As an undiagnosed person, I’m constantly thinking, this is it, my lifes over, no regular income, no children, no holidays, just gradually deteriorating overtime, suffering & having no control or hope. It would be nice to hear of how normal people’s lifes with ms are for a change & not the negatives. It would be nice to make a list of all the normal things people with ms do & how it doesn’t rule your lives & how things have or haven’t changed for you since having ms. I think as an undiagnosed person, you either think big time disaster or no its fine, it’s one extreme to the other. I think when your undiagnosed to be honest you don’t understand enough about it and you imagine how it’s portrayed in tv.
Have you ever had a browse in Everyday Living? Yes, you will find some distressing stories there, because some people only post when they’ve had a serious problem. But interspersed with that, you will find accounts of day-to-day lives that include jobs, families, holidays, children, pets, etc. etc. etc.
I will not embarrass them by naming names, but I can think of one or two posters, in particular, whom I know to be quite profoundly affected, but still lead quite busy and optimistic lives - regularly reporting on their holidays and outings.
Not everyone will become severely disabled, but even those that do don’t renounce all claim to a normal life.
Hi I was diagnosed 9months ago so I do not have a lot of experience of living with MS so far but I decided to be positive from the start. I am 28 years old and have so much more I want to achieve. I completed 12 weeks of physio to get me walking normally again and now have regained my strength and am back going to the gym and I go to a weekly Pilates class. I don’t feel that MS has changed the way I live my life apart from if I get tired I rest now where as before I wouldn’t have. I have seen from this website that everybody’s experience of MS is different and maybe I have been fortunate so far but I feel that being mentally strong makes all the difference. I personally decided that for as long as possible MS will not stop me living my life. Hope this helps Charlotte x
I was dx 12 mnths ago,and had residual symptoms for the first time from a 6 mnth relapse.
I was then deemed eligible for DMD. Positive no1–I could feel like I was fighting backand haven’t relapsed since.
My work decided early retirement was my only option and retired me at 44, as never able to work again. (ATOS deemed me fully fit for work ) Positve no 2—my garden was amazing and I grew all my own spuds/salad and veg.
Although my kids are grown up they love the fact there is a house maid,and the phone isn’t constantly ringing in the middle of the night calling me in to an emergency. Positive no 3 – you can order anything off the net and know you can be in for delivery.
Yes my distance walking has been affected which was a pain as it did limited days out,xmas shopping etc. Positive number 4 my ms nurse contacted wheelchair services,they came and measured me up and built me a bespoke chair (called Gertie) and wherever we want to go and for however long we want I can do it.
I generally push myself if its flat as its a good workout and people can walk alongside and then its usually me that cooks afterwards as everyone else is exhausted.
I have struggled with boredom and feeling lazy during the winter as I hadn’t got the garden to do.I also have 27yrs of training in care that was stuck at home with me so I have just signed up to volunteer with a local live at home project. Positive 5 —they are not fazed about my ms and are grateful for anything I can do when I can do it. Win win.
The mind is a wonderful thing,even when there is a mouse chewing the wiring,you soon adapt to the new you usually without noticing. The only person who can put the stop sign up is you,so as long as you still go for all the things you want there is only you who could prevent it from happening.
Fab post Pip! So nice to hear xx
No one is going to say life doesn’t change and that you don’t have to adapt to it…but doesn’t it anyway ? Having children, changing jobs, moving house etc these are all huge changes that people adapt to successfully and positively. Some changes are positive and some aren’t so good but that echoes life generally too. The way I see it, life is for making the absolute most of every moment and individual people have differing levels of what that most is depending on their personal circumstances. Ask Stephen Hawking. Granted it took me a wee while to accept my new circumstances and I’m sure there’s a way to go but I refuse to let this dictate a lifetime of misery, buts and what ifs. Xx
These posts are so nice to read! I guess forums like this are mostly frequented by people who aren’t having the best time and need advice and support, so the posts are often (but not always) showing the hardest side of dealing with MS. I for one tend to ‘disappear’ when things are going well, then pop up during a relapse or when I have niggling symptoms. I was diagnosed in April and literally have no choice but to carry on as normal! I have a four year old (five on Monday!) and a three year old who are just not ready to become independent! My hubby is very supportive, but he works full time with an hour commute each way, so day to day it’s up to me. I don’t work (I was lucky enough to have that choice financially when I had my boys) and sometimes I think working would actually give me a rest!!! I have no intention of giving in to this illness. In fact, I will actively fight and do everything I can to make sure life is all it can be. Yes, it may take some adaptions, but as my best friend said…life is unpredictable - you could be hit by a bus tomorrow or be diagnosed with a life threatening illness, MS doesn’t mean life is over. I will continue to live my life as I always have - maybe just eating better and staying fitter - and hope for the best! We’ve already booked two holidays for this year, last years holiday showed me that heat doesn’t cause too many problems for me, so we’re going abroad for longer this time and I can’t wait. PS my nan had MS and went 30 years with no problems at all, and only later in life started deteriorating (not helped by having Breast cancer as well). So make every day count! X
PS, I meant to add that although I was diagnosed in April, in hindsight I can trace symptoms back about 7-8 years!
