Hello out there! Well, with this new year I've been doing a lot of thinking. In some ways, I'm disappointed in where I am in terms of progress. In other ways, I'm happy. I've been on the diet since October 2008. In my other postings I've noted what I've cut out and what other foods I've added in to fill the voids. I think it totals about 19 or 20 things so far, many of them entire food groups. But, I find that I can still find plenty to eat--except at lunch which is a little tough sometimes.
Here are my new year thoughts. I'm learning that this is a true journey to improvement. It's not a journey that is measured in weeks or months but one that is measured in years. The Holidays were hectic for me--lots of family involvement, elderly parents to care for and please, small children of my own to enjoy and make the days special for, inlaws, and friends. I had a realization. It was too much. I did the same thing last year, and had the same terrible results. . .complete relapse. By Christmas Eve, I was back to my "in tears" exhaustion. I could barely function as I was swooning with exhaustion, BUT I still had to wrap gifts and leave cookies out for Santa. Christmas Day began with excitement and a bustle of activity by my two young children (ages 2.5 and 4). Then I parked myself in the kitchen for the next TWELVE hours to prepare a Christmas lunch and huge dinner for family/grandparents who would be stopping by. The funniest part??? Three of them didn't even show up and one left before he even ate! Again, throughout the day I was in tears of exhaustion, hands shaking and so on for the rest of the day and through the cleanup at night. I kept hiding in my bedroom to cry so my children wouldn't see me. I told my husband as I flopped into bed that I was NOT going to have another holiday like this again. I started making the calls the very next day. I told family that I would have to do Christmas differently next year, even if it angers or insults them. I would be spending Christmas Eve and Christmas Day with my husband and children ONLY to make their day and OUR day the best. I would make a simple dinner for just us--lobster tails are special and easy, they're on the program, and they can be made in the last hour of the afternoon. Some people were somewhat receptive and understanding. Some were not. They will be angry at me next year, which feels horrible. But I learned a valuable lesson in this. I had experienced a good amount of improvement. I have been working extremly diligently on my battle against MS this past 1.5 years, and I lost a lot of my health over the holidays in making others happy and well cared for. The one who wasn't cared for was me. The lesson is that some of our decisions may be difficult but they have to made all the same. I will NOT spend another holiday crying when, instead, I could be laughing with my children and enjoy the magic that they see.
And so I've learned that this is a battle to be measured in years, not months, weeks, or days. It is an ongoing process, and that's okay. This is a new year, where we need to continue to drive forward in a positive direction, in an old and familiar battle. I've learned that others (even family) sometimes don't really REALLY understand MS and what it feels like. That's okay, too, even though it hurts. I DO know what it feels like and what I need to do. The good news here is that only two of my holidays were really wasted in MS hell. My children are still very young. It feels good to know that I will NOT waste another holiday in the same state. Others may be angry, but I'll have to stand strong in knowing what I have to do. I've even gone to the extreme of writing myself a note in my Christmas ornament box telling myself what NOT to do next year! Just a little reminder and moral support for myself for when I become the black sheep next holiday! How funny is that?!?
On foods, I'm giving up a couple more things. All along I've continued to enjoy two things: one Diet Coke with Splenda each morning. Ahhhh. I'm giving it up for a cup of green tea and a nice cold fizzy LaCroix sparkling water. The next thing I'm giving up is my dear red wine on a weekend. It contains brewer's yeast, which is a high reactor for my sensitivities. I'm giving it up. WOW! That one is a toughie!!!!! Painful! But I'm really going to try. I've noticed direct symptoms the day after a dinner out with wine. Now why am I doing all of this hard work and not eliminating a most obvious offender!?!
So, it's a journey. If measuring success in years, last year was my year to learn as much as I could about foods, their triggers, supplements, symptoms, and so on. This year is my year to HALT the progress of the MS. I'm looking forward to it. . .one yearly step at a time! ; )
Happy New Year to you all!
I'm right with you on the
I'm right with you on the sleep issue! It makes a huge difference. It used to be sort of amusing to me and I would push it, and push it and push it. Now I have a rare night when I "cheat" but I always pay for it, and regret it. It's interesting to me the number of things that MS has pushed to the wall, from being smallish issues when I was younger (and healthier), to being a pretty big deal now. Ah, well... it is what it is. And it makes me sorta mad too, but there's not much we can do about it, as you observe.
