just wondering does anyone every feel like no one takes them serious or ever feel like a fraud when your having a good day i was diagnosed last year ive severe pins and needles in both hands along with servere hypersensitvity in both hands my left leg in completely numb and more often than not i find it difficult to walk along with the fatique the depression fog brain and more recently vision problems cramps and aches and pains i tire easy so cant go out on long trips i also suffered the wonderful ms hug for two months with numbess scattered across other areas thankfully this has resoloved although the rest has stayed , (oh lets not forget the speech !) and the wonderful bladder issues i now have to self cath and on all sorts of meds
but my problem is ppl dont take me serious in turn this makes me feel like a fraud because when im having a good day i can walk without aids and i ride my bike regulary because i was a keen fittness freak before dia but with the problems ive had a bike is the only option for me ive had more than one person say well you cant be that bad and i think im overracting or i get the your exaggerating your condition to claim dla this really gets to me and i start to believe them ,although i know if i do to much it bed boundsme this i discovered more recently when i flew to liverpool with my brother for a uni interview when i got home i was bed bound for four days i had to leave work and now im starting preventive treatment due to amount of relapses in a year i do claim dla i mean i have two children im 27 but sometimes i just feel like ppl judge to harsh im new to this and being quite newly dia im now only at the stage were its sinking in i guess im looking reassurance because ppl have been quite cruel how do i deal with ppl who dont understand this msand how one day you can feel completely normal but the next well ā¦
sorry for the long post this is my first time ever really writing all off this down so kind of need to get it all out there
Some people will never get it. Unfortunately our current government has made sick and disabled people the scapegoat for all that is amiss with the welfare state. Consequently people in general are predisposed to look for fraud where non exists.
I sometimes sit in the car and wait whilst my daughter shops at the local supermarket. I can see the disabled parking from where I wait and I am constantly surprised at how many people examine the blue badges as they walk past ā and look at people returning to their cars with a critical eye. What do they expect to see?
MS is a very difficult condition to āsellā. Iām lucky I use a wheelchair so the general public perceive me as legitimately disabled but it hasnāt always been so ā I have spent many years with MS on my feet so I know how you feel.
The trick is rhino hide. The DWP know that you are eligible for DLA and in your heart you know that you are not being fraudulent. Scr*w the rest. It is easier said than done I know but the kind of people who will make judgments (and vocalise them) are really not worth your concern.
When my bungalow was being adapted a neighbour apparently said āI wish I was disabled they get everything on a plateā So even my wheelchair does not protect me all the time.
Hi, you have to find your own way of not letting these ignorant people get to you. I call them ignorant as meaning they simply dont understand how MS can be for some people.
If you were in a wheelchair, or had a pot on your leg, or used a stick or had anything which visibly lets folk know you have a health problem.
But you are not going to do any of those things just to get those same people to stop doubting you.
There will always be snide remarks from some people, no matter what you do.
Another thing, it is no-one`s business that you receive DLAā¦you dot have to tell anyone!
As you are newly diagnosed, you are still very raw and sensitive about having a chronic condition. So give yorself time to adjust and do pace yourself activity-wiseā¦as you`ve already found out, overdoing it can be incredibly fatiguing.
Whoa! someone actually said they wish they were disabled!! oh how sad,i think something not on any persons wishlist.
I agree that the government have stirred up some resentment and need to take responsibility for it.No one asks for this,it is not a lifestyle choice lol.
My circumstances are slightly different - I have on occasion even on this site referred to myself as the MS fraud since it does not really affect my life. But even with that I do have some symptoms and I know I canāt do all the stuff I used to. Iām lucky in that the people I work with are very understanding.
I would agree with Poll and get some leaflets. There is also thread going at the minute about what people with MS want to get across to others. Print it out and show people cause having a condition where you look ok makes it hard to convince people you have problems. Unfortunately some people will never believe you are as bad you as know you are - there is not much you can do about them. Try to get your immediate family and your closest friends - and maybe your boss - to be aware of what you are actually going through - leaflets again - and thats half the battle.
Take care hun - we are always here for a rant and to help you get things off your chest.
