aaron84 17/05/12
Last reply 6 years ago
Am I a Fraud?

Had ms for 2years but since my first relapse at the begining my physical symtoms have more or less gone, I still have numbness in my hands and get tingling/burning sensations and the main pain in my butt CHRONIC FATIGUE but to see me in the street people wouldnt even know I have ms and although people keep saying I shouldnt I cant help but feel like a fraud especially when I see others with ms who have more physical symtems and less mobility than myself

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DJDsouza
6 years ago

You’re not a fraud mate. Used to think the same about myself before I got worse, but as I don’t have any emotional troubles, I sometimes think I’m a fraud still as well! [email protected] up or what?


marazziv
6 years ago

I know exactly what you mean, I was diagnosed 2 years ago and although I suffer with sensory issues I’m still very mobile and people look at my weird when I tell them I have MS. Key thing to remember is the disease effects everyone in a different ways!


ophelia
6 years ago

I can so relate to that feeling darlin!! I think even those of us who have MS maybe, subconsciously think people with ms are wheelchair bound and very typically “disabled”. Damn media brain washing!! While you are well, embrace it!!! I’ve been off work for 6 weeks after a horrible relapse but I want to go back as I now feel well again. But then saying that if I go back too soon I could tip myself back over the edge again. So another 3 weeks off before they’ll even consider letting me back….!!


scotkiwi
6 years ago

You’re not a fraud mate. I feel very similar. I dont have anything that is red, swollen or blotchy – it essentially “looks normal” but is numb ! And the fatigue thing is a right pain in the posterior for me. I bike everywhere and at times my legs fall off the pedals as I dont have the strength to keep them on. Frustrating frustrating frustrating! So you’re not alone mate!


lindz
6 years ago

I suggest you take full advantage of your abilities, but listen to your body when it’s trying to tell you something! 🙂


jess-monster-2-2
6 years ago

I hate that saying ‘but you look so well’ as if people think that our heads should pop off and roll in front of them to warrant us having MS. Having physical problems isn’t a ticket to accepting that things aren’t going to plan. I now have walking difficulties and lots of gadgets to make me function but people still say it…’but you look so well’. I just smile now and picture my head rolling off and the shock it might cause. I think that there are as many people out there without mobility issues, it is just that we are conditioned into thinking MS = wheelchair, it doesn’t and try not to let it make you feel bad, don’t let bad press get you down. Jess x


ophelia
6 years ago

Jess i’m having the same issue with the “but you look do well” I’ve lost close to 2 stone in the last 2 months due to stress of my diagnosis and that’s ALL people say!! You look fantastic. Its nice to get compliments but there are days when I’d just like to scream “but I feel like absolute s**t and i’m more scared than i’ve ever been in my life”


maryklou
6 years ago

You shouldn’t feel like that at all, its definitely annoying when people see you walking fine and assume that everything is ok with you and so they don’t really understand what it is that you moan about, but you just have to remember that others cant really see or feel the pain and fatigue that you experience every time you walk or do something that triggers your ms symptoms.


aardvark
6 years ago

I can totally relate to what you’re saying. Your current symptoms sound identical to where I am at the moment, except I only have numbness in my left arm, from my elbow to my fingertips. All of my other physical symptoms from relapses have completely cleared up for now.
I’ve only told my direct family and a handful of my closest friends about my diagnosis and my professional life has been totally unaffected up till now (apart from the constant fatigue).
Ridiculously, I feel quite guilty, particularly about telling anyone else – as if it were in someway self indulgent, or that I’m somehow looking for sympathy.
Ultimately, the biggest challenge I’m currently facing is living with the constant threat of a significant and life changing relapse – and that isn’t something that you can even begin to explain to somebody who is not facing it themselves. But I also know it’s infinitely preferable to living with the worst that MS can do to you.
Hence the guilt…


clarew0305
6 years ago

I feel like a veteran MSer!! I’ve had 14 years of ups and downs, it was confirmed to me by my Neuro recently that my MS had indeed progresses so change of label, no longer RRMS but SPMS….woohoo! Sorry this post isn’t about me but i’m trying to say that because of the ‘invisible’ symptoms it seems extremely common this ‘but you look good or well’ I try not to use my stick if possible and yes I feel guilty and a fraud when i’m having a ‘good’ day even though a ‘good’ day I still have a huge list of symptoms which would confine a non MSer to their bed! Moral of the story….No, you’re not a fraud! x


bubblesgalore
6 years ago

hugs and kisses… keep well xx


rose99
6 years ago

Not at all Mate, dont feel bad just cos you ‘appear’ ok. If anything there are loads of invisible stuggles we have each day with this disease! I am sure your fatigue is a daily struggle that you just get on with it. Its different for everyone so give yourself some credit for doing so well with what you do have. Its not a competition! take care!


