What's your advice for year 1?

[cjtmn]

I was just reading on another post some commentary about year 1 with MS. I am very recently Dx'd - flare up started Sept 13 & I was just officially diagnosed mid-November - and I am finding this all really surreal.

I would love it if those of you who have experience could share with me your advice for how to get through this first (and second?) year with chronic illness. I'm still waiting for all my Sx to clear up & my life to go back to "normal"!

Thanks,
Cheryl

[sllowe]

Aaaaaaaaaaaaaaa, the old I just want this to clear up, and get back to normal!!!!!! Amen to that.

There is so much awesome advice in this post by Corrine and all the others, I just had to comment and bring it back up for those who are in need 1 year in.

Slow and steady, this is the time where you will learn ALL of your coping mechanisms -- the ones that will last you a lifetime, and those that you will pass on to others to help them, you will refine them, as the MS refines you, you will rearrange them to adjust to varying phases you may experience.

In the meantime, get your rest, the fatigue is awful. Try to manage it, and don't be afraid to suit up and go out for fresh air, i.e., a walk, as stretch, when it lets up even just a pinch - take advantage of it. Don't overdue it and don't worry if you do - you'll learn your capacity that way.

It's important to keep your body moving. Secondary complications to immobility regardless of the source can does incapacitate people.

Just be careful as you move about, bring someone with you, and if it's real bad, stay in your yard and visit the mailbox on and off throughout the day.

Sorry for your dx, but glad you are seeking others experiences :)
~Shell

[TLC1104]

Hi,
I'm newly diagnosed too (confirmed diagnosis Oct 19th)
It sure is a very surreal feeling!
From new symtoms, lots of appointments to knowing what to do next.
The one bit of positive coming out of dealing with it (only bit at moment) is finding this site.
The advice & support from here is great & so appreciated.
I do hope you are ok.
Maybe we can swap stories of our first year and also finding the 'new normal' again.
Take care.
T

[savvycs]

Cheryl- The first year is definitely rough. I was diagnosed in March; just a few days after my 52nd birthday.  Your emotions kick into over drive.  It is so hard to get your head around the diagnosis and accept it.  My story is not typical.  I never had any symptoms until my trigeminal neuralgia back in the late fall of 2014.  I had every blood test you could imagine and 4 inconclusive MRIs in a 5 month window.  I was initially treated with 5 days of IV steroids.  My facial numbess subsided, but shortly returned.    In the interim, I started to develop balance and gait issues and numbness in my left foot.   My MS neurologist performed a lumbar puncture and order my 5th MRI.  The MRI finally showed cervical lesions and the spinal tap was conclusive for MS. At this point I needed a cane for walking. I was treated again with IV steroids.  My symptoms subsided and then returned. Due to my quick deterioration I was prescribed monthly Tysabri IV infusions.  I totally freaked out; however my 7th infusion is next week.
Aside from the fact that I was in total denial, I obsessed over the diagnosis.  During the past 6 months I have read just about every MS book ever published.  I have also attended seminars, webinars follow a clean organic diet (antibiotic and hormone free lean protein and fish with lots of organic fruits and vegetables, no sugar, no salt, no wheat/flour, no alcohol or caffeine)  I have consulted with 3 MS specialists in NYC and flew to the Mayo Clinc in Florida to consult another.  I went out and bought a balance vest and a cooling vest.  I set up a home gym and joined several MS discussion groups. Needless to say, I have been in a "recover from MS frenzy. "
The biggest stress factor for me is not being able to run.  I was an avid runner since the age of 12 and for the past 40 years I was running 5-7 miles per day.  Luckily my PT is a runner and understands my mindset. She has done wonders with my strenght and balance. I also swim everyday and do hippo therapy.  The horse back riding really helps my balance and gait.  My strength and balance have improved trememdously and I am really starting to feel better.  (Heck some days, I do not use the cane) I have received encouragement, compassion, support and a wealth of wisdom from this group.  They know their stuff.  They have walked in our shoes.    You certainly learn to adjust to your "new normal".   Don't beat yourself up.  This first year has been brutal; however I try to remain positive at all times.  I plan, prepare and pace myself each day.   MS is my/our new marathon.
Good luck...and remember you are not alone!

