Just joined this site about a week ago and have enjoyed reading some of your threads so decided to take the plunge and introduce myself.
I was diagnosed with RRMS in Sept this year so just coming to terms with the diagnosis, I haven’t been back to work for a year now and will be making some big decisions about that in January 2013.
I have a good Neurologist now first one was a waste of time, and I like my MS nurse who is very approachable. I am seeing a counsellor arranged through occy health.
I am trying to take each day at a time and like everyone else with this disease no two days seem to be a like with regards symptoms. I am a Nurse myself so I think that is a mixed blessing however I am re-educating myself on the subject.
I do go to the local MS support group and have benefitted from that. At the moment it is my husband who is having problems adjusting to the diagnosis, I saw my MS nurse the other day and she printed the MS fact sheet on Cognition off for me.
I am hoping that hubby will finally get some insight and understanding on why I have concentration problems “brain fog” some days and at other times I am alert and back to normal. It causes a lot of problems and arguments because I forget to do things. I now write lists for shopping, or things I need to do that day I keep two diaries one for appointments and the other for my MS symptoms.
If anyone out there has any other tips on coping with cognitive issues I would appreciate it.
Hope to get to know some new people who understand what its like to live with MS soon.
Cog fog is the bane of many peoples lives I’m afraid. One tip is to accept very early on that lists have to be made whether you feel with it or not. You may be half way through something when the mist descends.
Tick things off the list when actually done,and if it is a list for going away do another one for the way back…my ice pack has been through the royal mail many times.
Mobile phones are brill for pill and other such prompts as are pill boxes so you can check if you have taken your pills or not.
My main issue is not remembering when I have done something,and triple lots of pills is not good for the system.
Make sure your family take responsibility for adding things to the calendar…my mantra is if its not on the calendar its not happening. I check it many times a day.
The last and saddest thing may be the loss of the ability to multi task…I was a care home manager so I know what its like on a shift and you are doing 3 things at once. I still havent reached acceptance on that so many things are left half done,they dont make a list see as you think…oh I will just fill the washer while the washing up bowl fills…washing stays in there until its on my list to do some!!!
The ms trust do sheets on tips for dealing with it aswell,people add their own ideas to it. While it can be a pest it doesn’t really make much difference to life as long as people are aware of your difficulties. You must be honest with yourself in your work role though and accept other people telling you when they notice if does impact on your role,because of safeguarding issues.
Take care and remember its what works for you that counts…and remembering to use them!!
Cog fog as Pip says is a bane for many of us, I too am a nurse, been off work since April and also as Pip says, multi tasking which used to be my norm as a working mum is a nghtmare now, but the lovely people here are full of tips, knowledge and experience!.
That’s great you have a good MS nurse, mine is fantastic, I email her loads and she’s always there when I need her.
My husband took what seemed like ages to accept my RRMS diagnosis but he now administers my Copaxone inhjections in my hard to reach areas, i’ts a biggy to accept and live with and an ongoing challenge bigtime!
Keep coming on this site, post as often as you want, ask anything you want, they are wonderful here, helped me a lot.
Hi Juanle, am a paediatric Nurse with a sideline of Medical Devices Nurse Practitioner Role. Fortunately this latter one keeps me busy enough without going to the wards for clinical work, so can manage my hours to suit (and with managers permission). With this have managed to carry on, full time, only one sickness day as well! Am able to pace myself ok as well!
I did put it to the Forum people to have an NHS workers set up thread, so wait and see!
I have to work on lists as well, even though most I remember…
Hi guys, I’m kinda new to the siTe as all. Not been dx yet, but had MRI last sat, and neurologist has said next its the LP. My brain fog is such that even if I set an alarm by the time I’ve turned it off I’ve forgotten what it was for, I’m so fab at forgetting stuff if it was an Olympic sport I would win a gold medal. I’ve found my iPad to be a god send, I’ve downloaded a few apps, but the one that I’m finding really helpful is one calle Evernote ( it has an elephant as the loga kinda thing ) I can sync my work pc, my iPad and my phone, and I scan stuff in so I’ve got it everywhere. Admittedly I am still working on how to remember what I put in which bit, but you know small steps and all that… . . . . Now then, where did I put my phone. . . . .
Thanks for all your welcome comments and advice, early days yet but I normally have a good sense of humour and always try and see the funny side of a given situation.
I do find multi tasking harder than I used to, varies from day to day but just try to complete a task at a time and tick it off my list. I liked the comment “if its not on the calendar its not happening” good advice as I do use a calendar so my family will also have to take responsibility.
Fatigue is another hard one but you learn by your mistakes do too much and you pay for it the next day or two. I do take a nap in the afternoon if I can, and pace the house work out with my husband. At the moment I am back to nurse mode because he is ill and under “house arrest” from the doctors.
Unfortunately my husband has an auto immune disease himself that comes out of remission if he gets a chest infection he has pulmonary sarcoidosis. It is 2 years since he was this poorly and last time it was 6 weeks before the chest infection went away. Poor love is on 2 lots of antibiotics and high doses of steroids and hasn’t been to bed for 2 weeks because he can’t lie flat he just coughs and chokes if he tries to.
Role reversal in our house he is currently worse than me, but I am managing to cook, normally he does because cooking is a hobbie of his. Keep on top of the washing and ironing, shopping, and house work spread out` over several days, where once I could have done it all in one day!!
Rome wasn’t built in a day as the saying goes and there is always someone worse off than us so my motto is “adapt and move on”.
My memory is now my phone and my laptop. The trick is to remember to set alarms that have labels attached to them rather than just a bell going off. Of course that doesn’t stop me switching the alarm off while I’m in the midst of something and then completely forgetting the thing the alarm was about. Just as well none of my pills have to be taken at a certain time!
There are some really good booklets that you can download from here and from the MS Trust website. There might be something that will help your husband too. He’s got plenty of reading time just now after all!