I have been diagnosed for about a year now so don’t know whether I still fit into the bracket of ‘newly diagnosed’.
However I just wanted to share my experience. After being diagnosed, as well as it changing my perceptions on life, I also started nursing. I love it so far and have nearly finished my first placement with no problems. I experience no symptoms at the moment so I’m so lucky. I am realistic about my disease too… I understand I’ll have to move into a less demanding role as the years progress. But I didn’t want it to stop me.
I just feel like I need reassurance that I’m not being totally stupid for expecting I can go through this degree without having problems. I feel fine, and like I’ve heard people say, it’s like they got my diagnosis wrong. I sometimes feel like what am I doing? I want to follow my dreams but don’t know what’s going to happen to me. I sometimes feel stupid for doing nursing. I couldn’t imagine doing anything else though. I’ve been on tecfidera since last August.
It would be lovely to speak to others who are nurses with MS. I recently saw the front of MS matters with Craig Hopkins, and would love so much to speak to him being he is in a similar position.
I was told I ‘probably’ had MS when I was 20. Symptoms that I had disappeared within a few months of that so I carried on like there was nothing wrong. I have been married (and divorced) twice and i’ve had three children. I’ve always worked. I studied with the Open University to Diploma level. Two years ago I did a 5k race for life.
I’m now 56 and it’s only over the past twelve months or so that i’ve been having problems. Thinking back I am sure I have had odd symptoms now and again but they never lasted long and i’ve always put them down to other things such as having a virus…or hormones.
MS is obviously a very individual disease and i count myself lucky that i’ve had an easy time of it so far at least. As for what tomorrow brings - i’ll worry about that tomorrow (actually i’m having my LP tomorrow so perhaps I will worry just a little bit ;-))
Carry on with your nursing and I hope you’re as fortunate as i’ve been.
You must pursue your career and you are certainly not foolish to do so.
I am not a nurse, however I would advocate that you consider the following. Make sure that you belong to an union, although i suspect you have already done so.
Try not to anticipate problems but, should you ever find your work a problem because of the MS, remember that your employer has to offer you an occupational health assessment and make ‘reasonable adjustments’ under employment law to enable you to carry on with your career. Fatigue is a common problem, as I’m sure you are aware, and can play hell with shift work.
This is not meant to sound negative but worth remembering for the future. I am 62 now and took early medical retirement last December. My employer had been very fair and made all the adjustments I sought to enable me to work for as long as possible.
You sound very level headed and i wish you the very best with your worthy career.
i was feeling pathetically down yesterday and could not bring myself do do my nursing studies and essay. But now I’ve started it and learning eagerly about schizophrenia! I will learn to listen to my body and am joining unison today. I’m not sure what they do though…
It’s so nice to talk to other people on here with MS. I hope you’re all well.
I’ve only just read your posted asking if there are other nurses (after replying to the comment you shared with me on the other feed). I’m pleased to note that you’re also studying mental health, that’s also what I do. I’ve been doing it for 8 years and I still love it. Keep going my work has been supportive and I think helping others to be positive in my role really helps me too. As I said before I’ve been diagnosed for two and a half years, I’m now 34. Still I had very slight symptoms since I was 27. The big relapse I had was caused by extreme stress levels. I reckon if I’d kept those down it wouldn’t have ever happened. I’m just much more careful when I begin to get stressed now. If you’d like to keep in touch please do
Unison are there to protect your terms of employment, including the negotiation of pay rises for you. They will also support you should you receive a complaint, heaven forbid, from a patient or relative. They will also help you speak to management should, at a much later stage of course, you need to make adjustments because of your MS. It is like a big comfort blanket, although it does appear expensive.
Take a look at their website.
I am glad you are feeling better. I remember reading ‘The Divided Self’ and ‘Self and Others’ by RD Laing many years ago, on the subject of schizophrenia and its treatment. Is Laing recommended reading now?
Our uni hasn’t mentioned Laing, but I will give it a read! I am always watching programmes on TV about criminals and murderers but still not sure which branch of nursing to go into !
I doubt it. It think it is considered poor form in mainstream medicine these days to draw attention to the uncomfortable fact that mental illness continues to be diagnosed by behaviour/conduct but treated biologically/pharmacologically!
In my opinion you should do stuff normally as long as it is reasonable to do so. Make the most of the good stuff and only be worried about “actual” circumstances. It is smart to be aware of what “might” happen but I would NOT let that control your life.
I was diagnosed with RRMS in 1991 and when circumstances happened I made adjustments and changes as and when necessary. After time off for serious relapses I got back to working 100% normally (I guess the cards fell positively for me) I moved into SPMS in around 2006 (looking back I can see why my skiing was so bad !) I had great support from my MS nurse a good neurologist and considerate employer. We made changes as appropriate but I continued being a contributing employee right up until I had to retire (due to the MS symptoms) in Sept 2010 so 19 productive years. So I think you should follow your dreams and deal with stuff as and when.
When I read the books, about 35 years ago, I was dumbstruck by the clarity of the model of ontological insecurity put forward by Laing. The division between the inner and the outer self made perfect sense.
However, I could make no sense of the medical model and its synthesis of 19thC European medical models promoting those four types:
Dementia praecox, hebephrenia, paranoia and catatonia.
These have stayed with me all these years and I could remember them without the help of Professor Google. I felt I had to add that disclaimer.
After graduation, back in 1975, I spent a year or two working in a psychiatric hospital, which I won’t dwell upon. However, I did a bit of reading, not just of the textbooks, but Freud, Jung and Laing. Those experiences were very formative for a naive chapel youth from Wales who had lived a cosseted life up until then.
Coping OK at the moment despite numerous issues - struggling to not swear too much in my conversations with my symptoms!
Being positive does seem to help although it can be valid / important to allow myself occasional “miserable / sorry for myself” time, but I do like to see the silver lining when possible.
The “bad or not so good stuff” helps me to appreciate the “good or not so bad” stuff