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5 Months In...and still a bit of a mess

Apr 27, 2016 - 7 comments

April 18 was my 5-month anniversary of my RRMS diagnosis. I've also been on Plegridy now for almost 3 months, which continues to be a massive adjustment and source of frustration. I'm sticking it out for another month, but I may just have to kick beta interferons to the curb.

In fact, I find myself fighting hard to just ignore everything that has happened since September 2014. I'm really (I mean REALLY) good at denial. I find I don't participate on the boards very often. My experience is new so I have little to offer others by the way of advice AND my remaining questions (I think) probably come down to personal choices vs. advice or experience. I'm also on the verge of giving up on my DMD - and frankly, I don't want to take a different one. So, if I skip taking the meds and I stop checking the boards and I just go back to trying to live a normal life without illness...can I live like none of this ever happened? It was 7 years in between bouts of double vision. Maybe I can get another 7 symptom-free? Or now that we see this thing on the MRIs and have 14 o-bands swimming around in my CSF, does everything really have to change? Do those physical signs mean progression that I cannot un-know or un-do? But what if I just start trying to live every day as a happy, healthy, unsick person? Can I "fake it til I make it?"

I read so many stories about people who are managing their MS through diet and lifestyle changes alone. I don't know if they continue to be monitored by a neurologist or not. But they claim to feel better than ever. Guess what? I want that, too. Who on this board doesn't want that?

I post this for everyone out there still working to accept this illness. It is not an easy road and with so much unknown, doubts are going to plague us about finding the right course of action to manage this thing. I'm not there yet - still smack in the middle of Year 1 - but I'm working through it. Nothing with my MS has been fast. I guess acceptance won't be either.

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5265383 tn?1483808356
by aspen2, Apr 27, 2016
I think clean diet and lifestyle are really important .. but I've heard too many stories on paleo and Wahls boards no relapses ... UNTIL a biggie.  Yes, you feel better than ever because improving diet and fitness level is always good :).

I'm grateful for the chance to take a DMD.  If it's any consolation, I asked my neurologist about Plegridy and he said the flu reaction tended to last longer (everything about it is sustained release).  Perhaps you should try a different DMD?  I'm   I taking Copaxone, and have very little issues with it (purely minor site reactions which are improving as I know how deep to inject).  NO side effects otherwise; I wouldn't know I was taking a med.  I have a friend taking Tec who has only had a bit of flushing.

While in limbo I spent a great deal of time "faking it" until I made it.  i didn't find it particularly helpful, unfortunately.  However I've had a much more active situation than you .. I'm not sure what I would do in your shoes.  I already have permanent disability -- the thing I didn't want in limbo .. and had I been given the chance to have treatment 2.5 years ago I would have jumped at it.  You mainly feel fine .. which would make taking a DMT that tends to make you feel unwell a problem.

I understand .. it's not an easy road.  The one thing I realized today -- I thought it would just be about accepting ms -- that having the diagnosis would make it all easier.  I've been struggling with a new sx since my last relapse that is awful -- and I realize it's the relentlessness of new and different things that makes it difficult, whether or not you have  dx.  Plus choices like you are looking at now - DMT or not. yes I know WHY I have episodes of weirdness.. doesn't make it easier to continually have to process and come to terms with all the different elements of this thing called ms.

I melted down slightly at my gps office this week when he suggested I get online and look up physio exercises to help ... I just looked at him and said, "I've been trying to fix myself for three years.  I am SO DONE.  I want to move on and enjoy life and not be on the computer trying to figure my stuff out."

(((Hugs))).  Everyone says the first year is the most difficult ... we're gonna get through it.



11079760 tn?1483386130
by cjtmn, Apr 28, 2016
Thanks for your insight! I wish I felt fine, but unfortunately I feel pretty awful most days. I am blessed to not be disabled, yet I struggle to get through each day and then lie awake at night with very little sleep. Mental more than physical? Maybe. I'm working on that, too.

Copaxone may be my next move. I just hate the idea of injecting multiple times a week. I'm no needle-phobe. It's the constant reminder that I have MS.

I think I'm in the "I am so done" boat. Ready to just live my life and find some joy again. This, too, shall pass!

5112396 tn?1378017983
by immisceo, Apr 28, 2016
I'm a contented person and most of the time I don't feel like I have an illness. Most people would never guess. But part of being able to put my MS into a compartment of my life (as opposed to it taking over) is being on my meds. You're absolutely right - it's a very personal choice. My first year included a fair amount of denial too. Couldn't they have gotten it wrong? But no. I have this condition, it's not going away, and choosing to take medication helps me psychologically as well as (hopefully) physically. I'd personally feel in free-fall if I didn't combat things medically.

