mamawals 13/06/18
Last reply 2 days ago
Tips and coping mechanisms?

I’m a planner so being diagnosed really has me thinking about what I need to do long term to minimize the impact of MS on my life and family. Do any experienced MSers have any tips?

For instance, I live in a two story house. Should I be saving money and getting the house ready to move to a one story in a few years?

I’ve started using apps on my phone to write lists for EVERYTHING, a calendar app for the whole family, and the note app so I don’t forget anything. I also have a notebook I use at work and as soon as I get back from a meeting I write an email to everything reiterating what was discussed so I have a record I can keep to refer to again. I’m also trying to figure out how to make my house more oreganized so I don’t lose as much stuff! Any other tips for not losing stuff or locking myself out of the house (again)?

I have an appointment with a neurologist who’s an MS specialist in a few days. Should I ask for a standing prescription for prednisone in case I have a relapse on a weekend, or can’t get off work to go be seen right away?

I’ve applied for VAhealthcare benefits again (recently got off active duty), and am working on getting my medical records together to file a VA claim. Any tips for that?

Anyway, any tips on how to organize and plan my life around this would be really appreciated! I’ve really liked reading the posts on here so I have a better idea of what to expect so Thank you!

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stumbler
1 week ago

Hi @mamawals . I’ve just read your profile. You thought you were getting old and stiff! At your age! You’re in your prime. 😉

Anyway, in a way it is wise to “prepare for the worst and hope for the best”. But, the MS landscape is changing. MS is no longer the disabling condition that it used to be. There are now treatments available that slowdown, or even stop, the progress of our MS.

There should be no need for a standing prescription for Prednisone. I would hope that you weren’t allowed one, as Steroids should be used sparingly. Anyway, a relapse can only be identified after 24-48 hours.

As for tips and life hacks, I came across this webpage recently, which had quite a few good ideas, not that you would need them all now:-

https://multiplesclerosis.net/living-with-ms/life-hacks-msers/

This Forum has also had some shout-outs for these types of ideas. Use the Forum Search Function (magnifying glass, top left) and search for “hacks”.

I’m sorry, I can’t help with VAhealthcare benefits claims. I’m in the wrong country, but hopefully our American members may be able to advise you.


wobbler
1 week ago

@mamawals@stumbler is right about steroids, they are detrimental to your already battered immune system. I use them as a last resort and stop immediately when I see improvement.

Another thing you should look into if or when it becomes necessary, is contacting your local authority about aids around the home. I have had bathroom rails installed and have had a bannister put in place in my garden to help me up a small set of stairs. Stair-lifts can also be provided by them in some cases.

A chat with an occupational health adviser may help you discover further levels of assistance that you may have not thought of. You can get a referral to see one from you GP or your neurologist.

Remember… If you don’t ask, you don’t get.


vixen
1 week ago

Hello @mamawals. I think you’re quite newly diagnosed, right? I would say good advice is what happens when people suddenly win money; don’t make any decisions until you are completely to grips with your diagnosis, and comfortable with your day to day life. As you make lists, make a list of the bare minimum things you could get away with doing on an off day. I start my working day with a list in my diary of the absolute minimum that needs to be achieved by the end of the day, or the week, and build on that. I am OK at the moment moving around. But, me and husband are going to move soon and are looking for an o-stairs option. It’s not for now, but that in future, if I find stairs difficult then I’ll be sorted. You could maybe ask for an Occupational Health Assessment at work to look at ways to improve your capacity for work.

I would also say that the best way to prepare for a relapse, is to guard against it! Do whatever it takes to keep stress levels at a minimum. Exerciseas often as possible, but within limits. Never over exert yourself. And our greatest enemy is stress, whether mental, physical or emotional. So, you gotta minimise the risk of stress occurring. If this means avoiding being around negative people, then so be it.

Good luck with your onward journey! 🙂


sagecat
1 week ago

Good morning,
Half of my journey has been on a gluten free diet. I found out I was celiac 10 years ago, then came across research to suggest it’s a cofactor in MS symptoms.


grandma
1 week ago

We are so lucky living in the UK, I have just had a ‘through’ lift installed in a 2 storey house and a ramp at the front so
I can get the electric wheelchair and the mobility scooter in all paid for by the local council whose mission us to keep people in their own home, I have lived in this house for 42 years and they are carrying me out of it in a box!

Next question, how mobile are you, how old are the kids, do you like your house, I mention all this because a) if your mobility is ok, don’t worry about it until it happens. B) are the kigs going to be leaving in the next few years, then you will want a smaller place and c) do you like your house, the neighbourhood, do you want to stay? All these have to be taken into account so don’t go jumping the gun.