Hi Denise I Feel like a fraud some days too hun. I work in a school and am lucky that there is not much walking around. I drive to it everyday even though it is only 5 mins walk away as by the end of the day I am just about ready to drop and would never be able to walk back. I have a stick for weekends and out and about walking. My feet constantly hurt but I just put up with it. My leg cramps up and my foot drags at times, I stumble, talk gobble de gook. I just got awarded high rate mobility and low rate care on my dla and get a new car in a few weeks. I felt bad at even putting a claim in last year as I thought hey I can stand and walk a little way unsupported so I canāt complain! It is only on reflection of what I cannot do now to what I could just over a year ago that I have to accept that I am not going to get any better. You have every right to claim hun. Hold your head high. None of us asked for this and like everyone else has said this government and benefit cheats have not helped the publicās perception of claimants. I have yet to come across someone question me when I park in a disabled bay. I am prepared with my orange ms help card to show them and hopefully they will understand. Only my family and a few close friends know about my dla as it is nothing to do with anyone else. Take care hun and good luck xx dawn
When I had my first episode in August I did have difficulty walking (also due to a DVT) but because I can walk ok at the moment as I am between relapses (I have had 3) I get told I am so much better, so I feel a fraud. They canāt see my painful hands, wrists, ankles, knees, feet and ears, or the fatigue. Iām newly diagnosed too so I am finding it difficult.
Hi Denise, This is an incredibly difficult one. Trying to help people to understand what weāre going through. To explain what we are going through our invisible syptoms. But then how is it possible for people without MS to understand? A burning foot, MS hug, spasms, tingling - really odd symptoms even to describe. Then thereās the embarrassing incontinence problem. Perhaps easier to understand and imagine as happens to non msers too. Fatigue - oh yes Iām tired too is a typical one. Very difficult to get others to,understand fatigue as I find Iām just considered lazy wanting to get out of doing things. Oh how I would love to,be able to do,those things I would do,them with gusto if I could. Memory - I canāt even remember which question Iām answering so Iām going to go now !!! But everyone keep strong and do,the best you can Min xx
The problem with MS is it affects people differently, not even the neurologists see 10 people with all the same symptoms even though they all have MS diagnosed.
Its a variable condition so thankfully with pre PPMS you can get lots of good days but we all know if you over step you will end up with more bad days.
The thing is dont let it get to you. Its just negative attitudes you dont need. The thing is when they say to you āyou cant be that badā on one of your good days say to them well I am not ill, just NUEROLOGICALLY CHALLENGED, and today thankfully I have been given a break and having a good day, next bad day I have I will text you lolā¦
No one really understands MS, not even people with MS its like living with one card the JOKER CARD.
Just ignore negative people hun. You have DLA because you have mobility and care needs. Dont doubt this, if you have been diagnosed with MS you have had to endure a lot of tests to do so.
MS was always presented with a death sentence, and everyone who was diagnosed with it ended up wheelchair bound, and unable to do anything, but with progression and years, there are treatments now and many many people are living with MS but still having a fairly decent life. Its time people were aware its not what it was thought to be.
I think we become good at adapting our homes and lifestyles so it isnāt always obvious. Furniture stratigically placed, seats in all rooms, clothes we can manage alone, enabling things. Then we forget we are having difficulties, but if someone messed up our statergies, routines we would be stuffed, so to speak! Also, i think a lot of honest hard working people are programmed to guilt, most likely brought up to be independent etc, not take financial assistance, so we then struggle with the benefit claiming. Especially with the client government witch hunt. Like other people have said YOU KNOW you are genuine, when you feel bad remind yourself of the help you need or the way you have to do things differently. Be kind to yourself.
Today i saw someone my age pushing their grandchild in a pram. For a moment i felt really sad, I wonāt be able to push my granchild far, when i get one. the realisation, I would not be able to risk walking with a baby in my arms etc. Then i thought, how else would i be able to interact or help with a future grandchild, and i know i would find ways. We all have losses with this illness, surviving it emotionally we need to adapt and find other ways. It still sucks though
I was originally diagnosed some 20 years ago but due to not being too bad I almost kind of forgot about it for quite some time. I had the occassional problem but following a serious rta I kind of blamed everything on that. When my gp started looking into the possible reasons for my constant fatigue and shooting pain in my face and eye and found I was b12 and folate acid deficient she assumed it was all associated to an auto immune problem and so I had scans, camera up my bum, checks fo chrones etc all to no avail. I assumed she knew about my ms diagnosis but alas she didnāt and it took me to find all the original letters and mri scans to show her. As a consequence I paid to see a consultant neurologist in October who organised a new MRI and confirmed without doubt that yes this was definitely RRMS (I had had a number of problems over the last 2 years which on their own were dealt with but never linked together until he did).
