of the decision making process
4) Arranged some follow up and has referred me on to a local MS nurse ;-)
Good result and great to feel I have a port of call if it's needed ;-) Progress has been made!
Hope everyone else is having a good day too,
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