I got diagnosed 5 years ago and really thought i’d have accepted it by now. I still hate how bloody hard everything is. Everyone I fall, stumble, can’t get out the bath, can’t think clearly, can’t walk to the shop, wet myself, or generally can’t do anything I used to, I get so angry and frustrated. I hate this illness with every fibre of my being. I think I’ve got a handle on it, then something else happens. I’ve gone downhill quite fast. Every relapse leaves me worse off. How the hell am I meant to go on? Why even bother? It’s so hard. People keep telling me I’m strong and I’ll be ok but what the hell do they know? Their legs / bladder / eyes / bowels etc all work fine. They don’t get it.
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Hi,
You are so right. MS is an “invisible disease”. Nobody can see how tired we get, the weakness in our legs, the bladder which just lets go, like when we were babies. Even when we fall or stumble crossing the road or spill a drink we only look clumsy and stupid.
One of the first things I realised that I’d lost forever was my dignity. The invasive tests and probing into every orifice. Even our minds get scanned and the pictures poured over by complete strangers, looking for flaws and damage to explain our broken bodies. They all mean well, but they can be insensitive sometimes.
I can’t imagine that there is single one of us that isn’t angry and frustrated. But what we do to cope is very individual and there isn’t a stock answer to, “How the hell am I meant to go on?”
Perhaps the biggest obstacle isn’t the most obvious and it’s loneliness. MS isolates. Isolation and solitude are painful things and beyond human endurance. The only ones who can see how we feel are those that understand us. Without those people, and there aren’t many, we can become lost and hopeless.
This Forum is a gateway to more people like you. We understand the bowel and bladder, the falls and the brain fog. That’s my answer; you’re already here.
Join our community and talk about your day. We get it.
Anthony
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Hi ya My name is Lorraine and I was diagnosed with progressive m&s and had 3 month old twins. There are so many things wrong with this nasty illness and no one understands or believes it when I say my legs are really bad, my bladder is not very strong. I get lots of bad headaches but brides all this I due try to beat it…I hate. It bearing me…I have no mates who understand this illness and all my family are in Essex where I waa born but since moved to N Wales in the 1999
I understand how you feel, honestly.
So after a year they finally installed auto doors in my workplace. The freaking door just opened itself when I was halfway through catheterising. Did someone mention dignity? Forgot what that feels like if I’m honest!
Well I’ve had MS for over 20 years and I hate it too. MS stinks. I have no dignity left. Whatso-f’ing-ever.
I do feel for your doing ISC with an audience. It’s crap.
We go on because there’s not much alternative really. We don’t have to be brave or strong. Sometimes when some well meaning idiot says ‘you’re so brave’, or ‘I admire the way you just carry on, with all that you have to cope with’, I want to tell them that I’m not brave, I’m just stuck with this useless body that doesn’t work right. And OK, I really want to tell them to F off with their patronising shit.
As Anthony says, let it out here. We get it because we live it too. This community is a real life saver at times. When you want to scream at the world, tell us. We’ll scream with you.
Sue
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Eugh I just hate this life. I feel as if all the joy has been sucked out of me. My old friends from school (all 2 of them) are supportive but I’ve been living away for ten years and all the friendsI thought I’d made here melted away when I got diagnosed. I’m lonely and isolated and feel like I’m ruining my partners life. I feel like he’s with me out of pity and I’d rather be dead than have that
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tingly_badger
You have come to the place where people really do understand how you are feeling. My MS nurse helped me with a brilliant “lightbulb” moment when she pointed out the negative impact on my energy of being incandescent with rage at this malevolent condition. Don’t get me wrong I still get angry and upset but I am aware enough to manage my response. If I don’t rant around the house threatening to chainsaw off various bits that no longer work, I actually have enough energy left to treat myself to something nice.
I hope this does not sound trite.
The notion of “why even bother” makes sense on one level, but I reckon with only 1 shot at life it makes sense to try and make the best of it.
I am not so arrogant to assume that this is valid for everyone as we each have our own values and thresholds, I have been to some pretty dark places but with a bit of luck & some great support I can ‘kind of’ cope.
Wishing you all the best
Mick
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tingly-badger
you go on, because YOU are bigger than it! Because MS is not your life, it is part of your life and the “new normal”, which is shite but at least here we all know that and can understand.
You have to adapt to how life is now. My lightbulb moment I spose was realising I couldn’t run for a bus anymore…so why bother trying? Don’t beat yourself up about what you can’t do. Celebrate what you can do. And you will find you can do a lot.
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Mick makes a very good point about the negative effect of rage, it can have a corrosive attitude that damages an individual’s life and relationships.
