Last reply 1 year ago
Diagnosed on Friday- First Aid ideas?

Hiya. I am in the newly diagnosed category. I will be starting DMT Tecfidera in the New year. Its on order already. I am still not feeling much apart from “Well this is MS – not ME!!” I am still getting on with all my chores, laughing and joking as normal. 😉

Now, I am thinking of developing myself an ‘MS First Aid’ box/kit. This will hold everything I think I may need should I have a relapse. The sort of things you wish you had when things flare up at the weekends or when I cant get to the shop/GP/hospital.
So what would be on your list? eg…..Paracetamol, Brufen, a few inco pads, antihistamines, a good book, tissues, aromatherapy oils ???
What would you avoid or advise against using?
What can I ask the GP to prescribe prophylactically? (when I am at a low ebb, I am prone to cramps spasms, pain, numbing tingling, uncoordinated) I am most fearful of the spasms.

I think I will have a grab bag ready for any emergency trips. Saves faffing around.
Emma T x

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nutshell88
1 year ago

Hi
Consider MS a pet lol companion. I was daignosed 2005 I was 17 thats first relapse second relapse 2010 i fibished university went to US Egypt UK returned 2015 worked and studied there and here im working i dance run do however snd get relapse once a year its quiet friendly in my cade. Maybe its in your brain now. I believe it causes depression which ive never had and anxiety ect and get worse when we do feel deppressed and worrued. Life is repeating itself enjoy each day to tge fullest its it never kills thats the best thing about it. And its silent and invisible still no one in my life knows i have ut 😉


stumbler
1 year ago

@pikilily , that’s a pessimistic attitude. The normal MS management strategy is to try and avoid future relapses, not plan for them like a summer vacation. The Tecfidera should help you in this respect.

My personal first aid kit would comprise of a picture on the wall, which announces proudly, “You are important. Be your Number One priority”

So, learn to “listen to your body”. Any neurological signs of MS activity should be your notice to throttle back on your present daily activities, rest up and, dare I say, pamper yourself. Then, wait for the storm to pass.

So, lead a balanced life. A healthy, balanced diet with a balanced lifestyle, not too many highs and lows. And, avoid all stressful situations. Your health is more important than most issues.

Just take care.


pikilily
1 year ago

Hi – @stumbler…sorry, definitely not meant to be pessimistic, I was thinking proactively about the first aid idea. I am really most positive minded, however I do feel more comfortable if i have as much to hand as I may need, in any eventuality. I have an ordinary first aid kit in my car, just in case its needed if I am out and about…..not because I am driving about worrying that I may come across an accident. Its partly my training as a nurse. Always know where the emergency kit is, where the fire exits are etc. I also used to work in anaesthetics and we would NEVER, EVER, start a case without emergency drugs ready drawn up and sitting immediately to hand. In the time I worked in anaesthetics we only had a couple of emergencies requiring these drugs…but there was peace of mind knowing they were there!

I have reread the bit about this is MS not ME…perhaps that reads poorly. I think that it is a positive attitude. I am ME, I will not be defined by MS..maybe that is a clearer expression. I am happy, feel positive, that I have a diagnosis and therefore can move forward. After a year in limbo, I know what I am dealing with. I know that with DMT, and a few lifestyle changes, I have the best chance of living well with MS.

I am currently the one reassuring all my friends and family, giving them support and information to help them come to terms with what may be ahead. LOL. They are more worried, frightened, or concerned than me!!!

So I return to my First Aid idea. I want to be independent, not to have to trot off to A&E if I have a relapse. (The nearest A&E is 15 miles away, and we have no buses here either so I possibly would be able to trot anywhere!! ). So anything I can have to hand that would make things easier is going to be a benefit. My husband is often away overnight ,or abroad, (at the moment he is in China) so I am completely alone looking after the animals (which IS my idea of heaven!!! I love the space and solitude).

Honestly, I am happy and content.
Emma T x


stumbler
1 year ago

@pikilily , Emma, I think it is me that owes you an apology. That was quite patriarchal of me . I’d just got up, that’s my excuse.

But, yes, you are quite correct too. “Fail to prepare, prepare to fail” is the pertinent expression.

The other pertinent expression that you were alluding to and which we MSers use is, “I have MS, MS does not have me”.

I’m intensely jealous of your idyllic lifestyle. The Southeast is too overcrowded and unfriendly. 😉


suebear
1 year ago

Hi @pikilily
I started Tecfidera in April – I read all the “side effect” information, took myself off to Asda and bought medicine for diarrhoea, for sickness, for basically everything…. and I haven’t had any!! I only take antihistamine to reduce the flushing. As for relapses, you’ll know when you’re having one, and I shouldn’t worry – if you look after yourself day to day properly, you’ll have enough on hand for a relapse – rest is key, so a good book might be handy! I felt exactly the same as you with my diagnosis in March; I knew a little more than a newbie as my Mum has had MS for 47 years – I’ve just gone through (last month) a period of “angry”, which came after the initial “MS is not Me!” – which my MS nurse has been absolutely brilliant (she knows how to “discuss” things!!) – and I would encourage you to go to the seminars that are organised for newly diagnosed, and to chat on here – I find this easier talking to people who know exactly what MS is, rather than people other than my very closest friends. Here if you ever want to chat
XX


potter
1 year ago

One of the first things I would do is get a appointment with a physical therapist. I had awful leg cramps before I was diagnosed, but after working with a therapist they disappeared. I still do the exercises she gave me, ones from my foot doctor and a little Tai Chi. The only time I have leg cramps come back is when I can’t do them for awhile. A physical therapist will keep you walking and in less pain. Potter


pikilily
1 year ago

thanks guys, keep the ideas coming!
Its all being absorbed !!

@stumbler I was going to post some photos of my idyllic homestead…saying how could anyone be pessimistic with a view, and space like this, but i don’t want to put you into a flat spin of greenness !!! LOL.
Emma Tx

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