I also spent an obsessive amount of time on the internet in the beginning. My diagnosis came out of the clear blue sky, so I had a lot to get up to speed on. But it became unhealthy and compulsive. Another piece of the puzzle for me was reaching out for psychological help. CBT and my SNRI (anti-depressant/anti-anxiety medication) helped to get these things in check. So did getting a fulfilling hobby, which sounds simplistic but was actually key to improving my well-being.

Our MS doesn't go away, but I was able to get it out of the forefront of my thoughts. Life's been a lot better since. I wouldn't want to repeat that first year for anything. It's tough. There's no denying it.

11079760 tn?1483386130
by cjtmn, Apr 28, 2016
I've leaned very much on your story, immisceo. I am really pushing for the day when I feel I've gotten to where you are with all of this. Thanks for all of your responses. They have really helped me.

15288417 tn?1446902183
by TLC1104, Apr 30, 2016
Hi,
I'm in the first year too.
I'm 6 months in.
I read your post, I honestly felt like I was writing it with you.   Almost all was similar to you and how you are feeling.
I'm at the 'when will it go away' stage. I too am thinking, they must have got it wrong, (denial X 100%) and the doctor will come & say 'ta-da' all gone! (not yet though eh!)  
I'm very much trying to accept what is happening,  but it is hard! We'll get there though!
This forum is one of the places that I can come to and know that I'm not going to be judged for having a bad day, and also,   even just reading different posts, it helps!  
I tend to hide how I'm feeling to a lot of people,  my new phrases at the moment are  ' I'm fine thank you'  and also 'it is what it is'
I haven't decided yet about the dmd's, that is the one thing that is scary.

I hope you don't mind,  I've taken insight from the replies you've had too, can i say thank you to them. ;)

As much as we are still on a first year roller coaster, hopefully we'll get to a point where we can say,  this is how it's going to be to get through it!
I do hope you are going to be ok with the meds situation.
  Take Care.
Tania.




11079760 tn?1483386130
by cjtmn, May 02, 2016
I teared up reading your reply, Tania! While I feel awful knowing what you are going through, it feels good to know I am not alone. Others just don't get it, so yah, I also use the "I'm fine" line A LOT.

The DMDs are so difficult to figure out. Without a magic machine to know how things are going inside, it feels like torture putting myself through all of this every other week without knowing there is some positive benefit. I will give it another month - that will be 4 months on full strength - then decide if I continue or try something that works better for me. While I want to ditch them all together, I also know I wouldn't forgive myself if a major relapse takes my mobility or eyesight or something else that permanently impacts my family and I didn't at least try to mitigate it. In rare moments of calm, I remind myself of that - THEY are counting on me to do everything I can to fight this.

I have been continuing to mess around with my diet and have learned that both wheat & dairy make me feel awful. I haven't completely cut out either, but only consuming on a very limited basis - and not every day. I am also finding that sugar is bad for me, too. Again, I'm not being a fanatic (e.g., I still use salad dressing in moderation, I still eat red pasta sauce, I still have a small amount of non-dairy creamer in my coffee...all have added sugar), but by greatly reducing my intake, I have felt better. So I guess the trial & error continue. Baby steps.

Please drop a line once in awhile to let me know how you are doing. I really value hearing from others who are going through this, too, and don't always feel like the boards are the best place to air out feelings - which is why I've started using the journal space more.

Cheryl

15288417 tn?1446902183
by TLC1104, May 02, 2016
Hi Cheryl,  
I firstly apologise,  oops from me ;) making you teary.  Sorry. I got choked up with yours too. What are we like!
The DMD's are really frustrating me at the moment.
I can only imagine what you are going through,  being in yhe position you are. Let's hope it sorts out for you.
The two that my consultant has pin pointed for me, Tysabri and Lemtrada. Tysabri being the one he would go to first. The only thing I'm concerned about is that after my bloods came back,  I'm high level positive for the jc virus, this brings more of the side effects into play,  at the moment I don't want to put myself in a position where if anything happens to me, I'm not here for my boys.  It's just been my 2 boys and myself from a young age and as much as I have to concentrate on getting this sorted,  I've got to be there for them first!  I've asked for another appointment with my consultant to see if he has an alternative for me. Hopefully he will have answers soon.
We protect our family first, but also make sure we are still around to do everything they need from us.
It's a pain to think how much it has impacted already on them, just the fact that I'm not as mobile as I used to be is a pain,  I was very much the ' don't stop' mum, haha.  I've got one going to university this year,  and I'm still not driving,  But I've told my son,  the one thing I'm definitely doing, is getting a different car, and I'm going to be the one that takes you to start your university life.  
This is what I did for his brother when he went to university.
I will definitely catch up,  and ditto for you too.
And thankyou.
You take care.
Tania.


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