Trouble is like you I feel guilty all the time and in some ways am still in denial. I know I have MS, I have seen my MRI showing the lesions and scarring on my spinal chord and across my brain - my neurologist explained it all to me. He immediately started me on topiramate (spent 3 weeks feeling like I was stoned out of my head, was moody, miserable, unable to function and so stopped taking them) and I started injecting copaxone last Monday (so far so good). But I still feel guilty.
I had to take a week and a half of work (I work 30 hrs a week and as a single parent of a teenager am on the go from the moment I wake up till the moment I can relax in the evenings about 7.00). Some days I just want to cry from the sheer exhaustion. But still I feel guilty. I guess I am my own worse enemy because of the continuous denial but I do not know any other way of coping.
I have never really had any problems with mobility. I have severe leg spasms - mainly at night and sometimes feel like my legs are made of lead - I feel embarrassed about the way I walk as if I am stompingā¦ When relaxing in the evenings I feel a strange tingly, almost tickley yet at the same time uncomfortable feeling in both legs and arms and have to hold them to feel better. Walking has never really been a problem - I walk with my daughter to the high street (approx a mile and half there and back) and although maybe slower than others and it makes my legs go numb I can still do it no problem. However Friday it took me 10 minutes to walk to the high street and 45 minutes to walk home my right leg just would not do it. I had to stop after every 5 or 6 steps to support myself and the pain was horrible. It felt like my right leg were going to give up and then suddenly the pain would flash and it would start to work again.
Yet still I am in denial.
I guess people just donāt understand what they cannot see or what they cannot feel and in reality all of us on here can never know for sure how someone else if feeling or what someone else is feeling. I recently got very upset and annoyed with my besti who I love because I felt her recent 6 weeks off sick for not feeling right (she has had loads of tests and nothing is wrong) was taking the p*** when I, with MS can manage to work everyday no matter how bad I feel. Yet in reality were I not being the same as those who judge us???
Life is never easy, but I will never give in. If being in denial until I have to totally accept I have a life long condition is what makes me get up everyday and work through the fatigue and the pain and the odd sensations and feelings and if I can laugh at myself when my words come out all gogglegook and look at people as if it is their fault and surely they understand me and if I can walk without falling over even though it feels like I will and so swear like a docker instead then thatās what I will do.
The only thing I can say positively is no one should feel guilty (although the irony of cause is that its ok if I do lol). I for one do not want a I have MS tattoo on my forehead I just want people to accept that yes one day I may want to go out and dance the night away but on another I may not be able to. I am not making excuses, I am just trying to live my life as normal as possible and in the only way I know how.
Up until now I was just like you, in denial. I was diagnosed in 2003 and have had various short term āwierdā numbness, pins & needles, speech slurring problems. Luckily I have always recovered after a few weeks and I have not been forced into a situation where I could not function (although with difficulty).
My partner for years said he didnāt believe I had MS and so things like the fatigue were put down to being ātiredā, lazy or similar by him.
I agree that denial is probably a good way to deal with being ālabelledā. It was easy to deny when in remission and it did help me get on with my life. Unfortunately, despite this approach I have now had to accept that the MS is more in control of my life than I am in control of it! The frustration and anger I now feel seems to have taken me by surprise.
I was never one for support groups or meeting others and sharing and comparing but now I find something like this forum very helpful.
I work self employed and therefore can not take time off sick or I donāt get paid ! I do bookkeeping and office admin work. I used to have high powered job as senior auditor in the council but I couldnāt cope with it in the end and took voluntry redundancy.
Overall, I have made changes to my life, where I can, to accommodate changes in my ability and stamina.
We all deal with things differently and if denial works for you then go with it for as long as you can ā¦ just be careful that if or when you do accept things that you donāt struggle with the acceptance like I have.
I am another person who feels like a fraud. My only visible symptom of anything wrong is my walking stick and thanks to my physio I am using that less now than I was before dx.
I know about the tingling in my hands and feet, the worsening co-ordination (which was never very good but is definitely worse), various other symptoms that bother me occasionally but are permanently in the background. But because these things are all invisible, it is harder for other people to understand them and the impact they have on my life.
And yes, I recognise Twinkleās comment about adapting. I canāt carry drinks without spilling so I use plastic, insulated, lidded mugs: one at work, one plus two lidded beakers at home. My husband refers to them as my tommy tippee cups! I can still drink from ānormalā cups/mugs as long as someone else brings it to me.