Gina

[cjtmn]

Thank you, Gina! I took up running at 40, and after never having run even a mile, I went from 0 - 13.1 in about 2 years. Then I let the demands of my job take over -- haven't run a block in about 20 months now & I have put on a TON of weight. Any advice for how to get back to it? Especially now with my Dx? I would like to give it a go, but most days it just feels like too much to tackle. I know I would feel sooooo much better if I was exercising again! You are an excellent role model - thanks for sharing your story.

[savvycs]

Running has always been my stress release and I won't let MS take that away from me.  I too, know all about the demands of a high pressure job and a fast paced lifestyle.

I own an IT consulting business in NY and when I was diagnosed, I decided to take the advice of several group members and cut back my workload and delegate more responsibility to my staff.  

My advice to you is to take baby steps.  The first improvements I noticed were due to my change in diet.  I know that sugar, salt, and caffeine are my enemy.  This is coming from someone that used to drink 2 pots of coffee per day. (yes 2 pots) I now drink green tea.

Start out small by working on some dietary modifications and to try and identify any trigger foods.  You will also drop a few pounds in the process. Diet has a big impact on weight loss and energy levels. Once I noticed my new found energy I went organic.  

My infusion nurse suggested I eliminate dairy and flour and try to follow something similar to Paleo/Swank diet.

When I first started PT, I was still very weak .  I started out with some resistance training. Now I can leg press more than my PT.  My primary focus is to strength my core, and improve my balance and gait. I remind myself each day " I will improve my core, balance and gait today"

Also, fresh air is very important.  If you are able to get out and walk, start with walking.  Fill you lungs through your nose and expel the toxins  through your mouth.  (same breathing as when we run)  Increase the distance when you are ready and able. Rest when necessary.

Isometric exercises can be done while watching TV with your family.  Stretching does wonders for the body.

Try and set realistic goals.  Exercise will not cause additional lesions; only fatigue. I caution you not to over exert or become too overheated.   You don't want to become disenchanted before you really even get started.  (which can happen very easily)

I live between 2 states NY and Florida  so that I can exercise outdoors everyday.    I work remotely at home sitting on a balance ball. (working the core and balance)

I now approach my health as my number one asset.  If I don't have my health, what is left?

There are days when I wake up and my legs feel like they are a thousand pounds each; however I say to myself  "you must get moving".   To relieve the stiffness, I stumble onto my recumbent bike which I keep next to my bed, so that I cannot use it as an excuse for not moving my legs.  I also keep a book entitled Exercises for MS on my end table. (another reminder)

Remember that you are capable! Much of your healing comes from your mindset!  Stay positive!  I know you can do it!  

[Corriel]

Ask away!! If it makes you feel any better, if Plegridy had been available when I started my first DMD, I would have chosen it.

I'll be 45 in April and got my DX just a few weeks shy of my 42nd birthday. My first year was by far the one that I struggled with the most when it came to fatigue. It would take next to nothing for me to "hit the wall" and be down for the count for at least 2 hours.

They say the stages of grief apply to being diagnosed with chronic/progressive illnesses so that would definitely explain any unusual irritability.

It's a lot to get through emotionally and when you throw in the day-to-day things of normal living and trying to understand a disease...Make sure you get some quiet time just for yourself. It's a lot to take in.

Corrie

[cjtmn]

It really does help to know you would have chosen Plegridy. Quiet time is hard to come by with 2 kids and a full time career, but I know it needs to be a priority. Thank you, again, Corrie.

[cjtmn]

Thank you all for your excellent words of wisdom. I really am having trouble wrapping my head around all of this! I did select Plegridy as my first DMD, but I question it all the time.

Honestly, I think I am a little numb emotionally. I'm tired A LOT. I am guessing that is far more emotional than physical. I'm also so easily irritated and overwhelmed these days. Maybe that's being a 44 year old woman, though. Who knows!?!?

I so greatly appreciate the time & care you all took in responding. I will be asking a lot of questions in the upcoming days, I am sure!