I've been keeping a food journal for a couple of years now, and it helps a great deal to keep track of how I'm doing. I also find that I think about it more when I'm going to write it down. About what I'm eating, and about how I feel about it all. And since eating can also be emotional, that's a real help.
Good to hear the bike is going well! It's very frustrating to have to stop after just a few minutes (I have the same issue), but I remind myself that 5-7 minutes is better than NO minutes, and I'm in this for the long haul.
Hi there again! I just
Hi there again! I just wanted to post quickly that I have purchased an exercise bike. It is a simple one--not a lot of fancy gadgets that I really don't need. It is in my living room, and I actually used it for the first time this morning. My legs felt like thick lead when I woke up, so I thought to just try something different and get on the bike to move them a bit. I did 10 minutes, which was probably a little bit too much--could have stopped at 5-7 minutes, but I could feel the blood moving through them. That seemed like a good thing. I also noticed a weird and related effect--my hands felt light and almost like they were going to go into tingling, but they didn't completely. I think it was just getting the blood moving, after not really moving like that for a while. So, I opened up my journal again to log the beginning of my exercise. I plan to continue on the bike, even on the "moving through quick sand" days to see if I can move that feeling through and away from my legs, rather than just giving in to it all day. On diet, I've been doing okay, but I think I've been lax on watching my fat intake--both adding enough healthy oils and taking in too much fat overall. I've recently gained about 5 pounds, which is a key that I'm not metabolizing correctly. Getting back to my journal will help with that. I'll let you know how this exercise thing works out! It's been about 3 hours since I did the bike, and while my legs still feel tired they do NOT feel thick. One other thing: I've found that getting to bed early is ABSOLUTELY key! I've been cheating myself on much needed rest. It's soooooo hard to go to bed at 9 p.m. or so. I miss all of the fun TV. I miss the lounging in the bathtub with a magazine time. BUT I absolutely need that time in bed--not in front of TV or the computer--to make the next day more meaningful. AND if I am going to continue to ease into my exercising, then I must have that rest. Honestly, it makes me sort of mad that MS takes such simple things away, like watching TV at night, but I need come to grips with and get over that and enjoy the better day that will follow. So that's it. . .I'm continuing on this journey one step (or bike pedal) at a time! ; )
It's helpful to read what
It's helpful to read what others are up to, and how it's going. Thanks to you both for posting. I've had a good week, but I'm very new to this particular way of thinking about my diet and activity. I've been on a more general healthier path for a number of years now, but getting serious about the way I eat and exercise specifically to reduce my ms symptoms is new. Lots to learn!
Hi Sarah Soprano4! Your
Hi Sarah Soprano4! Your comments regarding excercise are VERY helpful! You have a full routine that you are doing. I'm very impressed, and it gives me motivation. I have a NordicTrack in the basement that I used to use a lot when I was younger--about 15 years ago to be exact. It's been in storage mostly since then. I was thinking of bringing it out, but it's a pretty strenous workout and I just don't know if I could do it without knocking myself down again for a few days. So, it remains in the basement. Instead, I've been possibly considering an exercise bike. I was thinking of it for the very reason that you mentioned. . .it would be excellent for getting the blood moving but not so strenous in having to support my entire weight and push my all-too-sensitive muscles too far. I'll give it some more thought, but I think it may be the way to go. I would only start at 5 or 10 minutes at the most at first. I'm still struggling with getting my stamina up again after the holidays (if you can believe that!). The good news is that just in the last day or so I've felt that heavy fog start to slowly lift. It's coming back, but it's a sensitive uphill comeback. I may also look for some yoga like you mentioned that is more for MS people. I'll do some surfing and see what I come up with. It's so hard to imagine finding the energy to do all of this. If I can get some sort of easy tension exercise bike and just start there, I'll be doing good. Thank you again for your exercise info. It was helpful! I'll keep you all posted!
Hi again justme, apologies
Hi again justme, apologies for not replying sooner, but we have had visitors staying for the last week, so been hectic in the Johnson household yet again!!! Slightly strayed off the diet due to the fact i couldnt face cooking 2 or 3 different meals everyday, but i stayed away from the demon alcohol, and ive lost an extra couple of pounds, so im definately heading in the right direction!!!!