The biggest difficulty we have is we’re Brits, so don’t have a massive knowledge of how the US system works and .I understan each state is different, but there are quite a few U S citizens on this site and I’m sure they will help you out😍
I


chezy17
1 week ago

Hey.

I do write things down on a calendar because if it isn’t on there, I will forget lol! Don’t think it’s an MS thing, more of a huge mental load of being a mum and working 😂😂!
As for coping mechanisms and planning, I don’t plan, I stopped planning and I just kinda go with it! Surprisingly, some of my best moments are when I don’t plan and I do something on a whim 😊. No point in thinking what if or could be as no-one really knows how their life with MS will pan out, you kinda just gotta go with it!
Take care. X


potter
1 week ago

MS can be so different from person to person, I had two aunts that MS one was in assisted living at age 32 the other was still getting around with a cane when she died at the age 75. I was having trouble with the stairs in my old house but didn’t know why, I hadn’t been diagnosed yet. We built a new house with one level, our son had moved out so it was perfect timing for a smaller house. We do have a unfinished basement to hide from tornado’s in after all I live in Kansas. I am sorry I can’t help you with the VA, I would definitely start making some calls. You need to hide a key too your house outside, don’t get one of those fake rocks that is the first place thieves look. I use to work 90 hours a week and go to college part time and raise a teenage son. My life was scheduled and written in a notebook, even the roads and driving time was figured in. My biggest challenge was cutting back on everything. I am finally getting to that point but it has taken me 11 years. Don’t get stressed about getting organized and prepared for anything that can happen. You need to learn how to take it one day at a time. Potter


mamawals
1 week ago

I live in the US. We have barely any assistance here. I’m also the main bread winner and have three kids under five. Which is why I’m stressing out and need to plan as best I can. The MRI costs alone are ridiculous. My doctor sent me for one, which showed a couple dozen lesions consistent with symptoms I’ve had for years, but now wants one of my spine too. I’m trying to get signed up for healthcare through the Veterans Administration to help with MRI costs but until then I can’t get anymore. Of course that mean taking one of my four days of leave. I asked about the prednisone because I’ve had several episodes of vertigo over the past couple years, lasting about a month each, and I found having Zofran and motion sickness medicine on hand helps. For one of those episodes a doctor gave me prednisone and that episode didn’t last as long. I don’t have any sick leave for another six months because I had a baby a year and a half ago and am still paying back the six weeks of advanced sick leave I took for maternity leave then. So I need to do whatever I can to ensure that if I have more symptoms that I can still go to work. The past two years, in addition to vertigo, I’ve had episodes of numbness, itching, eye pain and blurred vision, muscle stiffness, horrible facial pain, trouble sleeping, Lhermitte phenomenon, and memory problems. And of course fatigue! The memory problems are why I’m writing so many lists. I have an hour long commute in really bad traffic so I’m trying to switch to a job closer to home. I’m so tired, between work and the kids, that I haven’t been working out. Which is crazy because I used to be in great shape but over the past five years between pregnancies and symptoms I feel I’ve really gotten out of shape. This last episodes, which has been lasting for almost three months now, started when I started running and lifting weights again. And now it’s so hot here that I just want to melt at the thought of any physical activity. As soon as one symptom goes away another starts. First it was my eye, then facial and arm/hand numbness and memory issues, muscle stiffness that comes and goes, then facial and ear pain and some vertigo. I feel like whatever “flare” I’m going through just won’t stop and as soon as one symptom improves another starts. Sorry I’m ranting, this is just frustrating. I’m the one who does everything – I have the higher paying job, do almost everything with the kids, clean the house, grocery shop, laundry, yard work, you name it. My husband has a bad back so it’s all always fallen on me. I’m not sure how we’ll manage if I can’t continue to do these things?


hank
1 week ago

hi, i like most people on here live in U.K. , so things are different, but i and my wife havent moved from our 2 storey house to a bungalow yet on purpose , because the act of going up and down the stairs is benefical and gives me great exercise , i have a handrail on both sides so am fairly safe and intend to continue as long as possible.
wishing you all the best for the future.
yours hank


grandma
1 week ago

Dear Mannawals, so the answer is the kids are small so won’t be going anywhere in a hurry , you can still get up stairs, you don’t mention whether you like your house but you do mention a long commute and your lack of keeping fit in the last year, so

A). You don’t need to move to a single storey but moving closer to work would be a good thing, but it will affects kids schools etc.

B ). Hobby horse of mine, swimming, best all round exercise especially for those of us with ms because it gives everything a workout, fingers, toes, shoulders, legs, arms back, the lot, so if you can’t get to the gym every day, get to the baths with or without kids (could be fun!) once a week, doesn’t even matter if you can’t swim, just walking in the water, skulking in shallow water is as good as it gets if you can’t do anything else.

