@katiecog

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katiecog

Hidden symptoms

Hi everyone, does anybody here feel people sometimes don't believe you have MS? Sometimes I nearly feel I have to explain why I only work part time so I share that I have MS... People usually look back blankly and say 'oh yeah? But you're grand.' I guess fatigue, confusion and memory problems are hidden so hard for people to see. Anyone else feel similar? Thanks, katie

Stumbler

@Stumbler

@katiecog , it's frustrating, but MS is known as an invisible condition. We all look so well, but inside we're hurting like mad! We can only try and educate.

buitenmus

@buitenmus

I think People can't imagine the fatigue, and I find It hard To explain, It's something others can't experience I Guess. I Just say How many hours I can Be Active in a day, and Tell them that normal things like laundry,... are included. It seems like they understand it better afterwards. I often get the strange compliment "but You look Great?!". It used To Be a Great compliment, now It sometimes makes Me feel like they don't gave a clue How devastation MS is for Me...

embroideress

@embroideress

@katiecog Oh yeah! As for the physical symptoms/sensations, I try to use very descriptive examples so people can imagine it. For my left hand I say it feels like I'm wearing a thin silk glove, which makes sensations on my skin a bit distant. Same for my left foot, except it would be a coarse sock plus a flip flop, and added to those I've got several rubber bands wrapped around the base of my toes that get tighter as the day goes on. For my vibrating legs (after walking for more than 10 minutes) I'd say it's like you've just gotten off a bumpy carnaval ride and you can still feel the effect in your body/legs. Fatigue is harder, because sometimes people may think I'm being lazy. I love what @buitenmus wrote 'how many hours I can be active in a day" laundry included, yeees! I'm going to use that, perfect ;-) For cognitive troubles, I haven't a clue how to explain, unless someone hears me make a word mistake, replacing a word with its opposite. I just correct myself and move on.

dinnerlady

@dinnerlady

Before I was diagnosed with the dreaded m.s!! When I would be out walking the only reference I could make about being unable to feel where I was walking was to describe it as walking on bubble wrap I could see my feet touching the floor but could not feel it weird??

Stumbler

@Stumbler

There's a post from a few years ago that may be useful :-   <a href="https://shift.ms/forums/topic/describing-your-ms-symptoms" target="_blank" rel="noopener">https://shift.ms/forums/topic/describing-your-ms-symptoms</a>

suehomer

@suehomer

I so get this! I haven't had a 'proper' job for about 13 years now. People say I'm so well. Well yes, that's because I don't have a job! I rest when I need to! I have an issue approaching now. I've just moved up to be closer to my parents, who both have dementia. They are still an hour and a bit away by car. My sister lives 15 mins from them, and has been carrying the burden. She is delighted I'm now close by and able to help take the strain, but the parents have got so bad in the last couple of months that someone has to go to them every day. Having just moved house from Cambs to Wales I am already exhausted (rental, we still have to achieve a house purchase which should complete within the next 3 weeks hopefully) and my left arm has got the tingles/wood feel/constant ache and the fatigue, while not too bad, is making its presence felt. I spoke to my sister last week and said that I think we should get a third set of carers in at lunchtime to make the lunch as I am not only finding it tiring to drive up and back several times per week, but tbh I don't want that in my life. Sounds selfish, but we're approaching retirement age and were hoping to slack off a bit, and now it's like having a proper part time job when you can't phone in sick if you feel knackered as elderly infirm people are relying on us. She doesn't get it. She thinks I'm being selfish/lazy … she hasn't said it, but I feel she thinks I'm using the MS as an excuse. I know that if I let MS take hold, it all goes wrong pretty quickly, so I'm keen not to get sucked into her vortex of chaos! Unfortunately, she's the 'big sister' and closer to mum and dad so she seems to be running the show. It's tricky, and I can only see this being resolved after a row. Not the best situation. It is SOOO difficult to explain to people that we are not being lazy or disinterested, but trying to manage our symptoms in a way which we know works for us. I think all we can do is be frank, and if people chose to take offence, then we have to live with it. Not a particularly positive contribution - sorry!

melissag

@melissag

This definitely is one of the more frustrating parts of MS, feeling like you need to prove it to other people, or explain when you don't really want to. Totally understand!