Exercise is so important, and yes like yourself its where i fall down, but im motivated now and ready to get stuck in. I always feel instantly better when i start a routine, but struggle to continue, usually due to being too tired to do it!!!
I have practically a full gym in my spare room, so shouldnt have any excuses!!!
I start off with 10 minutes on an exercise bike to warm my muscles up, this is very important as you should never attempt any form of exercise without doing so, as you can injure yourself. I then do about 10 minutes on a vibro plate, this is an excellent piece of equipment and can be used even if you are in a wheelchair. After this i use an abdominal roller and do 20 repetitions, then 20 pressups. I also use a gymball and resistance bands. Remember, only do as much as you feel comfortable with its not quantity, but quality. Yoga is excellent,have a scout on the internet for suitable dvds, its a great form of exercise and relaxation, i have one that is tailor made for ms and all done lying on the floor.
Keep me posted with your progress and thank you for your kind words.
Regards Sarah.
Hi again Sarah, The
Hi again Sarah, The stressful and terribly upsetting events that you had to go through last year would lead anyone to stray off of the diet. I'm so sorry to hear about what happened to your brother in law. You had mentioned in previous posts that you had suffered a loss, but with it being so sudden and with such awful decisions that you and the family had to make, it's just too much. Hopefully this new year will bring to you only good things and reasons to look up. It's great to hear that you're feeling better already after just 8 days back on track. I'd like to propose a "pact" of sorts. It's easier to know that you're not alone in things, so if I know that you and others are trying hard, and if you and others know that I am trying hard, then we'll find more strength in numbers--even though we're an ocean away! haha. On my progress, I'm still recovering from the holiday situations. It's amazing how much a few weeks of stress and doing too much can really knock you back. I'm still not where I was before the Christmas rush. Like you, I'm going the more strict route. It works best and brings me to better results. Today, instead of my long-loved Diet Coke in the morning, I had a cup of green tea and a sparkling water. It was okay, really. I will miss it, but I can do that I think. The wine??? Well, I already goofed on that one! My husband and I went to dinner and I had two glasses of wine! Good thing it's early in the year, eh? I've still got lots of time to regroup! I did notice an increased feeling of walking through quick sand the next day, which I know is directly related to having a drink. Hmmmmm. . .I'll try again this weekend to keep it in check. SO, I'm with you on that one! I saw that you mentioned exercise. This is definitely where I'm lacking. What are you doing for exercise? I was thinking of getting some yoga tapes or something to try to use at home. Any other ideas from anyone else would be greatly appreciated!
Hi Just me. Oh i so
Hi Just me.
Oh i so sympathise with you, i absolutely dread christmas, and yes,however much our families care about us, they really have no idea what it truly feels like to have a body that wont do what you want it too!!! If like myself you always have a smile on your face and get on with things, they dont have a clue!!!
A prime example this week, im English, and our country is in the grip of the worst weather conditions in a long time, so i havent dared go out in case i fall, but my sister text me to say she had my husbands birthday present and did i want to "bob over for it" ermm hello? its snowing and icy out there and im on crutches NO!!!!
That aside, they will do anything for me but it really is a lack of understanding.
Thank you for your comments after my last post, it`s great to see everyone back on here, and you will be pleased to know, that after just 8 short days of being back on track im feeling tons better, so it just goes to show it does work.
I`ve concentrated mostly on my diet this week and cutting out alcohol. I`ve chosen to go down the mostly strict route, because thats what seems to work for me, pretty boring, but i can`t continue to go downhill as i was after feeling so well.
Stress is terrible and creeps up and does it`s damage without you realising.
I had been trying so hard to help my husband and my family through the sudden death of his 45 year old brother, a totally devestating time as we were all called to the hospital after he suffered a massive stroke, and basically had to turn his life support off and watch him die, an experiance i would`nt like to wish on anybody.
Add to that, my alcohlic mother-in-law understandably relapsing after being sober for 18 months and im practically ready for the lunatic asylum, but she`s back on track,and after 7 long months, we can finally begin to return to some sort of reality.
Next week i`m beginning my exercise again, so i promise to keep you posted on my progress, and look forward to hearing of yours.
Kind regards Sarah.