I would love some empathy, even some sympathy, but I never want pity

I would love some empathy, even some sympathy, but I never want pity

I was diagnosed a year and a half ago with relapsing remitting, I had been suffering from weird symptoms for years. I suffered pain through my body, random numbness, bladder incont. As well as extreme exhaustion. Everyone looks at me and has actually said “you look fine ” my example is today . I work as a nurse. It took all I had to get out of bed. Pain everywhere. Like the flu. Every muscle, every joint and I felt drugged I was so fatigued. My day consisted of fake smiles and how do you dos as I silently want to scream I hurt so bad. My hips hurt my legs feel like jello and wobbly. I almost loose it because I hurt so bad. Random cramping all over my body that last 5-10 seconds and moves to the next location. I want to scream at people when they say ” you look fine, you can’t be hurting that bad” the summer heat is just killing me. Symptoms are worse and people can’t understand I can’t hang out at the lake or bbq all day.. I start to slur my words alua top wybory, my legs get all weird and want to go different directions I can barely stay functional with the wave of fatigue that hits. Yes I can understand your feelings. It’s so hard for us

Matt that is BRILLIANT. Like you I can find all the words in the world when I am typing on here or via emails and Facebook yet I can’t explain all the disabling symptoms of MS when someone asks me, I just go blank or stumble to explain the different ways it takes affect. We are proud people and don’t want sympathy so we try carry on as normal and that I reckon is our undoing because then people think we are OK and they don’t understand how bad it can really feel every day. And don’t get me started about disability pension and how government departments treat MS patients. I live in Australia and the way I’ve been treated (and fellow MS patients) is just short of third world. We are seen as spongers, dole bludgers and good for nothings and after 2 years of being out of work I have not been able to claim a single dollar. I am 52 years of age, have never claimed anything in my life and have a Masters degree so clearly to not be able to use my skills means there is a reason! Who in their right mind would want this life yet when I need the help I get nothing and I know I am not alone. MS comes in many forms like you say and the “tick box” disability / social system doesn’t take this into account for this illness and remitting MS is actually ongoing and this makes it impossible to hold down a job when every day is a struggle to just get up and move around. Thanks for the insight it is so helpful to know I’m not alone and struggling to verbalise how I feel is actually normal for us. Thank you for sharing – it’s really appreciated.

Dear Matt, I loved reading your story because it’s so very true

My feelings exactly! You stated it very well. People really can’t understand until they walk in my shoes, but I would never wish that on anyone.

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I really do want independence. I reallydo just want to be another contributing member of society who blends in with the crowd but that is not the hand I was dealt. After 5 years of living with this disease I still have no idea how to really explain to people or the government that I can’t do as much as I look like I can. Not ever. I may not look disabled nor do I like to consider myself disabled but don’t try to hide the fact that I am expected to climb the mountain we call life just as easily (with 200 extra pounds on my back) as everyone else because that is just not realistic. Unless you have walked a mile in my shoes don’t tell me “you are fine”.

It WASN’T a big deal for me AT FIRST but now? Now EVERY DAY seems to be a struggle. I don’t know how to start a life yet because Uncle Sam won’t help. YAY, on my own!

I was diagnosed with MS twelve years ago. People think we look fine on the outside, but no one sees the pain and anguish that we feel. I now have secondary progressive MS and it’s hard. I also have Crohn’s disease with an illeostomy bag. I have been on Disability for a long time, it’s so hard for me to do the things I used to do, oh but everything I feel is on the inside so people think we are the picture of health. I used to believe in marriage, my husband left because the MS has effected me in ways that he didn’t like! How someone could be so close and know how this illness can effect us is beyond me. I get so exhausted very quickly, if I do to much the pain is incredible. I have to stick myself with a needle every night but no one sees that, I know I’m going on about this subject but I just wanted you to know that you hit the nail right on the head! Jaime, you hang in there! I can’t say it gets better, but life has to go on, we have to make life go on even if it sucks! Like Matt said, this is the hand we were dealt. Try to make the best of a really bad situation! That’s what I try to do.

Ironically, despite my writing, I sometimes have issues opening up to people in my life; I have worked on it and got better but I understand.

I have been in both boats; looking disabled (wheelchair/walker/cane and looking perfectly normal. Both have downside. Though I prefer to blend in it does come with the price of having to explain to people “yeah, I look good but feel horrible”

The office closes at 4:30. I got there at 4:00. Talk about a long, frustrating scary day. Just be involved in your care. We really are just a number in some aspects of care. Other than that the whole disability process went fairly well. I walked into the SS disability office, the lady reviewed everything and said, “Where have you been all these years. I was approved. I need to thank my neurologist. She had documented my care well and had the fore sight to know what was coming even though I didn’t. I am stubborn and work really hard not to let MS rule my life. Fatigue is my biggest hurdle. I am just now beginning to realize that others around me are not so tired they can’t finish a task.

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