katiecog

@katiecog

Thank you everyone for all your tips!! :-)

fingersandtoes

@fingersandtoes

I am a leaseholder on a council estate. There is a garage underneath my flat that the council have let to a group of young men (Irish Traveller labourers) who are causing me nuisance. They use the garage for storage (and sometimes for sleeping I think, though they have a couple of vans and a couple of cars they also use). For some reason their favourite time to access the garage is 3am. The garage doors have been oiled so they no longer wake me up, but these guys stay down there loading/unloading/chatting/shifting rubbish out of the car, all with the vehicle idling under my bedroom window for 10 minutes or more, by which time all chance of sleep has been ruined for me. Although I got a good night's sleep the following night, the next day I still had to go home early from work with fatigue. I also have a sports injury and the pain was so much worse on inadequate sleep. And I've been experiencing more glare in my optic neuritis eye when I'm tired. I emailed Parking the other day and the manager responded "my neighbours just got a really barky puppy so I empathise" I really don't think you do... I don't get fatigue much and I mention it even less, because someone will always pipe up "oh yeah I get really tired too sometimes". I'm actually really proud I went home early yesterday, I caught it in time and managed to recover well. But I hovered at the station on the verge of asking for an "offer me a seat" badge. Was too self-conscious in the end and I think in my fatigued state I just couldn't cope with the asking. My next challenge is to ask for one when I am well, for the next time I feel that way.

Stumbler

@Stumbler

@fingersandtoes , I think you need to speak to Environmental Health at the Council. I think they deal with these kinds of problems. Also, for something like this, you should start a new conversation, rather than hijack an existing conversation. You do this by selecting "Say Something" from the Forum min page.

fingersandtoes

@fingersandtoes

Sorry @stumbler, I thought the conversation was about people not understanding hidden symptoms... My mistake!

Stumbler

@Stumbler

It's not a problem, @fingersandtoes , just a bit of friendly advice for the future. :wink:

potter

@potter

I just got home from the grocery store, I have carried in my groceries it is too hot to leave them in the car. But I hurt to much and fatigued to put them away, this will be the only thing I will accomplish today. When I was first diagnosed people would look at me funny and say you look so great. It has been 11 years of that, now if someone says that to me I quickly start explaining how you have lesions on your brain and spinal cord and nerve damage could cause problems any where in your body. I may be a bore but I think it is my responsibility to educate people on this disease, they know about heart, cancer, diabetes ect. why not MS. Tired of being polite. Potter

sfrox

@sfrox

The other day I told one of my friends that heat and strenuous exercise make me feel drunk but not necessarily happy.

watsoncraig

@watsoncraig

If someone sees me walking or hears me talking they think I have had a few, sitting down its not an issue (I'm Scottish so used to it). Get the look a lot from people who don't know me and that I am living with this 'cause most times I just seem a tad drunk. I have often said to folk "Its caused by MS. Imagine being drunk with out the happiness!" that usually shuts them up and makes them look elsewhere.

Cookie37

@Cookie37

Hi I have MS I was diagnosed in oct 2008 and its a frustrating thing really i used to dance a lot but struggle to walk as my right leg feels so heavy. any ideas what to do when your right leg is dragging just want to find a solution. The annoying thing is so many people around me look at me and wonder what is wrong with me as i look normal but dying inside

Stumbler

@Stumbler

Hi @cookie37 and welcome. This sounds like Foot Drop (https://www.mstrust.org.uk/a-z/foot-drop). It is frustrating and annoying. Have a word with your MS Nurse and see if you can get a neuro-physio referral, to assess you and see whether an orthotic may help.

Celleste

@Celleste

Google spoon theory I think it's a good way to explain fatigue

Stumbler

@Stumbler

Here's a link to the Spoon Theory, mentioned by @celleste above :- https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Ginz

@Ginz

I've been diagnosed with vestibular migraine. I've never discussed my sexual dysfunction with anyone. It's such a sensitive topic. I feel like my life is on hold. It has been for the last 20 years. I'm desperate to talk to someone. Thank you

Ginz

@Ginz

That post was a bit muddled, sorry. Vestibular migraine has much the same symptoms as MS. But it doesn't cause sexual dysfunction. MS is the condition that has this.

DmSwithMS

@DmSwithMS

Know all about it. You stay strong. For one to really Know about it they have to have lived it. Keep your chin up xx

AndreaG

@AndreaG

Oh yes. I had a work colleague accuse me of using my MS as an excuse. She based all her knowledge of the disease on her experience of her cousin, who also suffers with MS. I ended up leaving my job because certain work colleagues made life very difficult for me. It's like all the "hidden " diseases that exist out there, if people can't see it then how do they deal with it. I'm lucky, I work full-time, don't suffer with fatigue but people still laugh when I stumble at work. A lot of the problems that come to the surface are then put down to my age, being grey haired.

1

Galina

@Galina

@AndreaG Exactly! I'm also working full-time and so far no informed my colleagues about my diagnose. Yes, feeling surprised looks when loosing balance or stumbling, but also in my case it goes on my age.