Cheryl

[HVAC]

I went through every emotion. I looked for every symptom of MS. I felt guilty for getting sick and causing problems for my husband. I thought he would better off with out me. I had to go to counseling. It turned out my MS stayed stable. All the bad things I was dreading did not happened. I realized I was the same person as before I was diagnosed. When I was diagnosed I already had a lot of nerve damage I did not know was MS. I did go to a MS support group. I woke up every morning as if I had a bad dream then I realized I had MS for real.

My husband had a hard time with it. We went to a couples workshop run by the MS society which helped a lot. It works on communication.

I found out you can other conditions which are not MS. I learned to ration my energy.

I also went to the Happiness matters class (Using the book the happiness advantage) and free from falls given by our local chapter of the NMSS. I got involved in advocacy with the NMSS. I also read Curing MS by Howard Weiner.

Alex

[ConfirmedRachel]

Great answer as always Corrie xx

I was dx this year too after trouble during Jan and Feb, confirmed 28th Feb! It's unusual to get from symptoms to diagnosis, as we have both experienced, so quickly. Many people on the forum it took years and many others struggle on with symptoms and still have no firm cause agreed - our 'limbo-landers'.

I like Corrie, researched myself into oblivion! Just helped me feel more in control of myself at the time, be careful if you are of a similar mind as it can also scare the wits out of you for no good reason! A great alternative is posing questions on here, you will get a response and nothing is too small to ask. We all have similar experiences, but you can be certain, your MS will be yours and your body is unique - so will your MS be.
Grieving for the old you is ok, just make sure to find new things maybe, to keep your life fulfilled and your mind busy. You'll move through things more rapidly.

My own manifests mainly in cognitive issues like short term memory - of anything and everything! Words, mid sentence blanks, names, appointments ... you name it and I'll forget it! So, you learn coping mechanisms, ways round it.

I saw a saying yesterday (just looked it up again!) where a doctor says "the best medicine for humans is love" to which the patient replies "what if it doesn't work" ... Answer "increase the dose"

With MS that can surely help you cope emotionally, but most research will say to start DMDs ASAP.
Due to various delays in the delivery of my DMD I didn't start until 3 months ago - on Tecfidera.
That's a big step as it makes it a big more real. Be sure to speak to your specialist and nurse about how you live, what would be the best option for your lifestyle as well as looking at the treatments themselves. What might be right for you may not be for someone else. All research does point to using a DMD as soon as you can though.

The lovely people on this forum have helped me literally at every step of my journey and for that I am eternally grateful.

My overall philosophy is, if you search for positives, help others where you can and remember to breathe occasionally, you can deal with most stuff. On the days you can't be positive you'll have built a strong loving group of friends and family who'll be only too pleased to repay the compliment.
You've just found a bundle of new friends on here.

Nx

[Corriel]

Well you have asked an awesome question. Year 1 is a roller coaster ride. No other way to put it. A lot to deal with emotionally and physically and it's not uncommon to overthink every new symptom no matter how brief it might be.

You'll spend a lot of time adjusting to your "new normal" and it will be easy for MS to consume your thoughts. Personally I did a ridiculous amount of research to try to understand how my lesions translated to symptoms, what was a relapse vs what was just the disease or a pseudo exacerbation.

My best advice would be to learn what you can about MS (within your own comfort zone) , keep track of any new symptoms that last more than a few days, if you chose a DMD, take it faithfully, and get copies of your test results (MRI, blood work, etc...) in case you need to advocate for yourself down the road with a medical professional.

My first two flares cleared up about 3-5 months after they started but my third and fourth flares were new symptoms completely with none of the old and I still occasionally have those symptoms even though #3 was over two years ago and #4 was 10 months ago.

Everyone's MS is different and Years 1 and 2 will help you determine how yours is, what triggers it, that sort of thing.

I also highly recommend counseling. MS is a complicated disease and affects your life in many ways, it is in your best interest to have an outlet to get out your fears and frustrations and develop strategies to help you accept the dx and move forward. If you have an MS support group near you that is also an option to explore. Do not be afraid to ask for support or to ask questions.

Good luck and many hugs,

Corrie