Hi everybody , I hope you don’t mind but I need a good old moan as if I don’t vent somewhere I’m going to explode . Around a year ago I went to see a ms professional as I needed a chat and I explained to them that at 33 years old now all my children are at full time school I felt I needed to do something with my life I wanted to go back to work to do something and not just sit at home and rot with the bloody illness. But the reply I got was not quite what I was hopeing for and was told " we’ll ms is progressive you can claim you know " this distroyed me for weeks sitting thinking is this it forever then. Then I thought no no way this is not it I am not having this my symptoms are not bad I get a numb face slightly weak hand and buzzing legs but that’s it I gathered strength and felt determined to prove them wrong that I can do anything . So I found a school that would take me on and pay for my collage to be a classroom assistant and it took me months to get to that point . I started there a week ago and what a fool I feel yep they was right I can’t do it I fail im in agony I can hardly walk I feel like I have been doing exercises for a month I’m buzzing in my arms and legs constantly . So there you have it what’s the point in fighting to be normal why can’t you ignore it why can’t it go away , I’m sure we have all been there "why why why " . And then to top it off I made the huge mistake of trying to google one of my ms symptoms and found a lovely little story about a awful awful case of someone with MS who’s life ended being not being able to move or speak . And I’m sitting here listing to the rest of my family moaning about how many biscuits are in the cupboard or why there favourite top hasn’t been washed and I want to stand up and scream properly scream from the top of my lungs . So there you have it I’m lost and lonely fed up and had enough properly had enough . I’m normally positive all the way I don’t moan I get on with it but I feel beaten down and don’t quite no how to get up again . Sorry if my post has upset anyone it was not intentional I just felt I had to say what I feel really feel instead of hiding it all up . Thanks for reading and sorry xx
That is a total pisser about the job. No wonder you are feeling low. When something like that happens, all the background stuff that a person normally takes in her stride can start to feel pretty damned intolerable. You rant away and please do not apologise. Goodness knows, we all understand. Is a nice glass of wine an option? My go-to solution for most of life’s ups and downs (not that I would recommend this, naturally).
You look after yourself.
firstly please take comfort in knowing that i have read ur words. i have no idea how ur feeling because i am not you. however i can understand ur frustration.
i am single mum of 4-3 still at home. i dunno what age ur kids are but my youngest 2 were 3/4 when i was diagnosed.
i went on strike! seriously! to help them understand that we had to work together as a team-sod all to do with my dis/abilities but thats cos what families need to do.
let ur frustration out on here-we are all just trying to do our best and support u as we can.
take care of you-i will write more when i can, ellie
Hi Anon I could very flippantly say that’s the two sided face of MS. But that doesn’t help with the emotional impact that this bad arse disease has upon you. I fell short of completing my masters, in preparation of becoming a teacher, due to the debilitating nature of MS. One day I could walk, have energy, be in control of my bladder the next, barely able to walk, being confined to bed and being incontinent. In a way the emotional roller coaster we go through is similar to a bereavement - coping and dealing with the loss. Feel free to cuss and curse - it’s therapeutic - use us as sounding boards but do use the counselling service here - I did and it helped me.
Hope the unload has made you feel better. Any chance of part time or some voluntary work? Don’t feel bad about claiming. Lots of less deserving people do (not referring to anyone on this site - the ones that make the papers mainly) so why shouldn’t you? I also feel that you should let that scream out. Your family need to do more for themselves and not always rely on you. Take care. Ann xx
Im sending you a big warm hug ((((( ))))) xx Sparkly
I feel for you it must be so hard, its hard for us all but hell it must be hellish with kids as well. you can not beet a good rant, at least it lets off a bit of steam! and hopfully makes you feel better. Its so hard, im 34 and get so peed off sometimes when my legs dont work right or arms and all the rest of it, good luck.
Have a good old rant - you’re entitled to it. Once you’ve got it all out of your system hopefully you’ll be able to begin to see a faint light at the end of the tunnel. Then you just need to keep on that track and travel towards that dim light and it’ll get brighter and brighter until you’re finally out of the tunnel and back in the sunshine…yes it might rain and be cloudy sometimes but the sun will always come out again.
I know this because I went through that dark time and came out the other side when I was first diagnosed. I used to be a career girl, managing call centres. I was on really good money and loved the challenges that the job provided. Then I got MS! In the first 6 months I had 4 relapses, so I was off sick for pretty much all of that time. Then the call centre closed down and I was made redundant. Every time I would think about looking for a new job, another relapse would come along and put a stop to that.
In the end I realised that I wasn’t going to be able to work anymore as although I’d started DMD’s and the relapses were less often, I had been left with issues that meant I wasn’t able to function normally (in a place of work). I stuggled at first when I finally admitted to myself that life really had changed completely. I was hoping to feel ‘normal gain’ but that was never going to happen. SO I gave myself a good ole talking to and decided that THIS had to be my ‘new normal’. Once I’d got used to my ‘new normal’ I felt so much better… this is how it is now, get on with it.
My ‘normal’ has changed a few times in the 7 years since I was diagnosed but having that ‘this is my new normal’ look at life really helps me face it and get on with it. I once asked my old neuro after a relapse ‘is this going to be my new normal?’ He said not necessarily you might get better from it but I can’t say that that it will get better. I said o.k. if this is my ‘new normal’ I can get on with it. He said he’d never heard anyone use that term before and that it was a really good way of looking at things if it helped me get on with life.
