November 10, 2016 at 2:08 pm #144256Work
I’m a trained children’s nurse and at the moment I am able to work I absolutely love my job and I can’t imagine doing anything else but I know that in the future who knows how soon I’ll no longer be able to practice as a nurse in the clinical sense I just don’t know how to prepare for this.CHMParticipantPosts: 0Joined: 09/11/2016November 11, 2016 at 9:02 pm #144293Reply To: Work
I’m a trained children’s nurse and at the moment I am able to work I absolutely love my job and I can’t imagine doing anything else but I know that in the future who knows how soon I’ll no longer be able to practice as a nurse in the clinical sense I just don’t know how to prepare for this.
I still work but dont have a vocation and a job I love like you do. I enjoy the Independence and financial security it gives me but being a nurse and making a difference is special.
Only thing is I can think of sharing that may help is the fact that my job has changed with me over the years, as my MD developed. You have valuable life experience as both a nurse and having MD.
You have soo much to offer in the future even once the physical aspect of nursing gets hard.
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010November 11, 2016 at 11:23 pm #144294Reply To: Work
Hi, I have an unspecified type of Limb Girdle MD and work part time. I am a Teacher of the Deaf and work in a primary school with a provision for Deaf pupils. I no longer “teach” as such due to my reduced mobility. My role is now purely assessment and working upon data. The children come to me for assessment. Your place of work should make “reasonable adjustments” so that you cam continue working. I suppose it could be a change of role, as mine was. I was a class teacher for 15 years and a Teacher of the Deaf working with small groups for nine years before changing my role to purely assessment. I now work three days, which is plenty. I’m sure that your will find another suitable role within your profession. Do post any news.
Shevvyshevvyt1ParticipantPosts: 0Joined: 16/11/2013November 12, 2016 at 2:22 pm #144298Reply To: Work
Hello and welcome. What a valuable person you are, and you should always remember that. Someone who cares for children and loves her job, so very few people I think can say the latter nowadays.As has been said by Cat above, you have a vocation, which is rare. you have the knowledge you learn from having MD and the adaptions you make to deal with it. I have no doubt you will find a place where such valuable skills can be used.
You did say that you do not know how to prerpare for this. none of us do, whether with MD or without. You have to deal with it as your life goes on, looking at what is possible and what is not. I spent 33 years in the nHS in a job I loved. AS soon as I got hit with MD they ‘retired’ me. Was it the end of the world? No i retrained and used my skills elsewhere. Shevvy also made an important point. If you stay in your job your employers need to make reasoanble adjustments for you. That can be as small as giving a you a lower locker if you were in a wheelchair to a major scheme funded by the government, to put in ramps or widen doors etc.
The one thing you must not do is be pessimistic. You will have lots to offer throughout your life. It is for you to chose who will benefit from those abilities.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015November 12, 2016 at 9:55 pm #144301Reply To: Work
yes as Mike and shevvy say lots of steps and adjustment to help along the way. like alternative work patterns. the Govs ‘Access to work’ program.
I have got help via the ‘Access to Work’ program for
1- Taxi travel to work
3- automatic doors at work
4- riser toilet seat at work
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010November 14, 2016 at 5:43 pm #144407Reply To: Work
I spent 33 years in the nHS in a job I loved. AS soon as I got hit with MD they ‘retired’ me.
Hi Mike, sorry for jumping in here but you hit on something that worries me. I’ve never been 100% honest with work about my health because of this reason. Can they really make you leave? Do you mind me asking what happened as I work in the NHS and love my work.
– Also Welcome CHM, I worry about this too, not much help to say but hope it makes you feel a bit less alone. This is a great place to chat and ask for advice. Best wishes.croissantParticipantPosts: 32Joined: 29/10/2015
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