C). You are going through a huge amounts of stress, STRESS not good for ms, it could be while you are having do many ‘niggles’.

Do your employers know about your diagnosis? I don’t know what the situation is in the USA up there are lots of people in this site domicile there do they should be mines if information for you. In the UK employers have to make ‘reasonable changes’ but that is only in a current employment, if you change it to be closer would it be a new employer? You need to know the rules in your country/state. Good luck with the future and keep posting😍


chezy17
1 week ago

Hey mamawals
I’m also the main bread winner, I’m bringing up my kids on my own. I don’t intend on moving anytime soon, you don’t know where your MS is going to take you, and moving house would probably cause more stress. My advice to you is concentrate on what is important, abit of dust over spending time with the kids, to me is less important. Use your energy for what you actually want to do and don’t sweat about the small stuff, Ms doesn’t stop you from living, you just got to start thinking what’s actually more important. I’d rather spend my energy with my kids doing something than wasting my time on blitzing my house so to speak, it’s all about balance. X


highheeledfagin
1 week ago

Being a lister probably means you’re the kind of person who can recognize patterns, which will be handy for identifying your triggers – they’re not the same for all of us – and which things seem to help. Regular exercise, sunlight, and a varied diet work for me so I don’t tend to do well with prohibitive food regimes but others will swear by whichever one they follow, soon figure out what works for you.
In terms of exercise, Pilates has always been best for me as I often have problems with core strength and balance, which makes exercising whilst lying down perfect.
Some basic vitamin supplements won’t hurt. I don’t go overboard and spend lots of money – UK Amazon actually does some big bottles of Costco’s Kirkland vitamin range for amazing prices.


mamawals
6 days ago

Thanks everyone. I really appreciate it. I’ll stay put for now! I did have one episode a coupe years ago where my husband basically had to drag me down the stairs but luckily that only lasted a couple weeks. Right now I’m good. I am trying to reduce stress – easier said than done! And yes, I’ll still have protections at my new job although I don’t want to tell my employer unless it becomes necessary because I do think it would influence things like bonuses and their general perception of me. Hopefully once I change jobs I can fit in more exercise. There’s a pool near the new office so I was thinking about swimming over lunch. I might also do a compressed work schedule so I have a day every other week when I can go to medical appointments or run errands. I met with my MS specialist yesterday and apparently my insurance is going create a huge hassle until I can switch plans next January or get the medical care coordinated through the VA. He said they keep changing their MRI policy and what meds they’ll cover so he has to coordinate when them before deciding what meds to put me on but it looks like Tecfidera? I might have misspelled that. I’m really not psyched about having side effects for a month but I guess I need to give it a shot. A way, thank you for the suggestions and letting me vent. Have a good Fathers Day!


lightning87
6 days ago

@chezy17 such great advice 👍🏼

No one knows what is round the corner, with or without MS. Live for the moment, make lists if it helps you but don’t do anything drastic until you need to.

It will all work out in the end and if it doesn’t, then it’s not the end 😉

Take care x


grandma
5 days ago

I’m on Tecfidera and yes I had the side effects but all done and dusted in less than a month and havent looked back since (6 mths) and I’m 62 so don’t worry about your DNA, hitting it hard and fast is the way they go these days, and if it stops you having relapses then it will be no bad thing😍


potter
5 days ago

I disagree about staying in your house, once you start a DMT and get your insurance and medical benefits in order you might start looking around. In the mean time have your children run your errands up and down the steps. Most children do not have enough home chores to do. Once I moved into a single story house I had a lot less stress. It was such a relief to not have to deal with the steps anymore. When you start your Tecfidera take it in the middle of your meal your stomach will thank you. I have been taking it for 6 years. Some foods will bother you that didn’t before try to keep record of them. Beans of any kind is what really bothered me. I worked them back into my diet but in small servings but I tend to avoid them. I had Rebif shots for 5 years and I felt like I had the flu the next day, it never got any better. The Tecfidera gets to the point where it doesn’t bother you at all. If you have any questions about it or MS you can PM me. Denice


mamawals
3 days ago

Ha ha I wish my kids could run errands for me! They’re too young. The four year old has a thirty percent shot of getting something but he’s more likely to use the unsupervised opportunity to climb furniture to get into stuff. The three and one year old are a lost cause 😀. I guess a two story house isn’t too bad for now – just annoying when I keep forgetting stuff. I swear I go up and down about twenty times each morning. Thanks for the feedback about Tecfidera. My husband will be disappointed to cut chili out of our regular meal rotation.


grandma
2 days ago

Why are you cutting it Chilli, I eat it, am 62 been on Tecfidera for 6 month and haven’t found anything I can’t really eat yet, life is too short, unless your medical team specifically bans something eat what you want, you are going to die eventually like all of us, have as normal a life while you can😍

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