melanieellis
6 years ago

Like you I am lucky enough to have few symptoms so I know how you feel – you have this label but yet you do not seem to suffer. When I was first daignosed, I made a decision to be open about my condition (except at work because I was worried aboiut being being watched, judged etc,) so that people could understand more – like you don’t necessarily end up ina wheelchair. At first, people found it hard to believe because they could not “see” the symptoms and I feared they thought I was making excuses. Now I know that I am the one who makes excuses and judges myself for not controlling the condition. The important thing is to listen to your body, accept what you can do and make small adjustments in your life to accommodate the things you want to do but recognise that certain things will be tiring and you will have rest after.

I am perfecting the art of power napping and have managed to persuade myself that I am not being lazy but I am listening to my body (a major vicotyr for me).

MS is different for everyone so listen to your body, do not beat yourself for the things you can’t do or compare yourself your condition with anyone.

I highly recommend power napping!


ophelia
6 years ago

@melanie, This is something I’m having to come to terms with, I have to allow myself ‘duvet days’ and I’m trying not to beat myself up ‘too’ much about lazy days!! I’ve also been off work 6 weeks so can’t help but feel a complete waste of space right now 🙁


aaron84
6 years ago

cheers for all the comments and advice guys always good to know im not the only person feeling this way. Im defo gunna try power naps just although i av been off work for last couple of weeks(im a care and support worker would you believe lol) i normally work a full time week so have little time as it is to sleep plus my gf is struggling at the mo as when im nonot working im usally too tired to wanna do too much so she says its getting hard for her as she dnt feel she has a bf and her other friends are doing alot with their partners like going out or holidaying where as our bights are takeaways and films and her freinds often comment we are boring or old before our time which hurts me as before my first attack i use to go out alot play loadsa footy lads holidays you name it i done it and coz im 27 n shes only 22 i feel ive stolen her young years and her oppertunity to live so to speak.


Anonymous
6 years ago

@aaron84 – I can totally get where you are coming from talking about your girlfriend. My partner and I have been best friends for years but when he and I started getting together we were very active. We went hiking all the time, did day trips to the beach, walked everywhere, went to the gym together, did yoga and pilates together, had huge dinners where we would spend the evening cooking and talking and having a blast. We had just gotten together when my last flare up hit…and it took a lot of that a way. There was a long time (and still sometimes now) where I felt that I wasn’t the person he fell in love with anymore. He was bored and kept trying to get us out and doing the things we used to do…when I couldn’t. Made me feel horrible. Definitely wasn’t his fault or mine.
Thankfully we’ve worked past it and now we do a little bit of both. We go out on hikes but we also have rest days when I’m feeling bad.
I think the key to this is finding a middle ground together. Doing something you both enjoy and something you both can do together. Communication is key.


Anonymous
6 years ago

@aaron84 – I can totally get where you are coming from talking about your girlfriend. My partner and I have been best friends for years but when he and I started getting together we were very active. We went hiking all the time, did day trips to the beach, walked everywhere, went to the gym together, did yoga and pilates together, had huge dinners where we would spend the evening cooking and talking and having a blast. We had just gotten together when my last flare up hit…and it took a lot of that a way. There was a long time (and still sometimes now) where I felt that I wasn’t the person he fell in love with anymore. He was bored and kept trying to get us out and doing the things we used to do…when I couldn’t. Made me feel horrible. Definitely wasn’t his fault or mine.
Thankfully we’ve worked past it and now we do a little bit of both. We go out on hikes but we also have rest days when I’m feeling bad.
I think the key to this is finding a middle ground together. Doing something you both enjoy and something you both can do together. Communication is key.

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