Hi I was dx 10 years ago, aged 32. I try to look at positives. Life has changed a bit, I now use a chair when outdoors . The positive side, I am now a giant shopping basket when shopping with bags on my knees. I still work (34 hours a week over 4 days) - the positive is long weekends every weekend. I enjoy more leisure activities- the positive is cheap tickets for sports & concerts as ‘carer’ goes free as use wheelchair. My true friends are still there which must be a positive. Yes, there are bad times, I won’t lie, but I have what I have and do my best to carry on. Take care Neil
Hi Anon x
I felt so sad when I read your post - it’s a very scary place we are in and ironically when you are ill you are at your most vulnerable and lack the strength to fight back x
I’m not diagnosed - but my life has changed dramatically anyway because of this illness - whatever it is it doesn’t need a label to do that!
In September I got made redundant from a well paid job - a job I loved and had spent years building up to - what made it worse was despite all I had given - it was made plain that it was because I’d had to take 4 months sick leave during my last bad ‘relapse’ (even though I might add I continued to work from home almost the whole time!)
Anyway what I’d like to get accross is that once I’d got beyond the hurt, panic, fear and devastation that it caused - I picked myself up (not literally!) and decided to become self employed - I took a good look at what I was best at, what I really enjoyed doing and what I could do from home. I never want to be in a position where an unsympathetic employer could do that to me agin!!
There are 3 elements to the business
A Consultancy (up & running & ticking aong)
a niche Recruitment Agency (in th epipeline)
and the very very best bit of all…
- An online gallery!!
Number 3 is something I absoulutely love doing and is taking off a treat!
I don’t know if we are allowed to put links to our own stuff on here - but I’m going to anyway - and sod anonymity!!
I don’t care who knows who I am in ‘real life’!!
Here’s my brand new new artwork website!! and I’ve got a facebook page too - I’m doing a Drawandpaintathon 2013 - a drawing/painting a day for the whole year - so 365 and I’m on week 5 !! or if anyone just wants to make friends!! It seems to be the Portraits I’m enjoying the most
So Anon - I just wanted to show you that no matter how low we get - there is life after ‘Whatever’ xxxxxxxxxxxxxxxxxx
I’m also undiagnosed and have had panic and depressive moments but have decided this illness won’t beat me. I’ve had to make changes to my routine but have found new ways to do some things, like using a mop to clean my bathroom tiles instead of a cloth for example, and have found new hobbies like knitting and sewing or listening to talking books as my eyes have been affected. It all seems pathetic when described here but I get so much pleasure when I make something new and the library is a wealth of ideas and costs nothing. As mentioned in the other replies, life is definitely not over. Please don’t let this get you too upset, as mentioned above there are always people on this forum who are willing to help or even just “listen” when you need to rant.
Its such a difficult place to be, i compltely understand where ur coming from.Im also undiagnosed, and i agree yes of cors there are bad times, especially being in ‘‘limboland’’. And trying our best to adjust and change our lives to fit around our new selves is the best thing to do, wotever is is big or small, finding new ways to do ‘‘normal’’ things, like the way we do our jobs, look after our kids, cleaning, cooking, etc, shopping, do new hobbies, there’s always a way we are quite amazing as human beings to adjust our lives wotever life throws at us, illness, bereavments, jobloss, etc. And yes we read on here abt the tough times ppl have whether undiagnosed or diagnosed, but reading other peoples experiences is so inspiring when u find yrself in a dark place. I love hearing abt everyone’s experiences of adjustments thinking that such a good idea. Min it doesnt sound pathetic wot u r doing, sounds lovely to me hun, its gives u great pleasure and thats the most important thing. Jenny u have done amazing with starting 2 new business’s and Im lovin yr art, absolutely brilliant, especially love yr portraits, would be proud to have any of painting/drawings on my wall :). I used to draw and paint, at one point when younger i was never without either a paintbrush or pencil in my hand. Then life happened hehe as it does and i just stopped, keep thinking id love to take it back up, ( so far my weaker side, gripwise etc is my left side, so i could start painting/drawing again) Makes me feel inspired seeing and reading abt any artists, or anyone that does any craft really.
Sorry abt going slightly off topic and for waffling !!
This forum is an amazing place with so much advice, support and friendship and is so wonderful knowing we aren’t alone and there’s always someone who will listen
All the best to u anon
Since diagnosis (and in no particular order!), I’ve taken up old hobbies again (e.g. ballet, going to the gym, knitting), passed a couple of ballet exams, taken up new hobbies (e.g. martial arts, Spanish, writing), travelled to various places around the world, made new friends, done some mystery shopping, become a martial arts coach and referee, dealt with various family problems, become a mature student, set up my own business, hosted lots of parties, seen my kids grow from young children into young adults, helped my daughter move into her own place, learned how to balance on a wheelchair, got two degrees, tried to help newbies and limbolanders, become a lecturer and tutor, relearned GCSE Maths (working on A level now :-)), got more involved in ballet groups,…
Life with MS is different than we’d expected, but it definitely isn’t over. And it really can still be good.