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Happy Clappy

Hi Everybody,

hope you are all not too bad today. Does anybody else out there think we are often too positive in how we present the reality of MS, especially here on the MS website and in the media in general. This site is full of photos of happy smiling faces. HSCT has cured MS, job done, game over, no need to donate to that MS thing anymore.

My partner has PPMS and could walk 5 years ago now she’s in a wheelchair, HSCT does nothing for that, Ocrevus is no good for that, there are no DMTs and no prospect of any in the foreseeable future, she has a very grim time of it I can assure you. Definitely not much to smile about.

So lets have a bit more reality and a bit less happy clappy. No doubt I’ll be trolled for this.

Thanks,

Dave.

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hi dave

i remember when i was awaiting diagnosis and terrified of what the future could hold for me.

coming to this site and reading the honest truth from people who know was a huge help.

if they had air-brushed their accounts then i’m truly grateful.

to read that they still managed to be happy whenever possible inspired me.

sometimes i post what some would say are sickeningly positive messages - sorry for that!

occasionally when i’m feeling particularly grim and need to unload, i’m grateful for having somewhere to do this.

that is what my ms does to me, swinging from grim as **** to sickeningly positive.

that’s a fair account of my ms.

happy and sad.

i wish your partner moments of respite from the grim reality.

and the same for you.

carole x

Hello Dave.

I was diagnosed three years ago out of the blue, aged 55. No real symptoms. No warning. Three episodes of partial paralysis in as many days saw me unable to get up, sit up, grip anything. Ambulance, A&E, all sorts of tests and MRI, ward admission Saturday. Monday morning I was given the news that I had MS.

The first year I was in denial. I made a great recovery and was back to normal. So I had MS! It made no difference to me! I could still walk albeit a bit gammy. I could still drive, climb a stairs, walk in the sea, splashing my grandchildren, do real physical work in my garden, go up the steps of the plane on my frequent “solo adventures” abroad.

However the second year saw gradual changes. I was falling a lot so began using a wheeled walker, when the crutch wasn’t enough. . Tears and tantrums were frequent. Still are. I would swear like a Trouper and started to become cynical, angry and bitter. I was no longer a pleasant person to be around. My husband, who is now my registered Carer, should be canonised as he truly has the patience of a Saint. I still cry sometimes when he bends down and puts my socks and shoes on, or sometimes has to haul me up from a chair when I can’t get up.

My third year, and now I can only shuffle indoors with the walker. I need a wheelchair for anything else. We have a manual one for going on holiday. I use the motorised one for outdoor use. I can no longer drive. We live down a lane, with an acre of garden, in a rural area in South West Ireland. Our retirement dream. The goal we had worked so hard for. I still feel cheated, angry, but not as often. More sad now. Sad for what I’ve lost, for what I can/will never do again. My right hand has weakened so I struggle to butter bread, cut, slice, chop… pull up my pants in the bathroom. I still have tearful days. I expect I always will.

I was a strong, confident, feisty, outgoing, witty, independent woman, who feared nothing and was capable of any undertaking. Where has she gone? I miss her and want her back!..but she’s gone and she ain’t comin’ back. I try to look for the positives here. There are some! I am grateful I can manage in the bathroom and can still pee and poo independently. I try to be grateful I am still upright and can shuffle. Grateful I can still manage a shower, just about. Grateful I can sit my bum on the passenger seat of the car (while hubby lifts my legs in) and be taken out somewhere. Grateful I can still manage to put a meal together. Grateful I can still go on holiday abroad, with the help of Airport Assistance and hubby. Diagnosed with stage 3 breast cancer before christmas and had successful surgery and treatment, I am grateful I’m still here I suppose. Happy Clappy? Definitely not.

Having MS is sh!!t Dave, make no mistake about that. It’s like a thief in the night. It steals in and takes without asking. When you think you have accepted that, it comes back and steals some more. The next person who ever says to me, “We have MS, but MS doesn’t have me”, is going to get a quick smack in the mouth!! It’s here to stay, and doesn’t intend to leave anytime soon, like an un welcome, un invited stranger. Do keep the communication between you and your partner open. That is crucial to try to understand each other’s feelings. So no, no Happy Clappy days from me!

From my own experience, the sooner acceptance is reached, the nicer life becomes. This is a great place for venting/crying, griping and even sharing a little fun. Some days are better than others. Do remember that. I say I have bad days and not-so-bad days, then I have F**k Off days! I give fair warning and tell people in a soft growl, I’m feeling “fragile” today and just don’t want to communicate. And that’s okay too…

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I think in the main Dave, we are honest about MS.

Personally I think that it’s sh*t having MS. I’m a full time wheelchair user, despite having been in the RR/SP group rather than PP. I’ve got serious bladder and bowel issues. I had a colostomy last year and am waiting for a date for my Mitroffanoff operation (which is quite a heavy duty method of sorting out the bladder). I have sometimes pretty bad cognitive issues, my hands don’t work right and I have a lot of problems.

But at the same time, I am fairly positive when writing to the newly diagnosed and the scared stupid undiagnosed. Because they do mostly have the option of DMDs. And many, if not most, newly diagnosed RRMSers will have years and years of relapse free life ahead of them. I want them to have a positive outlook.

Even those who are diagnosed with PPMS, they aren’t always going to have a fast track to serious disability. There’s no point in frightening people with how bad it can be. They might not have to face that.

It’s not being happy-clappy, it’s just honest. And if we can have a laugh with each other whilst living with serious disability, then why the hell not. There’s plenty we can’t do, our legs, hands, bowels, bladders, brains don’t work right, but we are still the same people we were before life turned to sh*t.

Maybe more happy-crappy than happy clappy.

Sue

2 Likes

Hi Dave, so we should be honest on here, life with any disability, never mind MS, is bad, we have to live our life’s with all that this disability gives us, surely we should/can escape it all, live as before, even for a wee while, nobody loves a moaner, everybody has problems, big or small, they don’t want to hear others successes all the time but equally they don’t want to hear, my MS is worse than you MS, accept life as now, enjoy whatever comes, someone is always worse off than you, Brian

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Hello Dave. How are you and your partner doing today? I know many people suffer with the heat and sunshine, but I find it a huge lift, mentally anyway. I know it changes nothing.

The thing about MS is that there will always be some people running the London Marathon, some people communicating using only their eyebrows, and absolutely everything in between. The MS Church is broad, and there will always be plenty of people whose situation will resonate and plenty of people whose situation will annoy, exasperate or terrify. It’s the nature of the MS beast, I’m afraid.

When I’m in a good mood, the London Marathon runners cheer me up. When I’m in a bad one, they piss me off. Likewise, the communicating-by-eyebrow brigade either inspire or scare me shitless depending on mood (mine, not theirs). In all cases, my response is driven more by my mood then their situation.

Alison

Hi was diagnosed with ms in December; had optic neuritis 10 years ago but it wasn’t picked up then. Had constant burning pain in arms and legs, gp eventually sent me to neurologist for a mri scan. While waiting for results one side of my face went numb. MRI came back that I had ms, several lesions in brain one of which is in the cerebellum. I have started taking Tecfidera, am still in constant pain and unsteady on feet, also getting very forgetful, no energy whatsoever! GP has now started me on Gabapentin for pain 600 mg a day, going to gradually up it. Is it normal to have pain all the time or is it a relapse? Seems like I’m on a rollercoaster at times, not sure what to expect.