However, one can channel anger into a positive force which may be used to benefit and improve our lot. It’s entirely up to each one of us how we deal with the challenges of MS, as it is with every other aspect of our lives.
It’s not easy though. I wish I could practise more of what I preach.
Anthony
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Not reacting to the frustrations is what I find most difficult. Compared to many my symptoms are pretty minor. I was diagnosed with RRMS 2 1/2 years ago.
My balance is shot to hell and walking is getting more difficult as foot drop kicks in so every step requires concentration. I’m a pretty big guy 6’3" 17st size 14 feet and its a long way down and a hard landing. How do other people cope with the loss of things that were a big part of them?
Most of my physical strength has disappeared i used to coach kids rugby and im now too scared of falling to try and run or ride a bike. Mental Horsepower was always my key strength on appraisals but now its only just coming back thanks to being prescribed an Alzheimer drug by my neurologist.
I know a lot of it is male ego being bruised but I’ve jumped out of planes, abseiled down tall buildings spent 20 years in the middle of scrums etc and im scared to get on a bike!
Sorry self pitying vent over
Mark
At the moment the media is full of the team for the Invictus games. These are guys and gals who have lost one, two sometimes 3 limbs! How many times have they fell down? More than bruised egos, I expect. I expect the loss of something that was big part of their life is a big mental issue for them!
At the moment I’m struggling with having bruised my leg badly - crashed wheelchair into metal lamp post - so I’m nervous of falling. But crikey watch these guys and you are suddenly humbled.
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Mark,
feel free to rant, self pity or not. When something is stolen from us it is ok to be thoroughly hacked off. One way I sort of deal with stuff like not being able to hike/ski/swim or ride my motorcycle is to remember just how good it was but then to realise how lucky I was. Male ego and pride for me is double edged, I need to try and maintain my dignity but there are times when I have to have my food cut up for me, but I still choose how when and who can help me out.
All I can suggest to you is try to be flexible, adapt to each days new ‘normal’ and try not to get too wrapped up in the loss of the old ‘normal’. The loss is very real but not worth too much grief.
Good luck
Mick
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Those athletes are amazing and I too am humbled and for a bit I am a bit less bleaty!
mick
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Thanks everyone. I know you are all right. To be honest if it wasn’t for my legs I’d feel a lot better about it… Not being able to walk without a rollator, and my legs getting too tired to do that for more than ten minutes, is really frustrating. I have just started a degree with OU and I’m going to complete it to prove to myself that this bitch hasn’t got everything. I’m 34 and another 40 or 50 years of this is daunting. I saw something interesting on TV the other day. A guy got diagnosed with HIV and asked the doctor how he was meant to carry on. The doctor said ‘take it one hour at a time, which will turn into days, and eventually you will be able to envisage a positive life time’. So I’m just going to try that. And yes, anger and frustration are really draining and it’s hard not to get sucked into them!
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Ruddy stubborn! This is my second disease, it can naff off. Not letting this one get me until I am absolutely beaten and need a proper rest!
I kept going yesterday because - I bought a poorly plant for 95p that looks like nobody cares for it. It is tiny, has a little pink flower, I will probably forget that it is in the ground or it will die, but it made me happy yesterday. I have bought a lot of poorly plants but this is my thing, this is what makes me carry on apart from other more important things but also, I’m ruddy stubborn.
I am just about to go to my third funeral in a short time, all relatives. It sort of brings it all to reality and just makes me more determined. Each day and all that. Oh well, I shall get my gardening books out today to keep me going (if I can pick them up).
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hebeyellow your poorly plants love you.
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stubborn sounds good to me and your plants
M
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Just seen this post tingly badger and had to reply. I was diagnosed not long after starting a degree as a mature student in my 30’s. this was back in the 90’s. The GP didn’t tell me till I was one year in; leaving me thinking WHY didn’t you tell me earlier. “We wanted to be sure”… My reaction was pretty much yours - I’ve started, so I’ll finish!! This was full time (only way you got a grant back then), with 2 small kids and travelling 30 miles by train. It WAS tough, got worse in the 2nd year but better in the 3rd. But I DID it!! and so can you. Take advantage of every support offered to you in the way of extensions. Work when you can and pace yourself.
Dear tingly_badger,
I’m so sorry you are feeling so rough. I really hope sharing here will be of some help and encouragement to you. There are some wonderful people here, diagnosed and not diagnosed but we are still able to feel your pain and distress so please don’t suffer in silence.
I hope today is a better day for you.
With all good wishes
Grandma xx