I really hope that it doesn’t take long for you to accept your ‘new normal’. You still have a life to live and you’ll find different ways to fill your time, be it volunteering, a hobby, a club or something else.
You have every right to vent and rant or whatever you need to do. This is the place to do it, as the majority of us have been and are still are exactly where you are now.
I`ve had neurological problems for 16 years now and MS was on the cards for many of those, but has been discounted now. I dont have a full diagnosis.
The way I deal with how my life has changed dramatically over the years, is summat like this;
there is absolutely no point is asking
why me?…there will never be an answer to that question and
there are many folk in a worse state than me…met loads who are no longer with us, when I use to go to a hospice for therapy and respite and
what precious energy we have, should be used for the things we need/have to do…dont waste that energy beating yourself up for having a bad day or accepting invitations you`d rather say no to and
finally, accept all the help that is offered, search out help from the likes of district nurses, OTs, physios, continence service…whoever…
I manage my life with the help of hubby and 3 carers. I rest a lot…watch tv a lot…and life aint easy, but it is still worth living.
My slogan is;
I may be broken, but I`m still here!
much luv, Pollyx
I’d have kicked the Neuro!
I’ve worked full time for all 17 years of my ms diagnosis. I use a wheelchair and have a full time support worker which without it be not working. We all have to adapt and do what we can when we can. I love Sue’ss comment on ‘a new normal’ Its hard, but I just get on with it.
I just want to thank each and every one of you for your reply’s just knowing other people have experienced the same sort of problems and emotions make me feel less alone. I am feeling a little bit better today I think yesterday was just a very bad day for me . with regards to work I am going to keep carrying on as thinking about it , maybe my body just needs to adjust to being physical again after such a long time not working . There is one thing that is sticking in my head that I can’t seem to shift and that is the story I clicked on . I have been diagnosed a few years now and it came out of the blue I knew something wasn’t right but had no idea what MS even was until I got my DX . I have always maintained in my own head they have it wrong even though every symptom and relapse has shown other wise but I guess this was my way of coping .I have never wanted to read much apart from the basics as I wanted to remain ignorant I guess . So the main information I processed was MS can’t kill you however after reading a few things on google ( I know awful idea ) it seems a lot of the story’s say otherwise . I am so confused now why did I look why am I asking these questions now after so many years . Is it possible to live your life without getting worse or is disability a certainty does anybody know anybody who has had ms years and not got any worse . Are the story’s extreme cases or more the norm ? I have been in denial for so many years I even have refused dmd’s that have been offered over the years as I convinced myself they had it wrong. Why all of a sudden after years am I asking these questions when I never wanted to know before ? Still feeling very confused but thank you to all for making me feel less alone xx
I don’t believe there’s any evidence that MS shortens your life expectancy. It’s so different for everyone there’s no clear road ahead for anyone. I had a bit of a shock when I visited my local MS Therapy centre for physio for my leg. Lots of sticks, frames, wheelchairs and mobility scooters. The people who I chatted to were very friendly and helpful but I do think I must have looked like a rabbit caught in headlights. It was a ‘is this my future?’ moment. I confided in the lovely physio and she reassured me with stories of patients in their 70s and 80s (one lady she mentioned is 93!) who are still mobile and active. I’ve chosen to focus on the positive, do my exercises, and just hope that I’m able to stay mobile for as long as possible. Take care. Ann xx
Hey sweetie What an absolutely bummer for you. An absolutely horrendous time. I really really feel for you. One really important bit of advice is please please please reconsider DMDs. This is because the evidence says that they can slow disease progression and reduce relapse rate. Hugs Min xx
MS is frustrating isn’t it? I have just been diagnosed (about 4 weeks ago) and I am still trying to get my hed around it. I have chosen a “action” stance and have focused on making life easier for myself. I would recommend talking to your family. It will help you vent and will allow them to see just what you are going through and how difficult things are.
For me, every day is different. I don’t know whether I am going to wake up to a good day or a very trying day. I currentlly work and I am so stubborn that I am only very rarely off sick, regardless of how I am feeling. Perhaps not the healthiest thing to do but it helps me mentally. My work have been brilliant andm,y colleagues take care of me always making sure that I have plenty to drink (I have very bad mbility issues and cups with lids are my only option if up and about). I couldn’t get through my day without them!
Though havng just been diagnosed, I have had symptoms for some time. My left leg is terrible and the moment and my left arm tires. I am constantly falling over things and dropping items. I find hurling things (within reason) is a good way to vent
I have to say Sue that I plan to use your moto from now on - the new normal. That is just brilliant
Take care Anon,
You wanted to know of someone who has had MS a long time…well, here I am. I was first diagnosed way back in 1977…a beautiful summer day of all things…since then, of course, I have felt that that was it…but I carried on teaching for a while, took a psychology degree, got married, had a son and now I run a holiday cottage. It was a pain when dumbness in my feet made me stop driving but we manage and between my husband, son and myself we have a good life. After all these years I often feel I know more than the hospital folk do…just as well as budget cuts have meant I no longer have a neurologist or MS nurse.
Don’t JUST read the bad things that can happen…goodness knows bad things happen to everyone. Keep your brain active…if you can teach why not trying writing…there must be a brain in there…we “ex-teachers” must make a stand for ourselves.
Good luck in all you decide to do and keep on ranting…shows you are still here!