Denise, you know you have something wrong with you, officialdom has recognised it by granting you DLA. It is good if your nearest and dearest understand, or at least accept that there are things they canāt see affecting what you can and canāt do. The opinions of the rest of the world donāt matter. If they have compassion they will try to understand, but if they donāt have any compassion nothing you say or do will enlighten them so donāt waste your efforts.
MS is not the only āinvisibleā illness. A broken leg is easy to see, but many other things arenāt.
My late father was diagnosed with terminal cancer - which, of course, doesnāt show on the outside in most cases.
For some time after diagnosis, he was still walking three miles or swimming 40 lengths, because it was what heād always done. So he had to contend with well meaning people, seeing him out and about, coming up and saying: āItās wonderful youāre on the mend!ā
They didnāt mean any harm, of course. But it was excruciating to watch Dad have to tell them: āIām not on the mend.ā
āWhat? How do you mean?ā
āIām NOT on the mend - they canāt do anything about it.ā
There are so many serious conditions that canāt be seen, and even terminal ones arenāt all instantly disabling. Youād have thought people would have got used to that by now.
People will be peopleā¦with their eclectic waysā¦most folk are understanding and helpful, but there`ll always be the other ones, who wont help because they disbelieve our conditions or are so self centred that they only care about what they are getting/feel like/ whatever.
You cant beat `em all and why use your ever so precious energy trying to?
Live life for yourself and be kind to others, if some dont deserve your kindness, then chuff `em!
It takes all sorts of people to make the world go round, but it can be excruciatingly confusing when one day they see you struggling to walk and then the next time fit as a fiddle, or you look as if you are. Sometng that stuck in my mind when I started using a stick, was back when I was pregnant with my daughter I suffered from symphysis pubis dysfunction which was one of the most painful things I have ever encountered. I walked with crutches on bad days. Then one day I went to do the school run, and a girl I went to school with said, where are your crutches? Do you just use them on days when you want some attention? I was flabbergasted, but itās amazing how that narrow minded ness stays with you. When I am particularly bad, I stay home, so people donāt see the really bad days, so that have nothing to compare to, only the not so bad to the slightly better. I think even more infuriating to me, is the point before you get a diagnosis, and people, especially family, who cannot understand why you are so poorly. My mother in law still doesnāt realize whatās wrong with me, despite the fact she has dealt with ms service users. Every time she seems to think I am not too good because my back is playing up. People that come to see you canāt understand why you arenāt dressed, or your house is untidy, because they donāt have the label they need, and even then, they donāt educate themselves as to what ms is all about. And god forbid you start telling them, you might be accused of wallowing in it. Lol. Sorry for the rant, but people can be so ignorant to invisible illness, so,frustrating! J x
Only you really know what your MS is like and it is alien to others even sometimes to fellow Msers. I used to get angry and sometimes rude, even fighting myself - it never works. After 3 years I finally accepted the disability and progressive condition. Now if anyone is negative I can look at them carefully and say in a quiet but serious manner āif I could give you 10 minutes in my shoes, then you would understandā.
You will find that even people who think they understand really donāt (even medical staff). Now I have to use a powerchair when out and about but can still walk in the house with no footwear on. Others are often startled when they see me but if I donāt show anything is different they accept. Family is different we can expect I hope to be treated the same as always and this can be a comfort as well as an annoyance. Wrapping in cotton wool is only acceptable now and then - for me that is. Still a fiesty Yorkshire lass living with MS since 1979 (well perhaps not a las) it is still an upphill struggle - but - attitude is everything.
Go - command the world - and - donāt let the bu**ers get you down.
I really do agree with you Tina,most illness is invisible, you cant see cancer, heart disease, and so on, it really irritates me when others have said to meā we cant understand MS because its invisible ā grrrrrrrrrrrrr ā¦
I agree with so many of the posts on here. I have a blue badge, I walk with sticks, or on a bad day, my walkerā¦even that is no good for a bad day. I have a blue badge and Iāve mostly had the funny looks of 'well, you donāt look Iāll to me ā from elderly people. I thought you got older and wiser? Not those individuals obviously. Iām seriously thinking of a car sticker āI am illā lol. Iāve also had that attitude from my MIL who thinks Iām obviously āputting it onāā¦it really doesnāt help. But, as I see it, they donāt see you at your worstā¦and those that have that attitude donāt matter in your life.xxx