Hi everyone,
I am a student nurse. Needing to find out more information about PPMS and emotions, purpose and feeling of being worth something. Would love to here what people think about their condition and how this effects them.
Thank you.
Emily
Hi Emily, I’m still not diagnosed but I’ve been in a wheelchair for the last four years. It’s been a learning curve. The feelings of shock at my disability and the fact that i went rapidly to a wheelchair was hard to cope wth. I have to admit the feelings of worthlessness have been harder to deal with than the lack of mobility. Added to that is the constant fight we have for pips and support. I could really cry over situations having a new car and benefits are not what I want. I’d love to be back to normal. I hope that helps. Michelle x
Don’t stress Michelle. I had a car, van, job, beautiful garden, friends & many interests. I had my driving licence taken away, lost my job, my garden turned into a shit tip. Brought my own wheelchair, walker & started taking the medications I was advised. Told I can’t work, had all my finances stolen & face abuse from local dumb idiots on a daily basis. Offers to see shrinks & to join groups of people with none medical issues. Mixing with addicts, gamblers & racist twits isn’t my thing.
I fought to get my licence returned, brought myself a car with my savings, stopped taking medication for a health problem with no cure & started exercising. Eating healthy & going to the places I choose. Being with people I pick. It seems about money, but that’s just the stalking brain dead, jealous of peoples health problems. Very sad individuals.
What you need is to find the right support. The NHS is in a pickle, mainly due to political dribble. If it’s ever good weather, get outdoors & enjoy life. Do something different, to what started the problems. Once the problems take hold, they drag you down.
This forrum is meant for people with MS problems, but it attracts very strange folks with problems not related to Multiple Sclerosis. Message me if you need a friend.
Terry
Hi Emily, it appears you’re interested in the views from members of this forum who have a diagnosis of PPMS.
Please accept that “we” probably have similar emotions, purpose in life and self worth as most other people, including yourself. After all, what is the alternative? There is currently no treatment or cure for PPMS, not yet. Patients are reliant upon research and successful trials.
Depression, pain, stress, uncertainty and viruses are likely to affect anyones’ mood, with and without any form of MS.
My emotions, like many others, change according to situations. My purpose in life is to have determination to succeed. My self worth is self respect. So if PPMS is a monster, I’ll learn to fight it. I can’t win every battle, but I’ll be in the team who tries to win the war.
Hope this helps you to respect your future patients, whether Neuro or any other department
That was very well said Chrissie. You put things so well. I don’t like talking about emotions. I feel bad admitting the sad dayz, but like you said we all get them. Inside I aspire to be postive and happy. I thought only the other day as I sat with a social worker, She was going through a form with me, trying to get more support for Molly my autistic daughter…how I wished I was sat on the other side asking her how it felt and why she needed more support. She was trying to be nice but it still felt patronising. Michelle and Frazer xx Michelle and Frazer
I found ‘Emily’ comments a bit of a mickey take & the poor grammar\poor spelling doesn’t quite tally with Degree level students (for that is what Student Nurses of today have to achieve.
A healthy student nurse should be able to differentiate from effect and affect plus correct the other errors in the post.
Emily seems to suggest our own self worth is low! This could detrimentally affect those of us in low mood.
'Emily ’ seems a new member of very little membership term. I have grave concerns about the ease to post without censorship. Surely we MS sufferers have enough to contend with.
MS was suggested by my Family physician but I knew he was wrong. I come from a large family; very extended - nobody in any generation ever had MS. Besides I am too old; presently in my 60’s & was very active in sports.
My Neurologist sat me down in his office so we could view my brain MRI. Very impressive with these little white lightning bolts heading from the sides of my skull into the middle of my brain. I was impressed until the Neurologist told me the lightning bolts were bad - they were proof of Primary Progressive MS & that no drugs had been approved in Canada to help me. He suggested I research the topic until we met again in early March - and that I quit my 45 years of excessive smoking & drinking immediately! The beer has almost vanished but…
Initial symptoms over the past few years were lack of bladder control, my right foot shuffling when I walked & a lack of balance. I chalked this up to spinal arthritis for which I had surgery last July - and of course, excess drinking. Did not realise I was being hit with a double whammy.
As far as emotions go, no problem on my end since I went through this 25 years ago with my first wife. Scleroderma took five years to kill her; she was as much of a pleasure to be with on the day she died as the day we met. So I just follow her example.
I have another impressive wife & a strong network of friends & family. I may never work again so I find other things to keep me busy & productive. Life is a journey & we all know the destination; I am just going to enjoy the drive.
Chrisie52. I got the impression that Emily wanted information from us more for a few Case Studys for her coursework, rather than because she’s got ms. It’s annoying when new people join here looking for a quick, easy way of completing their questionnaires, college work or to promote their blogs. None of which is allowed by the way.
Hello All.
I have ppms and help my doctors out by allowing their students to speak with me about MS and how it affects daily life etc. I do this as it helps them to understand that their are so many different symptoms to MS. I myself was amazed at what problems a person can have related to MS. I see it as, the students of today are the specialists of tomorrow. I have mentioned to my students that it would be a good idea to find a site where people with MS write. Who better for them to learn from but the people who know what it is like to live with it. We can teach them what the text books cannot. I hope nobody has a problem with this.
Take Care all
Buffy
Hi Emily you ask about emotions when told I had progresive ms my initial reaction was no couldn’t have I already had sle
(Systemic lupus can’t spell third word so wont) for 20 odd years he went on to tell me what the future held stop work witch I did no gardening diy etc you will require a wheelchair .I have a number off meds to take witch seem to help .
Need help Dressing washing grooming feeding etc it was 18 month before I told my wife I have ms I had for a few years become quite a bit more emotional at funerals family illness and things like that someone made the comment that actually
There is nothing wrong with you at a family get together and I through them out something I wouldn’t have done before
However 4 years on I am still walking driving gardening but taking my time doing what I enjoy never in a rush anymore and most important enjoying life as much as I can .Take care.
Emily when I was first diagnosed with SPMS in 2013 I started writing a blog about my journey through life with MS. You could look at that and take some ideas from there, the web site is http://www.amazon-lady.com Regards Deborah
This condition effects us all differently, i myself hoped it wasn’t ms and progressive at age of 34/35 i thought i was too young for this.
some days i wish i wasn’t here that is the worse part but i have a 12 year old daughter who needs me i just wish my walking was better but it just got worse after a uti but i was diagnosed at 35 i am now 37 so just 2 years ago.
Nothing i take helps me so its just hoping something comes out thAT WILL HELP ME.
oops caps not sure if this will help ypu emily but thats how i am feeling at the moment.
Marie x